Still Stable

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

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?

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

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

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

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

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

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

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

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

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

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

Oral Drug Parity, Part 2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.