Thursday, February 11, 2010

Second Level of Advocacy

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.

Friday, February 5, 2010

Cycle 25 Results

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.

Wednesday, January 27, 2010

Critical Elements of Health Reform

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.
International Myeloma Foundation

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

Saturday, January 9, 2010

When The Receptionist Knows Your Name

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.


Saturday, December 19, 2009

Two Links

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:


Saturday, December 12, 2009

No More DEX!

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.

Wednesday, December 9, 2009

Our Voices Matter

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.
International Myeloma Foundation
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:
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

Sunday, December 6, 2009

ASH Begins

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. 

Wednesday, November 25, 2009

Mayo Clinic Cycle 22, Still Stable

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


Friday, October 23, 2009

Ashwagandha

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


I ate that
Salad as dinner.

Saturday, September 19, 2009

Mayo Clinic Visit Thursday, September 17, 2009, end of Cycle 20

Every treatment for myeloma seems to fail eventually. Somehow the cancer evolves, and the M-spike starts to climb again. On this Phase II trial of pomalidomide with dexamethasone (DEX), M-spike is checked every 28 days. It had been stable or dropping in recent months, but this time it went up, from 0.8 to 0.9 g/dL. Furthermore, this appears to be a real change, because IgG also went up 9%, from 979 to 1070 mg/dL, the highest level since February. Lambda light chains increased too.

But the news isn't quite as scary as it sounds. First, a small increase in M-spike doesn't necessarily mean that the bottom has been reached - we have seen M-spike go up before and then come back down again. It's happened twice already this year. Second, the increase in IgG could be due to an immune-system response to some sub-clinical invader in my body. In fact this seems fairly likely, because my white count and neutrophils are up slightly from last month and eosinophils are through the roof. Something may be going on besides myeloma at the moment.

Bottom lines:
  • I'll have to wait another month to see if M-spike is really turning upward again. I sure hope not - it would be wonderful to get a nice, long ride from pomalidomide, because the drug regimen is relatively easy to take. When it fails, I will no doubt need to switch to something with more side effects.
  • This uptick in M-spike coincides exactly with a reduction in the DEX dosage from 8 mg to 4 mg once weekly. So my hopes of going off DEX in the upcoming cycle are null and void. In another 28 days we'll see.
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 recent test results:

Test Jun 25   Jul 23   Aug 20   Sep 17  Remarks
M-spike g/dL 0.9 0.8 0.8 0.9 Best tumor measure
IgG mg/dL 1010 1010 979 1070 Variation is normal
L FLC mg/dL 2.63 1.95 2.07 2.54 L Free light chains
Calcium mg/dL 9.6 9.7 10.0 9.9 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.0 1.1 Kidney, lower is better
HGB g/dL 14.0 14.8 14.5 14.7 Hemoglobin, normal
RBC M/uL 3.93 4.13 4.01 4.08 Red cell count, low
WBC K/uL 5.6 3.9 3.7 4.1 White cells, normal

Discussion with Dr. KDS:

Don:
  • Peripheral neuropathy from the pomalidomide might be a little worse. It measures the same, but may have increased in areas that I don't measure, such as the backs of my hands. It does not interfere in my lifestyle in any way. There is no sensation from it unless I'm stepping on my feet.
  • There are no red bruise marks on my arms this time. Did the reduction to 4 mg DEX make my skin less sensitive to bruising?
  • I'm probably not getting slower (running) any more - maybe a little faster, though that may be psychological.
KDS:
  • Wants me to stay on the current 4 mg dosage of DEX for at least 2 cycles before discontinuing it. So at least one more.
  • DEX can cause steroid-induced myopathy, but my modest reduction in muscle capacity does not qualify.
  • Muscle wasting is probably reversible if DEX can ever be discontinued.
  • There is some risk of avascular necrosis of the hip with long-term DEX usage, but she can't quantify it. Balance that unknown risk against the other unknown risk of dying sooner from myeloma. Yikes.
KDS on Flu Vaccine:
  • Get the 2009 H1N1 vaccine when it is available to people in my risk stratum. Immuno-compromised old people are at the top of the "second tier."
  • According to the CDC (I looked this up): First tier is pregnant women, then health care workers, then all people age 6 months to 24 years, then people age 25-64 who have health conditions which put them at extra risk. Those first-tier groups comprise about half the population!
  • Those of us who are over 64 probably have some immunity already, so we go later, even if we are immuno-compromised.
  • Get the seasonal flu vaccine no later than November, but maybe sooner if the "regular" flu season (ignoring 2009 H1N1) seems to be peaking early.
  • The two vaccines can be taken on the same day.
  • Here is a link to the CDC 2009 H1N1 Flu Page.
  • Here is a link to the CDC Weekly Update on Seasonal Flu.
My own flu shot advice: Keep in mind that I am an engineer and not a doctor, so feel free to IGNORE THIS ADVICE: Be sure to get the seasonal flu shot, because it may be at least as important as the 2009 H1N1 shot. Tens of thousands of people die every year from seasonal flu, especially immuno-compromised people.

Monday, September 14, 2009

MMRF Race for Research 5k Run/Walk

Jim & Don at the race Sunday, September 27, 2009, start time 9:00 am, come early.

The Multiple Myeloma Research Foundation (MMRF) holds an annual 5k run/walk at Lake Phalen Park in St Paul, Minnesota. It is a fun event which helps raise money for myeloma research, $120 million and counting.

Click HERE and then click "Register as an Individual" or "Register as a Family" on the left-hand panel.

Enjoy!