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Myeloma Rocket Scientist: Randomness In Multiple Myeloma
By: Trevor Williams; Published: May 25, 2017 @ 1:32 pm | Comments Disabled
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 [1].
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