Saturday, July 27, 2013

Avoiding Myeloma Progression

I dread the day that my myeloma figures out how to defeat the Pomalyst. Every 28 days we check for problems, and I never really breathe easy until I get the numbers. So far, though, the Pomalyst (2 mg daily as a single agent) has kept my M-spike stable at around 1.1 or so. Why hasn't it evolved into a form that can evade the Pomalyst?

Here is my theory:

First, we know that myeloma is initially caused by a genetic mutation in a plasma cell or in a stem-cell-like precursor cell. That cell produces more cells just like it. The initial mutation may be spontaneous, but more likely is caused by damage to the cell's DNA by an environmental factor such as radiation or nasty chemicals. Benzene, for example, a component of gasoline, is a known cause of myeloma. That first mutation has to surmount several hurdles for the cell to become cancer, and most mutations fail, because they are detected and squashed by the immune system, or because the cell dies as it is programmed to do when something goes wrong. Mutations actually happen frequently, but very, very few become cancer - only about 1 adult in 12,000 is diagnosed with myeloma in the USA each year.

On the Family Means
Garden Tour two weeks ago.
Nevertheless it happened to me and I have myeloma, now being kept at bay by Pomalyst for as long as the myeloma doesn't mutate again. Unfortunately, though, most of the hurdles have already been met, and my errant plasma cells only need a simpler mutation that will allow one of them to escape the effect of the Pomalyst. In fact, researchers have identified "sub-populations" of slightly-different myeloma cells in some patients, and have found that some of those cells can be resistant to the patient's current treatment, eventually enabling the myeloma to defeat that treatment. I believe that is how myeloma progresses in the face of a treatment that was once effective.

Hence, as I see it, my job is to do my best to minimize more mutations and their resulting sub-populations. If it was important to avoid cancer in the first place, it is even more important now, and the effort is the same.

Avoiding (more) Cancer:

This is a two-pronged job: (a) Minimize my exposure to environmental contaminants, to reduce DNA damage that might cause a mutation, and (b) enhance my immune system to maximize the chance that any mutation will be detected and stopped.

Reducing My Exposure to Environmental Damage:

This is a huge subject, enough for thick books. Very briefly, our family eats "real" organic foods where that counts the most, we avoid GMO foods and acrylamides, we have reduced our exposure to BPA and other contaminants from food packaging and dishware. I have stopped using insecticides and nearly stopped using herbicides (except to go after some enthusiastic poison ivy), and I wear a fumes mask anytime I use a small engine (lawn mower, chainsaw, snow blower) or transfer gasoline into one. There is much more - perhaps I'll blog about it all at another time.

Strengthening My Immune System:

I believe that I have some control over at least four things that can affect the health of my immune system: (1) Nutrition, (2) Exercise, (3) Sleep, and (4) Stress.


We stick to "real" food, defined as food that my grandmother and her mother would have recognized and might have served to their families. We eat plenty of organic vegetables and even more organic fruit, along with a variety of nuts. We do eat meat, though the red meat is always 100% grass-fed beef and poultry is always organic. Dairy products are mostly organic too, and always rBST/rBGH-free. We do not drink soda. Last October, Dr. Brian Durie of the International Myeloma Foundation gave a landmark teleconference, Ten Steps to Better Nutrition, for myeloma patients (and indeed for everyone!), which is available as a podcast, with slides. It describes what we do at our own house, and could be the bible for anyone with cancer and, in fact, for anyone who eats.

Since that teleconference Dr. Durie has published at least two more articles on nutrition:

Hardly a week goes by without a news report advising us of another way that exercise improves our health. One way, of course, is that exercise improves our immune systems. Indeed, there is an International Society of Exercise Immunology with biennial scientific symposia focusing on research directed towards the improvement of health and the prevention and treatment of disease through physical activity. There is even a new field of "exercise oncology," where studies have shown that moderate intensity exercise is associated with increased survival in several different kinds of cancer. Exercise Immunology Review 2013 (PDF).

I do not doubt that physical activity benefits my immune system. As with most good things, though, too much can work to my disadvantage and there is some chance that extreme exercise, such as a marathon, may temporarily suppress the immune system somewhat. The benefit does not actually come from the 26-mile race itself, but from day after day of training for the race, shorter runs that are energizing and which leave me feeling full of life. My immune system could do just as well if I never ran a marathon, but my family and I like traveling to marathons and running them, and we appreciate the incentive to keep training for the next one.


Again, numerous studies show that the immune system cannot function well without sufficient sleep. After eight hours of sleep I wake up clear-headed and ready to meet the day, but with much less than eight I wake up feeling tired, inefficient, and maybe even a bit cranky. Everyone is different, but eight is my minimum, and I make every effort to get that much, uninterrupted and in a cool, dark, quiet room.

Cat administering
anti-stress treatment

I don't have much to offer here. I always feel as though I have too much to do and not enough time to do it. I have a lot to learn about dealing with stress. My cat knows more about it than I do - when she climbs into my lap, we both settle down and take a few minutes off from the hustle-bustle of the day.

Bottom Line:

After more than five years on Pomalyst my myeloma still has not progressed, which means that no mutation of the original myeloma has yet been able to survive the immune system and rise up to defeat the Pomalyst. I believe that my efforts to reduce DNA damage and to strengthen my immune system may have helped, perhaps a lot, but I can't prove it. You decide.

Pomalyst Study Cycle 70:

IgG was basically unchanged this month, compared with last month, at 1290 mg/dL. M-spike was 1.1 g/dL, compared with 1.0 last month, but it isn't very accurate and probably should have been 1.1 last month. Light chains wobbled a little but I never know what to think of them anyway.  Dr YLH and I agreed that the myeloma remains stable after 70 28-day cycles.

Most-Recent Test Results:

Test    May 02    May 30    Jun 27    Jul 25     Remarks
M-spike g/dL 1.1 1.0 1.0 1.1 \ Tumor marker
IgG mg/dL 1060 1070 1300 1290 / Tumor marker
Lambda mg/dL 2.89 3.72 2.61 3.10 L free light chains
Kappa mg/dL 1.94 2.00 1.95 1.67 K free light chains
Ratio 0.26-1.65 0.67 0.54 0.75 0.54 Kappa / Lambda
Calcium mg/dL 9.4 9.3 9.5 9.7 OK
Creatinine mg/dL 1.2 1.3 1.2 1.3 Kidney, OK
HGB g/dL 14.9 14.8 15.1 14.5 Hemoglobin, OK
RBC M/uL 4.40 4.33 4.38 4.23 Red cells, low
WBC K/uL 4.5 4.8 5.1 4.9 White cells, OK
ANC K/uL 1.5 2.7 2.4 2.6 Neutrophils, OK

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.


  1. Don,
    Thank you for your informative and inspiring post and I am particularly happy to read that Pomalyst is keeping your myeloma in check. That is great!

    I was diagnosed with MM in 2010 and underwent radiation and chemo followed by an autologous stem cell transplant. I was in remission for 18 months and am now back in treatment - Velcade - which is still working for me to beat back the lambda light chain.

    I wish you continued good results from Pomalyst!
    Carole Leigh

    My myeloma blog is Compelled CLarity, at

  2. Thanks Carole - I'll stop in and look at your blog, and I wish you the best in your journey with myeloma.