Myeloma Rocket Scientist: Predictions Are Tough
The philosopher sportsman Yogi Berra once said: “It's tough to make predictions, especially about the future.”
Of course, Berra also is quoted as saying “I never said most of the things I said,” so perhaps the quote about predictions is only apocryphal. It is, however, one of his most famous sayings, alongside “It’s like déjà vu all over again” and “When you come to a fork in the road, take it.”
I would agree that it is certainly tough to make predictions when it comes to multiple myeloma, specifically concerning future developments in treatment options and how any individual’s disease will progress.
A tendency when making predictions is to assume that the progress of the past will continue steadily into the future. This assumption can be problematic, though, when the data set for the past is short compared with the future timespan of interest.
As a somewhat silly example, we used to measure our sons’ heights every year. After one of them had been through a growing spurt for a few years, we drew a graph of his height against time, and I asked him how tall it showed that he would be when he was 30. Drawing a straight line through the last few years’ numbers gave some ridiculous answer like 10 feet (3 meters), exposing the dangers of linear extrapolation from limited data.
A consequence of the tendency described above is the fact observed by many people, exemplified by this quote from Neil Armstrong: “Science has not yet mastered prophecy. We predict too much for the next year and yet far too little for the next ten.”
Progress seems in reality to be closer to exponential than to linear: slow to start, but then increasing in speed. This is due to the fact that new developments may take a while to appear, but once they do, subsequent ones can build on them rapidly.
An obvious example of exponential progress arises in computers, where the well-known Moore’s Law states that computing capacity doubles approximately every two years. It is this growth that has led to a modern smartphone being able to calculate millions of times faster than the mainframes that were used in Mission Control for Apollo.
Fortunately for us, a similar exponential growth is evident in medicine. Part of this growth is driven by the improvements in computers, which has led to systems powerful enough to simulate the details of molecular reactions and image them in three dimensions. By contrast, the discovery of the DNA double helix in 1953 was made using a crude physical model made from metal plates and rods. The resulting increased insight into biological processes allows new drugs to be developed more systematically and less by sheer trial and error.
The great advances in treatments have also in part been obtained by building on previous ones, either by developing an improved version of an existing drug, or obtaining improved results by using existing medications in combination.
These approaches are particularly striking in myeloma. For instance, Revlimid (lenalidomide) is a derivative of thalidomide (Thalomid) with reduced side effects. Notably, Revlimid is associated with less neuropathy, and both of these treatments work better in combination with dexamethasone (Decadron). In addition, three new multiple myeloma drugs were approved within three weeks in 2015, which is certainly impressive.
What originally prompted me to write this column is related to the increased median overall survival time that has arisen from these great improvements in treatment. When I was diagnosed back 11 years ago, everything that I read said that the median overall survival was three years. The rapidly improving treatment options mean that this number was probably out of date even then, and without any doubt is today.
However, extrapolating from my then very meager knowledge of multiple myeloma (and statistics, come to that), combined with the fact that our boys were then only 12 and 9 years old, I was fairly certain that I would not see either of them graduate from high school. However, last month we attended the college graduation of our elder son. I’m very glad that my prediction was so inaccurate! The way I am feeling now, I assume that I will still be able to go to his graduation from graduate school, plus see our younger son graduate from college as well.
Another aspect of myeloma that makes prediction so difficult is the fact that changes can occur fairly quickly, and perhaps be reversed equally quickly by adjusting treatment. As a result, the danger of extrapolating too far into the future from a limited set of data exists in this scenario as well. For instance, since I have been doing well with Revlimid, dexamethasone, and Biaxin (clarithromycin) for over three years now – apart from my complaints about side effects – it is very hard for me to remember that this state will not necessarily continue indefinitely. I know it intellectually, but I do tend to forget.
Conversely, a few months after I started Revlimid, my myeloma numbers started to increase unpleasantly. My kappa free light chain and IgA readings increased, and I even had an M-spike for the first time in seven years. It was an extremely disconcerting time for me, and my extrapolation, based on perhaps six months of data, was that things were going to continue to get progressively worse. However, adding the dex and Biaxin brought things under control; my extrapolation was fortunately proven to be inaccurate.
It is a difficult-to-accept fact of multiple myeloma that some surprise, pleasant or not so, may always be in store or just around the corner. It can definitely be a challenge to retain your equanimity in the face of this lack of predictability.
To modify a Yogi-ism that was originally written about baseball: dealing with myeloma is “90 percent mental, and the other half is physical.”
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Great column and great to hear you are beating your own forecasts from 11 years ago. I was diagnosed this year at age 46. I'd be happy if I did as well as you.
Great column, Trevor, on so many levels. I love your take on things, made me smile, and even laugh at myself for the way I study my every test result when it comes in. As if I could figure out a trend or my future!
Good article, well written. I appreciate your philosophical meanderings. Eleven years is encouraging!
Hi, Trevor,
I enjoyed your column this morning. Your insights on prediction, especially about multiple myeloma, are helpful, indeed. It was also so inspirational, really, to know you've had this disease for 11+ years. There is hope, for sure. Thanks for writing and thanks for the reminders from Yogi, too.
Thanking you for column, dear Trevor.
Here is 100% same story. Got investigation in 2006 November by fracture of two vertebrae, D12 and D11, by a sudden enormous sneeze. I was having two sons, elder one was of 13 years, and younger one was of 9. Got all treatment as you have, autologous stem cell transplant in 2007 (May and June). Relapsed in 2011, got started again high treatment in 2012, by August till now under treatment of lenalidomide 10 mg following by dexamethasone 20 mg per week, 80 mg a month.
This is disturbing. My vertebrae are again getting fractures as another 3rd one in 2015, one more 2017, one rib in 2016. I was got investigation at third stage with 42% M proteins and 3.26 M-spike.
My elder son got B. Tech along with MBA, younger one completed B.sc botany, supposed to continue with Masters in forests management.
Wonderful column Trevor. You raise a very interesting point regarding predictions, especially as they pertain to multiple myeloma. We are only 3 years into our myeloma journey, so your 11 years seems incredible. From what we have read and learned from others is that each individual with multiple myeloma is unbelievably different. From diagnoses to symptoms to side effects –everyone has a different story, which really makes predictions difficult. Thanks for sharing your story.
Thanks for the column focusing on science and statistics, Trevor! Congratulations to your family on the graduation of your elder son from college! Yes, one cannot extrapolate indefinitely from some increasing data, or downwards. I always check my lab blood tests and worry if there is an upward change in the kappa/lambda ratio or the M-spike. The surprising finding to me was that since I stopped taking Revlimid plus dex last September, not much has changed. I hope that trend continues for awhile yet too, although I can't really expect it to do that. Have a nice summer!
Greg, I thought I was young (51) at diagnosis, but you beat me! It is a real pain to have to start dealing with myeloma relatively young, of course, but on the other hand being younger presumably makes you a bit more resilient. Good luck to you.
Rebecca, Thanks very much. I tend to over-analyze my test results too, which I think comes of being an engineer. I know that a lot of times changes are just blips, not trends, but it’s not always easy to remember this!
John, Thanks! And “meanderings” is definitely the right word!
Sylvia, I really appreciate your comments. As for Yogi, I like his approach to dieting too: “You better cut the pizza in four pieces because I’m not hungry enough to eat six.”
Lakhbir, You’re right, our stories are very similar, except that I have been fortunate enough not to have any fractures caused by myeloma. I hope that all goes well for you, perhaps with a new treatment. It’s good that there are so many available these days. Also, congratulations to your sons! You must be very proud of them.
Patty, Thanks. Yes, the range of experiences is pretty stunning. I keep remembering reading somewhere that myeloma is really something like ten different diseases: maybe someday they’ll understand them all enough to be able to make good predictions for individual cases, but it doesn’t seem possible yet!
Nancy, Good to hear from you! That’s really interesting about your not seeing much of a change after stopping Revlimid/dex for getting on for a year. I have recently been very tempted to stop taking them for at least a cycle, to see what it’s like to be without the various side effects again. I haven’t dared to do it yet, but my current cycle of 3 weeks on Rev, 3 weeks off is pretty close to having a long time not taking it, I guess. Have a good summer too!
I really enjoyed this column, Trevor. It is great to get a perspective different from mine, but helps me understand something I struggle with. I'm not really a numbers person and statistics, medians, predictions always get me. This has been really true since my diagnosis. I intellectually want to give weight to science and statistics, but obviously, you always want to be the patient the "beats the numbers." Your great explanation and insight really helps me approach this struggle better.
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