Myeloma Rocket Scientist: Randomness In Multiple Myeloma
Randomness occurs in all aspects of life, but it sometimes seems to be particularly prevalent in multiple myeloma.
Several examples spring to mind. One is the wide variation between the behavior of the many different variants of myeloma. For no obvious reason apart from random chance, one person can have a variant that responds much better to treatment than does another.
Secondly, there is the question of the intensity of the side effects that are caused by treatment, in my case Revlimid (lenalidomide), dexamethasone (Decadron), and Biaxin (clarithromycin).
I have written in the past about the side effects of the steroid dexamethasone, listing how I feel on the days after taking my monthly dex. However, I have realized that these descriptions are only approximate; each cycle can actually be quite a bit different from the others. In some cases, for instance, the post-dex “low” is really hard to take; in others, it isn’t so bad. This phenomenon is at least partly related to what I’m doing at the time: if there is a crisis at work, or some other significant distraction, I can power through the side effects more easily than if I have too much time on my hands.
There are other variations too, although I can’t figure why these occur. For instance, on some cycles, I get so hungry a few days after the dex that it seems that I will never be full again. On my last cycle, I ended up having six quite large meals plus snacks in one day, which may be a record even for me. I had to stop at a restaurant for a meal after work, in order to have the energy to make it home for a large dinner. I felt like a Hobbit; they list their meals as breakfast, second breakfast, elevenses, lunch, tea, dinner, and supper. On other cycles, though, I don’t get much above my normal quota of three or four meals per day supplemented by significant snacking.
Some of the side effects that I get from Revlimid are quite predictable from one cycle to the next, but others are also, like the dex ones, strangely variable. None of these are anything like as intense as the effects of dex, but since I take Revlimid for three weeks at a time, as opposed to my one day of dex per cycle, they are more pervasive.
The predictable effects include such things as a mild rash that I get on the third day of each cycle. I take one antihistamine tablet and it goes away. (I did say that these side effects were minor!) Another predictable one is a slow, month-by-month decrease in platelet count, while yet another is the arthritic feeling I get in my hands; perhaps it is some sort of neuropathy. It could of course alternatively be due to old age, except that it seems to go away during my days off Revlimid.
The unpredictable side effects are the usual gastrointestinal ones and fatigue, which leads me to take more naps than I used to. I suppose that this could also be a sign of getting older, but I prefer to blame Revlimid. How hard this fatigue hits me is again significantly affected by whether I am busy or not. Keeping occupied certainly takes your mind off things.
One other aspect of myeloma randomness is that fact that it seems to strike people for no apparent reason. Given that no real risk factors have yet been identified, it certainly appears that it is, at least to a large extent, the result of some random mutation of a cell. Of course, myeloma is not unique in this regard. Many, if not most, cancers have at least a random component to them.
It is interesting how some people seem to have a real resistance to this idea. I once read about a medical study that attempted to quantify what fraction of various types of cancer might be due to this sort of random mutation. The results indicated that a substantial number of all cancer types (not cases, types) may be the result of randomness, or “bad luck.”
I was surprised at some of the online comments to this report. Many readers took exception, sometimes quite vehemently, to this conclusion. It seems to get back to the idea that, if you “look after yourself,” you will stay healthy. Myeloma soon disabuses you of this notion that you are “in control.” Obviously, it is better for many reasons to not smoke, eat sensibly, and exercise adequately. However, doing so is no guarantee that you will not get any particular disease.
It is true to say that a large population who live sensibly will on average be healthier than one that doesn’t, but any given individual will not necessarily be. And “living well” certainly does not work for preventing myeloma. I think I prefer things that way. I can’t blame myself that I got sick because of too many donuts or too much stress or anything like that. Sometimes, randomness can be rather comforting.
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
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I appreciate your column and wanted to comment that I lead (and still lead) a very healthy life-style. I exercised regularly since I was a young girl, having been a gymnast and aerobic instructor, to a biker, jogger, skier as an adult. I ate organic produce since 2005 and was never overweight and didn't abuse my body in any way. Myeloma, like most cancers, does not discriminate and we can't blame ourselves for our misfortune and we need to remind ourselves that we are not alone. Cancer grips the lives of so many.
Hi Trevor,
I have been on the Revlimid/dex track; Revlimid 15 mg daily and dex 20 mg weekly. I look forward to the dex, it gives me a boost, so I take it Saturday morning. It helps me with weekend social occasions. Originally, I was taking 40 mg of dex every Saturday but that blew me away.
I hope that you can get a better balance.
Stay strong,
Mike
Thanks for the article. As much as we'd like to think otherwise, it's impossible to "control" all variables, particularly when it comes to health. Randomness happens! I spent the first 6 years of my life in Chicago living across the street from The National Lead Company. Not my fault; not a nefarious plot on my parents'part. Given that my early environment was no doubt fairly toxic, like JBH, I've lived a healthy-lifestyle: healthy food, rest, exercise and good medical care. Regardless, I have multiple myeloma. I do remember my oncologist saying -- with confidence -- that my stem cell transplant should go well because I was in good shape going into it. He was right. So, doing the right stuff might not prevent the "randomness" that allows something like cancer to gain a foothold, but it will help you put up a good fight and return to health.
As my oncologist refers to me as her miracle patient in which I was diagnosed in 10/04 and so far Lady Luck has been on my side in this never ending battle with multiple myeloma. I was given possibly 5 years when first diagnosed and started with the ole thalidomide treatment for 6 years but then was switched over to Revlimid 3 x week, which keeps me in remission to this day besides the randomness effect or just old pitty pot syndrome.
Hello! What a great discussion. My oncologist calls me the "healthiest" cancer patient she has ever seen. I have no other health issues but this crazy creature. I read in these forums of all the different turnouts from the same drugs and procedures I have been through and I think there is still so much we do not know about this illness. I will be celebrating 5 years of remission in June, with the past year being free from any medications! The randomness is our "new normal"! LOL God Bless.
Hi,
I just started taking Revlimid maintenance 10 mg for 21 days with dex 10 mg once a week. I had an autologous stem cell transplant in March 2014 and I was in complete remission (CR) for 3 years. Unfortunately now it's creeping back.
I never smoked, I exercise, eat well, and I'm in good health (besides multiple myeloma). But many people that I know who have multiple myeloma are also healthy people with healthy habits. So you never know!
While it is true that there is not any direct causal connections between multiple myeloma and being exposed to chemical agents, there is indirect evidence that exposure to certain chemical agents and pesticides increases the risk of contracting not only multiple myeloma but other forms of cancer. Something "turns on" the body's reaction or overreaction to these agents, causing a cellular runaway that is cancer. Why that occurs in some people but not most is the great question that cannot be answered. It has nothing to do with leading a healthy lifestyle and may appear to be random, but there is an underlying cause, just not discovered yet.
Science is just scratching the surface of our genetic make up. I believe that something in our genetic make up makes us more susceptible to this runaway effect from such exposures. However, that is simply a theory at this point.
Your piece about randomness is so spot on. In May I suddenly went into neutropenia and ended up in the hospital with SIRS (systemic immune response syndrome) and pneumonia. Up until now I have tolerated most of the myeloma therapies, steroids, and a transplant, and stayed in pretty good health. At my monthly blood tests before getting sick, my neutrophils were low, but not much lower than they've sometimes been before. But this time I was flat on my back for six days in the hospital.
Thanks for listening to my little pity party. Hoping to do better from now on.
Just as an aside, I also have always eaten well, exercised, stayed away from poisons, etc. All these things are good things to do, but when multiple myeloma decides to strike you, it's just going to do it, and that's all.
Julia Munson
Hello,
What a important article for those of us who have the disease of multiple myeloma. One of the comments I related to is that I am a healthy cancer patient. Your observations take away any need to blame ourselves for this disease. Also, the Revlimid and dexamethasone report is right on. I do want to reassure you that the fatigue is real and cumulative with the Revlimid. It's not just aging.
I like others have officially outlived my 5 year prognosis and am at 6 years. Please keep writing.
Maureen
Aloha Trevor,
Excellent article! I wanted to sound off here with supporting evidence of myeloma and many cancers being random.
Unlike most of the people who have responded I am overweight, under exercised, and mostly see organic food as an unnecessary waste of money. I enjoy good food, good beer, good wine, and an occasional good cigar. I enjoy an active lifestyle because it is fun. Exercising is a means to an end for me - like to get ready for a ski trip. It is obvious to me that we need to "use it or lose it".
Keep all things in moderation (including healthy pursuits) and pursue a life of balance. Accepting myeloma as a part of my life instead of worrying about what I did wrong is as important to me as my treatment. We are all going to die of something; myeloma just happens to be our particular burden. This is randomness defined.
I don't mean to ruffle feathers about other folks beliefs. I just want it known that some people see things differently.
Thanks for opening an excellent discussion.
Aloha
Tom
You nailed it. I once had a friend tell me I gave myself cancer. I quickly realized that this friend, whom I thought an intelligent being, was a bit ... thick, to be blunt. Myeloma knows no rules, boundaries, etc., etc., etc.
As I have said before, it was no coincidence that my father, who died from leukemia, and myself, a current multiple myeloma patient, were both exposed to radiation. Even one of my oncologists recognizes that that was the probable cause of our cancers. But it also has to do with the genetics of a person. Both my mom and a sister were also exposed to the same radiation but did not get cancer. It has to do with our cells and how they react to something. No awesome diet was going to change this, so here I am today. I'm just grateful for research, for treatment, and hope that somehow a cure will be found. In the meantime, I hope that companies will realize the dangers of handling certain things and that it's not always a quick and cheap solution. It can cause serious issues down the road.
Thank you very much for all your comments.
JBH, Absolutely! You sound a lot fitter than I ever was, but I have always walked quite a bit and tried to eat moderately sensibly, so considered myself fairly “healthy”. But, as you said, myeloma does not discriminate.
Michael, I used to look forward to dex back when I first took it, in the period soon after diagnosis. I think I was so run-down then that the energy it gave me was quite welcome. I remember my oncologist back then saying at one of our meetings that most of his patients hated dex, and wondering why that was. Now I see their point!
My new Revlimid cycle is 3 weeks on/3 weeks off: I am nearly at the end of a period of 3 weeks off, and feel really “normal”. So long as my next blood test results turn out to be good, this isn’t too bad a regimen at all.
Linda, You’re right: we are not totally “in control”, but it’s good to stay in as decent shape as possible. I’m glad that your transplant went so well.
Greg, When you were diagnosed back in 2004, I had never even heard of myeloma: oh, happy days! Congratulations on everything going so well for you.
Janice, Congratulations on your fifth remission anniversary, as well as a year with no treatment! I had an extended treatment-free period, and hope to someday return to that. It’s definitely the ideal. And you’re absolutely right about there being a lot to learn about myeloma. I remember reading that it is really several different but related diseases, and wonder how many different ones it will actually turn out to be, and how many different treatments will be ideal for dealing with all of these.
Daria, Absolutely, you really never know. It’s so weird. Good luck with your Revlimid/dex treatment: mine has put all of my readings apart from the kappa light chains back into the “normal” ranges, so technically I’m back in complete remission. Of course, I preferred it when I was in complete remission and not having to take anything (during the years following my transplant), but this really isn’t so bad.
Ron, You make a really good point: it’s certainly possible that what appears to us to be purely “random” may in the future be understood, and so become predictable. But, as you say, any underlying cause definitely does not appear to be related to following a “healthy lifestyle”.
Julia, Absolutely: myeloma does what it chooses; we’re just along for the ride. I’ve never heard of SIRS before, but it certainly doesn’t sound like a lot of fun. I’m glad you’re through it now.
Maureen, It’s really good to hear from you again! Yes, I think it’s important that people don’t blame themselves for things like myeloma. I’m also relieved that you agree that my occasional fatigue is likely from the Revlimid, and not just because I’m getting older and older!
Tom, I really enjoyed your comments. Moderation in all things, including moderation, as the old saying goes. As far as exercise, I really like walking, but generally don’t go beyond that. I also try to eat reasonably healthily, but enjoy things like blue cheese, especially Stilton, that I’m sure are not at the top of the list of health foods. I think it’s sometimes more important to enjoy what you’re eating than to worry too much about fat, salt, etc., especially when you’re already dealing with something like myeloma.
Mike, Absolutely! People don’t always understand things like myeloma. Soon after diagnosis I had a neighbor ask me why I had got sick. I don’t think he was trying to blame me, but he definitely was looking for a simple explanation of what to do to avoid getting it himself: as if there is such a thing!
Susan, Your story of your father’s leukemia makes me think of my mother, who had lymphoma. Who knows if there is any possible connection between that and my myeloma: probably not, but it does rather make you wonder.
Good article on the randomness among myeloma patients. However, for myself, the Revlimid treatment which ran for 46 months, at 25 mg was very predictable. Like yourself, at the start of every cycle after the 7 day rest, an itchiness appeared behind my ears. This happened virtually every time. After the itchiness struck, I skipped a day of Revlimid, and that was fine according to the drug maker. I talked to them personally, and they agreed to the day break on appearance of itchiness. Then the rest of the 21 day cycle was uneventful.
However the benefits of Revlimid have ceased, and I have switched to pomalidomide (Pomalyst). Guess what? After 3 days, itchiness appeared. Same routine, skip a day, itchiness subsides, and 21-day cycle presses on. Haven't seen the M-protein results yet. That happens at end of the cycle.
Being an engineer, which is a genetic condition, I plot all my blood data, compute max, mins, rate of change, long-term averages etc. I have over 6 years of week-to-week and month-to-month data. In fact, the blood results are very predictable. In fact I can predict red cells, neutriphils, hemoglobin, platelets, total protein, M-protein pretty accurately, before each new blood test. So randomness from other multiple myeloma patients is true, but my system does not show significant randomness. In fact, my system is pretty predictable.
Thanks for the great article, your reaction to Revlimid, seemed almost identical to mine. Let us know how long you are on Revlimid.
Take care and thanks for sharing.
Hi Trevor, I mulled over your topic of 'randomness', especially the idea that there isn't really a reason why some people would get myeloma and others not, having been exposed to the same risk factors. I think that there are lifestyle risk factors associated with most cancers that we can manage, so of course one does try to live a healthy lifestyle. However, if there are environmental factors beyond our control, such as exposure to known carcinogens, I think it is possible that myeloma could develop that way. There has been acknowledgement of that in the case of some people exposed to carcinogens through their work, such as firefighters and also military people.
Trevor, as the article you mentioned says, it is likely that developing cancer is somewhat random, and that trying to find a preventive treatment might be a rabbit-hole....and that the focus should probably be on early detection and keeping it from advancing. I think it is likely just part of the human condition that keeps us from living forever. I remember when I first got multiple myeloma, I was asked if I was a farmer or had been exposed to chemicals in any significant way. Nope to both. Several years ago, it was suggested that drinking diet colas can lead to multiple myeloma. That was debunked not long afterward. For some, exposure to carcinogens leads to cancer, but for many, it does not. I think that leading a healthful lifestyle is as helpful in helping fight cancer as in preventing it. IMHO.
Trevor, Randomness is probably the right word, but in this world today there are so, so many environmental factors that the randomness is describing a larger number of the population.
In my case, I was diagnosed just last April 2017 and am currently in the initial treatment cycle leading up to a planned stem cell transplant.
My background is military and civil service, I served on aircraft carriers and ate lunch above Reactor 2 aboard a Nimitz class carrier for 4 of those years. After that I was a customs inspector on the southern border and at a seaport on the east coast. I have been exposed to so many possible carcinogens in those jobs, from powerful radar systems and mysterious contamination on goods being inspected upon importation, that a diagnosis of cancer was very likely to be a "random" event in my life.
Otherwise I have led a healthy life, no smoking, minimal drinking once I got past my first enlistment in the Navy, an avid cyclist, runner, and triathlete in my late 40s until my recent diagnosis at the age of 56. That lifestyle is helping a lot, and my oncologist is very positive about how it gives me a better chance at a long survival over less healthy lifestyles that he sees a lot of. That randomness is intentional, and my experience as an "Ironman" athlete, having several 70.3 and one 140.6 event, gives me a good outlook on what the long-haul survival of this disease will be like. Pain, suffering, mixed in with victories, the joy that comes from competing well, sounds a lot like living with multiple myeloma, its all about the journey.
We must not confuse carcinogens with the awareness of the danger of cancer or the diagnosis of it that is now possible. We live in what is probably the most healthy environment in human history. Think of the life-threatening pollutants of the 19th century's industrial revolution; prior centuries' issues with chamber pots dumped into the streets; rats, mosquitoes and other pests; polluted water, making only beer and wine safe to drink; mercury and lead and arsenic poisoning; lack of hygiene; ignorance of food safety; etc. Thanks to science developed over generations, we live in the safest environment in human history, but disease persists, despite lessons learned from centuries past. Egyptians died from cancer 3000 years ago, long before plastics and sugar substitutes and nuclear energy and car emissions. One cannot eat nor exercise nor avoid life enough to be guaranteed a life free of cancer, heart disease ... whatever, though it would be great if one could.
Trevor, thank you for describing in such detail the effects of these drugs. It's so helpful to know what to expect, whether you're a patient new to treatment or a caregiver anticipating your loved one's needs. On the bright side, enjoy eating like a Hobbit on those dex days! Most people don't get away with that kind of thing! I say, eat lots of pie and enjoy every bite!
It is comfortable to know I am dancing with luck. In all aspects of life. My myeloma, diagnosed in June 2016, comes from nowhere: no family record, healthy life etc. Just a random mutation. I accept it plenty because I am a statistician and I know life is a highly improbable event. And death is a 100% probability event. No guilt, no fear, no rage, just acceptance of the universal law of randomness.
Wishing everybody luck and acceptance.
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