Myeloma Rocket Scientist: A Man With Two Watches
Some of my experiences at work lately have reminded me of certain aspects of life as a multiple myeloma survivor. In both cases, decisions that can have major repercussions must be made, sometimes on short notice, based on information that is at best sketchy, and at worst contradictory or misleading. While the details of the two cases are totally different, the same sort of conundrum arises in both cases.
In multiple myeloma, a key decision that many patients face periodically is whether to continue with their current treatment or make some sort of change. The change may be to try a totally different treatment, or modifying the dose or frequency of their existing medication(s). The motivation for this change can be to increase efficacy of the treatment against the disease, or conversely to reduce its side effects.
I am dealing with a minor form of this decision at the moment. I have been taking Revlimid (lenalidomide) and the steroid dexamethasone (Decadron) since 2014, ever since my IgA and kappa light chain numbers became too high for comfort. My oncologist and I tweaked my dosages and eventually came up with quite a good balance between myeloma control and side effects. I take 10 mg Revlimid on a cycle of three weeks on, one week off, plus 40 mg of dexamethasone once every four weeks.
As a result of this treatment, my numbers are now very stable. However, the side effects can still be somewhat annoying, particularly after such a long period on the treatment. Most everyone reading this will be familiar with the side effects of dex. Those of Revlimid are nowhere near as intense, but they occur more of the time. Since I am rather tired of these side effects, at the last meeting with my oncologist I asked if we could possibly try reducing my treatment. He suggested taking two weeks off, rather than the more usual one, after each three weeks of Revlimid.
This change in frequency does seem to have improved the side effects somewhat. I will find out at our next meeting in a few weeks what it has done to my multiple myeloma numbers. If things still look good, we might then also reduce the dex dose.
It is really only after the fact that a patient can know if their decision was a good one, and even then, it can still be debatable. Obviously, “safety first” is an important factor. Bad though it is to undergo a treatment with unpleasant side effects, it is far worse to under-treat if it allows a relapse of the multiple myeloma. But, if excessively severe treatment were used, it could unnecessarily reduce the quality of life of the patient.
It is a difficult balance, and must often be made based on partial or contradictory information. For instance, readings such as M-spikes, levels of proteins, light chains, and heavy light chains almost never change in lockstep. One lab result may trend healthily downward or hold steady while another starts to increase. In such circumstances, it is difficult to be certain that any given decision on treatment options is the “right” answer.
At work recently, we have had to deal with a problem that reminds me of these treatment decisions. There are just so many objects in orbit these days that may collide with spacecraft. As well as active spacecraft, there are also defunct ones, old rocket stages, fragments of exploded rockets, and even nuts, bolts, and flakes of paint. (Yes, something as seemingly harmless as paint can be serious if it hits your satellite at many miles per second!)
My project is particularly sensitive to the collision question as we are flying four spacecraft in a formation that we recently reduced to only four miles across. We consequently have to make sure that we not only don’t hit some other object in space, but also don’t run two of our satellites into each other.
Spacecraft operators as a result always have be ready to “maneuver” their spacecraft, or fire their small rocket thrusters to push them to safety, if tracking data reveals the risk of an impact. It is a major disruption to do maneuvers, using precious fuel, requiring staff to come in (typically in the middle of the night!), and so on.
What makes the decision of whether or not to maneuver particularly difficult, and reminds me of the multiple myeloma situation, is that maneuvers require a lot of planning, and so the decision to do them must be made far ahead of time. Since this point in time is long before the spacecraft are actually close to each other, the decision must be made based on imperfect data: predictions of how close the satellites will come to each other sometime in the future. To make matters worse, the data from one prediction computer program will generally not be in perfect agreement with that produced by another. This disconnect in predictions makes it very hard to figure out which results to trust.
It is really only long after the fact that we know if our decision was a good one, and even then, it can still be debatable. Obviously, “safety first” is an important factor. Bad though it is to perform a maneuver that turns out to have been unnecessary, it is far worse not to maneuver and then have a collision. But, if a satellite ended up maneuvering all the time, it would basically not have any time to do anything else. If a space mission can be said to have a quality of life, it would be severely impaired.
Both the spacecraft and myeloma cases remind me of the well-known proverb “A man with one watch always knows the time. A man with two watches is never sure.” Of course, the proverb is somewhat tongue-in-cheek, as more data is almost always better. However, it doesn’t always feel like it!
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 .
Aloha Trevor,
Glad to hear that your disease is being held in check by the drugs. I am in the same boat with the same schedule and amount of Revlimid. I call it mowing the weeds. If we don't keep them mowed, they will take over.
One difference that I have though is the steroid methylprednisolone instead of the dex. I take 8 mg of this steroid every other day instead of the big dose of dex once a week or once a month. I hated the dex effects and find that I don't even notice the methylprednisolone effects. You might want to ask your doctor about it.
Good luck with your health and those awesome rocket ships!
Aloha
Tom
Thanks Trevor for the interesting column, and for giving us an insight into the world of NASA. Let us hope that we don't get hit by any metaphorical paint chips!
Nothing is forever in the world of myeloma treatments it seems, and just when you think you may be on a constant trajectory for the foreseeable future, you may need to change course. That certainly happened to me this autumn, and I have been off of the Revlimid/dex regimen since the beginning of September. We will be discussing what to do next soon, in terms of myeloma treatment. I was surprised that even after being off the treatments, my 'M' counts continued to go down further for a while! If only it would stay that way, but you can't know with this challenging disease. Best wishes to you and your family for finding a good balance with future treatments!
Dear Trevor, what a thoughtful column. After almost 5 years on the Revlimid/dex regimen, I empathize about the side effects. I found them to be a huge impact on my quality of life and would negotiate breaks regularly. I believe the comparison to the rocket ships has some relevance but the comparison is not perfect. You are talking about your life, and even more limited data than you have in the planning of flights. I believe that Nancy addresses how our "trajectory" can change unexpectedly. My last relapse taught me that. Sometimes you will have to decide what time it is without a watch. Take care and please keep writing. Maureen
Trevor, You stated that "a key decision that most patients face is whether to continue their current treatment or make some sort of change. The change may be to try a totally different treatment, or modifying the dose or frequency of their existing medications.The motivation for this change is to increase efficacy of the treatment against the disease, or conversely to reduce its side effects."
To broaden that thought, it is impossible to know if the treatment is working as maybe the M-spike and light chains would be the same without treatment or different dose or frequency. Secondly, because the myeloma numbers are increasing doesn't mean you are having any CRAB features. It is possible to have a serologic relaps but not a clinical one.
And back to your basic question "is the treatment doing more harm than good." Certainly there are many trials attempting to sort this out. But as we know, everyone in the trials responds differently. So what are we to do?
We are each a trial of one. It's not rocket science; that's much easier.
Good luck,
Don Hoke
Nice column, Trevor. I think you've got an apt analogy there. Two cases where you need to make very important decisions with imperfect data.
I also liked Don's point that "We are each a trial of one." And to that I would add - a trial of one without a control condition. You never can be entirely sure what would have happened if you had taken the other treatment path. There are no "Do Overs" in multiple myeloma.
Finally, your two watch proverb reminds me of the time (no pun intended!) years ago when I was watching a Chicago White Sox baseball game at the old Comiskey Park in Chicago. There was a clock along the left field line and another one along the right field line, both serving as advertisements for a name-brand watch. And the two clocks told times that were off from each other by about 5 minutes. Not such a great ad after all!
Best of luck to you in continuing the balancing act.
Mike
Dear Trevor,
I enjoyed reading your column. I can really empathise with the Revlimid side effects issue. I find that sometimes the side effects really start to annoy me and I long for a break from them. At other times they seem not so bad ,and I cope with them pretty well. I can't decide whether the effects really change or it is just my mood and attitude which varies. Perhaps it is a bit of both!
I really hope things remain stable for you and that you can enjoy the dose reductions.
Best wishes,
Marjorie
Tom - Very interesting about the methylprednisolone. I have never heard of it; I presume it is related to prednisone? I will ask my oncologist about it at our next meeting in a couple weeks. Any prospect of getting rid of dex sounds really tempting! I also like your mention of ”mowing the weeds”: I really dislike dandelions because their determination to take over the lawn reminds me of how myeloma behaves.
Nancy - I have been sorry to read what you have been going through lately. I’m glad that your numbers kept going down even while on a drug “holiday”: it’s weird, but in a good way! You’re absolutely right: just when you think you know what’s going on with myeloma, things change on you. I find that even with side effects: just when I think I can predict them exactly, the next cycle is completely different.
Maureen - I am really glad that you are doing so well on your new treatment! That’s brilliant. And I absolutely agree that the parallels between myeloma and spacecraft are not at all exact: myeloma is life-and-death, and satellites aren’t.
Finally, happy Thanksgiving to everyone!
Hi Trevor - I like your analogy of maneuvering satellites and negotiating treatment of multiple myeloma. You are very fortunate to be able to reduce your maintenance chemotherapy and keeping your myeloma in check. I pray you are able to continue to do that. You are so right about making treatment decisions with minimal information. Since each multiple myeloma patient is unique, treatment regimens have to be tailored to an individual. That is not as easy as it sounds. What works for one patient might not work for another. Like you, my husband takes Revlimid and dexamethasone, but he also receives Empliciti (elotuzumab) each month. Making the decision to try Empliciti was not easy. There was not a lot of information on its use other than in several clinical trials. He has been on it almost a year and so far his side effects are no different than the Revlimid and dex alone. His experience provides a data point for the researchers that may benefit another myeloma patient in the future. Thanks for your contributions to the Beacon and good luck with your reduced dosage.
Don – The idea that we are each a trial of one is, I believe, exactly right. That’s one of the problems with applying statistical methods too readily to this sort of thing: they give insight into what will happen in a large population, but not what any given individual will experience. Also, you’re absolutely correct about rocket science being much simpler than medical questions! We tend to think of orbits as being complicated because the governing equations can be difficult to solve. But at least there ARE equations that describe everything completely. Medical problems don’t have such a luxury, being orders of magnitude more complex.
Mike – You’re so right: there is never the possibility of a control! You can never really know how things would have been on the treatment path not traveled.
Marjorie – Thanks very much. Yesterday I got the first set of test results after adding the week off between Revlimid cycles. My two key numbers (IgA and kappa light chains) were stable, even decreasing a little bit: so far so good. I agree with you that side effects are really strange: just when I get overly confident that I can predict them exactly, the next cycle turns out completely different. For instance, the Revlimid ones have often been better now that I have more time off in between cycles, but sometimes not. Strangely, one of the times when the side effects were really good was immediately before we added the extra week off: I have no idea why!
Patty – Thanks. You’re right, I do feel very fortunate with the way that my myeloma has been going so far. It’s such a variable disease (or, as I have read, maybe 10 different diseases) that you never know. I’m glad that your husband is doing well on the treatment including Empliciti: I don’t know much about this drug, but will try to learn something about it, just in case. The thought that he is blazing a trail for others must be an encouragement for your husband!
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