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Myeloma Lessons: Am I A Dope?

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Published: Nov 18, 2016 3:38 pm

No snide remarks, please, in regard to the question in this column’s title. It’s a bit rhetorical – I don’t ex­pec­t a response. Instead, the question is a play on words, as you’ll shortly see.

Regular readers of my column and my postings in the Beacon’s forum know that I make no secret of my belief in the value of exercise. Clearly, exercise produces all kinds of benefits. It strengthens the bones and muscles. It promotes cardio­vas­cular health. And it has been shown to im­prove mental health by stimulating chemicals in the body that simply make you feel better.

For cancer patients, or anyone facing a chal­leng­ing disease, the sig­nifi­cance of main­taining good physical health cannot be overestimated. The disease can put a great strain on the body. Obviously, the better your health, the more you are able to with­stand the effects of the ailment.

The same can be said of the ability to tolerate treat­ment. The strong chemicals used to fight multiple myeloma and other cancers can take a serious toll. A strong body can help the patient deal with the side effects.

This is particularly true for those who choose to undergo a stem cell trans­plant. Even the strongest among us is severely tested by what the high-dose mel­phalan used as part of the trans­plant process does to the im­mune system and the consequent physical effects that it causes.

Having gone through a stem cell trans­plant myself, I am convinced that being in above-average physical con­dition prior to the trans­plant, and making a concerted effort to exercise as best I could while recuperating from the trans­plant, helped immeasurably in my quick and com­plete re­cov­ery.

That ex­peri­ence convinced me that an emphasis on physical exercise had been and would con­tinue to be a critical part of my effort to combat myeloma.

Now it’s im­por­tant to under­stand that when it comes to exercising, I can be a bit over the top. My fiancée Audrey, after hearing my rendition of what I did while she was at work that day, often remarks: “You realize that you are insane, right?”

It is quite possible that her assess­ment is accurate.

It does seem a bit extreme for someone to get up at 5:00 a.m., go to the gym for an hour and a half, come home and eat breakfast, do a few chores, go for a three-hour bike ride, have lunch, mow the grass, and then perhaps do some yard work. I try to justify this borderline behavior in a number of ways.

I assert that it keeps me looking young – and who can argue with that! I extol the health benefits mentioned above. A commitment to exercising pretty clearly keeps me out of trouble since I am so tired by the end of the day that I cannot possibly go out and tear it up.

I also have argued that my regular exercise helps me fight the cancer that hit me so hard more than three years ago, but now appears to be in com­plete remission. Until now, how­ever, I had no scientific basis to sup­port this contention.

Several months ago, The Beacon published an article about myeloma-related presentations at the April 2016 meeting of the American Association of Cancer Research. Among those presentations was one titled “Dopamine inhibits growth of multiple myeloma” (abstract).

When I saw the Beacon’s summary of this presentation, I was ecstatic! I may be a dummy (or a dope), but even I know about dopamine.

Dopamine is a chemical in the brain that acts as a neurotransmitter and has a role in all kinds of im­por­tant body functions. I admit that I had to look some of that up, but I did know that exercise in­­creases the amount dopamine released in the brain, and that’s part of the reason we feel good – at least mentally – when we exercise.

So I read the abstract about dopamine and multiple myeloma. It is im­por­tant to stress that the researchers’ conclusions are theoretical based on how dopamine reacts with other chem­i­cals in the body that play a role in the “survival, growth and proliferation” of multiple myeloma cells. And I must admit that no matter how many times I read the abstract, I cannot readily under­stand or explain what these obviously smarter-than-I-am scientists are saying.

But I can read, and their conclusion is that dopamine could be “a new and effective ap­proach to retard the pro­gres­sion of multiple myeloma.”

There is no suggestion that we can simply “exercise away” myeloma. The authors of the article recog­nize the need to use dopamine, or other so-called “D2 re­cep­tor agonists,” in conjunction with traditional treat­ments to help stop multiple myeloma from progressing. But this is a poten­tially im­por­tant finding, since dopamine and other com­pounds like it are inexpensive and have known and man­ageable side effects.

For an arguably insane person like me, this report just adds fuel to a fire already burning out of control. I find myself work­ing harder, pedaling farther, and adding more to my activity plate, all with the intention of generat­ing in­­creased levels of naturally produced dopamine. After all, it may be the most im­por­tant thing that I can do on my own to keep the myeloma buried below detectable levels.

I remember when I was a kid there was an advertising campaign for a cereal which used the tag line “I’m cuckoo for Cocoa Puffs!” It came to mind when thinking about my reac­tion to the dopamine article. Am I “dopey for dopamine”?

One of the chal­lenges of a multiple myeloma diag­nosis is that there are so many unanswered questions. Why is it that two newly diag­nosed patients with the same symp­toms and laboratory findings, and who re­ceive the same treat­ment, can have radically dif­fer­en­t out­comes? Why is it that some of us have long drug-free remissions, while others have multiple myeloma that is dif­fi­cult to control even for a little while?

There are many theories on how best to attack the disease. Some believe in special diets or over-the-counter supple­ments, either to the exclusion of, or in addi­tion to, traditional treat­ments. No one really knows for sure what is best for a given case of multiple myeloma.

I have followed the conventional induction, to trans­plant, to main­te­nance route. But now I believe I have a wild card in in my arsenal: I am continuing to crank up the dopamine pro­duc­tion in my brain to help keep those nasty myeloma cells at bay.

I may be, as Audrey suggests, insane, but I am not crazy enough to ignore the poten­tial benefit of in­­creased dopamine levels.

Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his pre­vi­ously published columns here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Andrew Gordon, monthly columnist at The Myeloma Beacon.
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19 Comments »

  • Kully said:

    Andrew, I agree that physical fitness is important for cancer patients but this is true of anyone regardless of their circumstance. I was horribly affected by this disease and really can't do all that you listed but I do what I can, which should be everyone's mantra. I hope that you are successful and can hold back the myeloma while those like myself can trust that we're doing our best with what is left to us.

    Stay positive, it's why I enjoy your columns.

    Kully

  • Ron Harvot said:

    Put me in the "dope" column as well. When I finished the two-man 12-hour bike race at the Texas Time Trials, or when I completed the HHH bike rally in just under 6 hours, my non-biking friends just looked at me as if I was crazy. Those efforts of pushing yourself release the dopamine you mentioned and, as crazy as it might sound, I normally find a "second" wind about 4 1/2 hours into the effort!

  • Gil Siegel said:

    I am your sibling. I exercise extremely hard. Have had two stem cell transplants in 2010. Today after DNA sequencing testing this spring there is no multiple myeloma in me. I continue to push myself physically, but always stop when there is any discomfort. 67 years old and happy.

  • coachhoke said:

    Hey Dopey, I'm "Grumpy" while waiting for my lab results to be posted. I was also Grumpy most of the time when I was on dex. I'm "Happy" when the results come back "unchanged." I'm "Sleepy" just reading about your workouts.

    Another great article, Andrew. You keep raising the bar. You are an inspiration to all of us.

    Dr. Don Hoke (Actually I'm "Doc")

  • dimamar said:

    Awesome article, Andrew! I was diagnosed with MGUS in September, 2015, then stage 1, revised to smoldering, in September 2016 after a bone marrow biopsy and CT scan of head did not confirm the lesion found on an x-ray bone survey. Never learned to ride a bike, but I try to push-up, soccer, yoga, and HIIT away smoldering myeloma to multiple myeloma progression :-) Thanks for the inspiration!

  • vic said:

    Interesting article.

    Just to be devils advocate. If dopamine is so effective in keeping multiple myeloma in check, then how come the fit ones got it in the first place? Just saying.

    Hope it's true though.

  • Andrew (author) said:

    Kully - You hit the nail on the head: we all need to do whatever we can given the circumstances in which we find ourselves. It all counts.

    Ron - I knew that you would chime in. I completely understand what you are saying. Second, third, and fourth winds. All are good.

    Gil - Nice to meet you brother. Keep up the good work.

    Don - Very clever my friend. And here I thought that you were Snow White.

    Dimamar - Back at you in the inspiration realm. Never too late to learn to ride.

    Vic - You raise a good point. The study that I referenced does not purport to conclude that dopamine alone can control myeloma. Obviously, with every aspect of the treatment for this disease, there is much uncertainty.

  • PattyB said:

    Andrew, I think you are right on when you extol the benefits of exercising, especially for cancer patients. Like you, I might not understand all the science, but I do know that we feel much better after a brisk walk or a ride on the bike. My husband sounds a lot like you with his daily exercising, continual yardwork, and incessant little projects. Maybe he is dopey on dopamine too.

  • Eric said:

    Andrew,

    Thought you might be interested in the recent research on the effects of exercise on the immune system. Exercise can help strengthen our immune system, but too much exercise weakens it. So what determines the sweet spot? That's the question asked by a 2014 study from Neil Walsh and his colleagues at Bangor University, published in Medicine & Science in Sports & Exercise. Since we all strive to keep our immune system at its best, dealing with multiple myeloma may require optimization of the exercise we do. The optimization needs to focus on immune enhancement, not weakening it by non-optimal exercise.

    Food for thought. We used too think that whatever does not kill us makes us stronger. That may not be the case with exercise that is not optimizing our immune system.

  • Andrew (author) said:

    Eric - I have seen several studies on the topic. My takeaway was intensity was as much an issue as duration although some studies also call duration into question. There also is the suggestion that if you exercise for long duration eating extra carbs can help boost your immunity. I have not had many colds or other illnesses but I am keeping an eye on this.

  • Ron Harvot said:

    Certainly massive amounts of exercise, such as doing RAAM or the Tour de France, can weaken the immune system. That has been voiced before in the Beacon forums. That type of extreme exercise is certainly not what I would advocate. Those individuals tend to be highly trained athletes in the prime of their careers with full time trainers. Even with their high level of training and the advantage of full time trainers, the level of exertion in those races is so extreme that they will often get infections and some will have to withdraw from the competition. (Tejay Van Garderen had to withdraw from the 2015 Tour de France due to an upper respiratory infection.)

    On the other hand, what is extreme for one person may not be for another. Andrew and I are used to doing long bike rides and have logged in thousands of miles a year. That level of exercise would be extreme for someone that is just starting out, but not for people like us who have done it for years. How much is too much depends on the individual.

  • Steve Mohr said:

    Andrew,

    Another great column that has practical advice for all who suffer from multiple myeloma. In the last 11 months, I have undertaken an exercise regimen (walking 5-6 miles per day and low volume / high repetition weight lifting) and am convinced it has had a huge impact in only having one upper respiratory infection during that time period. Prior to starting this, I suffered from these infections on an almost bi-monthly basis since being diagnosed 4 years ago.

  • FingersCrossed said:

    I agree. A great column that hits home for me. I have always been an exerciser, but my smoldering diagnosis gave me just that extra bit of incentive. I hope the dopamine theory is true, but my first thought was similar to Vic's; why doesn't exercise prevent myeloma from developing in the first place?

    However, the research talks about inhibiting, not preventing, so it might be the case that regular, challenging exercise is crucial for maybe preventing smoldering myeloma from progressing to active multiple myeloma, or at least slows the rate of progression. For active multiple myeloma patients, maybe it prevents multiple myeloma from worsening, prolonging life to near-normal life expectancy.

    That said, I am exercising MUCH more regularly and more intensively than I did pre-diagnosis. I am 2 years out from my initial smoldering myeloma diagnosis and my labs from last week show no progression. In fact, my IgG and M-spike numbers are noticeably lower than they were at diagnosis.

    For the dopamine effect to work, I would suspect that the exercise has to be frequent (almost daily), and intensive enough to be challenging but not so intensive that it actually depresses our immune systems, as Eric mentions.

  • TerryH said:

    Thanks for the column, Andrew.

    For what it's worth, dopamine has a half life of just two minutes. That's one reason it's given as an intravenous drip when it's administered as a drug. If you gave it as a single injection, most of it would be out of the bloodstream within about 10 minutes.

    Given it's half life, any therapeutic effect exercise will have against myeloma as a result of dopamine generation will occur primarily during the exercise itself. So that argues in favor of extended, lower-intensity exercise rather than short, higher-intensity exercise. Extended exercise is probably better, as well, for building up the sort of endurance that may be helpful when someone with myeloma faces extended infections or other health challenges.

    Some people have mentioned forum discussions related to the topic of this column. Here is one that people may want to review. It's about the immune system impact of very intense exercise: "Impact of intense exercise on the immune system."

  • Nancy Shamanna said:

    Thanks, Andrew, for this interesting column. TerryH's comment about the half-life of dopamine is interesting also.

    Another type of chemicals produced more during exercise are the endorphin hormones. They react with receptors in the brain to have several beneficial side effects. These can include: reducing the perception of pain, boosting self-esteem, warding of anxiety and feelings of depression. Thus I know that exercising regularly has many good features. Exercising has certainly helped me to stay stronger than I otherwise might be, and to keep a mostly positive outlook throughout the last several years!

    Happy Thanksgiving to all in the U.S.!

  • Maureen Nuckols said:

    Dear Andrew, another thought provoking article. And the comments were just as interesting.

    I am a great proponent of exercise, even using the triathlon as a metaphor for my treatment. I envy your ability to maintain the schedule you have for high-intensity biking. I find that no matter what I do with exercise, I feel better after I do it. Right now I am training for a 10K running race. I have completed this for past 7 years and for the last 3 years, I have been the last one in. That's okay with me, I have a great weekend with my girl friends in Moab, Utah as another benefit.

    Sometimes our other companions with multiple myeloma cannot do as much because of side effects to drugs, or past fractures, or joint injuries. So I feel grateful that I can do what I can.

    Happy Thanksgiving to all who participate in this community of multiple myeloma fighters. I am thankful for you. Maureen

  • Matt Tenney said:

    Thought for a second or two you were contemplating if the dex was having a performance enhancing effect, and the ramifications of use in competition. There's a big stink in professional cycling right now regarding when corticosteroids cross the line from therapeutic use to being a performance enhancing drug.

    Great thoughts on the benefits of exercise, I'm with you 100 percent. Don't think I'd be able to cope without including physical activity, and am glad to hear that there's room for it during transplant recovery, which I should be getting in January.

  • Chad Snow said:

    Thanks for the article. I'm at Day +18 from my transplant and finding it hard to motivate myself to do any physical activity at all. If this doesn't give me motivation, I don't know what will!!!

  • Andrew (author) said:

    Chad--Best of luck to you. As you recover from your transplant just do what you can. Set small goals like walk around the house for 10 minutes two or three times a day and work up from there as you start to feel better.