Myeloma Hope

Not Boring

2012-01-14T18:05:00.004-06:00

Doctor Visit 2012 January 12

End of the 50th Cycle of Pomalidomide (CC-4047):

Stable after 50 full cycles. That sounds really boring, but I'm never bored. Every 28 days I go to Mayo Clinic and have blood drawn. The results show up in a couple of hours, and during all that time I'm a little stressed. Then I obsess about the results: were they down, or were they really up? This time I'm going to write about it, without obsessing, and then forget it until next month.

The two major tumor markers are both up. IgG went up almost 20%, from 999 to 1190 mg/dL, and M-spike rose from 1.1 to 1.2 g/dL. That sounds bad, of course, but both numbers do jump around and IgG is still below other recent values. M-spike is as high as it has been recently, but 1.2 g/dL (1200 mg/dL) is actually an impossible value, because it's higher than IgG, so I won't worry about it. I say the myeloma markers are still stable. Whether it makes any difference or not, lambda light chains are down, kappas are down too, and the ratio is unchanged, so that's probably good.

The best news is that calcium came back down from 10.3 to 10.0 mg/dL, below the top of the reference range. Normal. So there is probably NOT a lesion burning a hole in a bone somewhere. We had scheduled an X-ray bone survey for today, but cancelled it. We'll do it in March as part of the annual bone exam.

Some Recent Test Results:

Test	Oct 19	Nov 17	Dec 14	Jan 12	Remarks
M-spike g/dL	1.1	1.1	1.1	1.2	\ Tumor marker
IgG mg/dL	1310	1280	999	1190	/ Tumor marker
Lambda mg/dL	2.75	2.12	3.15	2.24	L Free light chains
Calcium mg/dL	10.0	10.3	10.3	10.0	Normal
Creatinine mg/dL	1.1	1.1	1.1	1.0	Kidney, OK
HGB g/dL	14.6	15.0	15.1	15.1	Hemoglobin, OK
RBC M/uL	4.07	4.18	4.17	4.36	Red cells, normal
WBC K/uL	4.8	5.3	4.8	4.8	White cells, normal
ANC K/uL	2.30	1.70	1.90	2.40	Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Lunch salad - there's a bed of romaine under there. Organic beets, organic broccoli, roasted organic sweet potato, and the meat is a little leftover ground beef:

Still Stable

2011-12-24T20:06:00.003-06:00

Doctor Visit December 14, 2011
End of the 49th Cycle on the Pomalidomide Study
The news is pretty good, I'd say, though a little confused. IgG dropped to 999, from 1280 mg/dL last month, a whopping 22%, but M-spike remained the same at 1.1 g/dL. As I understand the relationship between IgG and M-spike, this is an impossibility and represents an error (or a tolerance) in at least one of the two tests. I prefer to believe IgG.

On the other hand, if it matters, Lambda light chains popped up from 2.12 to 3.15 mg/dL, a pretty big jump, and now slightly above the top of the reference range. Kappa light chains went up a similar amount though, so the Kappa/Lambda ratio declined only slightly. I suspect a testing anomaly there, and anyway I'm not sure of the significance of light chains in my case.

The only real concern is calcium, which is 10.3 mg/dL, slightly above the top of the reference range, 10.1. The reason for the slightly high calcium is unclear, and worth investigation, because it could indicate a hot spot in a bone somewhere. Or it could indicate poor hydration, which is also believable. Calcium was high last time too, and Dr LH and I had agreed then that if calcium was high again this time she would schedule a skeletal survey for the next trip. It has been scheduled. Meantime, I have no bone pain anywhere and hope that nothing breaks.

As I write this, we are sitting in Mayo Clinic waiting for the new prescription of pomalidomide, for the 50th cycle of the study. When we have it in hand, we're off cross country to a marathon in Delaware. This may not get posted until we arrive there and have a little time.

Note: In fact, it didn't get posted until we finished the marathon, got back home, and caught up on some other things. Now 61 marathons in 42 states since diagnosis.

MERRY CHRISTMAS!
Some Current Test Results:

Test	Sep 22	Oct 19	Nov 17	Dec 14	Remarks
M-spike g/dL	1.0	1.1	1.1	1.1	\ Tumor marker
IgG mg/dL	1020	1310	1280	999	/ Tumor marker
Lambda mg/dL	2.49	2.75	2.12	3.15	L Free light chains
Calcium mg/dL	10.0	10.0	10.3	10.3	High
Creatinine mg/dL	0.9	1.1	1.1	1.1	Kidney, OK
HGB g/dL	14.9	14.6	15.0	15.1	Hemoglobin, OK
RBC M/uL	4.09	4.07	4.18	4.17	Red cells, low
WBC K/uL	6.2	4.8	5.3	4.8	White cells, normal
ANC K/uL	2.60	2.30	1.70	1.90	Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Christmas season lunch. All organic:

ASH Conference Post # 6 - New Myeloma Therapies

2011-12-13T18:26:00.004-06:00

Monday at ASH seems to be the day that most myeloma papers are presented. I spent several hours listening and taking notes.

Dr. Andrzej Jakubowiak

In this study, carfilzomib was combined with Revlimid (Rev) and dexamethasone (dex) for newly-diagnosed patients. Carfilzomib was administered twice weekly, dex decreasing from 40 mg/wk.

After treatment, 100% of patients reached very good partial response (VGPR), which is simply amazing. 79% reached near-complete response (nCR) or better after 12 cycles. Side effects were low. The study is still young, but all patients are still alive. This is a very encouraging study. In the authors' opinion, "These results compare favorably to the best frontline regimens in MM." Who can disagree?

Dr. Paul Richardson

Dr. Richardson pointed out that two previous studies have shown that pomalidomide (pom) is active in patients for whom prior therapies have failed, including both Rev and Velcade. This new study was intended first to find the maximum tolerable dose (MTD), and then to determine progression-free survival (PFS) and overall survival (OS). Patients had lots of prior therapies.

MTD was found to be 4 mg, 3 weeks on, 1 week off.

Pom was studied as a single agent and with dex, and pom/dex was found to be quite superior to Pom alone. To quote my own doctor, "everything works better with dex." PFS was just 4 months for these patients, whose myeloma had become quite resistant prior to this study. OS was short too, but this is no surprise with such heavily pre-treated patients.

Dr. Tomer Mark

Clarithromycin (Biaxin) is an existing approved drug which has been shown to add a significant anti-myeloma benefit when added to the combination of Revlimid and dex. So they tried this with Pom.

Enrolled study patients were resistant to at least three prior therapies, including Rev. The median number of priors was actually five, with many patients over 10. Also, many of the patients were "high-risk," meaning that their myeloma was particularly aggressive.

Despite those odds, almost 70% of patients got a clinical benefit, and 61% were progression-free after almost seven months. This is a very impressive result!

Dr. Yi Lin

Almost ten years ago, Mayo Clinic began a study of a myeloma vaccine made with the patient's own myeloma cells, administered after an autologous stem-cell transplant (ASCT). Today's paper reported the final results. The vaccine provided no advantage in progression-free survival, but did provide a two-year advantage in overall survival. This is counterintuitive, and the subject of ongoing discussion.

Dr. Xavier Leleu

Study compared two different pomalidomide dosages: 4 mg for 21 days of 28 versus 2 mg for 28 of 28 days. Arms were randomized. Most patients were heavily pre-treated (many prior therapies), and many were refractory to Revlimid, or Velcade, or both.

In both arms, about 35% of patients achieved a response. The author concluded that 4 mg 21/28 was superior to 2 mg 28/28. I could not find much justification for that conclusion in the data presented, but he is the doctor and I am most definitely not. The author also stated "This study provides further evidence that pomalidomide has no cross-resistance with lenalidomide ...". I'm not quite certain that his data quite supports that far-reaching conclusion either, but I hope it's true.

Dr. Ravi Vij

Dr. Vij reported on an early study of carfilzomib as a single agent (no dex). Patients had never been treated with Velcade, but had relapsed from as many as four prior treatments. Twelve cycles of carfilzomib were administered. Roughly 60% of patients had a good response.

Carfilzomib has been submitted for FDA approval.

Dr. Paul Richardson

Panobinostat is an oral pan-deacetylase inhibitor which can create defective proteins within a cell (my interpretation). Velcade can prevent the cell from clearing proteins like that, and the two can work together to persuade the cell to die.

Patients were heavily pre-treated, and still the treatment of Panobinostat/Velcade/dex proved effective for about 50% of them.

Perifosine plus Velcade and dex in heavily pre-treated patients, including patients for whom Velcade has failed. Perifosine attacks tumors in a new way, and was known to be synergistic with other drugs. It is an Akt Inhibitor. They wanted to find the MTD, and then the efficacy.

41% of patients achieved a useful response, but some subgroups were much higher. Median OS was 25 months, and 37 months for people who responded well. This is evidence that perifosine can overcome resistance to Velcade in some people. There is now a Phase III trial recruiting.

Dr. Shaji Kumar

MLN9078 ia the first oral proteasome inhibitor to be evaluated for treatment of MM. This study was to determine the maximum-tolerated dose (MTD) of MLN9078 as a single agent. Patients had at least two prior failed therapies.

Conclusion: Dosage has been established, and the drug clearly seems to work, even as a single agent, and caused little or no neuropathy. A doctor near me offered the opinion that MLN9078 shows a great deal of promise and, eventually, might even compare with carfilzomib. If I were on Velcade, getting infusions in a clinic, I would much prefer to take this drug instead, at home, and also avoid the risk of painful neuropathy.

This is the last post from ASH. We're home in Minnesota now, and soon heading off to Mayo Clinic for my regular 28-day checkup and then off to a marathon in Delaware. State # 42 if all goes well.

ASH Conference Post # 5 - How Novel Is Novel?

2011-12-12T01:09:00.000-06:00

New Novel Drugs:

As everyone knows (?), the "novel" drugs used in treatment of myeloma are thalidomide, lenalidomide (Revlimid), and bortezomib (Velcade). This trio has revolutionized the treatment of myeloma in the recent few years, probably almost doubling the survival time of newly-diagnosed myelomiacs.

But there are more new drugs coming, lots of them, with carfilzomib and pomalidomide leading the pack. From an outsider's view, those two are about equally potent and equally close to FDA approval. Both are hugely successful in treating myeloma, often even in patients for whom the novel drugs have failed. Both have successful Phase II trials to recommend them, but neither has a Phase III trial.

Onyx has submitted carfilzomib for FDA review and requested priority review. The FDA has accepted it for review, but declined priority review, so it could take until summer. So far. Celgene has not yet submitted pomalidomide for review, but according to one source, may submit it by the end of the month.

These two could be FDA approved within a year. Then which are the novel drugs? Do we have a cast of five, or two neo-novel drugs and three post-novel drugs? I'm sure someone smarter than me will figure out how to classify them.

Pomalidomide Study:

Long-term Outcomes of Pomalidomide and Dexamethasone in Patients with Relapsed Multiple Myeloma: Analysis 4 Years After the Original Cohort

This is the study that I am in. I started taking pomalidomide three years and nine months ago. Most of the patients enrolled in the study were sicker than me, in Stage 2 or 3, where I was in Stage 1. Many had lots of prior failed therapies. Nevertheless, half of the standard-risk patients (like me) remained progression-free for at least 18 months, with a 2-year survival of 85%. Twelve of the original 60 patients are still on the drug - I am one of those, about to complete Cycle 49. I can stay on it as long as it works. Here's hoping.

Cornucopia of New Therapies:

Dr. Robert Orlowski, a well-known myeloma expert, used that phrase Friday night. I love it and will definitely quote him at my next support group meeting.

I get an overwhelming sense of hope at this conference. Things are really happening. Just today I counted 80 posters on myeloma alone. In the three days of poster talks, I suppose there will be 200 to 250, just on myeloma, each representing serious scientific research. Not all, maybe even not most, will be investigations of new treatments, but many are. All of the papers advance the science significantly.

Treatment options are expanding almost daily. There is SO much hope this year - stay alive for it.

ASH Conference Post # 4

2011-12-11T12:22:00.008-06:00

At the Conference of the American Society of Hematology (ASH), there is a huge room filled with rows and rows of poster boards, showing posters on both sides. Hundreds (thousands?) of posters, and they are changed every day to a new set of posters. Each poster shows the work of a researcher or perhaps an entire research center.

I walk through those in a bit of a daze, with no idea which poster might represent a future treatment. Some posters show the results of long studies providing valuable information, and some are just good ideas that seem to work in concept but eventually may not work out. But one of those good ideas caught my eye, titled Myeloma Exhibits Dependence on Atypical Glucose Transporters: Targeting MCL-1 Through GLUT4 Inhibition.

I'm not a medical researcher and most of the medical terms mean nothing to me, of course, but the story here is that it may be possible to starve the sugar-hungry myeloma cells by finding a drug that targets GLUT4, one of several glucose transporters. When that is done, the cells die. To prove the concept, they used an FDA-approved HIV drug called ritonavir, which inhibits GLUT4 as a side effect of other actions.

The researcher, Mala Shanmugam, PhD, of Northwestern University, believes that it might be possible to develop a drug which would target GLUT4 directly.

Here is yet another avenue of attack on myeloma. We've seen a "cornucopia of new therapies" already, and there are more on the horizon, including this one. There is a LOT of hope here - please do stay alive for it!

Typical poster, one of zillions:

ASH Conference Post # 3 - Myeloma Questions and Controversies: New Developments in 2011 that Impact Diagnosis, Prognosis and Treatment

2011-12-09T23:40:00.004-06:00

The International Myeloma Foundation (IMF) presented their usual excellent review of current clinical practice in myeloma. Most of the attendees were hematologists. 20% of the audience managed more than 50 patients annually, and another 30 percent managed more than ten.

Dr. Vincent Rajkumar:

Diagnosis and and Prognosis:

The doctor who suspects myeloma should do SPEP, immunofixation, immuglobulins, and free light chains. All of them are necessary, because none of those tests will catch all presentations of myeloma.

Doing a free light chain test on urine eliminates the need for the 24-hour urine test.

Myeloma is not in Stage 1 (active) until at least one of the CRAB symptoms is present. Calcium, Renal (kidney), Anemia, or Bone. But if the percentage of plasma cells in the bone marrow is high, say 60%, the disease should be treated as if it is active myeloma. All such patients will progress.

Prognosis depends on tumor burden, aggressiveness, patient performance (age), and other health factors, such as kidney health. Tumor aggressiveness is usually estimated by cytogenetic tests. Response to initial therapy is also an important prognostic factor, though sometimes a patient who responds most rapidly will also have the fastest relapse.

75% of all myeloma patients are normal-risk and have a median survival of 7-10 years or more. High risk, defined by cytogenetics, have a median survival of 2-3 years.

Dr. Jesus San Miguel:

Asked if a cure is possible in MM: The audience was evenly divided. How important is CR?: Nearly everyone thought it was important. He believes that the better the quality of response, the longer the survival.

Q: If a patient achieved a CR on the transplant conditioning regimen, should the transplant still be done? 73% of the doctors in the audience said yes. Hmmm.

Trials are now addressing the question of transplant upfront versus transplant at the time of relapse from initial therapy.

He believes that intensive frontline therapy, such as SCT, is preferable to a more gentle treatment with one therapy at a time. Your blogger knows that this is a hot topic of controversy.

Can novel or intensive approaches overcome high-risk prognosis? 71% said YES! He said they were wrong. The outcome can be improved, but the prognosis cannot be overcome. Trick question? Maintenance therapy after SCT can also improve the outcome, but high-risk patients will not achieve the same OS as standard-risk.

Allogeneic transplants, using stem cells from a donor instead of the patient's own stem cells, may be an answer for patients who achieve CR and then relapse almost immediately. A study is needed. Last thought: Myeloma is not a single disease. Individualized treatment is needed.

There is no problem giving a transplant to a patient between 65 and 70 if the patient is sufficiently fit.

Dr. Antonio Palumbo:

Treatments for elderly patients. Options:

The new combination of Melphalan/Prednisone/Velcade got the most votes for initial therapy. The actual patient got a "perfect" CR. Now what? 53% say complete six cycles of MPV. He actually was given nine. What now? 35% said no maintenance, others split among different types of maintenance. How long do we continue it? (6 mo to 24 mo, or until progression or unacceptable toxicity). Doctors chose maintenance until progression or until unacceptable toxicity.

He believes in aggressive therapy up front, while the elderly patient is still strong, and then maintenance to maximize progression-free survival (PFS) and overall survival (OS).

Dosage may have to be reduced for elderly patients, because therapy may be more toxic to them. Once weekly should be the standard for Velcade, not twice. Is he still giving Velcade twice a week to other patients? Ouch, says your blogger. Subcutaneous injection was not mentioned but may be preferable, also says your blogger.

Elderly patients who achieve CR and have no other serious ailments, have a 70% chance of survival to five years.

MPT is the current standard of care. He talked a lot about melphalan, and thinks that two- and three-drug combinations with melphalan are the standard of care for the elderly.

For unfit patients, 37% of myeloma patients, the "standard" therapies are often too toxic. He gave a chart of reduced dosages, and it was clear that the practitioner is left to make the choices.

I'm glad he is not my doctor. I think that doctors in the USA are more likely to offer the novel therapies to elderly patients like me, rather than sticking them with elderly therapies.

Phillippe Moreau:

Consolidation and Maintenance after transplant, for young (less than 65) patients

The audience voted on several maintenance options, including none at all, and most chose consolidation plus maintenance. Consolidation is usually a brief, fairly aggressive therapy given after the SCT, to further reduce the tumor burden, and maintenance is a long-term treatment, often using a small dose of a single therapeutic agent such as Revlimid or Velcade.

The audience was asked what is the best available consolidation therapy? One of the choices was a second SCT. Result: The audience thought that a triplet therapy such as Velcade/thalidomide/dexamethasone (VTD) or Revlimid/Velcade/dex (RVD) was best. Bottom line: No current studies exist for guidance.

After two cycles of consolidation, what maintenance is appropriate? Possible answers included none, Revlimid, or Velcade. The audience chose Revlimid maintenance.

Recent studies show that Revlimid maintenance offers a substantial improvement in progression-free survival, and one study also shows an improvement in overall survival. Thalidomide may be a different story - no study shows a long-term improvement in overall survival with thalidomide maintenance, but most show toxicity in the form of peripheral neuropathy.

Conclusions: Consolidation questions require trials. Maintenance looks good but may not result in improved overall survival.

Dr. Robert Orlowski:

What about patients who have tried most available therapies?

Patient example: Many many failed therapies. Dr Orlowski presented eight possible treatment choices. The audience chose carfilzomib with Revlimid and Dex. He said that a combination including pomalidomide was second choice, though I didn't see that on the list of choices.

He used the term "A Cornucopia of New Drugs," including the "novel" drugs, which are now standard treatment, and including drugs that have new and different mechanisms of action. There is even an investigational oral proteasome inhibitor, which works like Velcade but can be taken at home.

He made quick mention of many new agents such as perifosine and vorinostat. Efficacy of proteasome inhibitors can be improved by adding HDAC inhibitors. Elotuzomab is a synthetic monoclonal antibody which shows promise.

We don't really know why Revlimid stops working for many patients.

Rev/Dex or Vel/Dex remain the standard of care. However, novel agents like carfilzomib and pomalidomide are "on the cusp" of availability. More-novel agents like ARRY530 may be on the way. Cyclophosphamide is an old drug that has become new again in combination with newer agents.

We need research telling us why myeloma becomes resistant to therapies. Then we can tailor treatment to the specific myeloma.

That was the end of the session. If you got this far, you should give yourself a little treat - not an unhealthy one, mind you, but maybe a modest piece of dark chocolate, or a few dried apricots, or perhaps a short nap. You deserve it.

ASH Convention Post # 2 - Current Clinical Controversies and Future Research Priorities for the Treatment of Multiple Myeloma

2011-12-09T15:13:00.004-06:00

That is the title of my first symposium at the conference of the American Society of Hematology (ASH), Friday, December 9, 2011, three hours. It seemed to be intended for clinical practitioners - doctors who treat myeloma patients and need to stay up to date in this rapidly-changing field.

I attended with all of the attention and understanding of an electrical engineer - or lawyer - doesn't matter, I'm not a doctor. The session was a flood of information and I was not able to keep up, which is on me, not the presenters. With that disclaimer, here is what I got out of it:

Dr. Paul Richardson, Dana-Farber, Chairperson of the Symposium:

Frontline treatment still divides patients in to two groups - transplant-eligible or not eligible.

Revlimid/Velcade/Dexamethasone (RVD) has proven to be very effective. Cyclophosphamide/Velcade/Dex may be just as good as a frontline therapy, but all four drugs together were not as good because of toxicities. Cyclophosphamide (Cytoxan) is an alkylating agent like melphalan. "Frontline" means the first therapy for a newly-diagnosed patient.

Almost every myeloma patient relapses, whatever the therapy. With good front-line therapies now, the real challenge is to treat patients with relapsed and refractory disease. His slide contained at least 30 different combinations of drugs available to the practitioner. Doxorubicin (Doxil) has become an important option, in combination with other novel drugs, although the supply is questionable.

Ongoing studies add a number of new agents, or agents new to myeloma, to the existing drug combinations.

In one specific case involving an 84-year-old woman, the opinion of the doctors in the audience about the importance of achieving a complete response (CR) or very good partial response (VGPR) varied widely. The largest group thought it was "somewhat" important, but some thought it wasn't important at all, and some thought it was very important.

Question from the floor: Why do we treat the elderly different from young people? This patient had been treated with a melphalan combination, but Dr. Richardson responded that he would not have treated her differently from a younger patient, and would have given her the same front-line therapy, but tailored to her tolerance of it.

Dr. Philip McCarthy, Jr.:

Maintenance Therapy Post-transplant

Zometa is preferable to Aredia and other bisphosphonates because it does seem to have a modest anti-myeloma effect.

A recent study using thalidomide as a maintenance after stem-cell transplant (SCT) did not show much benefit for progression-free survival (PFS) or overall survival (OS).

Another study has shown a very significant benefit from Velcade maintenance after SCT.

Revlimid maintenance has shown significant PFS, and at this point in the study, one of two studies is also showing a significant OS.

Conclusion: Revlimid is appropriate for prolonging time to progression (TTP), event-free survival (EFS), and overall survival (OS). Velcade as well. Also, to a lesser degree, Zometa.

Case: 72-year-old widowed woman, working in doctor's office. Scapular pain. IgA myeloma. Four therapies were presented to the group, which voted with tiny handheld wireless voting pads. The the top choice was a melphalan/prednisone/thalidomide combination, and the second choice a Rev/Velcade/dex combination. Blogger's comment: Why do doctors persist in giving OLD therapies to OLD people, when novel therapies are proven to be better? There seems to be incredible inertia in the medical field, especially among clinicians.

Comment by a panel member: PET/CT, though expensive, can be helpful in some cases, but not so much when other diagnostics already show active disese.

Maria-Victoria Mateos, M.D., Ph.D.:

Discussion of two classes of novel agents: Proteasome inhibitors (e.g. Velcade) versus immunomodulatory agents (e.g. Rev/thal). In both classes, new agents are being introduced and may help patients for whom first-line therapy has failed.

Carfilzomib/Rev/Dex produced a very high rate of complete or very good response. Several other proteasome inhibitors are coming along.

Pomalidomide seems to provide a benefit to 25-34% of patients for whom Rev and thalidomide are no longer of benefit. There are also combinations of pomaldomide with clarithromycin and other agents.

Bottom line: Both classes benefit from continuing research and innovation.

Andrzej J. Jakubowiak, M.D., Ph.D.:

Dr. Jakubowiak discussed novel mechanisms for overcoming myeloma's resistance to current therapies. This went very fast, but is also very exciting. He mentioned nine different drugs which have shown benefit when used in combination with Revlimid or Velcade, and a tenth was mentioned by another panelist.

Drugs synergistic with Velcade: Elotuzumab, Perifosine, Vorinostat, Panobinostat, more.

Synergistic with Revlimid: Vorinostat, panobinostat, more.

Also the efficacy of the traditional therapy melphalan/prednisone/thalidomide (MPT) is improved with Vorinostat or panobinostat. Resistance to Rev/Velcade/Dex (RVD) can also be overcome with Vorinostat.

Plitidepsin suppresses proliferation and anti-apoptosis genes. In other words, it affects the genes which cause the myeloma cell to grow rapidly, and the genes that prevent the cell from dying when it knows that it's goofy and should die. An engineer's view. That's really cool stuff.

Elotuzumab works by yet another mechanism, and has shown a significant benefit in combination with both Revlimid and Velcade.

Bottom line: Some of these new therapies are very promising, when used in combination with existing drugs, and ongoing trials will tell us which will provide the most help and for whom.

My Take:

I attended ASH two years ago, when Revlimid and Velcade were relatively new and were the subject of every talk. Now they are unquestionably the standard, and the buzz is about new agents for use in combination with them, to make them work better and longer.

ASH Convention Post # 1

2011-12-08T18:14:00.003-06:00

Flying into San Diego, you get a spectacular crystal-clear view of the city's downtown and Balboa Park, not to mention San Diego Bay, just in the last minute as the plane is about to touch down. If the wind is from the west, that is, otherwise the plane will land from the west and the view will be different.

We're ensconced in the San Diego Sheraton, and right now the hotel is trying to figure out how connect three computers in one room. No WI-Fi in this place yet! But if you are reading this post, it means that they got it figured out.

I'll be posting about myeloma issues as often as I can during the conference, so do stay tuned. I'll also be leading a fun run at 1:00 pm Saturday, and will be involved in other publicity events for Team Continuum.

If you have a Facebook account (who doesn't?) and haven't done it yet, please go to Facebook.com/ERACECANCER and "like" it, because a sponsor will contribute $5.00 to Team Continuum and it won't cost you anything more than a few seconds and a couple of clicks.

View from our hotel room balcony. Don't feel sorry for us:

CNN Story Good News Bad News

2011-12-02T10:11:00.003-06:00

Good News:

My little story about cancer man running marathons is on Headline News today. I've seen it twice, at about 9:13 and 10:13 am.

Bad News:

A longer version was scheduled for the Sanjay Gupta M.D. show, at 6:30 am this Saturday and Sunday. It has been slipped one week, however, because Dr. Gupta will focus on AIDS this weekend. So it should appear December 10 & 11, both days, at 6:30 am CST. Maybe?

Online Version:

It is already available online at CNN Blogs. This version also includes an article which I wrote.

CNN Story

2011-11-29T09:03:00.006-06:00

While I was in Washington DC a month ago, CNN interviewed me for their "Human Factor" segment - a guy running marathons with cancer. The story aired Tuesday morning, Nov 29, on their American Morning show.

It is available on CNN's blog pages: http://thechart.blogs.cnn.com/category/human-factor/, along with a short written story.

It is available without the written story here: http://www.cnn.com/video/#/video/health/2011/11/29/hf-don-wright-marathon.cnn.

It will probably air again at least once on Headline News, sometime during the week. Finally, a longer version is likely to be included in the Dr. Sanjay Gupta MD show, which airs at 6:30 am CST on Saturday and Sunday.

Probably Good News

2011-11-18T19:46:00.011-06:00

After 48 cycles on the sweet little pill called pomalidomide, my cancer markers are about the same as last month. IgG is higher than I would like to see it, at 1280 mg/dL, but it didn't jump up again, it actually dropped slightly. M-spike stayed still at 1.1 g/dL. So the cancer still appears to be stable. Dr. LH did mention that stress (3 marathons in 3 weeks?) could contribute to increased IgG, and I know that I have a tooth that is starting to go bad, so those are reasons why IgG might be a little higher than expected.

Lambda light chains dropped a bit, too, while kappa light chains remained the same. I'm not sure that means anything, except it can't be bad.

Calcium has bounced around in recent months, and it's back up again. We discussed doing a skeletal survey, to check for bone lesions, but Dr. LH said that if the calcium is coming from bone lesions, it isn't likely to go down again next month. So we'll hold off for a month and see. She suggested that better hydration might improve the calcium numbers, and I think she's right - I know that I don't drink enough water. I need to figure out some easy way to fit proper hydration into my life so that it happens automatically. Yeah.

I haven't been blogging here much lately, because we three have been on the road a lot, but we're going to the ASH Conference in December and I hope to blog several times while there.

Some Current Test Results:

Test	Aug 25	Sep 22	Oct 19	Nov 17	Remarks
M-spike g/dL	1.1	1.0	1.1	1.1	\ Tumor marker
IgG mg/dL	1150	1020	1310	1280	/ Tumor marker
Lambda mg/dL	2.25	2.49	2.75	2.12	L Free light chains
Calcium mg/dL	10.5	10.0	10.0	10.3	OK
Creatinine mg/dL	1.1	0.9	1.1	1.1	Kidney, OK
HGB g/dL	14.7	14.9	14.6	15.0	Hemoglobin, OK
RBC M/uL	4.08	4.09	4.07	4.18	Red cells, low
WBC K/uL	3.8	6.2	4.8	5.3	White cells, normal
ANC K/uL	1.40	2.60	2.30	1.70	Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

There's oatmeal under there somewhere:

CNN Video Piece

2011-11-05T06:38:00.002-05:00

CNN has prepared a story about me and my 59 marathons since diagnosis, and were planning to air it this Tuesday morning. In case you were thinking of tuning in (I was!) it has been rescheduled for Tuesday morning Nov 15.

But don't count on it. News always comes first.

Senator Amy Klobuchar

2011-11-02T17:55:00.003-05:00

I had a chance to meet Senator Amy Klobuchar yesterday. She's the best:

Oral Drug Parity, Part 2

2011-11-01T20:26:00.005-05:00

HR 2746, the Cancer Coverage Parity Act of 2011, is intended to guarantee that private insurance will cover oral cancer medications on terms no less favorable than inpatient chemotherapy. Yesterday, as a blood cancer patient, I helped the IMF and the LLS bring this issue to five congressional offices, each time explaining the issues and helping the staffer to understand why we care about it. See yesterday's post.

Today we visited six more congressional offices, this time including the two Minnesota senators, for whom I'm an actual constituent:

Andy Taylor, Legislative Assistant to Congressman Michael T. McCaul (R-TX;
Brian Fauls, Deputy Chief of Staff for Congressman Dan Burton (R-IN);
Whitney Brown, MPH, ASPH Public Health Policy Fellow at the office of Senator Al Franken (D-MN);
Senator Amy J. Klobuchar (D-MN) and Andrew Hu, Legislative Assistant;
Katie Meyer, Legislative Assistant for Congressman Erik Paulsen (R-MN); and
Andrew Wankum, Legislative Assistant for Congressman Kevin Brady (R-TX).

Again, like yesterday, everyone was quite cordial, and most sounded quite positive on our issue. Some were chatty, some not, some had a little fun, and maybe talked about running too, some not. I have never been to Capitol Hill before, but I found that I really enjoyed this.

Why the bill should pass: It's bipartisan because cancer hits both sides of the aisle, it costs the government nothing because it is directed at private insurers, and it doesn't require insurers to cover cancer meds - it only requires parity if they do cover them. We hope that several of the congressmen will co-sponsor the bill.

Some insurers don't like the bill, mostly because it requires them to change something. They're obliged to be fair, poor babies.

Amy Klobuchar is something else. Of the staffers we saw in the various offices, there may have been just two or three who had a grasp of the issue before we arrived, but Senator Klobuchar knew all about it - even told us a funny story about it! There is no Senate sponsor yet, and I'm hoping that either she or Senator Al Franken will do that. I admit to being a big Klobuchar fan, for a long time, and I even got a hug.

If you noticed, ten of the congressmen and senators were men, but the one woman senator was the only one who showed up in person. Thank you Senator Klobuchar. To be honest, I think that's more about Senator Klobuchar than it is about gender, but feel free to disagree.

Thank you also, very much, to all of the staffers who met with us and took our message to your congressmen and senators.

Thanks to Christine Murphy of the IMF and George Dahlman of LLS, who did their jobs so competently, and Coles Hull, who guided us throughout, and thanks to Nancy Glick and Stephen Gendel, true professionals.

Earlier in the morning I was interviewed by CNN, preparing a piece about people who are responding to critical issues in their lives (or something like that). The snapshot below shows me with the CNN producer, and with the Potomac River in the background. The piece may air on CNN's American Morning show, Tuesday, November 8, which starts at 7 am Eastern time. Or maybe 6 am - that's what my guide says. More about this as I learn more.

UPDATE Nov 5:The CNN piece has been rescheduled to Tuesday Nov 15. Probably. More here.

Now we three are off to New York.

Oral Cancer Drug Parity

2011-10-31T20:59:00.003-05:00

Many of us have discovered that oral drugs that we take at home, like Revlimid or Thalidomide, can cost us much more than intravenous (IV) drugs, like Velcade, delivered in the doctor's office or a clinic. There are various reasons for the difference, including deductibles, co-pays, annual or lifetime maximums, and the "donut hole." The costs can be so staggering that many patients simply don't fill their prescriptions.

So why not just use IV chemotherapy instead of oral meds? (1) For some patients, oral meds may very well be the best medical treatment, especially with the newest oral meds; (2) It is SO much more convenient for the patient (us) to take a pill once a day instead of sitting in a clinic for an infusion. We can work, and travel, and live fuller lives, without being tied to a clinic; (3) For some patients, the nearest clinic may be many miles away; and (4) In some cases the oral drug may cost the health care system less, considering the much higher number of office visits required for IV therapy.

Fourteen states have now enacted laws requiring insurers to cover oral drugs on terms as favorable as they cover IV drugs. HR 2746, the Cancer Coverage Parity Act of 2011, is intended to fix the problem at the federal level, eliminating the need for the remaining states to enact their own legislation.

After running the Marine Corps Marathon yesterday, I stayed in Washington to help the International Myeloma Foundation (IMF) and the Leukemia and Lymphoma Society (LLS) bring this issue to the attention of a few congressmen and senators. Today we visited:

John Martin, Legislative Director for Congressman Phil Roe, MD (R-TN);
Paul N. Balzano, Legislative Director for Congressman K. Michael Conaway (R-TX);
Caira Woods, Legislative Health Fellow for Congressman Frank Pallone, Jr. (D-NJ);
Pat Pelletier, Legislative Correspondent for Congressman John Kline (R-MN); and
Elizabeth Hoffman, Legislative Assistant for Congressman John R. Carter (R-TX)

I've never done anything like this before, and was actually more apprehensive about these meetings than I was about Sunday's marathon - I didn't sleep well last night. But I found that I liked it, especially after the first person was warm and affirming. Everyone was cordial, at the very least. In most cases, the issue was new to the staff person with whom we spoke. They were there to be educated and they learned something. I enjoyed it and will sleep well tonight!

Tomorrow we have six more meetings. I believe five are with congressional staff, and hopefully one with an actual senator. Can't wait.

Article in Minneapolis Star Tribune

2011-10-24T08:58:00.003-05:00

Here's a nice article in the Minneapolis Star Tribune's East Metro Section about my marathons and Team Continuum, published yesterday.

Team Continuum helps families that are devastated by the costs and disruptions of cancer.

You can help, using someone else's money! If you have a Fecebook account and go to my E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a generous third party. We invite you to do that - there is no cost to you.

Of course you are certainly also welcome to go directly to my Team Continuum page and make a further contribution to the cause. It's deductible.

Thank you!

Not Good News Today

2011-10-20T08:44:00.003-05:00

I've participated in a study of a new drug called pomalidomide (originally called CC-4047) for 47 cycles now, each 28 days long. It's been a wonderful ride so far, with the cancer held stable for more than 3 1/2 years. Eventually every treatment fails, however, and when that happens I will see the cancer markers starting to increase.

They increased today. The blood test results at Mayo Clinic showed a 28% rise in immunoglobulin G (IgG), from 1020 to 1310 mg/dL, which is the largest jump in IgG since I started in the study. The monoclonal (naughty) component of immunoglobulin G is called M-Spike, and it increased too, though more modestly, from 1.0 to 1.1 g/dL. The results do go up and down, of course, for perfectly natural reasons, and they most likely will go down again next month. Or, they could continue on upward. Meanwhile, I'll be on pins and needles.

What if they do keep going up? There are several other treatments that my myeloma hasn't yet had a chance to outgrow, and some of them will undoubtedly help.

Better news: Calcium, kidney function, hemoglobin, and white counts are all within normal limits. I think that means that the myeloma most likely isn't hurting me yet.

Some Current Test Results:

Test	Jul 28	Aug 25	Sep 22	Oct 19	Remarks
M-spike g/dL	1.0	1.1	1.0	1.1	\ Tumor marker up
IgG mg/dL	1030	1150	1020	1310	/ Tumor marker up
Lambda mg/dL	2.21	2.25	2.49	2.75	L Free light chains
Calcium mg/dL	9.8	10.5	10.0	10.0	OK
Creatinine mg/dL	1.3	1.1	0.9	1.1	Kidney, OK
HGB g/dL	15.1	14.7	14.9	14.6	Hemoglobin, OK
RBC M/uL	4.17	4.08	4.09	4.07	Red cells, low
WBC K/uL	5.1	3.8	6.2	4.8	White cells, normal
ANC K/uL	1.90	1.40	2.60	2.30	Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Prepared by Sunshine on the road between Hartford and St Paul: Applegate organic chicken/turkey fire-roasted red pepper sausage, organic mustard, tuna dish (organic peas, tuna, organic brown rice), veggie dish (organic squash, organic sweet potatoes, onions), avocado:

Stacy Died

2011-09-27T16:39:00.005-05:00

Stacy was the wonderful young mother of two small girls and as warm, caring, and upbeat a person as I've ever known. She was struck down today by myeloma.

I feel so damn ANGRY at this disease. So helpless. I hate it! My own ride with myeloma has been easy by comparison, but now I've personally known thirteen people, shaken their hands and spoken face-to-face, people like Stacy, who have gone down before this merciless killer. All of them died too early, and Stacy's death is a particular tragedy.

Some people say that new treatments for myeloma might eventually turn it from a uniformly fatal disease into a chronic one. That's a great goal, but we're not there yet, not when a young wife and mother of two cannot be saved by the best medical care on earth. There is a lot of work to do.

Stacy, we love you and we commend you to the hands of God. We will most certainly miss you here.

Stacy, second from left, with her mother and two daughters:

Still Stable After Cycle 46

2011-09-22T16:17:00.005-05:00

I'm a very fortunate myelomiac, I know that. My numbers go up slightly, and then they go down again. This time they're down a bit after the 46th 28-day cycle of the investigational drug pomalidomide. I've never been injured by the myeloma and I can still run, and in fact we just finished our 55th marathon since diagnosis. That's very lucky indeed, and I'm so grateful to the professionals at Mayo Clinic, and to Celgene, the makers of pomalidomide, and to my two sweeties who care for me, and all others who make the hope come true. Life is very good.

Serum Cancer Markers:

My myeloma is IgG Lambda, a very common type. So far, the tumor burden seems to be quantifiable by measuring its surrogates, the IgG protein level and the M-spike. IgG is down from 1150 mg/dL last month to 1020 this time. Accordingly, M-spike is down from 1.1 to 1.0 g/dL. Light chains are basically unchanged. Liver enzymes are up a bit, but that could be from running a marathon four days ago - they're still within the reference range.

Calcium:

Last month my calcium was 10.5 mg/dL, which is significantly above the top of the reference range. Doctor LH recommended that I cut my daily Vitamin D3 supplementation in half, to 2500 IU, and I did. This month calcium was 10.0 mg/dL, just below the top of the reference range. Calcium in the blood has varied quite a lot from month to month, so we can't say for sure that the Vitamin D3 reduction made any difference, but it might have. There is such a thing as too much Vitamin D, although 5000 IU/day is far below the levels generally thought to be harmful. That threshhold might change, however, when the supplement is taken for years, as I have done.

Too much calcium in the blood can be harmful in itself, playing a part in atherosclerosis, but for a myelomiac it can also be a signal of bone loss, indicating that the myeloma is active in the marrow of some bone or bones. I'm glad that it went down, and for now I'll stay on the reduced amount of Vitamin D3.

Even though the calcium level went down, though, it's still on the high side of normal. Considering that it's been 18 months since the last skeletal survey, Dr RH thought it would be reasonable to have one, and scheduled it as part of next month's tests. That's a proactive approach that I appreciate. I did have a clear PET scan six months ago, but myeloma can be very sneaky.

Some Current Test Results:

Test	Jun 30	Jul 28	Aug 25	Sep 22	Remarks
M-spike g/dL	1.0	1.0	1.1	1.0	\ Tumor marker
IgG mg/dL	1070	1030	1150	1020	/ Tumor marker
Lambda mg/dL	1.74	2.21	2.25	2.49	L Free light chains
Calcium mg/dL	10.0	9.8	10.5	10.0	OK
Creatinine mg/dL	1.3	1.3	1.1	0.9	Kidney, good
HGB g/dL	14.8	15.1	14.7	14.9	Hemoglobin, OK
RBC M/uL	4.28	4.17	4.08	4.09	Red cells, low
WBC K/uL	3.6	5.1	3.8	6.2	White cells, normal
ANC K/uL	1.17	1.90	1.40	2.60	Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Presque Isle State Park, September 18, 2011, a view of Lake Erie from along the marathon route:

Collaboration With Team Continuum

2011-09-01T21:22:00.002-05:00

I'm now running on behalf of Team Continuum, raising money for people living with cancer, while I pursue my goal of running a marathon in each of the 50 states. We three have a full schedule of marathons for the rest of 2011, including the New York City Marathon, the Marine Corps Marathon, and several others.

You can help. If you go to my new E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a third party. We invite you to do that - there is no cost to you.

While you are there, you are certainly also welcome to click on the Team Continuum link and make a further contribution to the cause.

Thank you!

Vitamin D3 and High Serum Calcium

2011-09-01T17:23:00.001-05:00

At my last Mayo Clinic visit, serum calcium tested at an all-time high, 10.5 mg/dL. The reference range is 8.9 to 10.1 mg/dL, so it's significantly above normal. Why is that? (1) It could be the myeloma attacking a bone somewhere; or (2) Dr LH noticed that I take a lot of Vitamin D3 and Vitamin K2 supplements, and decided to measure INR and Vitamin D levels. INR was OK.

Vitamin D levels came back the next day, and a couple of days after that Dr LH called to discuss them:

Test Name	Result	Units
25-Hydroxy D2	<4.0	ng/mL
25-Hydroxy D3	71	ng/mL
25-Hydroxy Total	71	ng/mL	Total (D2+D3) optimum level is 25-80 ng/mL

Dr LH pointed out that the Total Vitamin D is near the high end of the optimum range, and suggested that I cut my Vitamin D3 from 5000 units per day to 2500 per day, which is easy enough to do. Arguments for doing that (these are from my own research):

Some authorities believe that it is possible for continuously-high levels of Vitamin D to cause high serum calcium.
In some individuals, high levels of calcium can result in deposition of calcium in arteries, atherosclerosis.
There is really not enough research to determine the safe amount of supplementation.

Arguments against reducing Vitamin D supplementation:

According to the Vitamin D Council, toxicity begins at about 200 ng/mL and higher. They suggest an upper limit of 100. Other authorities seem to agree, though research on humans is lacking and individual responses could vary widely.
The purpose of the high Vitamin D3 intake, along with Vitamin K2, is to combat bone loss. In a one-year test this seemed to be effective, with two density scans a year apart showing no measurable difference in density. It's just one short test, but I'm reluctant to make a change that might reduce the effectiveness of this treatment.

So what to do? My serum calcium levels have varied widely in recent months. Below is a chart of recent measurements.

Possibilities: cut the Vitamin D3 supplement in half or leave it the same for the current cycle, and, either way, the serum calcium might stay high or it might go down. But if I cut the D3 in half and calcium remains high, then we should worry about a myeloma hot spot in a bone somewhere. That's the worst case scenario here, so let's check for it.

High Calcium

2011-08-25T19:00:00.004-05:00

It's not extremely high, just 10.5 mg/dL, where the reference range is 8.9 to 10.1. But it could be an indication that the myeloma is etching holes in some bones somewhere. I don't even like to think about that. On the other hand, my calcium level does seem to bounce around a lot these days. It was 9.4 in May, 10.4 in June, then 10.0, and finally 9.8 in late July. Doctor LH says watch and wait, and hydrate, which can affect the calcium level especially. It certainly could be a hydration issue this time - I felt thirsty last night and probably didn't drink enough.

That "watching and waiting" business is one of the hardest parts of myeloma, because I do know of people whose bones broke while they were waiting. Fortunately, though, I do get new tests every 28 days, so I'm watching pretty closely, and if calcium stays high Dr L will probably do something to get a closer look.

Pomalidomide Study:

Otherwise, at the end of the 45th 28-day cycle of the study drug pomalidomide, IgG is up about 12% from last month. This is not good, but it's been there before, several times. Likewise M-spike, which follows IgG, is up 10% to 1.1 g/dL. Light chains are unchanged, and creatinine (kidney marker) is down, which is good. Dr LH pronounced the myeloma "stable."

Bactrim:

The doctors have prescribed Bactrim, a sulfa-based antibiotic, to be taken prophylactically to ward off opportunistic pneumonias. I've been stalling, reluctant to take it, but decided to try it a few weeks ago. After about a week of it, I had constipation, pain in my abdomen (probably from the constipation), and fatigue. These symptoms are not highly unusual and could have appeared anyway, of course, but they resolved when I stopped the Bactrim. Our pharmacist said that Bactrim has produced these symptoms in other people too. So I stopped taking it again, and will discuss it with Dr L on the next visit.

Vitamin K2:

I take 30 mg of Vitamin K2 (menatetrenone) every day, along with 5000 mg of Vitamin D3, to help protect and rebuild bone. Dr LH seemed concerned about the amount of Vitamin K2, because too much Vitamin K can theoretically affect blood clotting. I may be misrepresenting her concern here, but she ordered two more tests: INR, and Vitamin D level.

INR was 1.1, where the reference range is 0.8 to 1.2. This is OK, and certainly my blood is not too apt to clot. I don't have the Vitamin D level yet, but expect it to be fine.

AAA Screening:

Once in a lifetime a man who has ever smoked should be screened for an Abdominal Aortic Aneurysm. I did smoke for a couple of years, almost 50 years ago. I got smarter later, but the USPSTF (who?) recommends one ultrasonic exam of the abdominal aorta in such stupid men, sometime between the ages of 65 and 75. It's a simple ultrasound between the bottom of the sternum and the navel.

When it was finished, I told the technician that I wouldn't ask for a result, but asked if it was safe to drive home. She grinned and said "well, I'm letting you go, let's leave it at that." So I'm sure I passed, because a ruptured aortic aneurism has a very low survival rate and she would have kept me if she had seen a risk.

Some Current Test Results:

Test	Jun 02	Jun 30	Jul 28	Aug 25	Remarks
M-spike g/dL	1.1	1.0	1.0	1.1	Best tumor measure?
IgG mg/dL	1110	1070	1030	1150	Best tumor measure?
Lambda mg/dL	2.52	1.74	2.21	2.25	L Free light chains
Calcium mg/dL	10.4	10.0	9.8	10.5	High
Creatinine mg/dL	1.2	1.3	1.3	1.1	Kidney, OK
HGB g/dL	15.2	14.8	15.1	14.7	Hemoglobin, OK
RBC M/uL	4.13	4.28	4.17	4.08	Red cells, low
WBC K/uL	4.9	3.6	5.1	3.8	White cells, low
ANC K/uL	2.40	1.17	1.90	1.40	Neutrophils, Low

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Leftover turkey and other good stuff:

Carfilzomib Access

2011-08-05T13:49:00.006-05:00

Carfilzomib is a new proteasome-inhibitor drug similar to Velcade, but with fewer side effects. In addition, some patients for whom Velcade no longer works have responded to Carfilzomib in trials.

Until now it has only been available in limited trials, but a new trial has been announced which will make it much more widely available. Here is the link: The MMRF.

To be eligible, patients must have progressive disease, had at least four prior therapies, and be refractory to at least one of those. Please check the website (MMRF link above) for a better definition of eligibility and exclusion criteria. 40 different clinical centers throughout the country are enrolling for the study, so that patients can have access locally.

The drug will be provided at no cost until it become commercially available, which could be as soon as the first half of 2012.

If you've tried everything else, here is one more good therapy.

Stacy Needs Your Stem Cells

2011-07-30T18:20:00.003-05:00

Stacy is a young Minnesota mother who needs an allogeneic transplant, and the doctors have not yet found a match for her.

For more information, please visit Minnesota Myeloma

L-Arginine

2011-07-28T15:21:00.004-05:00

July 28, 2011

Cycle 44 of the pomalidomide trial is complete and my myeloma is still stable. IgG is down a few percent, M-spike is unchanged, and Lambda free light chains are up, but only to where they usually sit. NOT ho-hum, though - I'm always a bit nervous, because we know that the lovely ride on pomalidomide will come to an end someday. Not today though. Yay!

L-Arginine:

I mentioned to Dr RH that L-Arginine made a significant improvement in a uniquely-male problem for me. He seemed pleased, but did caution that there is some anecdotal evidence that L-Arginine can increase the frequency of cold sores (herpes simplex). Perhaps it helps the herpes virus to replicate. In the same vein, a blog reader has commented that he developed shingles (herpes zoster) while taking 2000 mg L-Arginine daily. Ouch.

Consequently, an increased risk of cold sores and shingles outbreaks may be the price of improved erectile function through L-Arginine. Cold sores might not be such a high cost, but shingles can be very painful and, in rare cases, can even result in permanent injury. Further, we myelomiacs have an unusually high risk of shingles, because our immune systems are impaired.

Nevertheless, I'm not stopping the L-Arginine, at least not until I learn the lesson the hard way. I take a daily capsule containing 500 mg L-Arginine and 250 mg L-Ornithine. However, I also take a daily tablet of L-Lysine 500 mg, which is reputed to help suppress those viruses.

Some Current Test Results:

Test	May 05	Jun 02	Jun 30	Jul 28	Remarks
M-spike g/dL	1.0	1.1	1.0	1.0	Best tumor measure?
IgG mg/dL	1130	1110	1070	1030	Best tumor measure?
Lambda mg/dL	3.07	2.52	1.74	2.21	L Free light chains
Calcium mg/dL	9.4	10.4	10.0	9.8	Normal
Creatinine mg/dL	1.1	1.2	1.3	1.3	Kidney, High
HGB g/dL	14.7	15.2	14.8	15.1	Hemoglobin, good
RBC M/uL	4.11	4.13	4.28	4.17	Red cells, low
WBC K/uL	4.6	4.9	3.6	5.1	White cells, OK
ANC K/uL	1.90	2.40	1.17	1.90	Neutrophils, OK

Creatinine is a measure of the kidneys' ability to clear waste from the blood, and has been a little high (wrong direction) for several cycles now. I don't quite know what to think about that. Drink more water I guess ...

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Leftovers atop greens, with sweet potatoes and beans. Mostly organic, especially the sweet spuds, greens, and beans. The red lines on the sweet potato slices are a tasty pepper sauce:

Excellent IMF Seminar in Minneapolis

2011-07-23T21:58:00.000-05:00

Dr. Parameswaran Hari, MD, MS, and Teresa Miceli, RN, BSN, OCN spoke to a large group at the Minneapolis Sheraton. Dr. Hari is Section Head and Clinical Director, Bone Marrow Transplantation, University of Wisconsin in Milwaukee. Teresa Miceli is a bone marrow transplant coordinator and preseneter at Mayo Clinic in Rochester, MN.

Dr. Hari:

You would be well served with Dr. Hari as your myeloma doctor. He certainly seems as knowledgable as any doctor I've met. He cruised through a lot of information, on a lot of slides, in a fairly short time:

My Favorite: During a coffee break, a patient asked Dr. Hari, "What can we patients do besides just following our doctor's orders?" Back on the podium, Dr. Hari departed from his prepared presentataion with with brief, unscripted lifestyle suggestions:
1. Fitness: He recommended both weight training and aerobic exercise for people whose bones can take the stress.
2. Nutrition: In addition, he recommended more vegetables and less red meat. Further, he mentioned that curcumin is a helpful myeloma treatment for some people and harmless otherwise, but green tea (or EGCG) should not be taken with Velcade because the green tea can rescue the myeloma cells that Velcade tries to kill.
I've never heard such an enthusiastic endorsement of lifestyle changes from any doctor before. Every one of my doctors has wholeheartedly supported the choices that I have made, training for and running marathons, and eating the best diet we can find, but Dr. Hari proposed a similar lifestyle out of the blue.
He also gave a quick review of what myeloma is;
Some statistics about cases, including length of survival as treatments have improved;
Some discussion of "high risk" versus normal risk myeloma;
Spine repair;
Current therapies, including the "novel" therapies: thalidomide, Revlimid, Velcade, and others in various ombinations;
Transplants, including auto, allo, mini-allo, and combinations;
Post-transplant consolidation and maintenance;
Treatments which are in clinical trials including pomalidomide, catfilzomib, elotuzumab, and more;

More than once, Dr. Hari mentioned that the cure for myeloma is to hold it off long enough to die of something else, and he believes that should be the treating physician's first goal.

Nurse Miceli:

Teresa Miceli's presentation was titled "Managing Side Effects of Myeloma and Novel Agents:

She discussed how myeloma itself impacts quality of life;
Gastrointestinal side effects;
Myelosuppression (low blood counts);
DVT and other blood clots;
Peripheral neuropathy;
Renal function (drink, drink, drink);
Bone health; and
Sexual function and dysfunction.

What can we do in our battle with myeloma? Drink lots of water!

Thanks to the International Myeloma Foundation for hosting this seminar, free of charge to all.

Life is Great

2011-06-30T17:21:00.004-05:00

June 30, 2011

Some runners don't like to run the same route over and over again, because repetition is boring. I agree, except when the route is incredibly beautiful, like a mountain trail, because genuine beauty doesn't get boring.

Test Results:

That's how I feel about the pomalidomide drug study at Mayo Clinic - I'm not bored. After the 43rd 28-day cycle, my myeloma is still stable, and that's beautiful, life is good. IgG is down a little, M-spike down a tenth, and Lambda light chains are down significantly. They go up, then they go down. I'm learning to go with the flow, which is especially easy when the flow is down, like today.

Actually, Lambda Light Chains dropped by 31%, while Kappa Chains went up a little, both going in the right direction. These are important cancer markers for some myelomiacs, and this sort of change would be good news for them. Light chains are not the best markers for my myeloma, though, so I don't know how much it means. Anyway it's certainly not bad news.

Creatinine is not a cancer marker, but is the primary kidney marker and is checked every month because myeloma can cause kidney failure. Creatinine was near the high end of the range for the second successive month. However, Dr RH explained that creatinine is a byproduct of muscle breakdown, which is happening to everyone all of the time but may be higher than normal in my case because of the running - I ran two marathons in the last 28 days, one just 12 days ago. So I won't worry unless it goes quite a bit out of range. Meanwhile, more water would probably be good. Kidneys like water. Alas, Dr RH didn't think that beer would do quite as well.

Supplements:

For this cycle I dropped two supplements: (1) Marrow Plus, Chinese herbs for bone marrow; and (2) Genistein, a supplement which may have an anti-tumor benefit but also some side effects. I also added a supplement containing L-Arginine 500mg and L-Ornithine 250 mg. Results:

Marrow Plus: The neutrophil count shown below was unintentionally ordered and was performed this morning at 6:00 am, reading 1.17 K/uL. It's always low in the morning. The "real" (intended) count was done yesterday afternoon, reading 1.90 K/ul. Both of those numbers are above the cutoff for the study, and my conclusion is that I don't need the rather expensive supplement.
Genistein: Since the tumor markers all went down, I assume that this supplement can also be dropped from the regimen. If it ever did any good, it probably isn't helping now.
L-Arginine & L-Ornithine: These are closely-related amino acids with a reputation for improving blood flow. Listen up men: It works! "Blood flow" is objectively and subjectively improved. Maybe it helped to drop the Genistein, but I think it's the added L-Arginine. I might create another post about that if I get up enough nerve.

Some Current Test Results:

Test	Apr 07	May 05	Jun 02	Jun 30	Remarks
M-spike g/dL	1.0	1.0	1.1	1.0	Best tumor measure?
IgG mg/dL	1080	1130	1110	1070	Best tumor measure?
L FLC mg/dL	2.08	3.07	2.52	1.74	L Free light chains
Calcium mg/dL	9.9	9.4	10.4	10.0	High
Creatinine mg/dL	1.2	1.1	1.2	1.3	Kidney, OK
HGB g/dL	15.5	14.7	15.2	14.8	Hemoglobin, good
RBC M/uL	4.27	4.11	4.13	4.28	Red cells, low
WBC K/uL	4.9	4.6	4.9	3.6	White cells, low
ANC K/uL	1.90	1.90	2.40	1.17	Neutrophils, low

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Hot and humid today, 98 at our house. This photo from April reminds us of cooler days:

IMF Regional Workshop July 23

2011-06-24T11:55:00.004-05:00

International Myeloma Foundation (IMF)
Regional Community Workshop

Saturday, July 23, 2011
8:30 am - 3:00 pm

Sheraton Minneapolis
12201 Ridgedale Drive, Minnetonka, MN 55305

Brochure:

The Twin Cities Multiple Myeloma Support Group invites survivors (patients), families, caregivers, and friends to attend. It is free of charge, but please register with the IMF:

Call 800/452-CURE (2873), or
email theIMF@myeloma.org or
Register on-line HERE.

From the IMF web site: "Regional Community Workshops are half-day meetings and are designed to provide much of the same information as that of a Patient & Family Seminar but in a condensed form. These meetings are held in smaller cities and allow the IMF to expand the reach of its programs to a wider audience. The faculty consists of local myeloma specialists, a nurse, and a speaker on supportive care issues. The IMF works closely with the local support groups to promote these meetings and attendance generally ranges from 50-75 attendees."

Faculty: The primary speaker will be Dr. Parameswaran Hari, MD, MRCP, MS, Clinical Director of the Adult Bone Marrow Transplant Program and Associate Professor of Medicine in the Division of Hematology and Oncology, Wisconsin College of Medicine. Also confirmed is Teresa Miceli, RN, BSN, from Mayo Clinic in Rochester, very knowledgable about myeloma and a blessing to her patients.

If the travel isn't too daunting, I can't recommend this event highly enough. You will undoubtedly:

Meet other survivors;
Meet Teresa Miceli and the doctors;
Learn about myeloma and its treatment; and especially
Learn about recent advances.

Personally, I would skip an important marathon to attend this workshop.

Don

Stable Again

2011-06-06T07:38:00.004-05:00

June 2, 2011

I'm still on the pomalidomide drug study at Mayo Clinic, and the cancer markers seem stable after the 42nd 28-day cycle. IgG is down a little, M-spike up a little, and Lambda light chains are down. Par for the course. I take just 2 mg of that miracle molecule every night, along with some aspirin and an anti-viral to ward off shingles. I've enjoyed well over three years of a high-quality lifestyle, including 25 marathons, since starting pomalidomide.

Other test results are not quite as comforting though. For some reason calcium is a little high, and two different kidney markers are at the top edge of the reference range. I probably haven't been drinking enough water. Those tests are done every month, and we'll see how they look next month. Dr. RH didn't even mention them, so he probably wasn't concerned.

TSH is a thyroid marker which goes high when thyroid output goes low, and TSH was a little high, for the first time in years. It does bounce around some, and I'll get another reading in three months. I take a couple of supplements for thyroid, but haven't changed that.

Some Current Test Results:

Test	Mar 09	Apr 07	May 05	Jun 02	Remarks
M-spike g/dL	1.0	1.0	1.0	1.1	Best tumor measure?
IgG mg/dL	1050	1080	1130	1110	Best tumor measure?
L FLC mg/dL	2.50	2.08	3.07	2.52	L Free light chains
Calcium mg/dL	9.6	9.9	9.4	10.4	High
Creatinine mg/dL	1.0	1.2	1.1	1.2	Kidney, OK
HGB g/dL	15.2	15.5	14.7	15.2	Hemoglobin, good
RBC M/uL	4.40	4.27	4.11	4.13	Red cells, low
WBC K/uL	5.3	4.9	4.6	4.9	White cells, OK
ANC K/uL	1.61	1.90	1.90	2.40	Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Pot roast with lots of onions, olives, potatoes, sweet potatoes, and interesting cheese.

Dexamethasone and Cushing's Syndrome

2011-05-22T17:08:00.003-05:00

In a recent episode of the TV program House, the young patient was eventually diagnosed with Cushing's Syndrome, and I noticed a similarity between some of her symptoms and some of mine. Wikipedia describes these symptoms which I do have in one degree or another:

Excess upper-body fat, but with normal arms and legs.
Thin skin with easy bruising.
Weakened muscles.
Some unmentionable symptoms.

Happily, there are many other classic symptoms that I do NOT have, though I have noticed some in other myeloma survivors:

Round, red, full face (moon face).
Skin infections.
Purple marks (striae) on the abdomen and elsewhere.
Backache.
Bone pain.
Fatty back deposits (buffalo hump).
Thinning of the bones.
Psychological disorders. Hmmm, well, I do keep running marathons ....

Cushing's Syndrome can be caused by various disorders within the body, or by glucocorticoid drugs, such as dexamethasone (DEX). I have known for a long time that the DEX caused each of those symptoms, but never knew there was a name for the collection of them. Self-diagnosis is iffy, and maybe the doctors don't actually call it Cushing's syndrome with so few of the classic symptoms, but I like having a name for what DEX did to me.

Fortunately, my doctors understood the risk and administered only the lowest doses of DEX, decreasing, and finally took me off DEX entirely, so the symptoms are quite tolerable. "Everything works better with DEX," and the combination of pomalidomide and DEX did the job, so eight years after diagnosis I'm still quite alive and the myeloma is stable on just pomalidomide. I have no complaints and no regrets.

I'm greedy about my health, though, and with the DEX gone I would like to get back into shape. I watched my marathon finish times climb by more than an hour in the 21 months of DEX treatment, and I believe that is due to muscle loss and to the accumulation of upper-body fat. Now, 17 months after the completion of that treatment, I have yet to see any real improvement in race times. Something has to be done:

First, get serious about weight loss. I won't know whether the upper-body fat can be removed unless I actually do lose some significant weight, say 10 - 15 pounds. Weight Watchers works - I'll start journaling again;
Next, see a physical therapist and maybe a trainer about the little injuries like runners' knee that have been keeping me from some of the more-serious runner training necessary to build speed. The first therapist appointment is already made; and
Finally, visit my naturopathic doctor Helen Healy to discuss this and perhaps review the supplements I'm taking.

Leftovers with personality:

Myeloma Support Group, Rochester Minnesota

2011-05-22T11:00:00.010-05:00

Minnesota has three monthly myeloma support group meetings, one on each side of the Twin Cities and one in Rochester. We three attend regularly in the Twin Cities, but had never been to a Rochester meeting. However, we heard that the guest speaker would be a renowned and respected Mayo Clinic myeloma doctor fresh from the International Myeloma Workshop in Paris, so we went. I'm protecting the doctor's identity because I may not have understood perfectly and wouldn't want the doctor to be thought responsible for errors that are actually mine.

High spots of the Workshop:

Aggressive versus conservative initial treatment:

Some doctors believe that myeloma should be treated aggressively in the beginning, with a three-drug regimen, for example, while others prefer a more conservative approach, perhaps using just one drug in the beginning and reserving the others. This doctor believes that the issue is not settled yet, despite some studies, and I got the impression that Mayo doctors in Rochester would likely treat a new patient conservatively unless the patient's myeloma was "high-risk," about one fourth of cases.

Maintenance with Revlimid:

After an autologous stem cell transplant, a patient has the choice of maintenance, probably with Revlimid, or no treatment at all. In either case the myeloma almost always returns, but recent studies have shown that maintenance delays that return. After the return the myeloma is treated again, of course, and until now there was no clear survival advantage to maintenance, but one ongoing study has now shown some advantage.

What's new?:

Proteasome Inhibitors:

Velcade is a proteasome inhibitor. Recently it has been shown less likely to cause neuropathy if given subcutaneously (under the skin) than when given the usual way as an IV infusion. Carfilzomib, a new drug, is less likely to cause neuropathy than IV Velcade and may be close to FDA approval. Other proteazome inhibitors are in trials.
Monoclonal Antibodies:

Our bodies manufacture antibodies to attack invading bacteria and viruses, one type of antibody for each different invader. Researchers are developing synthetic antibodies which attack myeloma cells. In conjunction with chemotherapy, synthetic antibodies have become an important therapy in treating leukemia, and now they are showing promise in treating myeloma.
Immunomodulatory Drugs:

Like Revlimid, pomalidomide appears to be a very successful treatment. Right now, the only trial available at Mayo is for people for whom Revlimid no longer works, but I got the impression that Celgene, the drug's developer, may go for FDA approval soon. It's good stuff - I wish I could help!

For much more information about the 2011 International Myeloma Workshop, visit this International Myeloma Foundation web page.

The Rochester meetings are held in a cozy room in the Gift of Life Transplant House. Some of the attendees are from out of state, staying in Rochester as they recover from a transplant or other medical issues, and some live near Rochester and commute in to the meetings. We enjoyed the meeting and the warm, welcoming atmosphere. There is always a knowledgable representative from Mayo Clinic. For meeting dates, go to minnesotamyeloma.blogspot.com and scroll down the right-hand panel.

Still Stable

2011-05-06T16:22:00.005-05:00

Pomalidomide Study:

After 41 cycles on the pomalidomide (CC-4047) study, my M-Spike is still 1.0 g/dL, and IgG is up only slightly. Lambda light chains are up significantly, but they were down a lot last month.

News from the International Myeloma Workship in Paris:

New data from the CALGB study showed that patients who were given Revlimid maintenance after a transplant achieved an overall survival rate of 90% after two years or more, compared with 83% for patients receiving a placebo. Some doctors believe that maintenance therapy of some kind will become the new standard of care. Here is the IMF article. The IMF is the International Myeloma Foundation.

That information and other myeloma facts were presented at a Journalists Workshop, a video press conference by the IMF, which is available for viewing on the web. It lasts about an hour, and is a summary of the high points of the Myeloma Workshop. At about 45 minutes there is a one-minute clip showing me running in a marathon in Providence, Rhode island last Sunday. The clip was included in the press conference as a demonstration of the effectiveness of the new study drug pomalidomide. You could fast forward through the running part, but the rest of the video is actually interesting and I recommend it.

Some Current Test Results:

Test	Feb 07	Mar 09	Apr 07	May 05	Remarks
M-spike g/dL	1.0	1.0	1.0	1.0	Best tumor measure?
IgG mg/dL	1200	1050	1080	1130	Best tumor measure?
L FLC mg/dL	2.47	2.50	2.08	3.07	L Free light chains
Calcium mg/dL	10.1	9.6	9.9	9.4	Dandy
Creatinine mg/dL	1.0	1.0	1.2	1.1	Kidney, OK
HGB g/dL	16.0	15.2	15.5	14.7	Hemoglobin, good
RBC M/uL	4.44	4.40	4.27	4.11	Red cells, marginal
WBC K/uL	4.1	5.3	4.9	4.6	White cells, OK
ANC K/uL	1.40	1.61	1.90	1.90	Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Today's lunch: Leftover roast organic chicken (I love cold chicken), hot organic broccoli with a little hot sauce, organic heritage plum tomatoes, and organic USA strawberries. Everything there is normal size except the strawberries, which are enormous. It's strawberry season!

Fifty One Marathons

2011-05-02T05:56:00.004-05:00

Two weeks ago I finished my 50th marathon, on the Jersey Shores boardwalks. Yesterday was the 51st, running through beautiful Providence Rhode Island. All 51 of those have happened since my myeloma diagnosis. The International Myeloma Foundation sent a photojournalist to interview me yesterday and film some running.

At a medical meeting just now beginning in Paris, journalists are putting together videos which will include a little of my running. It should go live at 11:30 Eastern Thursday, May 5, at this web address.

More later.

With Sunshine after the race:

Boring Mayo Clinic Visit

2011-04-09T20:07:00.002-05:00

Never. Even though nothing changed this month, I never feel complacent. Forty cycles on the pomalidomide (CC-4047) study are complete, and nothing changed this month, so I could have felt complacent. But I dread the inevitable day that the myeloma figures out how sidestep the pomalidomide - life will change when that happens, maybe not for the worse, there are other treatments, but life will change. Also, I suppose I don't want myeloma's reemergence to be a shock when it happens, and it can't be a shock if I'm always fully aware of the possibility.

Dr RH:

This visit was as routine as any we have. We don't know Dr RH very well, so after the medical stuff was done we chatted a bit, learned a little about each other. We like him - he'll do well for us, replacing Dr KDS, who really is gone now and whom we will miss. We also saw Dr L for a few minutes, a treat.

The Evolution of a Myeloma Recurrence:

With few exceptions, myeloma figures out how to defeat every medication. Maybe now, maybe later, even much later, but it does. I am definitely not a doctor or a biologist or anything of the sort, but I nevertheless have a simpleminded theory about that:

Some carcinogen alters the DNA of a plasma cell, or maybe a memory B cell, in such a way that the cell forgets how to die when it ought to, and perhaps with other DNA problems too, but without alerting the body's normal defenses. There may actually be MANY alterations of the cells, but most are detected and squashed, or cause that cell to die, or fail for some other reason, until one suceeds. This is how cancer starts, including myeloma.
That cell also has the ability to replicate itself or to produce other myeloma cells. I think there is still some dispute about how this happens - is the original progenitor a stem-like cell or an actual plasma cell? Anyway it multiplies.
A medicine (Revlimid, Velcade, melphalan, whatever) is able to kill the myeloma cells or reduce their rate of replication. The tumor burden goes down - yay!
But additional carcinogens, or the same carcinogenic influences, continue to make random alterations to the DNA of the remaining myeloma cells, which mat not be very stable to begin with. Most of these changes don't make any difference, or they may even cause the cell to die, but eventually one of those changes, by chance, makes a cell resistant to the current medications.
Now, that twice-altered cell is the strongest of the myeloma cells and is able to proliferate faster than the old ones in the face of the medication. It multiplies, replaces the old myeloma cells, and the drug is no good any more.

Anyway that's my theory and I'm sticking to it. If it were true, what would be the implications? Most important, REMOVE AS MANY CARCINOGENIC INFLUENCES AS POSSIBLE! We should do exactly the same things that we should be doing to PREVENT cancer in the first place:

Eat the healthiest foods, organic where that is important, to reduce the intake of pesticides.
Maintain a healthy weight - studies show that overweight alone is a carcinogen.
Exercise several times per week, to keep the body's immune system and other systems healthy.
Don't smoke, duh.
Stay away or protect ourselves from other common carcinogens such as gasoline, solvents, formaldehide in new construction or furniture, herbicides, pesticides, plus food additives such as nitrites and BHA/BHT.

I wrote more about cancer prevention in a previous post. It's how to live.

Gluten-free oatmeal with organic yogurt, organic strawberries, organic pear, pineapple, kiwi, walnuts. Might be some organic blueberries under there too.

Calcium In Heart and Arteries

2011-04-07T09:23:00.004-05:00

Recently I posted about remarks in two different PET scans. A PET scan uses two different imagining technologies, combining the results to show where cancer cells might be congregating. One of those is a CT scan, which shows clear images of bones and any other calcium in the body. Three years ago, in 2008, the radiologist who read the CT images said "There are scattered mild vascular calcifications in the aorta and coronary arteries." Calcification is an indicator of heart disease, but this didn't sound too bad. This year, though, the radiologist wrote "Coronary and vascular calcification. Bilateral renal calculi." Sounds worse, more definite, right? For sure, the kidney stones (renal calculi) were not mentioned three years ago, and no qualifiers like "scattered mild" appeared this year.

The scans were viewed by different radiologists, so was there really a difference, or was the apparent difference simply due to different personalities or reporting styles? I actually called the radiologist who did the recent report, and didn't get much help. He sounded very busy and, without looking up my actual report, said (1) he sees calcifications on many (most?) scans, (2) for sure all of the scanned images that he uses to make his report would be there for me to see on the DVD, and (3) I should trust the opinion of my oncologist rather than his, as he was "just" a radiologist.

PET Images:

I asked Mayo Clinic to send me a DVD containing both scans, so that I could provide them to local doctors but also so that I could peek at them myself. The DVD contains thousands of images and also the software necessary to view them. I believe I have identified several calcified spots in the heart, and I see no difference between last year's scans and those of 2008. Same spots in the same places. Similarly, I see very evident kidney stones, but not much difference since 2008. I've already reduced my calcium supplements to deal with those.

Doctor NB:

My new primary care provider (PCP) is just out of residency, but seems pretty sharp. He assured me that "almost all" of the CT scans he sees show vascular calcification. That is scant comfort, of course, when we know that heart disease is the leading cause of death among mature adults. But he also said that I am already doing everything that he would recommend. We eat a very heart-healthy diet, I run 20-30 miles per week, and get enough sleep. My blood pressure is fine, cholesterol is good except for HDL, which is chronically too low, always has been. We talked about ways to improve HDL, but I've tried niacin without success and he was reluctant to prescribe statins because the potential side effects might outweigh the benefit.

We've read that HDL can be related (inversely) to belly fat, and I have an extra 10 or 15 pounds of that. When I told Dr NB that I intended to take some of that off, to help increase HDL, he seemed a bit skeptical but certainly didn't discourage it.

Bottom Line: I'm done worrying about "calcification" for now. I'll do the Weight Watchers' thing, take the weight off, and then we'll see.

This is a CT "fusion" Image, from the PET/CT scan, looking at a slice of my body from the viewpoint of the feet. I'm laying on my back, so the spine is at the bottom of the image, the sternum at the top, upper arms outside right and left. The two large, dark areas are the lungs, with the heart appearing as a gray area between the lungs, slightly off-center to the left (our right). There is one bright spot in the heart - a calcification. There are a few others in other parts of the heart. Anyway, that's my very amateurish interpretation:

Not So Fast, Buster

2011-03-23T21:46:00.002-05:00

In the last post I celebrated three years' stable disease in the pomalidomide drug study, and especially the disappearance of the bone lesions revealed by a PET scan three years ago. Yay!

But oops. The very last sentences of the very last-received test result (the new PET scan) say: "Significant incidental findings on the low-dose unehnanced CT fusion images. Coronary and vascular calcification. Bilateral renal calculi."

What does this mean? I'm definitely not a radiologist, but I see two issues, neither related to myeloma:

Calcification (hardening) of blood vessels in the heart and elsewhere; and
Kidney stones.

Kidney Stones:

Dealing with the kidneys first, I took a good look at my calcium intake and found that I was getting about twice the recommend 1200 mg of calcium daily. I took 1200 in supplements, and most days got another 1200 or so from food, mostly dairy products. Kidney stones can cause infection, and of course the severe knife-in-the-gut pain that strikes if a stone enters the urinary tract, so they are a concern.

I stopped the calcium supplements, at least for now, except for one 300-mg tablet in the evening if the day's intake from food is below 1200 mg. That should help the kidneys, though I can only hope that it doesn't impact bone strength. Even more important is water intake, and I don't drink much - getting water mostly from coffee and fruit. I need to find a way to make increased water intake a normal part of my day. I'll start with one 16-oz glass of ice water at the desk every morning and afternoon, see how that goes. If I can make it work, that will be a big improvement.

Coronary and Vascular Calcification:

That's athersclerosis. Yikes! What an awful-sounding word, even in print. How can this happen to a dedicated, competitive runner who eats as well as I do? A PET scan three years ago noted "scattered mild calcifications," but the qualifiers "scattered" and "mild" are not found in this month's scan, hence the concern. The images were interpreted by different radiologists, so it's hard to know the amount of change, but the second radiologist was looking at the notes from the previous scan when he made his new notes. We've heard that the cure for myeloma is to live long enough to die of something else, but heart disease is a quick way to get there and I'm not in that much of a hurry. I'd prefer they would come out even.

Perhaps the reduction in calcium intake will help - the literature I've found seems to be mixed. One article suggested that calcium supplements may increase the risk of athersclerosis while normal amounts of calcium from food may not. But more can be done.

I now have at least four independent risk factors for serious heart disease:

Age of 70;
Family history - my paternal grandfather died of heart disease, and my father has heart disease;
Chronically low HDL; and
Now, diagnosed "coronary and vascular calcification." Is that a risk, or actual disease?

I can't fix the first two, but I may be able to do something about HDL, and thereby calcification as well. Since 1992 my HDL has wobbled between 26 and 42, most recently 36, where a desirable HDL is 60 or more g/dL. Total cholesterol is fine, at 154 g/dL, but HDL proteins are the blood-vessel scavengers capable of undoing damage done by LDL. Three years ago my HDL was 42, but since then dexamethasone (DEX) has destroyed some of my muscle tissue, which hasn't returned since discontinuing DEX. In its place, or rather in a different place, my body has accumulated an equal weight of excess fat, especially around my belly. According to a Mayo Clinic article, this belly fat may significantly degrade HDL.

In past years I've tried and given up on statins, garlic, green tea, and niacin, none of which raised HDL and all of which were either unpleasant or had unwanted side effects. I do know how to lose weight, though, and the side effects are quite positive: Better body image, better overall health, faster as a runner, and hopefully, improved HDL. I'm not clinically overweight by any means, with a BMI of 22.1, but my body is now out of proportion, with a waist of 35 inches (89 cm) compared with a height of 70 inches (178 cm). I'm definitely not "trim" any more. Therefore, I've started back on the Weight Watchers program, keeping a journal of what I eat and making the best choices. It's not easy but it works; the weight will come off, slowly and sensibly. 154.5 pounds (70.1 Kg) this morning, heading down.

Further, I have requested copies of both PET scans from Mayo, and will make copies and then give them to my new PCP, Dr NB. Depending on his recommendations, a visit to a cardiologist could be in my future as well. I'll probabaly see my naturopathic doctor too, once we know more about the risk.

This has little or nothing to do with myeloma, I know. So if it becomes a big thing, I may start another blog, about heart disease. Uff-da.

Breakfast:

Best Possible News

2011-03-09T20:23:00.003-06:00

Well, the BEST possible news would be if the cancer magically disappeared, but I haven't seen anyone walking on water lately except the locals who fish through the ice. Otherwise the news is all good:

IgG is down from 1200 to 1050 mg/dL;
M-spike is unchanged at 1.0 g/dL, but this month it actually makes sense;
Free light chains are stable, similar to other recent values;
A bone-density (DEXA) scan shows a slight INCREASE in bone density. The differences in results are within the measurement error of the machine, but at least the bone density has not gone down since one year ago; and
A PET scan three years ago, at the beginning of this study, showed myeloma lesions in three bones. Today's scan shows no lesions. Combine this with good blood-test results for calcium, kidney (creatinine), and hemoglobin, the C.R.A.B. symptoms are all negative, so the myeloma is not symptomatic any more. Cool.

This was the 39th cycle of the pomalidomide drug study at Mayo Clinic in Rochester. Pomalidomide and dexamethasone brought my M-spike down from 2.7 to 1.0 g/dL in just a few months, and has kept it stable since. According to one famous doctor (I can't remember who), stable disease is almost the same as a complete remission. I'll remain on the study, of course, because no one believes that the myeloma will sit still without the pomalidomide.

Happily, the dexamethasone was gradually reduced, and finally stopped over a year ago, and the pomalidomide has been on its own since then. I have mild side effects: Slight neuropathy in fingers and feet, and a reduced heart rate which affects running but nothing else. There is also a risk of deep-vein blood clots, for which I take an aspirin daily. I am happy to accept those risks and side effects in exchange for symptom-free myeloma.

Kudos to Mayo Clinic:

All of the tests, including all of the blood tests, an electrocardiogram, the DEXA scan, and the PET scan, were done in one day, with all results available by the end of the day. What a place. It sounds like bragging, I guess, and perhaps it is, but really I wish everyone could live close to a medical center like Mayo Clinic. I feel blessed.

Actually, I did have the CBC with differential done on the previous day, not because Mayo would have any problem with it but because my neutrophil count is always higher in the afternoon, and my other blood tests are done in the morning. It worked again - the neutrophil count has to be at least 1000 lil' soldiers per microliter, or I have to stop the study for a while, and they were 1610.

Doctor RH:

Dr KDS is gradually going away, which we lament, but alas, it will really happen. She stopped by today, but for most of the appointment we saw Dr RH, who did an excellent job in her stead, of course. We discussed:

Recent pain in the left hip. Is this myeloma? Answer: Wait for PET scan results. Later in the day, the PET scan was negative for lesions anywhere, including the hip.
Recent pain in the right femur: Myeloma? Same as above.
Second primary cancers in stem cell transplant patients on Revlimid maintenance: Dr RH was totally up to speed on this issue, and also confirmed that the "information isn't there" to tell us whether people on pomalidomide maintenance could experience the same thing. Anyway, I think the whole issue may end up being a tempest in a teapot. I hope. There are a LOT of good doctors looking into it though.

Some Current Test Results:

Test	Dec 16	Jan 13	Feb 07	Mar 09	Remarks
M-spike g/dL	1.0	1.2	1.0	1.0	Best tumor measure?
IgG mg/dL	1080	1170	1200	1050	Best tumor measure?
L FLC mg/dL	2.41	2.49	2.47	2.50	L Free light chains
Calcium mg/dL	9.8	10.3	10.1	9.6	Dandy
Creatinine mg/dL	1.0	1.4	1.0	1.0	Kidney, OK
HGB g/dL	14.6	15.3	16.0	15.2	Hemoglobin, good
RBC M/uL	4.23	4.48	4.44	4.40	Red cells, marginal
WBC K/uL	5.1	3.3	4.1	5.3	White cells, OK
ANC K/uL	2.50	1.19	1.40	1.61	Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Roast bison, quinoa with organic spinach and raisins, organic variety tomatos:

Fighting Secondary Cancers

2011-02-11T17:00:00.005-06:00

I'm cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don't actually believe that my monoclonal proteins dropped that much, because last month's figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn't take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.

STABLE is the proper description:

The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn't work that way, but so far pomalidomide has given me nearly three years of normalcy.

When pomalidomide fails, what's next for me?

Every treatment fails eventually - that's a dependable feature of myeloma. Apparently, though, I will have plenty of options. I've had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials - lots going on, and I might be eligible for several of them. I'm feeling good about the future.

We even discussed bone marrow transplant, but I'm not sold on that, for me. I have a slow-moving variety of myeloma, and I'm hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that's my plan. Meantime, life is to be lived!

What About Secondary Cancers?

There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.

So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all "modulate" the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.

THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.

If the immune system is suppressed, however, maybe it wouldn't detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn't actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.

If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don't know if anyone has yet looked at the information that does exist. But I do know that I've been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.

How Do We Fight Secondary Cancers?

Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.

Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we'll be here for our grandchildren. I've been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:

Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the "dirty dozen" lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I'm not getting enough.
Addictions:
- Smoking: Oh, for God's sake, if you still smoke, do whatever it takes to stop. No excuses - it's killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
- Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change - you will fail if you think it might not. Talk to people who have done it.

We three have followed these principles for years now. Does that mean we won't get additional cancers? No, it means that our risk is lower than it would be otherwise. That's all that any of us can do.

Some Current Test Results:

Test	Nov 18	Dec 16	Jan 13	Feb 07	Remarks
M-spike g/dL	1.2	1.0	1.2	1.0	Best tumor measure?
IgG mg/dL	1300	1080	1170	1200	Best tumor measure?
L FLC mg/dL	2.92	2.41	2.49	2.47	L Free light chains
Calcium mg/dL	10.3	9.8	10.3	10.1	OK
Creatinine mg/dL	0.9	1.0	1.4	1.0	Kidney, OK
HGB g/dL	15.0	14.6	15.3	16.0	Hemoglobin, good
RBC M/uL	4.26	4.23	4.48	4.44	Red cells, marginal
WBC K/uL	5.9	5.1	3.3	4.1	White cells, OK
ANC K/uL	2.30	2.50	1.19	1.40	Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

High-quality food is often quite colorful. Canned wild-catch salmon baked under yogurt and a little shredded cheese, organic lettuce, pineapple, pickled organic beets, onions, organic peas:

Itty Bitty Snowstorm

2011-01-16T16:48:00.004-06:00

We three headed off to Rochester for my every-28-day early-morning blood draw at Mayo Clinic, part of the Phase II pomalidomide study. Highway 52 was dry and clear of ice, until suddenly we found ourselves in a snow squall at 65 mph. Traffic slowed, the road was wet, the flying snow swirled in our headlights. Then, in less than a minute, the snow disappeared again, giving way to a clear, starry sky. Why? During that little storm we passed by a refinery, and apparently the zero-degree air was turning the refinery's abundant water vapor exhausts into a local micro-mess for travelers. I've never seen that before. I don't mind if I never see it again.

Cancer Markers:

The Mayo visit went OK, the end of the 37th 28-day cycle. After a 6:30 am blood draw I was scheduled for a 3:15 pm visit with Dr L, but got in to see Dr KDS (yes, she's still here!) instead at about 10:15, which got us home hours ahead of the original schedule.

Test results, however, were no better than so-so. IgG went up about 8%, from 1080 to 1170 mg/dL, and M-spike skyrocketed 20% from 1.0 to 1.2 g/dL. Converting units, this puts M-spike at 1200 mg/dL, which is a physical impossibility because M-spike is the monoclonal (bad) part of IgG and therefore must always be lower than IgG. So which measurement is wrong? I'm of the opinion that IgG, measured by immunofixation, is more accurate than M-spike, measured by electrophoresis, so I'll take that IgG value. In fact, I think that Mayo's M-spike measurements have always been high. When I changed from Minnesota Oncology to Mayo three years ago, my M-spike jumped up 32% even though IgG sat still. I don't know which is wrong, MOHPA or Mayo, but there is certainly something fishy today. Anyway the cancer markers are up a little, but they do bounce around, and I don't need to get my shorts in a twist about it.

Calcium and Creatinine:

Dr KDS is just a little concerned about calcium at 10.3 mg/dL and creatinine at 1.4 mg/dL, both slightly above the reference range. Calcium has been that high before, but creatinine, which is a measure of kidney function (malfunction?), has never been quite so high. She gave me an order to have those tested again in a week, at the local clinic. She couldn't think of a medical reason why BOTH calcium and creatinine would go high at the same time. Vitamin K2 helps calcium to deposit in the bones instead of circulating in the blood, and I had been out of it for a couple of weeks, so I'll take that for the calcium and lots of water for the creatinine and see if those numbers go down.

Neutrophils:

Pomalidomide drives neutrophils down, including mine. If they go below 1000 cells per microliter, I have to go off the study, at least until they come back up. As in recent months, I had neutrophils checked (CBC with Diff) the day before the Mayo visit, in the afternoon at the local clinic, instead of in the morning at Mayo when all of the other blood tests are done. At 1:00 pm on Wednesday, neutrophils measured 1800, well above the threshhold and actually into the "normal" range. Unknown to me, though, Mayo had accidentally scheduled another CBC, to be done with the other tests at 6:30 am Thursday. Since it was the more recent test, it would override the previous test if it were under 1000. Happily, it was 1190. Note, though, that the afternoon neutrophil count was 51% higher than the morning count. I also do some vigorous exercises just before the blood draw, because adrenaline helps too. These are not tricks - the neutrophils are real - they just hide in the morning. It doesn't work for everyone, I'm told, but it's working for me.

Some Current Test Results:

Test	Oct 20	Nov 18	Dec 16	Jan 13	Remarks
M-spike g/dL	1.1	1.2	1.0	1.2	Best tumor measure?
IgG mg/dL	1130	1300	1080	1170	Best tumor measure?
L FLC mg/dL	2.78	2.92	2.41	2.49	L Free light chains
Calcium mg/dL	10.0	10.3	9.8	10.3	Slightly high
Creatinine mg/dL	1.0	0.9	1.0	1.4	Kidney, high
HGB g/dL	14.9	15.0	14.6	15.3	Hemoglobin, OK
RBC M/uL	4.31	4.26	4.23	4.48	Red cells, marginal
WBC K/uL	4.3	5.9	5.1	3.3	White cells, OK
ANC K/uL	2.14	2.30	2.50	1.19	Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Recent breakfast, oatmeal on top. Frozen organic blueberries and strawberries, fresh kiwi, organic walnuts, organic kefir (tastes better than yogurt):

Whoopee!

2010-12-17T20:04:00.008-06:00

IgG and M-spike both dropped 17% in the last 28 days, more than offsetting the increase of last month, and returning to levels that are typical of the stable plateau of the last two and a half years or so. Still on the pomalidomide (CC-4047) trial, I'm a happy camper. Please enjoy a beer for me.

Why did it go down? The better question is, why did it go up last month? Maybe because at that time I was recovering from two different virus infections and probably a related bacterial infection, and also had quite recently received my flu shot, the Magnum Jolt version for seniors.

Interesting: If it's true that IgG went up last month because of challenges to the immune system, then M-spike must have gone up for the same reason. Indeed, it's possible that the entire increase in IgG came from the M-spike component of IgG. Why would M-spike respond to challenges from intruding organisms? The answer is way above my pay grade.

Neutrophils: Again I had the CBC done at the local clinic on the afternoon before the visit to Mayo, because my neutrophil count seems to be much higher in the afternoon than in the morning. Also, just before the blood draw, I run up four flights of stairs and do some pushups, trying to squeeze out a little adrenaline, which is thought to tease the neutrophils out of their hiding places. Absolute neutrophil count was 2.5 K/uL, well into the normal range and WAY above the cutoff threshold of 1.0. Yay.

Discussed with Dr KDS:

We agreed that I'm still stable on pomalidomide as a single agent. I won't change anything.
A recent study has (finally!) shown that Zometa, one of the bone-building bisphosphonates, actually has a modest anti-myeloma benefit in addition to its bone-strengthening ability, improving both the average time to disease progression and the overall survival of study participants. Doctors are still getting their heads around this, but one possibility for some patients is Zometa once every month! Zometa can have serious side effects, though, including unusual and disabling fractures, and osteonecrosis of the jaw, so it is not an automatic prescription.
Two more studies, evaluating the use of Revlimid as maintenance therapy after stem cell transplant, showed that patients in the Revlimid arm of the study developed more secondary cancers than those in the placebo arm. Numbers were small, however, with less than 3% in both arms together developing a secondary cancer. Both studies, by the way, also demonstrated that maintenance therapy improved time to disease progression, but neither showed a clear improvement in overall survival.
Recent evidence suggests that my immune system may not be as strong as I have though it was. Three different virus infections were defeated only very slowly. Dr KDS is concerned that I could contract an opportunistic fungal infection called pneumocystis pneumonia, common with AIDS patients who may also have compromised immune systems. She prescribed a sulfa-based antibiotic called trimethoprim-sulphamethoxazole, brand name Bactrim, to be taken every day as a prophylactic treatment to prevent that pneumonia and any number of other bacterial and fungal infections.

There is a slim possibility of myelosuppression, however, which means low red and white blood counts; HELLO I already have that from the pomalidomide. It can also, rarely, cause liver or kidney failure, a potentially fatal complication. I hadn't heard of Bactrim prophylaxis before, but Dr KDS said that it has been used without incident by other patients in my situation. She knows that I will study this stuff and do my best to balance the risk of pneumonia against the risk of side effects, before making a decision. She also gave me an order for liver and kidney function tests which I can have done after trying the antibiotic for a week or two. Perhaps I'll talk to Dr B, my new PCP, about this.

Some Current Test Results:

Test	Sep 23	Oct 20	Nov 18	Dec 16	Remarks
M-spike g/dL	1.2	1.1	1.2	1.0	Best tumor measure?
IgG mg/dL	1070	1130	1300	1080	Best tumor measure?
L FLC mg/dL	2.58	2.78	2.92	2.41	L Free light chains
Calcium mg/dL	10.0	10.0	10.3	9.8	Below 10.2 is OK
Creat mg/dL	0.9	1.0	0.9	1.0	Kidney, OK
HGB g/dL	15.8	14.9	15.0	14.6	Hemoglobin, OK
RBC M/uL	4.43	4.31	4.26	4.23	Red cells, marginal
WBC K/uL	4.2	4.3	5.9	5.1	White cells, OK
ANC K/uL	1.60	2.14	2.30	2.50	Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Uncertain Result

2010-11-22T07:36:00.007-06:00

At the end of the 35th cycle of pomalidomide, IgG is up 15% to 1300 mg/dL, and M-spike is up 9% to 1.3 g/dL from the end of the previous cycle. Further, lambda light chains are up a little with kappa chains down. The markers are consistent, all pointing to an increase in actual tumor burden.

But maybe not. I had a bad cold with fever for most of the four weeks preceding this blood draw, and then also got my "high dose" flu shot. Either of those insults could have caused IgG to go up, the "good" immunoglobulins responding to the threats. Also, M-spike had been at 1.3 two months before, so it's just back to where it had been. As always, I'll be wondering what next month's tests will bring.

Neutrophils were up this time, well into the normal range, probably in response to those same two threats. We get the CBC at the local Stillwater clinic the afternoon before the Mayo Clinic visit, because my neutrophils are much higher in the afternoon, but I suspect they would also have been well above the threshhold of 1.0 K/uL in the morning at Mayo on this occasion.

Calcium is up because I took my usual supplements. Often I skip calcium tablets for a day or two before the Mayo blood draw, to avoid this slightly-high reading. It will be down next month, if I remember to skip calcium.

Flu Shot:

I got mine at the local clinic, and learned afterward that there are two dosages: (1) Normal dose for adults, and (2) "High dose" for seniors 65 and older, four times the strength, which is the shot I received. In discussing this later at Mayo Clinic, it appears that the CDC has given very little guidance about the use of this high-dose shot. Should a senior be given that shot even if he/she has a compromised immune system? If so, what about an adult under 65 with a compromised immune system? Apparently, doctors are left to make this decision themselves with no help from the CDC.

Some Current Test Results:

Test	Aug 24	Sep 23	Oct 20	Nov 18	Remarks
M-spike g/dL	1.1	1.2	1.1	1.2	Best tumor measure?
IgG mg/dL	1100	1070	1130	1300	Best tumor measure?
L FLC mg/dL	2.79	2.58	2.78	2.92	L Free light chains
Calcium mg/dL	10.1	10.0	10.0	10.3	Below 10.2 is OK
Creat mg/dL	1.3	0.9	1.0	0.9	Kidney, OK
HGB g/dL	15.7	15.8	14.9	15.0	Hemoglobin, OK
RBC M/uL	4.39	4.43	4.31	4.26	Red cells, marginal
WBC K/uL	4.4	4.2	4.3	5.9	White cells, OK
ANC K/uL	1.41	1.60	2.14	2.30	Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Banana Man and Minnesota Don (right) near the finish of the Route 66 Tulsa Marathon. Banana Man is a Team In Training (TNT) runner, raising money for the Leukemia and Lymphoma Society, which supports myeloma research too. Banana Man had run another marathon the DAY BEFORE, or else I would never have seen him after the start.

Pomalidomide Rocks

2010-10-23T12:48:00.003-05:00

At least for me it does. I've been on a study of Celgene's pomalidomide (CC-4047) for 34 complete cycles now, and it has kept my myeloma stable for all of that time. At first I took it with "low-dose" dexamethasone (DEX), and after two years graduated to pomalidomide alone (actually with aspirin and acyclovir). M-spike and IgG dropped quickly in the first three months, and for more than two years IgG has been about a third of the starting value with M-spike tracking appropriately.

"Pomalidomide" is the drug's generic name, while CC-4047 is a code name for the same drug in drug trials. Someday it may have the brand name "Actimid," when it is available for sale. I hope that happens soon, because it's good stuff and people are dying right and left.

I think this is publishable news: Mayo Clinic will soon open a new arm of the CC-4047 study. Entrance criteria were not established when I was there on Oct 20, but one objective is to make it available to more people who need it, so I suspect the entrance criteria will be fairly wide.

Cycle 34 Test Results:

At the end of the previous cycle, my IgG was down a little and M-spike was up. This time, IgG is up a little and M-Spike is back down. I suppose that's the definition of "stable" for us myelomiacs, because these tests do have some error tolerance and our blood varies too. Other markers, like lambda light chains, calcium, and some of the CBC blood counts are virtually unchanged. No problem - a boring visit -:) Let's have lots more of those!

Neutrophils were a bit of a surprise, though. The study requires at least 1000 of those tiny critters per microliter of blood, or else the pomalidomide has to be stopped until neutrophils climb above that mark again. Sometimes mine have been below 1000, so we've chosen to switch to 1:00 pm blood draws, taken the day before the Mayo visit, because my neutrophil counts are reliably higher in the afternoon. This time, though, the afternoon count was 2100, actually well into the "normal" range, and another count the next morning at Mayo also showed 2100. Why? Maybe because I have a miserable cold, and those little buggers are an essential part of the battle that's going on. They have been recruited and they are rallying!

Mayo, Dr KDS:

I have a pain in the index finger of the left hand - can't quite localize it though. Could it be myeloma? Answer: Probably not - myeloma usually attacks larger targets with more marrow.
I changed my diet this month to reduce the amount of simple sugar. This means no cookies or other sweets, and less fruit. Since the myeloma didn't change much, I believe this experiment was a failure and will go back to the higher-fruit diet.
I also had more constipation than usual this month. It's a known side effect of pomalidomide, but we agreed that the increase was probably due to the reduction of fruit in the diet.
An afternoon blood draw produces a neutrophil count about 50% higher than does a morning draw, for me. Dr KDS tried that with another patient, though, and it didn't work. We're all different.

Some Current Test Results:

Test	Jul 29	Aug 24	Sep 23	Oct 20	Remarks
M-spike g/dL	1.1	1.1	1.2	1.1	Best tumor measure?
IgG mg/dL	1160	1100	1070	1130	Best tumor measure?
L FLC mg/dL	1.86	2.79	2.58	2.78	L Free light chains
Calcium mg/dL	9.9	10.1	10.0	10.0	Below 10.2 is OK
Creat mg/dL	1.0	1.3	0.9	1.0	Kidney, OK
HGB g/dL	14.0	15.7	15.8	14.9	Hemoglobin, OK
RBC M/uL	4.16	4.39	4.43	4.31	Red cells, marginal
WBC K/uL	2.8	4.4	4.2	4.3	White cells, OK
ANC K/uL	0.93	1.41	1.60	2.14	Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Cell-phone photo along a local running trail. I love Minnesota in the fall!

US 52 Was Under Water

2010-09-25T20:33:00.005-05:00

We three drive down US 52 from the east side of St Paul to Rochester once every 28 days for my checkup at Mayo Clinic. It's the shortest, fastest route. Usually we get up at 3:50 am, take an hour to shower and get ready, then 90 uneventful minutes later I'm in line for my 6:30 am blood draw. We knew that Thursday would be different, because of the heavy rain, but we didn't know how different. A check of MNDOT's Traffic Conditions Website showed that US 52 was closed, so we went another way - no fun driving in "driving" rain, but US 61 & 63 were open and it took us only about a half hour longer. Heading back, that MNDOT web site said that US 52 was open again, so we started out that way. Just a few miles south of Pine Island, though, we found water rushing across the four-lane highway. Some vehicles were crossing it, but some were not and we turned around. Police were conspicuously absent. At 5 pm the local news said that US 52 was closed right where we encountered the water.

We later discovered that the city of Pine Island had in fact become an island, though it normally is not.

IgG versus M-Spike:

IgG is a measure of ALL Immunoglobulin G proteins, good and bad, where M-Spike is a measure of just those Immunoglobulin G proteins that are monoclonal, the bad ones, all exactly the same. Medically, M-Spike can never be higher than IgG. Thursday my IgG was 1070 mg/dL, but M-Spike was 1200 mg/dL (1.2 g/dL). Not possible. I hate that! I was feeling pretty good about another "stable" result until that M-Spike came bombing in.

I asked Dr KDS about this impossibility - which number is most likely to be wrong? She wasn't sure, but assured me (paraphrasing here) that she has seen this before, because both tests have an error tolerance, but that she was NOT worried. Further, I'm still stable and, as always, let's see what next month brings.

Sigh. I fret about this stuff, and was hoping for a fret-free 28 days. I've been on the pomalidomide (CC-4047) study for 33 complete cycles now, and it has done a fine job of keeping me stable. Nevertheless, I know that the ride will end some day and I will need to take a different course of drugs that may have much worse side effects. So I'm always wondering if that time is near and hoping that it isn't.

For now, though, I'm going to try to convince myself that the M-Spike number is wrong. There is nothing in the other cancer markers to suggest an increase in tumor burden. Calcium is fine, kidneys are fine, liver is fine, and light chains are not much changed. In fact, an IgG measurement of 1070 mg/dL is actually a decrease of 3% from August and 8% from July. We'll go with that.

Carfilzomib:

Mayo Clinic will soon start a trial of this brand-new drug. Carfilzomib is a proteasome inhibitor, like Velcade, at least as effective but much less likely to cause painful neuropathy. Furthermore, it can be effective in patients for whom Velcade has failed. I blogged about it here. I'm not sure what it will take to qualify for the trial, but if you go to Mayo you might ask about it.

Velcade:

I am not a medical doctor, so you shouldn't believe anything that I say. Nevertheless: If you are offered twice-weekly Velcade as a treatment, just say NO. Twice-weekly infusion is still the official, approved regimen, even though several studies have shown that once-weekly infusion is much less likely to cause painful neuropathy in most patients. In addition, there can be a threshhold effect: if a patient on twice-weekly infusions does develop neuropathy, switching to once-weekly may not help the neuropathy much. Once you get the neuropathy it's yours to keep, and any amount of Velcade will reactivate it. A patient who starts out with once-weekly infusions, however, is much less likely to develop serious neuropathy in the first place. If your doctor insists on starting out with the official twice-weekly protocol, change doctors. No kidding. Velcade is an excellent drug, but it's useless if the neuropathy prevents you from taking it.

Some current test results:

Test	Jun 29	Jul 29	Aug 24	Sep 23	Remarks
M-spike g/dL	1.0	1.1	1.1	1.2	Best tumor measure?
IgG mg/dL	1120	1160	1100	1070	Best tumor measure?
L FLC mg/dL	1.74	1.86	2.79	2.58	L Free light chains
Calcium mg/dL	9.9	9.9	10.1	10.0	Below 10.2 is OK
Creat mg/dL	1.2	1.0	1.3	0.9	Kidney, OK
HGB g/dL	14.5	14.0	15.7	15.8	Hemoglobin, OK
RBC M/uL	4.30	4.16	4.39	4.43	Red cells, OK
WBC K/uL	3.4	2.8	4.4	4.2	White cells, OK
ANC K/uL	1.09	0.93	1.41	1.60	Neutrophils, low

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Afternoon Delight

2010-08-25T19:57:00.004-05:00

Neutrophil Count:

I'm still taking pomalidomide (CC-4047), participating in a trial of that new drug. It has kept my tumor burden low and stable for two and a half years, but in the last half year it has also suppressed my neutrophils enough that they tend to fall below the cutoff of 1000 cells per microliter (1.0 K/uL). In each prior case we have drawn the initial (failing) blood sample in the morning. But in another blood draw in the afternoon, usually a few days later, the count was always plenty high, sometimes almost double the morning count. In the meantime, though, there was a question whether I should get the pomalidomide pills or not, and more than once the treatment actually slipped a few days.

So this time we finally got smart and did the blood draw (CBC with differential) the AFTERNOON BEFORE the Mayo visit, at the local clinic. I ran up and down a few flights of stairs first, as usual, trying to work up a little adrenaline to chase some neutrophils out of their hiding places. The clinic did a very professional job, running the CBC and manual differential so quickly that I had the printout in my hot fist less than an hour later. It showed a neutrophil count of 1400, so I went to Mayo the next morning, August 24, knowing that there would be no drama about the neutrophil count and the pomalidomide. A saving of money, time, and stress. Whew.

IgG dropped about 5% this time, from 1160 to 1100 mg/dL, which is good. M-spike, however, remained the same at 1.1 g/dL (1100 mg/dL), which is technically impossible. M-spike measures the BAD (monoclonal) portion of immunoglobulin G, whereas IgG measures the total of both good and bad. They cannot be equal unless the good portion is zero, which is quite unlikely. Both measurements have tolerances, however, especially M-spike, and I suspect that they just happened to lean toward one another this time. In any case the result is either stable or down a little, which is good. Lambda light chains are up quite a bit, but so are Kappa light chains and the ratio is virtually unchanged. I'm happy - on to Cycle 33!

Supplements:

I hate taking supplements. I admit it. I take a LOT of them, but I have to make myself do it. This time my 7-day pill minder ran out on the same day that the cycle started, and I didn't fill it right away. When it's empty, I don't take any supplements, and for ten days I just didn't take the time to fill those little plastic boxes, though I religiously took the pomalidomide. When I did fill the boxes again, I cut back the number of different supplements significantly. I dropped the curcumin, feverfew, flaxseed oil, pancreatic enzymes, resveratrol, bromelain, milk thistle, and half of the CoQ-10 (ubiquinol). Later I put one or two of those back - the current supplement regimen is here.

Results of the supplement holiday:

Tumor burden: Nothing happened, at least nothing bad. I conclude that those dropped supplements have not contributed to the myeloma treatment.
Neuropathy: It did seem to get a little worse. Previously, I felt some numbness in the right thumb and the left pinkie finger. Now, though, I feel it in both thumbs, both pinkies, and both index fingers. In addition, the backs of both hands feel a little numb. I think that my feet are a little more numb too, athough I haven't tested them as carefully. PLEASE NOTE: My neuropathy is insignificant compared with what many people feel. I'm not complaining about it (much); the important point is that the neuropathy did seem to get worse during the ten days with no supplements and has not improved since resuming them.
A bodily function unique to males actually seemed to improve during the ten days without supplements. Is there one particular supplement that I am still taking which tends to suppress that function? More research is indicated.

Some current test results:

Test	May 27	Jun 29	Jul 29	Aug 24	Remarks
M-spike g/dL	1.1	1.0	1.1	1.1	Best tumor measure
IgG mg/dL	1110	1120	1160	1100	Good tumor measure
L FLC mg/dL	2.58	1.74	1.86	2.79	L Free light chains
Calcium mg/dL	9.9	9.9	9.9	10.1	Below 10.2 is best
Creat mg/dL	1.3	1.2	1.0	1.3	Kidney, normal
HGB g/dL	14.7	14.5	14.0	15.7	Hemoglobin, good
RBC M/uL	4.36	4.30	4.16	4.39	Red cells, low
WBC K/uL	3.6	3.4	2.8	4.4	White cells, OK
ANC K/uL	0.92	1.09	0.93	1.41	Neutrophils, low

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

That's canned salmon a'la Sweet Pea. Big strawberries, small plate.

Race Myeloma Awareness

2010-08-20T16:06:00.004-05:00

A verrrry bad pun - "raise" myeloma awareness - get it?

Myeloma patient Keith May and the IMF have entered a racecar design called "The Survivor" in a contest called Sponsafier. The winning entry will be built as a full sized car, showcased at a NASCAR race, and your votes can help push us across the finish line.

This will raise awareness of myeloma, the International Myeloma Foundation, the great work being done to change the course of myeloma, and the work that still needs to be done. Here's what you can do:

Just take 30 seconds every day until August 28, click nascar.myeloma.org, wait for the screen to develop, and simply click the “vote” button. You don't have to log on or enter ANY information. For extra credit, you can do this with every computer that you have available, every day.

“The Survivor” is one of several hundred entries in the Sponsafier contest. Some are just artistic designs and some like Keith’s support a cause. Now we all have the opportunity to support Keith, myeloma awareness, and the IMF by voting every day for the next 11 days, and by asking your friends, families, and colleagues to vote too.

The messages on the car are simple: “Beat myeloma to the finish line,” and simply “Beat Cancer.” What better way to get there than by racing? Click nascar.myeloma.org.

Neutrophils and Dermatology

2010-08-04T20:57:00.003-05:00

On Thursday, July 29, I visited Mayo Clinic to assess Cycle 31 of pomalidomide (CC-4047). Still stable. IgG was up about 3.5%, and M-spike went from 1.0 to 1.1 g/dL. But we've been here before. In February, IgG was a little bit higher than it was Thursday, and M-spike was 1.1 just last May. The numbers may have a slight upward trend, but they do seem to bounce around on their way up. I'll not worry this time. Maybe next time.

Neutrophils:

My neutrophil count was 930 cells per microliter, just below the threshhold. They won't give me a new bottle of 28 pomalidomide capsules for the next cycle until neutrophils go above 1000.

Therefore, we scheduled another CBC (with differential) for the afternoon, because my neutrophil count seems to follows a circadian rhythm, rising through the morning into the afternoon. In all but one of the previous four cycles I have needed a second CBC, and in each case the second neutrophil count was comfortably above 1000. In all of those cases the second count was taken on a later day, in the afternoon.

This time, though, the second count was done the same day, in the same Mayo Clinic lab. By Thursday afternoon, neutrophils had jumped 63%, from 930 at 9:00 am to 1520 at 1:00 pm. Furthermore, the total white cell count also jumped up from its all-time low of 2.8 up to 3.8.

I knew that physical exertion could increase neutrophils, so before the 9:00 am blood draw I jogged a half mile, walked up and down six flights of stairs, and did 30 pushups. If that helped, it wasn't enough. Dr Lacy informed me, though, that it's really adrenaline that flushes the neutrophils into the blood stream. I asked if a good scare would do as well as exercise, and she thought it would. Anyway, for the second blood draw, I ran a few very short, high-intensity sprints and ran full speed up two flights of stairs. I really don't know if that helped either - maybe the increase is all due to normal circadian rhythm.

Next time, I'll get the CBC drawn the afternoon of the DAY BEFORE the Mayo Clinic visit, at a local clinic. This is OK with Dr L, and may solve the problem of unnecessary duplicate neutrophil counts.

Dermatology:

At the last visit, I asked Dr L about a bump on my forehead, wondering if it was any kind of skin cancer. She didn't think so, but scheduled a "dermatology consult" for this visit. Well, at Mayo Clinic that's more than a cursory peek at one spot. I was asked to put on a hospital gown (the kind that opens in the back, of course), and the doctor checked most of my skin, even those parts that are almost always in the shade.

He was not at all interested in the little forehead patch that brought me in, but he saw several "pre-cancerous" spots on my forehead and zapped them very quickly and efficiently with a little can of freezing spray. He said that about one in a hundred of those spots can become malignant. He asked about a spot on a knuckle, and I told him that it was a bruise (I knew when it happened), but he nonetheless zapped that one too.

I asked him about the skin on my arms, which is now so thin and weak that I can't even use band-aids on it. I know that it has been thinned by age and by steroids, but he said the big culprit is sun damage. We discussed sun screen (use a good one, such as the Vanicream that Mayo Store sells), and hours of the day - he suggested 10:00 to 3:00 I think, but I would go another hour in the afternoon, 10:00 am to 4:00 pm, daylight savings time. That's a three-hour window each side of high noon, sun time.

We asked if there was a way to repair the damaged skin. He said that Retin-A has been tried by some, but he wasn't impressed by the result. Retin-A can make skin even MORE sensitive to the sun, and has other significant side effects, so I'll stay away from it but probably will be more careful to use sunscreen.

The doctor said that if any of the frozen spots became open sores, I should just use vaseline on them. We asked about Neosporin, because I've had such excellent results treating other cuts and scrapes. He replied that they recommended Neosporin in the past, but eventually discovered that about a third of people are allergic to it. So far no problem with my treated spots, but if there is a problem I'll use Neosporin anyway because I don't seem to be allergic.

Some current test results:

Test	Apr 29	May 27	Jun 29	Jul 29	Remarks
M-spike g/dL	1.0	1.1	1.0	1.1	Best tumor measure
IgG mg/dL	1010	1110	1120	1160	Good tumor measure
L FLC mg/dL	2.41	2.58	1.74	1.86	L Free light chains
Calcium mg/dL	9.7	9.9	9.9	9.9	Below 10.2 is best
Creat mg/dL	1.3	1.3	1.2	1.0	Kidney, normal
HGB g/dL	14.1	14.7	14.5	14.0	Hemoglobin, barely OK
RBC M/uL	4.21	4.36	4.30	4.16	Red cells, low
WBC K/uL	3.3	3.6	3.4	2.8	White cells, LOW!
ANC K/uL	0.73	0.92	1.09	0.93	Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

That's the oatmeal, right in front on top.

Stable Again

2010-07-03T19:42:00.007-05:00

Tuesday, June 29, was the end of Cycle 30 of my participation in the trial of pomalidomide (CC-4047). I'm pretty happy to be on that trial, because neither the myeloma nor the drugs have substantially impacted my lifestyle, let alone threatened my life. If you just ignore the fact that I have cancer (?) I'm a lucky guy, and I feel that way.

IgG and M-spike:

This time IgG was virtually unchanged, and M-spike actually went down from 1.1 to 1.0 g/dL. It makes me wonder if last month's M-spike result was off just a bit. That can happen, with M-spike especially. I wish IgG was down too, but maybe next month.

Lambda free light chains were down a lot, but Kappa chains were too, so the ratio improved only slightly - and I really don't know what these numbers mean in my case anyway.

Neutrophils:

Neutrophils remain dodgy. Last time they were 920 (little critters per microliter), below the cutoff, but this time they were 1090, just above. When they are below 1000 I am supposed to hold the pomalidomide until they come back up above, lest I fall prey to an opportunistic infection. Neutrophils are a key component of the very-complex immune system, and a low count (neutropenia) is dangerous. The good news, in my opinion, is that neutrophils seem stable. At first, after discontinuing dexamethasone (DEX), they headed downhill for a few cycles, but that decline may have stopped. I do make every effort to increase the count before each blood draw by exercising, which is supposed to force some of the neutrophils out of muscles into the blood stream. This time I jogged a half mile, pumped 30 pushups, walked up and down six flights of stairs, and did leg stretches. This is apparently a "legal" tactic, but I don't know if it helps. What DOES help, I'm quite sure, is to wait until afternoon for the blood draw, because neutrophils are naturally higher then. I'm trying to get my appointments scheduled for the afternoon instead of the morning.

Discussion with Dr L:

I have a funny-looking spot on my forehead that a dermatologist will check out at the next visit. It's not melanoma, but she can't rule out some other skin cancer.
I had heard someone in our support group say that her doctor told her to wear a medical bracelet saying "irradiated blood only." If I understood correctly, Dr L said that the risk is that a few white cells in the transfused blood could cause graft-versus-host disease, which the irradiation can prevent.
I asked if Mayo Clinic makes it a practice to inform new patients of the existence of support groups. She said that was specific to the doctor and also to the patient. She believes that some new patients are simply not ready to hear the kind of information that is shared at support groups, though others might be.
Dr L estimated that perhaps a third of the patients who entered the pomalidomide trial in my cohort are still in the trial. I didn't ask, but I assume that the drug has stopped working for most of those who have left the trial.
A similar pomalidomide study is currently open and recruiting more patients again, with a slightly different study objective.

Some current test results:

Test	Apr 01	Apr 29	May 27	Jun 29	Remarks
M-spike g/dL	1.0	1.0	1.1	1.0	Best tumor measure
IgG mg/dL	1070	1010	1110	1120	Variation is normal
L FLC mg/dL	1.82	2.41	2.58	1.74	L Free light chains
Calcium mg/dL	9.8	9.7	9.9	9.9	Below 10.2 is best
Creat mg/dL	1.2	1.3	1.3	1.2	Kidney, normal
HGB g/dL	14.6	14.1	14.7	14.5	Hemoglobin, normal
RBC M/uL	4.39	4.21	4.36	4.30	Red cells, normal
WBC K/uL	3.3	3.3	3.6	3.4	White cells, low
ANC K/uL	0.94	0.73	0.92	1.09	Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Nice gluten-free chef salad lunch at a local restaurant:

Vitamin D with Calcium Reduces Cancer Risk in Women

2010-06-13T18:29:00.007-05:00

John A Milner, PhD, Chief of the Nutritional Science Research Group, Division of Cancer Prevention at the National Cancer Institute presented a talk on vitamin D supplementation at the recent meeting of the American Society of Clinical Oncology (ASCO) in Chicago. He stated that current guidelines suggest 400 IU of vitamin D, possibly more for the elderly, up to 600. He also noted that too much vitamin D can be toxic, e.g. 50,000 IU daily for a long time, but that there is probably a safe range between those.

He cited the 2007 data from a Creighton University four-year study of 1179 healthy women aged 59-73, all from rural Nebraska. Subjects took 1400-1500 mg calcium and 1100 IU vitamin D daily, and the study was designed to assess the effect on bone health. In a secondary analysis of the results, researchers found that subjects taking the supplements had almost a 75% reduction in the risk of cancer, all cancers.

Dr Milner noted that the study did not have a "vitamin D only" arm, so there was no way to assess the value of taking vitamin D supplements alone. The NIH is funding further research. Further, he cautioned that other studies have shown that too much vitamin D actually increases the risk of some specific cancers. He also believes that this is a very individual issue, and that additional research will help doctors understand just who might benefit from supplementation and who might not.

I have been taking 1200 mg calcium and 2000 - 5000 IU vitamin D3 (cholecalciferol) daily for several years now. I don't plan to change, but I may have my vitamin D level measured and then see. From his talk, it appeared that the risk of breast cancer and other diseases started to increase as the blood serum concentation of vitamin D reached 60 to 100 nanomoles/L (24 to 40 ng/mL).

This may be the last ASCO post. I'm out of subjects. Back to regular stuff.

Dinner aboard the Amtrak Empire Builder, Chicago to the Twin Cities, slightly blurred by the motion of the train:

ASCO Presentation: Selenium and Vitamin E Do Not Prevent Prostate Cancer

2010-06-13T18:17:00.005-05:00

The government-funded Selenium and Vitamin E Cancer Prevention Trial (SELECT) included 36,000 men, each having a PSA of 4 or less, at many different medical centers, for 5.5 years, and cost $100 million dollars. The men took selenized yeast and vitamin E, or a placebo. Eight percent were smokers. Now seven years later, there is no evidence of a reduced risk of ANY cancer, especially prostate cancer, which the researchers expected would be reduced.

Other studies had suggested a benefit, and researchers don't know why it didn't appear. The presenter, Eric Klein MD, suggested that we may need to take a more comprehensive approach, evaluating the benefit of whole foods instead of discrete nutrients. He pointed to a rat study showing a benefit from tomato powder where there was no benefit from lycopene, the studied nutrient. Maybe a single nutrient only helps people who have a deficiency in that nutrient.

He closed by suggesting that such disappointing results might make it difficult to get another $100 million for the next study!

That's quiche in the middle. Sort of. Good stuff.

Three More Drugs at ASCO

2010-06-07T21:11:00.005-05:00

Several speakers at the ASCO conference mentioned carfilzomib and pomalidomide as the most-promising new drugs in our futures. I posted about those here. At least three other new drugs also show promise: (1) Elotuzumab, (2) Denosumab, and (3) Vorinostat.

Elotuzumab is a laboratory-manufactured monoclonal antibody which works against a cell surface glycoprotein, CS1, highly expressed in multiple myeloma (MM). Like the antibodies that our own bodies produce, it attaches to the target protein and kills or disables the cell possessing that protein. It has been tested successfully in Phase I and II trials with both Velcade and Revlimid. In the Revlimid trial, 28 patients with lots of prior therapies experienced an overall response rate of 82%. Not bad. I personally believe that many more monoclonal antibodies are in our future - these are the "silver bullets," highly-directed therapy that really could make myeloma a chronic disease. Someday, not yet.

By the way - the suffix "mab" on the generic drug name elotuzumab means "Monoclonal AntiBody." We'll see more MABs.
Denosumab (see - here's another) is also a monoclonal antibody, this time directed at a signal protein which promotes bone removal. Thus denosumab inhibits destruction of bones by myeloma and its treatments. This is cool stuff. Several Phase III studies were reported at ASCO, all of them showing an advantage for denosumab over Zometa. Quoting the conclusion of one study (9042), which included myeloma patients: "In this head-to-head study, patients receiving denosumab had longer time to first skeletal-related event (SRE) or hypercalcemia and time to radiation to bone compared with Zometa. A lower proportion of patients experienced an on-study SRE in the denosumab group compared with Zometa." In another study, patients taking denosumab experienced less bone pain than those taking Zometa.
Vorinostat, brand name Zolinza, is already approved for some cancers. It is a new class of drug called histone deacetylase (HDAC) inhibitors. I don't know what means, actually, except that it works by a different mechanism than Revlimid, Velcade, melphalan, or dexamethasone, making it an excellent candidate for use WITH those drugs. So far it looks promising in early studies with both Velcade and Revlimid. Another HDAC inhibitor, panobinostat, also shows promise.

Nice salmon dinner aboard the Amtrak Empire Builder:

Maintenance or Not - A Patient Perspective

2010-06-07T15:38:00.012-05:00

I posted about this three days ago, but have now heard the talks and thought about it some more.

At least three different papers at the American Society of Clinical Oncology (ASCO) make this clear: When a good response (from a transplant or drug combo) is followed by continuous maintenance with a single agent drug, the time of remission may be extended significantly.

For example, I get an autologous stem cell transplant (SCT), or I go on a multi-drug treatment, and achieve a "very good partial response" (VGPR) or even a "complete response" (CR). That may be followed by a couple of months of additional drug therapy, such as Velcade or Revlimid with dexamethasone (Dex), to "consolidate" my response and hopefully improve it even more. Then I would LOVE to go on a drug holiday for a while, but instead I start taking Revlimid at 10 mg/day, 21 days out of each 28 (example). According to one study, my chance of remaining free of disease progression for three years would be increased from 35% to 68% because I took the maintenance drug.

Speakers at the conference used words like "new treatment paradigm," implying that post-SCT maintenance will soon be the standard of care. Mostly they mean maintenance with low-dose Revlimid as a single agent.

Having thought it over, though, it may not be a simple choice for me. For instance, we know that the myeloma will eventually return in either case, so if I take Revlimid for maintenance, will I still have it available as a possible therapy later when the disease does come back? My very knowledgable friend says maybe so, because (1) the Revlimid dosage will be higher; (2) and it can be combined with other agents such as Dex and even melphalan or Velcade. I am skeptical, but neither of us is a doctor, and this question really did not come up at the talks. I sure do want to get the opinion of my Dr L.

Here are some pros and cons from my point of view.

Pro Maintenance

A longer time before my tumor burden goes up and my doctor and I have to figure out a new plan. Just take the drug and don't think too much about it.
More-frequent blood tests. These will be necessary to check for drug side effects, and in my view this is a pro rather than a con because the tests may reveal other problems, including disease progression, sooner than otherwise.
A greater chance that a brand-new therapy will be available by the time I need it. How cool would that be!
Maybe, but not for certain, a longer life. See below.

Pro Drug Holiday

Regular, ordinary, high-quality life, including:
- Freedom from the suffocating expense of Revlimid or whatever is my maintenance drug. This affects some people much more than others.
- Freedom from the side effects. So does this.
When the myeloma does come back, Revlimid may be fully available as my next therapy. It might be anyway, but I suppose more likely if the myeloma hasn't come back in the face of Revlimid maintenance.

The studies aren't mature enough yet to show an actual survival advantage for maintenance. It is possible that they will never show one because the myeloma will eventually return in either case, at which point other therapies will be tried, and some may succeed.

I am not actually facing this decision right now, and I invite you to comment if you are. Aw heck, comment anyway. :-)

Below: A slide by the lead researcher in the study of the drug that I am currently taking. I'm still receiving primary therapy, not maintenance.

By the way, Blogger was down for a day and just came up, so look farther down for posts that got stacked up in the interim.

Estrogen in Chicken and Beef

2010-06-07T15:31:00.002-05:00

Japanese researchers presented a poster titled "Does dietary estrogen intake from meat relate to the incidence of hormone-dependent cancers? (1553)" Unfortunately, they did not answer their own question. They did measure estrogen levels in checken and beef from three countries, however, finding high levels of estrogen in USA chicken and beef. They summarized the work as follows, quoting directly from their abstract:

"The high estrogen concentrations in Japanese chicken, USA chicken, and USA beef have been attributed to the residue of external estrogen in the feed given to the livestock. The nearly zero level found in Japanese beef and Brazilian chicken is considered to be natural endogenous amount without estrogen supplementation. The estrogen levels in meat are much lower than those of contraceptive pills (0.035 mg/tab). Even so, when considering lifetime exposure to meat containing higher level of estrogen than human fat tissue, estrogen intake from daily meat consumption cannot be disregarded as a factor governing human health. Consequently, dietary estrogen intake from meat might promote estrogen accumulation in the human body and could be related to the incidence of hormone-dependent cancers."

Hmmm. The researchers did not say how they obtained the USA chicken and beef, but I suspect that it was not from organic sources. I do believe in buying only organic meat, or at least meat that is advertised "no added hormones." It may cost more, but cancer is a real bummer.

Some of the 30,000 people at ASCO:

Complementary Treatments and Therapies

2010-06-07T15:22:00.002-05:00

I believe that we can improve on the treatments offered by conventional medicine. In particular, I believe a healthy lifestyle with the best possible food, plenty of aerobic and resistance exercise, good sleep, and freedom from excessive stress. Beyond that are naturopathic therapies and supplements which might help against the cancer, or especially against the side effects of the cancer or the drugs.

Several papers at this year's ASCO meeting dealt with such complementary therapies, which apparently can improve both the cancer outcome and the patient's quality of life. These are scienfific studies by serious researchers at well-known medical centers, with the papers approved by ASCO's review committee. One of those, a study at MD Anderson, determined that as many as 54% of patients use complementary or alternative medicine in some form. (9091). None of studies below are specific for myeloma patients, but they might to be applicable to anyone in cancer treatment:

Neuropathy:
- A study of topical menthol for treatment of peripheral neuropathy concluded that two thirds of patients with long-term neuropathy experienced an improvement in pain and function. (9129). I'm thinking it would smell good too.
- Another study, of electrostimulation with a machine called the MC5-A Calmare therapy device, seemed to show that it "appears to dramatically reduce pain in refractory CIPN (neuropathy) patients with no toxicity." (9029). For a few patients, pain was reduced to zero after ten daily treatments. Normally I would be skeptical of such a study with a specific machine, wondering about the objectivity of the authors. They do not report any conflicts, though, so maybe it's worth a try. But I wouldn't buy the machine - better to find a therapist who already has one.
- There is no rule saying that a person in pain can't try both of these, along with the other naturopathic remedies that are out there.
Fatigue:
- Guarana is a plant native to the Amazon basin that has been used as a stimulant since pre-Columbian times. Patients in a Brazilian cancer center were given 50 mg of guarana extract twice daily, and the researchers reported "Guarana is an effective, cheap and nontoxic alternative for the treatment of fatigue in breast cancer patients receiving systemic chemotherapy." (9007).
- Rochester researchers studied 410 survivors of many different cancers and found that "YOCAS yoga intervention significantly improves sleep quality, fatigue, and quality of life while reducing sleep medication use among survivors." (9013).
- The Bangalore Institute of Oncology studied 66 metastatic breast cancer survivors and concluded "The results offer preliminary support for stress reduction benefits of yoga intervention. However larger randomized controlled trials are needed to validate these findings." This study even found that yoga increased the number of NK (natural killer) cells, suggesting a possible clinical benefit beyond just quality of life. (9099).
Actual Therapy (this is probably not "complementary" but an interesting use of an inexpensive natural substance): Mistletoe extract. A consortium of cancer centers studied 44 patients with a variety of advanced solid tumors (breast, prostate, ...) using a combination of mistletoe extract (EMEX) with a drug called gemcitabine (GEM), concluding "The EMEX/GEM combination demonstrated limited toxicity, no alterations of GEM Cp during infusion of EMEX, clinical benefit in 48% of patients, good tolerability and excellent EMEX compliance. Addition of EMEX may allow for use of higher doses of GEM and increase the (minimum neutrophil count)." (2559). Note that the work was done with solid tumors and may have no application to myeloma.

(2559) NCCAM/NCI phase I study of mistletoe extract and gemcitabine in patients with advanced solid tumors.
(9007) Effect of guarana (Paullinia cupana) on fatigue in breast cancer patients undergoing systemic chemotherapy.
(9013) Effect of YOCAS yoga on sleep, fatigue, and quality of life: A URCC CCOP randomized, controlled clinical trial among 410 cancer survivors.
(9029) Pilot trial of a patient-specific cutaneous electrostimulation device (MC5-A Calmare) for chemotherapy-induced peripheral neuropathy.
(9091) The use of complementary and alternative medicine in patients seen in phase I clinical trials program.
(9099) Role of yoga in modulating fatigue, sleep disturbances, salivary cortisol, and immune measures in breast cancer survivors: A randomized controlled trial.
(9129) Treatment of chemotherapy-induced peripheral neuropathy (CIPN) with topical menthol: A phase I study.

Signs Of The Times

2010-06-06T08:33:00.004-05:00

Just a few signs I saw as I ran along Chicago's lakewalk and riverwalk this morning:

By the way, I highly recommend Cancer Girl's blog, especially right now since she is at ASCO too. She's funny and insightful. We met her and her runner husband yesterday and were delighted.

Innovative Treatment for Relapsed and Newly-Diagnosed Myeloma

2010-06-05T14:41:00.004-05:00

Friday night I attended a satellite session hosted by Celgene, the makers of Revlimid and other drugs. Dr David H Vesole, of Hackensack University Medical Center, focused on the newest treatments for myeloma. He said that the two most important tools are Revlimid and Velcade (and he might as well have included dexamethasone (DEX) because it is almost always combined with Revlimid and Velcade).

The new kid on the block is all three, termed VRD. In one study it produced a response in 100% of patients, and a very good partial response (VGPR) or better in 75%. That's pretty amazing. Unfortunately, though, 15% of patients experienced severe neuropathy. Other studies suggest that low-dose DEX may work as well, and with once-weekly Velcade instead of twice-weekly, neuropathy may be reduced to a much smaller number of patients. Continued maintenance with Revlimid improves the result.

Potential newer kids on the block:

Carfilzomib: This is a "proteazome inhibitor" (interferes with the cell's ability to dispose of waste) like Velcade. Carfilzomib seemed to be on a fast track, but is back in phase I trials to zero in on the maximum tolerable dosage. At lower dosages it appears as effective as Velcade but with only 1% of patients experiencing severe neuropathy. At the higher dosages it may be even more effective, but neuropathy may be increased. I spoke to one person in the sales booth who thought it was still a year and a half away from FDA approval.
Pomalidomide: I have been on a Phase II study of pomalidomide for 30 cycles. It's an immunomodulatory drug (IMiD) with the capacity to suppress parts of the immune system, particularly myeloma cells, which are wayward plasma cells. Dr Lacy from Mayo Clinic will be presenting a talk which shows a 49% objective response rate even among patients for whom Revlimid and Velcade (both) are no longer effective. I don't know when this drug will be approved - it seems to be on a slow track, and I wonder (lacking specific knowledge) if Celgene has sufficient incentive to hurry this better drug to market as long as Revlimid is making them so much money.

Unanswered questions according to Dr Vesole:

Should patients be pushed toward a complete response (CR) when a good response is already obtained? Studies do suggest that they do better.
Is a four-drug combination better than three? The jury is still out, and one study says that they are only equal.
What do we do when a patient on a three-drug combination relapses?

Actual sign on a Montana interstate:

Older Patients Are (almost) Like Anyone Else

2010-06-05T13:11:00.004-05:00

The standard of care for newly-diagnosed older patients (60 and over - is 60 elderly?) has been treatment with melphalan and dexamethasone (DEX), especially in Europe. The "novel" drugs, thalidomide, Revlimid, and Velcade have not been used for older patients as much as they might, because there was no data showing that they were safe and effective for older patients. (Are they safe and effective for anyone?) By the way I'm 69, so this is a subject dear to my rickety old heart.

Today I saw a poster discussion titled "Elderly patients with lymphoma and myeloma can effectively participate in clinical trials of novel agents." Duh. Also, a recent Italian study shows that Revlimid added to melphalan and DEX improves the response rate and probably the overall survival. Further, when Revlimid was added as maintenance, the progression-free survival was significantly enhanced over melphalan and DEX alone. Another trial showed a similar advantage when Velcade was added to melphalan and DEX instead of Revlimid. Just like regular folks.

Some precautions may be necessary. Researchers have developed several different procedures for assessing a patient's physical and functional capacity. They find that function (ability to live independently) is an independent predictor of survival. Other serious health problems (heart, diabetes, etc.) also predict poor survival.

Some nuggets from a session titled: "Geriatric Oncology: The older Cancer patient":

"Cure" means to live long enough to die of something else.
Many older patients have five or more OTHER serious illnesses.
Older patients do not necessarily experience higher toxicity from novel drugs.
One speaker said we need more studies, and then "Please hurry - I'm aging fast!"
"Older" means 60 to 79. No one even thinks about people over 80. You're on your own.
Yet the median age for newly-diagnosed patients is about 65 (I think, my comment).
For patients over 75, use reduced dosages, e.g. thalidomide 50 mg instead of 100 or 200.
For relapsed/refractory patients, try all of the approved drugs, and when all else fails, put them on a trial! (Just like anyone?).

So, if the definition of cure is to live long enough to die of something else, then we most-mature adults have a much greater chance of being cured. Celebrate that!

Lunch aboard Amtrak: Spinach salad with cold salmon. Tasty, healthful, and served graciously. About $9.00.

ASCO Headline: Maintenance Works

2010-06-04T22:41:00.005-05:00

And so does consolidation. This may be the most important new information for myeloma patients this weekend.

ASCO is the American Society of Clinical Oncology, currently holding its annual meeting at McCormick Place in Chicago, 30,000 strong. I am here as a guest of the International Myeloma Foundation (IMF), to observe the information presented by the many speakers, and to blog about it from the perspective of an ordinary patient. Yay for the IMF! And thank you. I love this stuff. But be advised: I am not a doctor, just an engineer. You should get your medical advice and even your facts from your doctor.

The ASH (American Society of Hematology) conference a half-year ago suggested that maintenance works, and ASCO confirms it. What is it?

Consolidation is a drug therapy given AFTER a stem cell transplant (SCT), to further reduce the tumor burden.
Maintenance is administration of a drug (Revlimid, Velcade, ...) for a long period AFTER a good response has been achieved from an SCT or other therapy, to keep the ugly buggers down.

I attended a session titled "Expert Perspectives in Individualized Treatment of Hematologic Malignancies" (yikes - what was I doing there?). Dr David Vesole of Hackensack University spoke on "Updates on Innovative Treatment for Newly Diagnosed and Relapsed/Refractive Myeloma. More about that in another post.

Consolidation:

Dr Vesole cited two different studies, one using Revlimid and another using Velcade, both showing a significant advantage for consolidation. In the revlimid study, two months of Revlimid increased the percentage of patients showing a very good partial response (VGPR) or better from 58% to 70%. In the other study, Velcade was started at three months after the SCT, and continued for six months. After those nine months, 49% of the patients taking Velcade were still in near-CR or better, contrasted with 33% of the control group.

Maintenance:

The brand-newest papers on post-SCT maintenance have not been presented yet, but the abstracts are available. As Dr Durie of the IMF has pointed out in a press release dated yesterday, the new studies may influence doctors toward continuing therapy (maintenance) as a means of preventing or delaying relapse. The study results are quite clear: maintenance works. One study was "unblinded," in fact, because those on the Revlimid maintenance arm were doing so much better than those on placebo. I will attend these sessions, and will report on them if I learn anything beyond what is in the abstracts.

What does this mean for us?

Unfortunately, it's both sweet and sour. In many cases, we should probably NOT enjoy a drug holiday after achieving stable disease from an SCT or other means. Instead, going on maintenance, we will incur: (1) side effects of Revlimid or Velcade; (2) the cost of those drugs, and (3) the nuisance of taking the pills or getting the infusions. But we may likely enjoy a longer period before relapse and quite possibly a longer life. Life is good - I'm in favor of it.

What about those who are already on a drug holiday? Should I start now? Is it too late to start? Ask your doctor - I don't think the studies answer that question.

Myeloma Is Not a Chronic Disease

2010-06-02T10:48:00.005-05:00

This post is a respectful tribute to Elizabeth Redman, who died yesterday, June 1, 2010, way too soon.

In the last year or two we have heard hopeful words about turning myeloma into a chronic disease, especially for low-risk patients, and with the "novel" treatments like Revlimid, Velcade, and the other drugs currently in trials.

BUT WE ARE NOT THERE YET, not even close. With the best of care, many of us are still dying. This is my own little list of people that I have known personally, face-to-face, mostly from support groups in Minnesota:

Elizabeth Redman, 2010
Elijah Alexander, 2010
Donna Costello, 2010
Gene Early, 2009
Helen Berg, 2009
Ken Meister, 2008
Mike Ohara, 2007
Joyce Momont, 2006
Donna Penrose, 2005

No doubt each of us has such a list of friends who have gone.

The point? We can't let up. New drugs like pomalidomide, carfilzomib, and the monoclonal antibodies can't come fast enough.

Stay tuned for news from ASCO, the annual meeting of the American Society of Clinical Oncology.

Disappointing Test Results

2010-05-29T20:40:00.010-05:00

Thursday, May 27, was the end of Cycle 29 of my pomalidomide (CC-4047) trial at Mayo Clinic. Unfortunately, my IgG and M-spike were both up about 10%, which is not good news. Every myeloma regimen fails eventually, and this could signal the end of my rather easy ride on pomalidomide. Furthermore, the neutrophil count is 920 (tiny buggers per microliter) and if it stays below 1000 I can't continue on the pomalidomide study until it goes back up. Otherwise, in theory at least, I'm a little too vulnerable to bacterial and fungal infections.

Neutrophils:

My Mayo blood draws are usually ay 6:30 am, and the neutrophil count was below 1000 at the end of both of the previous two cycles. In an afternoon blood draw a few days later, in both cases, the count had jumped up well above 1000 and I was able to continue on the study. This time, though, I was heading out of town to run a marathon, so we did another blood draw at Mayo before I left, still in the morning but not so early, hoping that it would show 1000 or above. But the vaunted Mayo Clinic screwed up! They did the CBC, but failed to do the differential which shows the actual absolute neutrophil count. By the time we discovered this, the test could not be repeated and we were almost halfway from Minnesota to Idaho. So the next day we stopped in Billings, MT, and had blood drawn there. I do not yet know the results of that CBC, so I can't be sure of continuing on the study. I'll assume the best unless I hear from Mayo.

Genistein:

I have been taking genistein, a soy isoflavone, throughout the pomalidomide trial, about 50 mg/day. It is supposed to have some anti-cancer effects by "supporting" the immune system. However, since myeloma is a cancer OF the immune system, there is a question whether it should be "supported," and in addition there are other questions about any estrogen-simulating supplement. So I decided to stop it for a cycle, to see what might happen to IgG and M-spike. I guess I got my answer. Back on genistein!

Hand Infection:

Three months ago I whacked the back of my left hand against something and got an infection, either bacterial or fungal, and the hand eventually got quite warm, swollen, and painful. It has healed very slowly, but it's almost better now.

Some current test results:

Test	Mar 04	Apr 01	Apr 29	May 27	Remarks
M-spike g/dL	1.0	1.0	1.0	1.1	Best tumor measure
IgG mg/dL	1130	1070	1010	1110	Variation is normal
L FLC mg/dL	2.10	1.82	2.41	2.58	L Free light chains
Calcium mg/dL	10.1	9.8	9.7	9.9	Below 10.2 is best
Creat mg/dL	1.0	1.2	1.3	1.3	Kidney, normal
HGB g/dL	14.2	14.7	14.6	14.1	Hemoglobin, normal
RBC M/uL	4.17	4.39	4.21	4.36	Red cells, normal
WBC cells/uL	3400	3300	3300	3600	White cells, low
ANC cells/uL	1290	940	730	920	Neutrophils, LOW!

ASCO Conference:

I have been invited to attend the annual meeting of the American Society of Clinical Oncologists next week, and I will be blogging in "real time" about the presentations that I see there. Here are a few of the topics that seem interesting to me:

Studies of Carfilzomib, a Velcade-like drug which has far fewer side effects;
Post-transplant maintenance therapy with Revlimid or another drug, versus no maintenance. We're going to hear that maintenance prolongs lives!;
Denosumab versus Zometa for bone problems;
More about pomalidomide (when will they get this FDA approved?);
Doxil, Velcade, and dexamethasone as front-line therapy; and
LOTS more. I can't hope to cover it all.

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

I haven't had time to update the charts, test results table, and other documents (see links above) that go with this post, but wanted to get this posted now while I have a few minutes. I'll get around to the rest later, but there is really not a lot of change except the increase in IgG and M-spike.

P.S. June 2, 2010: The blood test (CBC) at Billings Clinic showed 1890 little guys per microliter (how can it go up that much from 920 in one day?) so I'm still on the study!

Breakfast:

Mom Is 100!

2010-05-18T21:23:00.002-05:00

MY MOM IS 100 TODAY!

We had a heckuva party over the weekend, people coming to Minnesota from as far away as California. She's lovely, and I'm so proud of her. Go MOM!

Ho Hum, Cancer Is Still Stable

2010-05-05T13:47:00.005-05:00

Stable but not ho-hum, actually. Thursday, April 29, was the end of Cycle 28 of my pomalidomide (CC-4047) trial at Mayo Clinic. M-spike is still 1.0 g/dL, IgG is actually down 5%, and light chains are normal. That's great! The fly in the ointment is the neutrophil count, which is down to 730 cells per uL, where the reference range is 1700 to 7000. In theory, at least, this leaves me a little too vulnerable to bacterial and fungal infections.

Neutrophils:

The trial protocol requires that the pomalidomide dosage be reduced if neutrophils fall below 1000. Last month, neutrophils were 940 per uL, but another CBC performed four days later at a local clinic showed a count of 1500. When that result was faxed to Mayo, the study was continued unchanged. This time the neutrophil count was even lower, but Dr L again suggested a re-test in four days, and by golly the count on Monday afternoon was 1700. Huh. No change in pomalidomide dosage for at least another month.

How can the neutrophil count change that much? More than double! I'm surprised that it can, actually, but:

Exercise can affect the count. Both Mayo doctors have mentioned this, and Dr LL, my primary care physician, explained that exercise pushes the neutrophils out of muscle tissue into the blood. Learning of this, I have done a few flights of stairs and a set of pushups before each of the Monday blood draws at the local clinic. On the other hand, I also did those exercises before last Thursday's blood draw at Mayo, and that time the count was the lowest ever.
Dr L explained that neutrophils do follow the body's daily circadian rhythm, and they are higher in the afternoon than in the morning. In both cases, the Thursday blood draw at Mayo was done at about 6:40 am soon after a 90-minute drive, and the Monday blood draw at the local clinic was done in the early afternoon. Perhaps this accounts for much of the gain in count.
Could food make a difference? Something in the stomach? I don't know a reason why food should affect the count, but results have been low on an empty stomach and high after two meals.
Do you suppose there is a difference in the way that the two laboratories count neutrophils? Of course there is a difference, there is always a difference, but I doubt it is enough to double the count.

Hand Infection:

Two months ago I whacked the back of my left hand against something and got an infection, either bacterial or fungal, and the hand eventually got quite warm, swollen, and painful.
Over time, three different doctors have prescribed four different antibiotics. Whether or not the antibiotics helped, the infection eventually started to turn around after getting steadily worse for more than five weeks. It's still getting better, very slowly.
I've babied that hand, keeping it extra warm and even applying a little heat for much of the time.
The last antibiotic ran out 10 days ago, and the infection is still slowly getting better even without it.
Here's what I think:
- It's a fungal infection, because the speed of recovery didn't seem to change when the antibiotic ran out;
- The speed of recovery is reduced by the shortage of neutrophils, which are important in battling either a fungal or a bacterial infection;
- If I do nothing more, it will probably, gradually, heal itself. I hope; and
- I sure am glad that I have nothing more serious to whine about!

Other Discussions with Dr L:

I asked which test, M-spike (serum protein electrophoresis) or IgG (immunoglobulins), was more accurate. She took the question to mean "which is a better indicator of tumor burden" I think, and responded that IgG is better when numbers are quite high, and M-spike when numbers are quite low. For me, she said, with IgG and M-spike both near 1000 mg/dL (1.0 g/dL), they may be equally good indicators.
Dr L is OK with my decision to NOT start taking Fosamax yet.
She also doesn't know what's going on with the hand, and seems pleased that Dr LL, my PCP, is taking care of it.

Some current test results:

Test	Feb 04	Mar 04	Apr 01	Apr 29	Remarks
M-spike g/dL	1.0	1.0	1.0	1.0	Best tumor measure
IgG mg/dL	1180	1130	1070	1010	Variation is normal
L FLC mg/dL	2.78	2.10	1.82	2.41	L Free light chains
Calcium mg/dL	9.8	10.1	9.8	9.7	Below 10.2 is best
Creat mg/dL	1.1	1.0	1.2	1.3	Kidney, normal
HGB g/dL	14.2	14.7	14.6	14.1	Hemoglobin, normal
RBC M/uL	4.00	4.17	4.39	4.21	Red cells, normal
WBC K/uL	3.8	3.4	3.3	3.3	White cells, low
ANC K/uL	1.22	1.29	0.94	0.73	Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Sore left front paw:

Minnesotadon Is Now on Twitter

2010-04-20T15:00:00.007-05:00

Big deal. I'm not yet sure why, actually. I used Twitter for the first time on Monday, April 19, to keep track of the Boston Marathon. I liked that. Then I found out how to have the title and first few words of each new blog post sent to Twitter, as if I had "tweeted" it.

We'll see what comes of this. Twitter seems to be a good way to keep track of people if both are on-line and on Twitter, or if one is on Twitter and the other one posts to a blog. Otherwise, email might be better.

Pomalidomide Side Effect?

2010-04-12T20:26:00.006-05:00

Pomalidomide keeps my cancer stable, but has significant side effects:

Bradycardia (reduced heart rate). This doesn't bother me, but it does some people.
Blood clots. These can appear as deep vein thromboses (DVTs) or pulmonary embolisms. They are life-threatening, but I haven't had one. I do take an aspirin a day.
Peripheral neuropathy. The bottoms of my feet are numb in some places, and I have one thumb that tingles. From what I hear, my neuropathy may be fairly typical.
Neutropenia, which is a low neutrophil count. Neutrophils are a major front-line fighter in the immune system, and without them we cannot easily fight off infections.

And I have an infection. At least four weeks ago, I apparently whacked the back of my hand against something, possibly outdoors working on a tree that we removed and cut for firewood. A bruise appeared, and a red circle around a tiny puncture. In the ensuing weeks the infection spread to three knuckles and the tissue between them, now overtaking most of the back of the hand and causing enough swelling to make it quite impossible to close the hand.

We've tried three different kinds of antibiotics in those weeks, with varying results. None of them reversed the infection, but one or two may have halted or slowed its advance. The one that may have worked the best, Biaxin, was stopped because liver enzymes appeared to go up, one of the risks of Biaxin. Now my local primary care physician, Dr LL, has me on a fourth antibiotic, doxycycline. We'll see how that goes.

Neutrophils may be important here - we really don't know HOW important, because we don't yet know the type of bacteria or fungus causing the infection. People with normal immune systems also get infections, but I sure haven't had one like this before. If necessary, we can stop the pomalidomide for a week and still remain on the study. But the myeloma is stable now, and I really don't want to mess that up!

Otherwise, though, life is wonderful. We three ran another marathon last Saturday.

The News Is All Good

2010-04-05T21:23:00.003-05:00

Stable M-spike and other cancer markers - see the latest post about that.

Neutrophils:

Last Thursday, April Fools Day, the Mayo Clinic lab reported my neutrophils at 940/uL, well below 1700, the bottom of the reference range, and even below the cutoff of 1000, where the pomalidomide trial protocal calls for a reduction in my dosage of pomalidomide. So we re-tested today, at Stillwater Medical Group, and got a count of 1500/uL. That's good - Mayo already called and told me I could stay on the protocol.

But I'm quite surprised that the neutrophil count can jump up that much in just four days. I heard that the count can be improved by exercising before the blood draw, so I did some pushups, a few flights of stairs, and some runner's stretches before heading off to the clinic. But even if that helped the count, is it a true indicator of "neutrophil power" or did it just improve the count temporarily? Your guess is better than mine.

I run about four days a week, but lately haven't been doing any deliberate exercise the other three. If exercise really does help with the neutrophil count, then perhaps I should start every day with a little exercise. Yard work is good!

Liver Enzymes:

AST: Apr 1 Mayo Clinic 85, range 8-48; Apr 5 Stillwater 27, range 0-40. Down to normal in just 4 days.
ALT: Apr 1 Mayo Clinic 112, range 7-55; Apr 5 Stillwater 60, range 8-58. Not quite down yet, but close.

I've had liver enzymes go above the reference range before, and then drop right back down to normal the next month, so I wasn't too worried, though this was the highest they've ever been.

I have a theory about why they were high. AST and ALT are enzymes that are produced by the liver when it is injured, but they can also be produced by injury to muscle and maybe even other tissue. When the blood was drawn at Mayo, I had a bruise and an infection in one hand, the same arm from which the blood was drawn, in fact from a vein that takes blood back from the tissue around the injury. Could the enzymes actually be coming from the injured hand? When I suggested this to local Dr L, my primary care physician (PCP), he didn't even laugh out loud. He didn't agree, but he didn't reject the idea either.

Anyway, the injured hand is getting better, if very slowly, and this time I had the blood drawn from the other arm.

Bisphosphonates:

Mayo suggested, though not too strongly, that I might want to start taking alendronate (generic Fosamax) to reduce the risk of breaking a bone, which would likely put an end to my running. But there are risks and possible side effects, some serious. Local Dr L and I discussed this at some length. My T-scores range from -1.1 to -1.7, mild to moderate osteopenia (not osteoporosis). I have no family members with broken bones, or any other risk factors except two years of steroids (dexamethasone). The normal guidelines would not call for treatment at this time. Myeloma is not normal, however, it breaks the rules and sneaks up on us. Dr L thinks we should deal with this by checking the density at least once per year.

For now, no bisphosphonates. I'm OK with that.

Oatmeal underneath, pineapple, papaya, blueberries, kiwi, mango, really big strawberries, kefir, walnuts. Mostly organic.

April Fools Test Results

2010-04-03T14:06:00.004-05:00

Thursday, April 1, was the end of Cycle 27 of my trial of pomalidomide (previously CC-4047). The cancer has been declining or stable for more than two years now, and it was again Thursday. M-spike is still 1.0 g/dL, and IgG is down slightly, indicating that the M-spike value is probably correct. So that's good - wonderful even. Worth a celebration!

But some of the other test results are strange.

Liver Enzymes:

The reference range for AST is 8-48 U/L, mine was 85. The range for ALT is 7-55 U/L, mine was 112. They have been out-of-range high before, but not this high. Two possible explanations: (1) I had taken Biaxin, an antibiotic, to treat an infection in my hand, for the three days prior to the blood draw. Liver injury is a possible side effect of Biaxin; and (2) Muscle injury can also raise those enzymes, and I had run pretty hard on Tuesday, which always damages muscle a little bit. No doubt there are more possible explanations that I don't know about.

Dr KDS switched me to Keflex (cephalexin) to deal with the chance that Biaxin is the problem. And my primary care physician (PCP), the local Dr L, will recheck the liver enzymes on Monday.

Neutrophils:

Dexamethasone (DEX) actually helps support the neutrophil count. Since I've discontinued DEX, neutrophils have trended downward. Last month they were 1290 per uL, this month 940. That's a surprisingly big drop. The myeloma doctors don't want it to go below 1000, so if it stays down there we will have to reduce the dosage of pomalidomide, probably by stopping the treatment altogether for seven days out of each 28. For obvious reasons, we don't want to do that.

We know that other stuff is going on, though. I have a hand infection, I'm taking antibiotics, liver enzymes are high, so PCP Dr L will also recheck neutrophils on Monday. Then we'll worry about the pomalidomide dosage.

Free Light Chains:

Lambda light chains decreased from 2.10 to 1.82 mg/dL, which by itself sounds good. However, Kappa light chains plummeted from 1.06 to 0.27, and the ratio therefore went down from 0.50 to 0.15. Since Lambda and Kappa measurements tend to move together, the sharp decrease in the Kappa value calls the Lambda value into question. I can't make any sense of this. I'm hoping that the Kappa result is just wrong. Wacko. We'll see next month.

Red Blood Cells:

My red blood cell count has been below the bottom of the reference range every month but one since the start of the pomalidomide trial. This time it's just above the bottom, into the normal range, and hemoglobin is up too. Hurray! I have noticed that I can run a little faster too- maybe that's why.

Other Discussion with Dr KDS:

Bone Density: Dr KDS had looked at last month's DEXA scan and told Dr D, a Mayo bone-health specialist, that my myeloma is under control but that I am a runner and a fracture would be devastating (like it wouldn't be for anyone!). My densities are:
- Femur necks: T-score is -1.1, indicating mild osteopenia. Density for each is about 0.93 g/cm(sq). This is down about 3% from 2003, though Dr D didn't know about previous scans.
- Lumbar spine: T-score is -1.2, indicating mild osteopenia. Density average for L1-L4 is 1.08 g/cm(sq). This is down about 4% since 2003, also unknown to Dr D.
Dr D suggested Fosamax (alendronate) 70 mg per week, for not more than five years.
I have a lot of faith in my PCP Dr L, and told Dr KDS that I would discuss this with him and get the prescription from him if he recommends it. Another topic for Monday.
I took chlorophyllin this month, a new supplement, to help boost neutrophils. Since it didn't seem to do any good, and some other results are screwy, we agreed that the chlorophyllin would be stopped right away. Done.
I am still taking naproxen sodium (Aleve) 220 mg once daily, to deal with headache and because there is a small chance that it will have some anti-myeloma effect, as Celebrex seems to have. Dr KDS had no problem with this.

Bisphosphonates for Myeloma:

Mayo Clinic and other medical institutions are backing away somewhat from the use of IV bisphosphonates, prescribing Aredia instead of Zometa and limiting the treatment to two years or so. And here you see a recommendation for an oral bisphosphonate (Dr D above) where an IV drug would have been prescribed just a year or two ago. Bisphosphonates remain in the bones for many years, and there is some evidence that overuse can lead to brittleness because the bones cannot renew themselves in the normal way.

Bone doctors estimate the probability of a broken bone with a formula called FRAX. When I put my numbers into the FRAX Calculator, I get a 6% risk of any fracture over the next ten years, and a 1% risk of a hip fracture. That's pretty low, not much above the risk for the general population. But FRAX is optimistic for a myelomiac, because myeloma tends to cause bones to weaken more rapidly than normal, especially in areas where myeloma lesions form. It will be an interesting discussion with my PCP Dr L.

Mayo Clinic Results Are On Line:

If you have ever been a Mayo Clinic patient, you can go HERE to log on and view results. I don't know how far back the results go, but mine are there from my initial treatment at Mayo in March, 2008. Not every result is there - a recent electrocardiogram is missing - but all of the normal (even abnormal) labs are there. You will have to get set up to log in and view your results, though, which involves mailing in a notarized form. Or you can sign up in person at your next appointment.

Some current test results:

Test	Jan 07	Feb 04	Mar 04	Apr 01	Remarks
M-spike g/dL	1.0	1.0	1.0	1.0	Best tumor measure
IgG mg/dL	1110	1180	1130	1070	Variation is normal
L FLC mg/dL	2.18	2.78	2.10	1.82	L Free light chains
Calcium mg/dL	9.6	9.8	10.1	9.8	Below 10.2 is best
Creat mg/dL	1.1	1.1	1.0	1.2	Kidney, normal
HGB g/dL	14.4	14.2	14.7	14.6	Hemoglobin, normal
RBC M/uL	4.05	4.00	4.17	4.39	Red cells, normal
WBC K/uL	3.5	3.8	3.4	3.3	White cells, low
ANC K/uL	1.38	1.22	1.29	0.94	Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Oatmeal underneath, of course. Huge organic strawberries, blueberies, kiwi, walnuts, and organic kefir.

March 4, 2010, end of Cycle 26:

2010-03-06T19:05:00.002-06:00

Two years ago this week, I started on a trial of the new drug pomalidomide (then called CC-4047) with dexamethasone (DEX). Within a few months my M-spike was down from 2.7 to 1.0 g/dL, where it has remained since, going as low as 0.8 and as high as 1.1. Pomalidomide is good stuff. It seems to produce a response in most myelomiacs, including many for whom other treatments have failed to work. I do hope that Celgene and the FDA can get together quickly and get it approved.

I am currently taking only two prescribed drugs: (1) Pomalidomide, 2 mg per day; and (2) Aspirin, 325 mg per day. I would also take acyclovir to ward off shingles, but acyclovir is hard to get right now.

M-spike was unchanged at 1.0 g/dL at the end of this 28-day cycle. IgG was down 4% at 1130 mg/dL, which is probably good - IgI varies. Lambda free light chains (FLCs) are down a surprising 24%, yet Kappa FLCs are up, suggesting that the Lambda decrease is genuine. I'm not sure what the decrease in Lambda means, but it can't be bad. Total white cell count was 3.4 K/uL, down slightly to the lowest value I've ever had, just below the bottom of the reference range. But the white count bounces around, and neutrophils even went up a little, so we'll just watch it.

At worst, the tumor burden appears stable, despite discontinuing DEX three cycles ago, and at best it may have decreased just a little. Furthermore, neutrophils have stopped their downward slide. I'm a happy camper.

Dr L also ordered a bone-density (DEXA) scan this time. The result for the lumbar spine, vertabrae L1-L4, is a decrease in absolute density of 2% compared with another scan 2 1/2 years ago at a different facility. I'd rather it was an increase, but there could be that much variation between machines, and I'll take it. Results for the femur are less clear to me, because the previous facility reported only one value for femur, and Mayo reported two, called "femur neck" and "total hip." If the "femur neck" value is comparable to the femur value from the previous report, then density actually went up by about 5%. This is possible, because Vitamins D3 and K2 are known to strengthen bones, and I take them very regularly. In any case I still have osteopenia, but not osteoporosis, and I hope to discuss this more with Dr L.

Differences this cycle:

Dr L ordered 3 days of Biaxin at the beginning of the cycle. More about that below.
My 30-year chronic headache has started to return, now that I'm off DEX, and I took a capsule of naproxen sodium whenever the headache reminded me, once every day or two. Two years ago, not long after the trial started, the decline in M-spike gradually leveled off in the same months that I gradually stopped using naproxen. Was there a cause and effect? Since Celebrex (celecoxib), a similar NSAID, is thought to have a modest anti-myeloma benefit, it is possible that naproxen might also. In my amateurish and hopeful opinion, it is even possible that pomalidomide and naproxen might be synergistic. If so, we'll take advantage of it.
I started taking a new supplement, sodium copper chlorophyllin, one week before the blood draw. A recent article in Life Extension Magazine suggests that chlorophyllin may support neutrophil counts during chemotherapy. My neutrophil count did stop falling this time, actually going up slightly from 1.22 to 1.29 K/uL. Neutrophils bounce around a lot however, in response to bacterial threats in the body, so this is not very significant.
We ran another marathon eleven days ago. I've never noticed that a marathon affects the myeloma results, though.

Discussions with Dr L:

Biaxin (clarithromycin) is known to potentiate the combination of DEX and an IMID drug, such as Revlimid or thalidomide, and probably pomalidomide. Biaxin is no help by itself, and no one knows whether it would work with ONLY the IMID drug, without the DEX. Dr L prescribed a three-day course of Biaxin a month ago, to prevent a minor skin injury from becoming a major infection. Could those three days of Biaxin have helped the pomalidomide work on my tumor burden, even though I'm not taking DEX, and even though only three days?
She looked at the skin injury, now just a red spot, and thought it was healing rather slowly. In contrast, I thought it was healing fairly quickly compared with similar, prior experiences on DEX.
I asked if neutrophils are important to warding off shingles, since my neutrophils are slightly below the bottom of the reference range. She said no, that neutrophils attack bacterial infections, and lymphocytes are more important for shingles and other viruses. Happily, my lymphocytes are smack in the middle of the reference range.
Somehow the subject of Velcade came up, and she expressed the opinion that Velcade might not be in my short-term future, even if pomalidomide begins to fail, because the twice-weekly infusions and the attendant neuropathy would mess up my very-active lifestyle. I didn't mention that I would prefer once-weekly infusions, and by the way whose lifestyle is NOT messed up by Velcade infusions? I was happy with her patient-centered concern though. Anyway the discussion of the NEXT treatment after pomalidomide seems farther off now that it did a cycle ago.
I don't recall how this came up, but at one point Dr L said that in a given instance there may be a choice between any of several treatments, all of them good, none of them wrong. Anyway that's what I thought I heard - there may not be a BEST choice.
I had a bone-density (DEXA) scan this time. When the results of the scan were unknown, I mentioned to Dr L that if a bisphosphonate is indicated, I have a very strong preference for oral rather than IV. To my surprise she agreed wholeheartedly, saying that new information is coming out indicating that myeloma doctors may be over-treating with the IV meds (Aredia and Zometa). The half-life of those bisphosphonates in the bones is 10 years (or did she say 20 years). Too much bisphosphonate may stop the bones from losing density, but the bones may not regenerate themselves. Instead they become brittle and subject to fracture, especially the femur near the hip. Mayo will be coming out with a modification of their mSMART protocols, which may include oral bisphosphonates. At least three different oral bisphosphonates are available, and she wasn't yet sure which she might prefer for me. I think I'd also consult with my primary care physician, my other Dr L, who has a lot of experience with oral bisphosphonates.

What's Next:

I've been taking curcumin 8 g/day, sixteen capsules, and I'm tired of doing that. I might even say I hate it. Curcumin could be helping, but I have little evidence, so I'll stop it and see what happens. Quercetin too. I'll go back to one 500 mg capsule of curcumin per day, and no quercetin, reducing my daily consumption by 23 capsules. Yay!

The chlorophyllin supplement is new, and I will continue that, to support the neutrophils and because it is a good anti-mutagenic agent. I will also take one naproxen capsule per day. I use the liquid type, in the hope that it will be less likely to burn a hole in my innards as some NSAIDs can do.

Some current test results:

Test	Dec 10	Jan 07	Feb 04	Mar 04	Remarks
M-spike g/dL	0.9	1.0	1.0	1.0	Best tumor measure
IgG mg/dL	1090	1110	1180	1130	Variation is normal
L FLC mg/dL	2.36	2.18	2.78	2.10	L Free light chains
Calcium mg/dL	10.0	9.6	9.8	10.1	Below 10.2 is best
Creat mg/dL	1.1	1.1	1.1	1.0	Kidney, normal
HGB g/dL	14.3	14.4	14.2	14.7	Hemoglobin, normal
RBC M/uL	4.00	4.05	4.00	4.17	Red cell count, low
WBC K/uL	3.7	3.5	3.8	3.4	White cells, low
ANC K/uL	1.55	1.38	1.22	1.29	Neutrophils, low

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplements		With links to where I buy them.

Leftover organic chicken or turkey, baked organic sweet potato slices, organic broccoli, jalapena tomato sauce.

Second Level of Advocacy

2010-02-11T21:05:00.002-06:00

The International Myeloma Foundation has undertaken a major advocacy initiative, to convince the U.S. Congress to address several issues crucial to cancer patients, including:

Affordable access for as many people as possible;
Elimination of the barrier of "pre-existing conditions; and
Continued investment in research.

Here is the full Statement of Principles.

This is the right time, while health care is up in the air. The initiative now has two levels:

1. Writing:

We write letters to our congresspersons and senators. It is made easy on this IMF web page: Enter your zip in Write to Congress, then on the next page, click "Write to ALL of your representatives with one click." Please do this. It is SO easy to do.

2. Meeting with our elected representatives:

This is the IMF's newest and potentially most-effective initiative. Senators and congresspersons all have offices in their home districts, and we can make appointments to visit them or their staff person. The IMF has scheduled two one-hour web-based seminars to teach us how to do this in a manner most likely to achieve a result:

Tuesday, February 23, 1:00 pm EST (12:00 CST); and
Thursday, February 25, 1:00 pm EST (12:00 CST)

Then we will visit our representatives during myeloma awareness month, "March Against Myeloma."

To take part in the web seminars, email Meghan Pullarn at IMF or call 410-252-3457. She'll be glad to hear from you.

Cycle 25 Results

2010-02-05T10:57:00.001-06:00

February 4, 2010, end of Cycle 25:

This was another good visit. Not a GREAT visit, but a good one. A GREAT one would include a significant drop in M-Spike, and today's number was 1.0 g/dL, the same as the previous cycle. In fact M-Spike is only reported to the nearest tenth, because the test is not highly accurate, and the actual monoclonal proteins may have gone up a fraction of a tenth, because IgG increased 6% and Lambda light chains increased a little. But I'm still off DEX, and Dr. L pronounced the myeloma STABLE! When that changes there are lots of things to try, including going back to the DEX and possibly adding Biaxin. So far my only treatments have been thalidomide (years ago), pomalidomide, and DEX.

I'm still on a Phase II trial of pomalidomide, brand name Actimid, previously called CC-4047. It's a new IMID drug in the family which includes Revlimid and Thalomid (thalidomide). I get one 2-mg capsule of pomalidomide per day, every day, but no more DEX. I also take an aspirin every day to reduce the likelihood of a deep-vein thrombosis (DVT), which is one of the most-dangerous potential side effects of the pomalidomide. So far so good, no DVT. I go to Mayo Clinic every 28 days for blood tests and an exam. Pomalidomide is working for me, and the study so far shows that it has a lot of potential, even for patients whose myeloma is not controlled on other drugs. It's a drug we can live with.

Other pomalidomide side effects that I do experience:

Bradycardia: This is a reduction in heart rate below the normal rate. In my case the normal resting heart rate is already low, usually in the high 40's, because I'm a runner, and pomalidomide takes that down to the low 40's. It hasn't been a problem, though, unless it's slowing my running pace, and I can't really tell about that because any bradycardia effect would be masked by the effects of the DEX.
Peripheral Neuropathy: Pomalidomide can cause numbness or even pain in the hands and feet, sometimes other parts of the body. My neuropathy is very mild, just numbness in parts of the soles of both feet, and numbness with tingling in one previously-injured thumb. It's not a problem - days go by with no thought of it entering my head.
Depressed Neutrophil Count (neutropenia): The count dropped to 1.22 k/uL, where 1.70 is the bottom of the reference range. I'm a little concerned, but not too concerned, because for some reason the lab had to do a manual count, which is "not exactly comparable" to the usual automatic count. It's down 12% from last month. If it goes too low the risk is neutropenic fever, which happens when the body's defenses are down. Lethal sepsis can follow if treatment is not immediate. Hopefully before that, Dr. L will switch me from daily pomalidomide to 21 days on, 7 days off, but she did remark that the neutrophil count was still above 1.0 k/uL. According to one source, a value above 1.0 for a white male is only mild neutropenia, and a value below 0.5 is severe.

Other discussions with Dr. L:

Some patients (on the study?) are now taking Biaxin, drug name clarithromycin, an antibiotic, because it has been shown to potentiate the combination of an IMID drug with DEX. It seems, however, to increase the symptoms normally attributed to DEX, not necessarily those attributed to the IMID drugs, so perhaps it potentiates mostly the DEX and not so much the IMID. Since I am not taking DEX, it might not help treat the myeloma.
But I have recently scraped my wrist, removing a small bit of skin, and that area is showing some infection. Since I'm allergic to penicillin, Dr. L prescribed a three-day regimen of Biaxin to calm that small infection site, so I guess there's a tiny chance that it will help with the myeloma too. Only a tiny chance.
I'm a little surprised to discover that my local pharmacy doesn't carry Biaxin, so I can't get it until tomorrow. I wonder if that's because it's usually sold in blister packs of 7 or 14 days, as Zithromax is sold, and I only need three days worth. Anyway we'll start tomorrow noon.
Pomalidomide is toxic to neutrophils, thus depressing my count. According to Dr. L, though, DEX can promote the production of neutrophils, another reason to use DEX with pomalidomide. Since I'm now off DEX, I don't enjoy that benefit.
The next appointment, in March, will bring us to the two-year anniversary of the PET scan which showed lesions in three of my bones. Since then the pomalidomide and DEX have presumably given the bones time to rebuild in those areas, but I asked Dr. L how we can be sure that the myeloma has not continued or renewed its attack on my bones. I care a LOT about this, because my runner's lifestyle would be halted abruptly by almost any broken bone. She pondered a bit and wasn't adverse to a new PET scan, I thought, but then suggested a new bone density measurement instead. She said that it might be a good idea because long-term DEX treatment can reduce bone density, and a loss of bone density correlates well with myeloma bone injury. So we'll do that. Yet to be decided is whether we do the bone density measurement on the next Mayo visit or, instead, at my local hospital where I have a baseline of previous measurements.
For at least 10 years prior to my myeloma diagnosis, I took naproxen (Aleve) tablets or liquid gels, standard over-the-counter dosage of 220 mg naproxen sodium, twice a day as suggested on the label, every day, to manage headache pain. Neurologists tried everything to get at a cause of the pain, but eventually we all concluded that the naproxen wasn't such a bad way to deal with whatever it was. When the pomalidomide drug trial began, my M-Spike at first came down rather steeply. Then, for whatever reason, the headaches disappeared, possibly a beneficial effect of the DEX. So I stopped taking naproxen in midsummer 2008. At about that time, the decline of the M-Spike slowed, and it leveled off at about 1.0 g/dL. Coincidence? Dr. L said that there is some evidence that NSAID's may have some anti-myeloma effect. I wonder if that might be increased synergistically if the NSAID is used in concert with another agent, such as pomalidomide. Dr. L wasn't adverse to a naproxen experiment, if I want to do it. I think that she agreed that naproxen is relatively safe. It poses a slight risk to the kidneys, but I get kidney function checked every 28 days. I'm thinking about it. The headaches do seem to be coming back a little, now that I'm off DEX.
Mayo wanted to do a trial of Celebrex with MGUS or smoldering patients, to see if that NSAID has a significant anti-myeloma effect, but the study could not accrue enough patients to go forward. I recall having an exchange of emails with the doctor who was heading that trial, back when my myeloma was smoldering, but I was not eligible as a trial subject for several reasons, not least of which was my long-term use of naproxen.
Dr. L was not aware of any study using naproxen. If I try it, I probably shouldn't change anything else, no change to the supplements I'm taking, or I won't know what made the difference if there is one.
I mentioned to Dr. L that I tried to refill my prescription for acyclovir, which I take to ward off shingles, but the pharmacy said they couldn't get a supply of it. She was aware that there is currently a shortage, and suggested a couple of alternatives, but thought perhaps I could just get along without it, especially since I am off DEX right now. No more acyclovir, at least for a while.

Some current test results:

Test	Nov 12	Dec 10	Jan 07	Feb 04	Remarks
M-spike g/dL	0.9	0.9	1.0	1.0	Best tumor measure
IgG mg/dL	1100	1090	1110	1180	Variation is normal
L FLC mg/dL	2.61	2.36	2.18	2.78	L Free light chains
Calcium mg/dL	9.8	10.0	9.6	9.8	Below 10.2 is best
Creat mg/dL	1.0	1.1	1.1	1.1	Kidney, normal
HGB g/dL	14.4	14.3	14.4	14.2	Hemoglobin, normal
RBC M/uL	4.00	4.00	4.05	4.00	Red cell count, low
WBC K/uL	3.9	3.7	3.5	3.8	White cells, low
ANC K/uL	1.53	1.55	1.38	1.22	Neutrophils, low & falling

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Quite technical.

We recently ate at the Lake Elmo Inn, in Lake Elmo, MN. The Tuesday brunch buffet is scrumptious, with two entrees, lots of salads, vegetables, and fruit, and many irresistible deserts. That chicken is not gluten-free, but I scraped off the sauce before eating it. In the upper right is a homemade turtle with chocolate, caramel, and pecans. You can go back for more, and I did. We all did.

Critical Elements of Health Reform

2010-01-27T13:17:00.002-06:00

I received an email today from the International Myeloma Foundation (IMF) asking me to post about the Cancer Patient Statement of Principles, to help assure that the essential elements of health reform will become law despite the current partisan tension.

Happy to do it! These elements are:

Affordable access to basic and catastrophic health care coverage for as many Americans as possible.
The elimination of "pre-existing conditions" as a barrier to health care coverage.
The elimination of annual and lifetime caps on insurance coverage.
Closing of the Medicare "donut hole."
Continued investment in research and innovation to address the needs of those with all deadly diseases.

To show your support for these priorities, please visit the IMF advocacy page and contact your Senators and Congressperson. And feel free to blog about it yourself!

Thank you! Don

When The Receptionist Knows Your Name

2010-01-09T16:54:00.000-06:00

January 7, 2010, end of Cycle 24:

You know you're battling cancer when the receptionist at the Mayo Clinic Hematology desk knows your name as you walk in. Happened Thursday.

24 cycles of the pomalidomide (CC-4047, Actimid) study are complete, and it's been a great ride. Not over yet, but Thursday was a hint that it might be over before long. Or was it a hint? The worst news, really, was that M-spike went from 0.9 to 1.0 g/dL. I stopped dexamethasone (DEX) completely for this cycle, the first cycle without it, and M-spike inched up. Maybe. Although M-spike tracks the tumor burden most closely, it is not especially accurate, and IgG only went up a little, from 1090 to 1100 mg/dL, so maybe it didn't really change. IgG is a measure of ALL immunoglobulins, including the monoclonal ones that make up M-spike, so if M-spike goes up by 0.1 g/dL, then IgG has to go up by 100 mg/dL, all else being equal. So I don't know whether to cry in my beer or not. I guess I'll just drink it.

I did try to stave off an increase, with curcumin 8 grams per day and quercetin 4 grams per day during this cycle. Did they help? No way to know, but if they did, they didn't help enough to send M-spike southward. I've also taken ashwagandha for three cycles now, one capsule per day, and I think I'll probably stop that because it made no noticeable improvement for any of the three cycles. I'll keep taking the curcumin and quercetin for another cycle, on the theory that M-spike might have been worse without them.

The other bad news is that my neutrophil count has dropped to 1.38 K/uL, its lowest level ever and well below the bottom of the reference range, which is 1.70 K/uL. Further, my white cell count (which includes neutrophils) confirms this, dropping by just about the same amount. This is one of several possible pomalidomide side effects. I had thought I was immune to this problem, but now that I look closely, both of these numbers have edged downward during the 24 cycles. They bounce around a lot, because neutrophils and other white cells respond to microbial threats in the body, but the trend line tilts slightly downward, as indicated by the blue dots in this chart.

It's possible that those white counts are down partly because my body just hasn't encountered any threats lately. Somehow, I successfully navigated all of the Christmas and New Year's parties, plus a grandson visit, without catching anything. Whatever the reason, however, without sufficient neutrophils a person could develop a life-threatening neutropenic fever, so the pomalidomide study requires a neutrophil count of at least 1.00 K/uL. To keep the count high enough the regimen can be changed, from pomalidomide every day to three weeks on and one week off. If that isn't enough, there may be another way to reduce the dosage, perhaps taking the 2-mg capsules every other day, though we didn't discuss that. Getting ahead of myself here.

Running seems to be going a bit better without the DEX. Dr KDS says that it may take a couple of months for the DEX effects to wear off entirely. I do notice that a small open skin scrape on one ankle has healed over since stopping the DEX, and other little skin injuries heal faster too. I imagine that the microscopic muscle, tendon, and bone injuries that a runner gets all of the time will also heal more quickly. If so, they won't develop into painful injuries that would require me to stop or slow the training. We'll see. Several more marathons ahead this year, if all goes well.

Some current test results:

Test	Oct 15	Nov 12	Dec 10	Jan 07	Remarks
M-spike g/dL	0.9	0.9	0.9	1.0	Best tumor measure
IgG mg/dL	1020	1100	1090	1110	Variation is normal
L FLC mg/dL	2.68	2.61	2.36	2.18	L Free light chains
Calcium mg/dL	10.3	9.8	10.0	9.6	Below 10.2 is best
Creat mg/dL	1.0	1.0	1.1	1.1	Kidney, normal
HGB g/dL	15.0	14.4	14.3	14.4	Hemoglobin, normal
RBC M/uL	4.21	4.00	4.00	4.05	Red cell count, low
WBC K/uL	4.2	3.9	3.7	3.5	White cells, low
ANC K/uL	1.78	1.53	1.55	1.38	Neutrophils, low

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

Sunshine made this. I ate it for dinner. Yum.

Two Links

2009-12-19T14:24:00.002-06:00

I gave a little talk Wednesday about the ASH Converence to our local support group. Here is a link to a PDF document of the slides: ASH 2009.pdf.

The National Cancer Institute Bulletin this month is about nutrition. Actually about supplements, but a key point in the video is that "about 30% of our cancers relate to our dietary habits." http://www.cancer.gov/.

More about ASH coming up.

Potroasted bison with avocado, organic grapes, organic carrots, organic lettuce, organic wine vinegar, a little brie:

No More DEX!

2009-12-12T14:39:00.004-06:00

YAY! After 23 cycles of pomalidomide (CC-4047, Actimid) with dexamethasone (DEX), I've taken my last DEX tablet, at least for a while. Recently I've only been taking 4 mg per week anyway, which probably doesn't do a lot of good but certainly seems to induce most of the same side effects as a larger dose.

Thursday's results (December 10) again show the myeloma to be stable. M-Spike, IgG, and light chains all about the same as 28 days ago. Stable is good - my myeloma and I are at a standoff. Let's hope that continues without the DEX. More actual test results are listed below and from the righthand panel.

Ashwagandha:

No noticeable improvement, so clearly the ashwagandha isn't helping much. Of course it's possible that the myeloma has begun to figure out the pomalidomide, so M-spike would be higher without the ashwagandha, but I doubt it.

DEX Replacement:

First of all, maybe the DEX doesn't need to be replaced. But I'll see if I can find something that will help the pomalidomide, so that I don't have to go back on DEX. In my own earlier efforts to find a treatment, I had thought that nothing did much good, because M-spike never seemed to go down or even stop climbing. Looking back, though, I can see that IgG did stop climbing for a while, even if M-spike didn't seem to, when I was on my "kitchen sink" regimen, taking low-dose naltrexone (LDN) with curcumin, quercetin, resveratrol, and EGCG. The truth is that M-spike can't actually climb much when IgG is stable, so M-spike was probably more stable than I thought back then. Now, what would happen if I replaced the DEX with the kitchen sink stuff?

Oh, that's right, LDN is a prescription, so I'd need to discuss that with Dr L and I doubt it would be permitted as part of the study. I need a substitute. LDN is thought to work by causing the body to release endorphins which help somehow, possibly just by inducing a very sound sleep. Well, ashwagandha does that too, at least it seems to put me to sleep. So I guess I'll keep taking the ashwagandha at bedtime. Here's the new regimen, to be merged in with the other supplements that I take:

Ashwagandha	225	mg
Curcumin	8000	mg
Quercetin	4000	mg

If those don't seem to make a difference after a cycle or two, I may try resveratrol and EGCG next. We'll see. Meantime I have to order more of the supplements. The full updated supplement regimen will be available from a link in the right-hand panel soon.

Wild Alaskan Salmon Oil:

We recently spotted this product on the shelves at Costco in Maplewood, MN: Wild Alaskan Salmon Oil. It is made by a company calling itself Alaska Protein Recovery, LLC, and purports to be (1) Free of mercury and other heavy metal pollutants (because Alaskan waters are low in pollution), (2) from a certified sustainable wild-salmon fishery, and (3) "proud to be made in the USA" (i.e. not from China). Two 1000-mg capsules supply 600 mg of omega fatty acids, including DHA 220 mg and EPA 180 mg. I must admit that I don't know if that is good or not - I haven't studied fish oils. The flax oil that I already take shows different fatty acids on its label, so comparison is difficult. I have been taking two flax oil capsules per day, and will now add two salmon oil capsules. Perhaps by the time I've used up the 180 salmon oil capsules I'll know whether this was a good idea or not.

Some current test results:

Test	Sep 17	Oct 15	Nov 12	Dec 10	Remarks
M-spike g/dL	0.9	0.9	0.9	0.9	Best tumor measure
IgG mg/dL	1070	1020	1100	1090	Variation is normal
L FLC mg/dL	2.54	2.68	2.61	2.36	L Free light chains
Calcium mg/dL	9.9	10.3	9.8	10.0	Below 10.2 is best
Creat mg/dL	1.1	1.0	1.0	1.1	Kidney, lower is better
HGB g/dL	14.7	15.0	14.4	14.3	Hemoglobin, normal
RBC M/uL	4.08	4.21	4.00	4.00	Red cell count, low
WBC K/uL	4.1	4.2	3.9	3.7	White cells, normal

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

More ASH reports coming up.

Our Voices Matter

2009-12-09T13:01:00.002-06:00

I've been a mighty lucky guy throughout my myeloma voyage, at least so far. I had a great doctor watching me through MGUS and smoldering, and then was lucky to get a wonderful Mayo doctor who used an PET scan to determine that I was symptomatic BEFORE any bones broke, and got me on a trial of pomalidomide, which has kept me stable (and running!) for the better part of two years. And my insurance has been good.

Others are not so lucky, and I meet many of them in our local Twin Cities support groups. Many have broken bones or other organ damage because of poor diagnosis, or have been on every approved and available treatment including autologous and allogenic stem cell transplants, and don't know what to do next. Many have struggled with their insurance companies or with Medicare to get the treatment that their doctor advises, and some have chosen a less-preferred treatment because insurance would not cover the preferred one.

The International Myeloma Foundation (IMF) has joined with the Myelodysplastic Syndrome Foundation and the Tackle Cancer Foundation to create a Cancer Patient Statement of Principles. Hover over any one for a more complete description of that principle, or click it to download the full document from an IMF web page:

Principle 1: Prevention is the key to reducing the burden of cancer (including myeloma).
Principle 2: Continuing innovation is critical to early diagnosis and better treatment.
Principle 3: Equality of access to care is imperative.
Principle 4: Early approval of new treatments for deadly cancers is essential.
Principle 5: Patients who have exhausted approved therapies need simplified access to experimental agents whenever possible.

These seem to be common-sense fundamentals, but we don't have them now. Example: Insurance may pay for Velcade, because it is administered as an IV drip in a hospital or clinic setting. But insurance may not pay for Revlimid, because it is a prescription. Therefore the patient may choose Velcade and drive to a hospital several times a month, possibly hundreds of miles, even though the doctor might believe that Revlimid would have been the better treatment for this patient.

Example 2: I know several people now who have died from myeloma which progressed because nothing worked any longer. I wish those friends could have had the pomalidomide that I am taking, or the carfilzomib that is also on the horizon. Who knows - they might still be with us.

Needless to say I believe strongly in these principles. They make a lot of sense to a cancer patient. So what do we do about it? Lobby! Right now health care legislation is big news, with large issues like "how will we pay for it all" taking up most of the air. Nevertheless, our issues will require new legislation. There are congressmen on both sides of the aisle willing to get behind a bill, or perhaps an amendment, when the time is right. Whether this happens as a part of a huge new health care bill or as a follow-up bill, the IMF needs support for its lobbying effort in Washington.

If you agree with these principles, I encourage you take action, and to send an email to your representative and your senators. The IMF has a web page which makes it easy to do that and to learn more about pending legislation and even to sign up to be notified about changes.

Thank you!

More ASH news coming up, stay tuned. -- Don

ASH Begins

2009-12-06T08:03:00.001-06:00

Practical Approaches in Myeloma: Optimal Management of Newly Diagnosed and Relapsed/Refractory Disease.

I met a woman Friday whose myeloma was diagnosed in 2008, and who was told by two different Washington D.C. hematologists that she should get her affairs in order because she didn't have long to live. Both of those doctors were wrong - she is very alive and doing much better today, thank you, because she learned better online and found doctors who know more than those two. The American Society of Hematology (ASH) Conference began Friday night with a "Satellite Session" presented by the International Myeloma Foundation (IMF), designed to help doctors understand diagnosis and treatment of myeloma at all stages. It was a primer aimed at the practitioner who needs a refresher course in "what's current." Four different doctors gave presentations, with Dr. Durie of the IMF acting as chair. A doctor who attended that session would not make the mistakes that the two D.C. doctors made.

Dr. Vicent Rajkumar of Mayo Clinic in Rochester spoke first about diagnosis, explaining the comparative benefits of immunofixation, serum protein electrophoresis, and free light chain analysis. We need all three because myeloma is not a single disease, and can sometimes hide from any one of them but not from all. Further, we may need both FISH and cytogenetic studies to examine the particular risk factors for any particular patient.

He mentioned that people with monoclonal gammopathy of undetermined significance (MGUS) have a 1% per year probability of progressing to myeloma, whereas those with smoldering myeloma have a 10% probability of progressing to symptomatic myeloma each year. He also thinks that neuropathy may be treated as another "C.R.A.B." (calcium, renal, anemia, bone) symptom that can herald the onset of Stage I myeloma, particularly when the neuropathy cannot be attributed to any cause other than the myeloma.

Dr. Phillippe Moreau, of Nantes, France, described current and new treatments for newly-diagnosed patients, including many different combinations of drugs. The audience, mostly hematologists, was asked whether autologous stem-cell transplant (ASCT) was the "standard of care" for newly diagnosed patients, and 75% said yes. Dr. Moreau's studies in Europe, however, seem to be showing that combinations of new drugs can do as well at achieving "Very Good partial Responses" (VGPR) or Complete Responses (CR), and that those responses do hold up to provide time-to-progression and overall survival comparable with transplants. For high-risk patients, however, the data is not available and ASCT may be the safest choice.

If a transplant is contemplated, it appears to be beneficial to use the drug combinations first anyway, because achievement of VGPR or CR before the transplant improves the outcome of the transplant. The question was asked, "if a patient preparing for a transplant achieves a CR, do we go ahead with the transplant anyway?" The doctors at the speakers' table did not agree on the answer to that question. If my opinion counts for anything, I personally would never embark on a transplant having already achieved CR or even VGPR. Go on maintenance and save the transplant in case it's really needed some day.

One of Dr. Moreau's studies has shown that a reduced Velcade regimen with a reduced dexamethasone (DEX) regimen can be effective but with much less neuropathy.

Consolidation is used after a major treatment such as a transplant. It is an additional drug regimen designed to improve the transplant outcome and bring the patient to a CR or at least VGPR.

Maintenance is used after a transplant or other major treatment, to maintain the good result achieved there. It DOES improve the overall survival. According to Dr. Moreau, that question is answered.

In answer to a question from the audience, Dr. Rajkumar said that there is no data showing that an early transplant improves a person's survival compared with a later transplant. This question is under study though.

Dr. Mario Boccadoro of Turin, Italy, described the treatment options for patients aged 65 and beyond, in Europe. In the USA we do not make a hard cutoff at age 65, but Europe does. He mentioned melphalan a lot, an "alkylating agents" which works by messing up the cell's DNA and perhaps initiating other cancers that will appear years later. Most of the regimens that he mentioned for us older folks have been around for years. He did mention one study that included Revlimid with the melphalan and DEX, and preliminary results looked good.

OF COURSE it looked good! And why shouldn't we ancients get the benefit of the novel therapies, just as the younger set does? Duh.

One interesting remark by Dr Boccadoro: In one of the studies, the control group had a better overall survival than the study group, despite the clear benefits of the study regimen. The explanation was that the patients in the control group were free to change regimens and do whatever was necessary to survive, whereas, apparently, the study group was not. I think I'll do my very best to opt OUT of a study like that.

Dr. Robert Z. Orlowski, M. D. Anderson Cancer Center, presented the standard of care for relapsed and refractory patients. "Refractory" means that current treatments have stopped working, where "relapsed" means that a patient had achieved a response but the tumor burden has started to increase again. He suggested these treatments, in order: (1) Something that worked before, whatever that might be, (2) Velcade alone or with DEX, (3) Velcade with Doxil, and (4) Add DEX or even an alkylating agent (melphalan or cyclophosphamide).

He also spoke well of carfilzomib, the new proteasome inhibitor, under study at M. D. Anderson. It causes much less neuropathy than does Velcade, and is even effective for 30% of the patients who are refractory to Velcade. He also mentioned two more drugs, presently approved, which do not have specific anti-myeloma activity by themselves but which can improve the efficacy of another drug, such as Velcade.

Bison sloppy-joe on organic corn chips, with macadamia nuts, cheese, and mixed veggies.

Mayo Clinic Cycle 22, Still Stable

2009-11-25T15:39:00.003-06:00

I've had trouble sitting down to write this post. The Mayo visit was November 12, almost two weeks ago. Plenty to say, but everything else intervenes, and I STILL don't have all the leaves picked up off the lawn.

Test Results:

At the end of Cycle 22 of the Mayo Clinic trial of pomalidomide with dexamethasone (DEX), no change in M-spike. Still 0.9 g/dL, which isn't bad. In fact the lab said it was 0.86 (verbal), but they round up for the written report because the test really isn't accurate enough to support two digits past the decimal. M-spike has hovered between 1.1 and 0.8 g/dL since June of 2008. IgG is up a little, but Lambda free light chains are down a little and the K/L ratio is up (good). Stable!

Calcium is back where it should be, and none of the other tests raise any eyebrows. Enough about test results.

Ashwagandha:

I've taken 225 mg of Sensoril brand ashwagandha every evening for the entire cycle. With no discernible change in test results, it's hard to say that the ashwaghanda has done anything, except help with a good night's sleep. Maybe I should double the dose. Instead, though, I'm now taking the pomalidomide at night, with the ashwagandha, rather than in the morning. That may make a difference, maybe not.

Peripheral Neuropathy:

Some months ago, after 15 cycles of pomalidomide, I noticed some numbness in the soles of my feet and a little tingling in my thumbs. No pain. I immediately did some research and started a new treatment for it, and the neuropathy stabilized. It hasn't changed much now in several months. I do not know whether my treatment is helping to stabilize it, because I haven't stopped the treatment to find out, but for what it's worth, here it is:

Daily dosage:

A good daily vitamin
A good multi-B vitamin
Vitamin B6	100	mg
Vitamin B12 sublingual	1000	mcg
Vitamin E	200	mg
Alpha Lipoic Acid	1200	mg
L-Carnitine	1000	mg
Bromelain	1000	mg
Flax Seed Oil	2000	mg
Curcumin	500	mg

Where it's necessary to take more than one capsule or tablet, I divide the dosage in two, taking half with breakfast and half with dinner.

I also believe in keeping the "peripherals" warm, because healing works far better when tissue is at body temperature. I wear wool socks most of the time, even in bed, and cotton gloves in bed. In addition, we eat very well (nothing that doesn't contribute to health), and get good exercise.

Things that are recommended (somewhere) but which I do not yet do:

Topical emollient creams, with cocoa butter and spearmint, menthol, or even capsaicin, to stimulate nerves.
Evening primrose oil supplement.
"Magnesium Oil."
L-Glutamine, up to 30 grams daily. I have it on hand, just don't find it convenient to take it.
Pickle juice can work for cramps, maybe for neuropathy? One friend swears by it.
Acupuncture.
Transcutaneous electrical nerve stimulation (TENS). May have a temporary benefit.
I don't smoke, but if I did I should stop! Duh.
Biofeedback.
Infrared heat.
There are various gizmos and treatments advertised on the web. Buyer beware.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

Some current test results:

Test	Aug 20	Sep 17	Oct 15	Nov 12	Remarks
M-spike g/dL	0.8	0.9	0.9	0.9	Best tumor measure
IgG mg/dL	979	1070	1020	1100	Variation is normal
L FLC mg/dL	2.07	2.54	2.68	2.61	L Free light chains
Calcium mg/dL	9.7	10.0	10.3	9.8	Below 10.2 is best
Creat mg/dL	1.1	1.0	1.0	1.0	Kidney, lower is better
HGB g/dL	14.8	14.5	15.0	14.4	Hemoglobin, normal
RBC M/uL	4.13	4.01	4.21	4.00	Red cell count, low
WBC K/uL	3.9	3.7	4.2	3.9	White cells, normal

Discussion with Dr. L:

She finished a recent marathon in a very nice time, despite having to wear a lot of clothing to keep warm.
She thinks that my running inspires hers. As for me, I'm very proud of her.
In answer to my question, yes, get a pneumonia shot.
If ashwagandha didn't help in the first month, maybe in another month.
There is a study of an oral form of Velcade.
There is also a study of a drug currently in use for renal cancer.
The pomalidomide trial is now open for people who have failed both Revlimid and Velcade.

American Society of Hematology (ASH):

Apparently it is unusual for a myelomiac to be able to run marathons. Thus far I have been lucky enough to avoid broken bones, and I've done eight marathons this year. The International Myeloma Foundation (IMF) has invited me to attend the annual ASH Conference, December 4-7, as an advocate for new treatments like pomalidomide. I will try to blog about it in real time, and will certainly report on it afterward.

Don finishing the OBX Marathon November 8

Ashwagandha

2009-10-23T14:40:00.011-05:00

Mayo Clinic Visit Thursday, October 15, 2009, end of Cycle 21

Blood test results: M-Spike remained the same at 0.9 g/dL, IgG dropped slightly from 1070 to 1020 mg/dL, and Lambda light chains increased slightly from 2.54 to 2.68 mg/dL. These results don't really show a trend one way or another. "Stable" is the word.

Except: calcium is up from 9.9 to 10.3 mg/dL, above the reference range, and we don't know why. High calcium in the blood can indicate that bone damage is occurring. It went that high once before, though, and dropped right back down a month later. Hopefully next month's value will be back within range. I will skip my calcium supplements for a day or two before next month's tests, in case that makes a difference.

Of course I'm still concerned about the longer term, when the Phase II trial of pomalidomide with dexamethasone (DEX) eventually fails for me and a different, less-agreeable treatment will be required. Two months ago we reduced my DEX dosage from 8 to 4 mg once weekly - perhaps that was a mistake. Unfortunately, though, under the terms of the study, DEX can only be decreased and never increased, so if I want to continue taking pomalidomide I will continue taking 4 mg or less of DEX. Pomalidomide is good stuff - I DO want to continue on it for as long as possible.

Ashwagandha:

The study doesn't say much about supplements. Margaret has recently blogged about ashwagandha, also called "withania somnifera," a shrub from India and nearby countries. The root is widely used as a medication in that region, and in alternative medicine in other parts of the world. Margaret took ashwagandha herself, and saw her IgG drop 25% and M-Spike drop 10% over a period of several months. She has written several posts about ashwagandha, all worth reading. Because of her apparent success, I have begun taking ashwagandha in a modest dosage. I ordered the patented Sensoril brand, packaged in capsules by Jarrow. I take one 225-mg capsule daily, the amount suggested on the bottle, at bedtime because it also induces a restful sleep.

In addition, I have added 100 mg of ordinary vitamin B6 to my regimen as an additional treatment for the mild neuropathy that is induced by the pomalidomide, and doubled the supplements for thyroid. The entire daily supplement regimen is available from a link in the right-hand panel.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wiiide browser window. Very "technical."

Some recent test results:

Test	Jul 23	Aug 20	Sep 17	Oct 15	Remarks
M-spike g/dL	0.8	0.8	0.9	0.9	Best tumor measure
IgG mg/dL	1010	979	1070	1020	Variation is normal
L FLC mg/dL	1.95	2.07	2.54	2.68	L Free light chains
Calcium mg/dL	9.6	9.7	10.0	10.3	Below 10.2 is best
Creat mg/dL	1.0	1.1	1.0	1.0	Kidney, lower is better
HGB g/dL	14.0	14.8	14.5	15.0	Hemoglobin, normal
RBC M/uL	3.93	4.13	4.01	4.21	Red cell count, low
WBC K/uL	5.6	3.9	3.7	4.2	White cells, normal

Discussion with Dr. KDS:

Don:

Peripheral neuropathy from the pomalidomide has not changed much in this cycle. Still some numbness in the bottoms of my feet and in my thumbs. There is also a little tingling but no pain. The "tickle" sensation in my feet, sensitivity to light touch, might actually have improved somewhat, but the sensitivity to pressure has definitely not improved.
Many myelomiacs get shingles, because of compromised immune systems. I'd rather not, thank you. So I asked Dr. KDS about the shingles vaccine:
- It is a live-virus vaccine, and not recommended for people who are immunocompromised; but
- I don't get sick much - no empirical evidence that my immune system actually IS compromised, but
- She pointed out that IgA, IgG, and IgM are important parts of the immune system, and in my case both IgA & IgM are at very low levels;
- Further, if we subtract the monoclonal (worthless) M-Spike component of IgG from the total IgG, the remaining "good" IgG is also well below normal; so
- I guess I really do have a compromised immune system. Not enough immunoglobulin goblins. **
- Dr. KDS knows of a case where an immuno-compromised patient actually DID get shingles from the vaccine. Ouch.
- I suggested using the killed-virus chicken-pox vaccine off-label as a shingles vaccine, but don't recall her response. It wasn't positive.

KDS on flu vaccines for myelomiacs, same advice as last month:

Get the 2009 H1N1 vaccine as soon as it is available to me. I am not in one of the highest-priority groups.
Get the seasonal flu vaccine when it is available to me.

Don's thoughts on flu vaccines for myelomiacs (Dr. KDS is not implicated in the following content :-)):

Seasonal Vaccine:
- So far, the CDC is not seeing much seasonal flu. In their latest report, almost all of the viruse samples submitted to them in the week Oct 4-10 were found to be 2009 H1N1.
- Therefore, we need not rush to get the seasonal vaccine, because there isn't much risk of encountering the virus yet. However:
  - The seasonal flu is at least as deadly as 2009 H1N1;
  - Tens of thousands of people DIE from it every year in the USA alone; and
  - Those of us with compromised immune systems are especially at risk; so
  - We definitely should get it well before the seasonal flu peak arrives. The past three seasons saw minor peaks around Christmas with the major peak in February.
2009 H1N1 Vaccine:
- Availability may be spotty because of the priority system, which is applied differently in different places.
- Get it as soon as it is available, because the VIRUS IS AMONG US! Rampant in some schools.
- In the meantime, we might be well advised to stay away from groups of people, especially young people.
- Some doctors say that the vaccine might not do much good anyway, because compromised immune systems can't muster a proper response, but
- To me that sounds like an excuse and not a reason. If it "might not" do much good then it also "might" do some good, and that's enough for me.
- That same excuse could be used for skipping the seasonal flu vaccine, and no doctor suggests that.
- I have not heard of any downside of the H1N1 vaccine, other than the rare problems that can occur with any flu vaccine. If you have heard otherwise, please comment.

We three have some airplane flights coming up, and have even talked about wearing medical masks in that wheezy, sneezy, huddled mass of humanity. We'll see!

** Halloween humor

Salad as dinner.