You Are In Charge
Published: Mar 30, 2014 5:14 pm
I am going to tell you something you have probably heard before, but which you may not have fully internalized.
You are in charge of your disease.
Absent mental defect or court order, you simply cannot delegate decisions about your care to anyone else; not a medical professional, not a spouse, not a friend, not a parent.
If you are going to live with multiple myeloma, you have to own the disease. You must educate yourself about it, and you have to make decisions about your care that, while either right or wrong in the moment, you will not regret later in life.
To illustrate what I mean, I’m going to share an example from my own experience, with the advantage of 20/20 hindsight.
In the autumn of 2012 I had just completed six cycles of induction therapy with Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) (RVD). I had reached a point where I had to decide whether I wanted to proceed with the stem cell transplant that was scheduled for November 2012.
My M-spike (monoclonal protein) level had dropped with the RVD treatment from 8.5 at diagnosis in May of 2012 (I was 60 years old at the time) to 0.4 in October 2012. My kidney function had improved from nearly-on-dialysis to normal.
Everyone around me – medical professionals, family, and friends – was urging me to go ahead with the stem cell transplant right away. I didn’t want to. Frankly, I was afraid of the stem cell transplant. I also had gathered enough information to know (or thought I knew) that, without achieving a complete response, a transplant can be an iffy proposition, even with the very good partial response that I had achieved.
But I bowed to the pressure. My “tough guy” pride in overcoming fear, and my rationalization that I was the one with chemo brain (everyone else was thinking straight), led me to go ahead with the transplant. They couldn’t all be wrong, could they?
In the end, I mostly relied on an at-the-time recently published study that said that six cycles of RVD was the “standard of care” prior to stem cell transplantation. Guess who conducted that study? A transplant doctor. Not to disparage her, but looking back on it, I now realize, in a way that I didn’t then, that the study was clinical research – the conclusion was the result of an analysis of aggregates and averages.
Yet one of the very first things one learns about multiple myeloma is that it is an intensely individual disease. So who’s to say that any individual should stop at six (or four, or seven) cycles of initial RVD prior to transplant? If one continues to respond to the initial therapy after diagnosis, why not continue it in pursuit of a complete response and only then seal the deal with a stem cell transplant?
Now, for the hindsight 20/20 part: After six months of pure hell, the transplant did nothing to change my M-spike. Going in, my M-spike was 0.4. One month afterward, it was 0.5. At my 100-day checkup, it was 0.7. One month after that, it was at 0.9, and I went back on RVD.
So, in the end, I sacrificed a Thanksgiving, a Christmas, and a Florida snowbird winter to prepare for and recover from a transplant which, as best I can tell, didn’t really do anything for me.
The doctors will say, “Well, where would you be had you not done the transplant?” But somehow, just listening to my body and poring over the blood test results over time, I’m becoming more and more convinced that I should have exhausted drug therapy prior to the transplant in an effort to get to a complete response before submitting myself to this incredibly invasive procedure.
Make no mistake, stem cell transplantation is a living hell. I thought the Army had been tough, both mentally and physically. Yet nothing I had done earlier in life prepared me for the agony of not being able to even swallow water. I have never been so low on Maslow’s Hierarchy. Nothing prepared me for the shingles that were brought on because the transplant left my immune system compromised. Nothing prepared me for the acceleration of chemo brain that the transplant brought on. Do not minimize chemo brain -- it is real, and it is frightening.
After five cycles of RVD post transplant, my M-spike had once again dropped from 0.9 to 0.5, but it stagnated there. So I tried Kyprolis (carfilzomib), along with Revlimid and dex. While one cycle did bring me down to 0.4, I developed liver problems that the doctors attributed to the Kyprolis.
So I’ve now switched to Pomalyst (pomalidomide, Imnovid) plus dex. Results are yet to be seen.
In the meantime, I continue to wonder if RVD could have been even more effective had I kept taking it for more than six cycles prior to the transplant, instead of having the transplant immediately after six cycles and then staying off RVD for five months. Could I have saved Kyprolis and Pomalyst for later years?
To use a tortured boxing analogy, it feels to me like I had my myeloma on the canvas in the third round and was about to go for a knockout. Instead, I gave it a breather while I got out of the ring and, for two rounds, took a horrible beating from a much bigger sumo wrestler. Then, I got back in the ring with myeloma, but by then I was weakened and it had time to recover.
Overall, I eventually had 11 cycles of RVD, pre- and post-transplant. It was effective in lowering my M-spike levels through at least nine of them. I now just wish I had had them all prior to the transplant. I tolerated RVD relatively well, except for neuropathy in my feet. But, by working with my doctors to adjust the Velcade dosage, the neuropathy was minimized, and it is almost gone now that I have been completely off Velcade for four months or so.
I have now exhausted all the traditional drug therapy “bullets in the chamber.” RVD has stopped working. Kyprolis apparently isn’t an option for me due to what it does to my liver, and I have yet to see what Pomalyst will do for me and for how long. If Pomalyst fails as well, I will have to go the clinical trial route and perhaps try a monoclonal antibody.
I suppose I could have another transplant, since I collected enough stem cells prior to the first one for another. But what’s to say that those cells, which were collected when my M-spike was at 0.4, will do anything better for me than the original set did -- especially with my persisting M-spike levels? And do I really want to sacrifice yet another six months of what life I have left on the off chance of it working?
Make no mistake – I am not here to blindly denounce stem cell transplants of whatever kind. They can have a legitimate place in our treatment.
It is just that I now keep asking myself why there was such a hurry to do a transplant. I was “only” 60 years old at diagnosis. Yes, health can fail as time passes, but, other than the myeloma, the now-resolved shingles, and the scary kidney condition, I was (and am now) in relatively good health. Why did I give up six of the best remaining months of my life to go through that hell so soon?
Now, especially late at night, when the dex is keeping me up and the house is quiet, I keep thinking, over and over, that my best chance of reaching a complete response right after diagnosis was RVD. And that, if RVD was working - meaning that M-spike levels were going down, down, down (and not stagnating) - why not just let it continue to work before submitting myself to a transplant?
After all, we’re not talking about years here, but months. Eventually, the RVD will either get you to a complete response, or you will see it quit working with stagnated M-spike numbers. That’s when you know it’s taken you as far as it can.
My bottom line for you is the following: You make the decisions about your life. There is never going to be another time in your life when it will be more appropriate for you to be completely selfish and make these decisions completely on your own after gathering all the information you can from as many sources as you can. And only you can judge what information and opinions are, or are not, trustworthy. Don’t worry about offending anyone – no matter who they are – who is telling you what to do if you decide to do something different.
If your spouse wants to control the decision, divorce him or her. If your parents tell you that they are taking you out of the will if you don’t follow their advice, tell them you are going to die before they do anyway and to stuff it. If the transplant doctor tells you it is urgent, just remember that they do transplants for a living and that they are all as human as anyone else – if all one has is a hammer, everything looks like a nail. Be true to yourself.
I wasn’t. And I’m paying for it today. I can’t look in the mirror and say I did everything I could to exhaust every option I had prior to stem cell transplantation. And I wish to all that is holy today that I had.
A footnote: This essay was originally posted, in minorly different form, to The Myeloma Beacon as a comment to one of Steve Mohr’s excellent columns about his experience with multiple myeloma. I highly recommend you follow the well-written chronicle of his journey.
This is a guest patient opinion article by Paul Jakubowski. Paul was diagnosed with multiple myeloma in May 2012 at the age of 60. He is currently in very good partial remission and continues to receive maintenance treatment. He and his wife split time between homes in Nebraska and Florida, which demands some unique approaches to ongoing care.
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