Mohr’s Myeloma Musings: Change Of Game Plan
During my 25-year career as a boy’s head basketball coach, I found the most satisfying (and most important) part of coaching was planning and devising game plans.
Putting my knowledge and experience to test to give my teams the best chance of winning was challenging and time consuming, but also enjoyable and exciting. Equally enjoyable and exciting was making adjustments to the game plan during the course of the game.
At times the game plan worked to perfection. Sometimes, the plan had to be adjusted immediately. With my better teams, the game plans varied little from game to game, as the focus was on doing what we did best. We made the opponent adjust to what we did rather than adjusting to them.
When devising a game plan, I always consulted with my assistant coaches and especially with my players to make sure they were comfortable with the game plan we were going to use.
Treating multiple myeloma is similar to devising a game plan for an athletic contest. Oncologists use their knowledge and experience to devise treatment plans. They use the talents of their medical team to assist them and constantly communicate with their patients about how they feel about the treatment plan. More importantly, they closely monitor how effective the treatment plan is in controlling the multiple myeloma.
Like game plans, treatment plans may work to perfection from the outset. Sometimes only minor adjustments are needed. In some cases, the entire treatment plan needs to be scrapped and a new one put into place.
In my case, the game plan my doctor put into place has essentially worked to perfection. From the initial “watch and wait” period, through induction therapy, an autologous stem cell transplant, and maintenance therapy, very few adjustments have been made. A reduction in my dexamethasone (Decadron) dosage during my induction therapy is the only real change that has been made.
Despite the great game planning by my doctor, we have decided to make a significant change in my treatment regimen, as I have decided to stop my maintenance therapy.
I made this suggestion to my oncologist because of quality of life issues – including severe diarrhea, occasional bouts of fatigue, and moderate neuropathy – which have seemed to worsen over time. Welchol (colesevelam) has controlled the diarrhea, but it always leads to constipation, which, in my case, is far more uncomfortable than diarrhea.
These quality of life issues raised the classic question for me whether the treatment was actually worse than the disease. Routine laboratory tests to monitor my multiple myeloma – the serum protein electrophoresis (SPEP) test, the serum free light chain test, and the serum immunofixation electrophoresis (IFE) test – have consistently shown my myeloma numbers to be in the normal range since my stem cell transplant. If such is the case, I've asked myself, why suffer from Revlimid side effects when the disease is under control?
My doctor suggested minimal residual disease (MRD) testing to determine how many multiple myeloma cells remained in my bone marrow. MRD testing is done by counting myeloma cells in a sample of the bone marrow aspirate. It uses one of several methods that are far more sensitive than the routine blood tests for multiple myeloma. The tests can detect even one myeloma cell in one million total cells.
For patients who have achieved a complete response (CR) or stringent complete response (sCR) during their treatment, MRD testing can provide more information about exactly how effective the patient's therapy was. A patient who tests MRD negative has gotten a very deep response to treatment, and very deep responses often lead to long remissions.
I agreed to have MRD testing done. A bone marrow biopsy was performed that day. Like the three previous bone marrow biopsies I have had, it was uneventful. I experience more pain at a dental visit than I have ever felt in any of my bone marrow biopsies.
I knew the results of the test were not what I had hoped for when my phone rang at dinner one evening, and the identified caller was my oncologist. My experience has been that good test results come from physician assistants at my cancer center, and that bad test results come from my oncologist.
After delivering the news that I was MRD positive, which means that myeloma cells could still be detected in my bone marrow, we discussed what course of action to pursue. One school of thought among myeloma specialists is to continue maintenance treatment when results are MRD positive.
I decided against this approach and chose to stay off treatment until my myeloma numbers rise above the normal range and there is evidence of an M-spike. What I really appreciated about making this decision was that my doctor listened quietly to my reasoning behind this change in game plan, respected my reasoning, and supported my decision. This was comforting because he had previously told me he would never allow me to make any dumb or bad decisions about treating my disease.
Time will tell whether this change in our game plan was a good adjustment. In early March, I will have new blood work done, and it will be interesting to see what happens with my myeloma numbers.
Until then I'm going to continue enjoy near normal "gastrointestinal function," no bouts of fatigue, and tolerable neuropathy.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. 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 .
Hi Steve:
I want to thank you profusely for your column, it has come at an ideal time in my treatment. I am also on Revlimid maintenance after induction and an autologous stem cell transplant, and have not been tolerating it well. Along with the GI issues, fatigue, and neuropathy, I also have severe bone / joint pain, nausea, and brain fog; memory loss is ridiculous. I was extremely lucky to have achieved sCR and am also MRD negative after my stem cell transplant. I asked a lot of questions and did some research on what the difference would be if I choose to not go on maintenance. My doctor and the data convinced me to at least give it a try. I started my maintenance in August 2016, and am now on my second "vacation" because of the debilitating side effects. I have to say one of the most discouraging aspects of the treatment was that I had read few if any comments by people in the forums that expressed that anyone had been having, or had the debilitating side effects that I was experiencing. This made me feel that there was something wrong with me, and that I was alone in my suffering. Not that I am glad you were having a hard time with your treatment, but it was nice to see that I am not alone in my reaction to the treatment.
At this point, I am not sure what my next steps will be with regards to maintenance therapy. I agree that you have to have some quality of life. Thanks again for your contribution to the Beacon, and I wish you the very best.
Steve,
Here is a Myeloma Beacon reference to read for help in dealing with neuropathy and other issues: "Guide To Nutrition In Multiple Myeloma – Part 2: Supplements" (Sep 2, 2010). I use the supplements recommended with very good results in controlling side effects of Revlimid and other treatment regimens. Probiotics also help lots.
Your decision to stop maintenance is good for you. Go for it. Keeping on top of what is happening with the mprotein every few months with blood testing will detect any rise in disease profile. Enjoy the break from treatment both physically and mentally. Give the nutrition article a read.
Take care.
Kathleen - I am glad the column was of some value to you. That is what I consider to be the special value of The Beacon; the fact that one can read about the experiences of other multiple myeloma patients and use what they read to apply to their own experiences. I couldn't put a number on how many times I have benefited from reading what others have written, whether it be from the columnists or the responses from readers. If there is one thing I have learned from living with this disease for nearly five years now, is that we are rarely alone in our suffering. Someone, somewhere is probably going through what we are. I hope your situation improves and that your current "vacation" gives you extended relief from your debilitating side effects.
Eric - Thanks for the information on nutrition in multiple myeloma. I have tried numerous approaches (some mentioned in the article) and little has helped but will look further. Hopefully, my treatment vacation will be a lengthy one and it is something I won't have to worry about for some time.
Good decision. All options will be remain when you need treatment next. And by then there will be more research completed on how best to use the newer treatment drugs.
Talk about being between a rock and a hard place. I hope I don't see the day where I have to make a decision to stop maintenance versus quality of life, but I totally understand why you did it, Steve. I have had the "Revi-belly" side effect, which has improved since I improved my diet, but that is not always the answer, and we are all different in how we respond. I still suffer from bouts of IBS with no warning, so I carry the appropriate pills and accessories in my purse so I am prepared, but so far I can live with it and it is not a daily occurrence. I wish you well and that your numbers are still good when you text next.
After 5 years of treatment, side effects have become too much to handle. Currently on a 4-week vacation and will restart treatment soon. As much as we detest treatment, even maintenance, without it sooner or later myeloma cells more likely than not will begin to reinvade. So I have chosen treatment while we all pray for a real cure.
Hello Steve,
I am glad that you will be feeling a lot better while taking a break from treatment. As we multiple myeloma patients live for longer stretches and are taking intense treatments, I think that if possible it is a good idea to take breaks. I am on my second break from treatment in 8 years. The first one was for 3 1/2 years, and so far, the second break has lasted almost six months. Maintenance treatments are different from consolidation treatments after a transplant, though, and it is great that your blood counts have been in a normal range since your transplant. Many patients don't get to such a good remission, but you seem to have choices. I've been told that data do not support going on to maintenance therapy after not being on maintenance right after a transplant. Could one extrapolate this to say that there would be no benefit for someone on a treatment break to start up treatment again unless there was progression of the multiple myeloma?
I took the same approach with my treatments as well. I was getting maintenance dose of Velcade every 2 weeks, and the numbers where still creeping but ever so little. When I was originally diagnosed, my light chains were over 1500. After Velcade, Cytoxan, and dex treatments, I had a complete response and below the normal. After stopping maintenance some 2 years ago this August, my labs indicate my light chains of 260, and latest CT scan did not show any activity of myeloma. I run my labs every 3 months and see my doctor every 6 months or so depending on the labs. Go with your gut feelings; it's worth a try since this is a slow moving disease (just my opinion for me). If the numbers go south, there are plenty of new options out there to help you. I want to mention that I refused the transplant again; I feel I made the right decisions. My plan is to wait till my light chains are in the neighborhood of 500-800 and then resume treatment. Great column, Steve!
Hi, Steve.
I sure wish you a good break from your maintenance. Just calming your body and mind for a period of time while your doctor watches your blood tests closely would help you with life quality, I'd think. Your column is very helpful to me personally as I'm on Velcade maintenance and doing well but thinking about future options.
Wishing you a good day, for sure.
Thank you, Steve, for sharing with us what you've been through in deciding what you want to do regarding your maintenance therapy. I always enjoy your columns, even though I don't always comment on them, but I wanted to comment today to ease your mind about your decision, particularly because one or two comments you've received have (wrongly) suggested you may be hurting your prognosis by discontinuing maintenance.
It's widely accepted that being on Revlimid maintenance therapy extends the period of time that a patient is in remission. Basically all studies about maintenance have shown this since the first time such studies were done decades ago.
However, extending time to relapse doesn't necessarily mean improving the total amount of time a patient lives. That's overall survival, and the evidence is mixed, at best, on whether Revlimid maintenance improves overall survival.
A U.S. study which, in many researchers minds, was poorly designed and executed, shows an overall survival benefit for Revlimid maintenance after a transplant. A well designed French study, on the other hand, showed no overall survival benefit for Revlimid maintenance.
So your decision to drop Revlimid maintenance therapy could very well have little or no impact on your overall survival. On the other hand, given the side effects you've experienced, it's definitely going to improve your overall quality of life.
It is not unusual to rest your star players for a meaningless game when the championship game is coming up. The problem with multiple myeloma is that you don't know when the next game is coming. Moving away from the game analogy, I think that most oncologists prefer that you stay on maintenance therapy until disease progression. However, as a patient with side effects, it is very hard for me to follow those recommendations. But of course the trick is to re-start treatment before the multiple myeloma causes any more damage. I think when somebody has that answer we will all be "winners."
David - With the pace of developments in myeloma treatment, there is a very good chance that when I resume treatment, there might be more options available to me, even though Revlimid has been very effective in keeping myeloma, as my doctor so creatively describes, "sleeping".
Susan - My IBS was not only daily, but multiple times during the day and extremely sudden and volcanic in nature. If I am only Revlimid-free for 3 months, it will be worth it. We certainly are all different in the symptoms and side effects we experience.
Louise - You are correct, the inevitable relapse will occur. In my mind it all boils down to quality of life until that occurs.
Nancy - Wow! 3+ years off treatment. As I said to Susan, I'll be thankful for 3 months. I have always felt fortunate that my response to treatment has been so positive, knowing that most with this disease are not so fortunate and that my suffering pales in comparison to what most go through. I appreciate your comments and especially respect your columns as the most senior columnist for The Beacon.
Larry - Thank you for sharing your experiences so others may benefit. Sounds like you and your doctor have a great game and possible adjustments ready to put in place.
Sylvia - Thank you for your kind comments. Game planning ahead (considering future options) is a great strategy.
CherylG - Your comments are so insightful and more importantly, accurate. If time to relapse was a proven factor in prognosis, I'm not sure I would have made the change I did. But as you indicate, the research is mixed on that. As I noted in my column, my doctor, who has been "Woodenesque" (John Wooden, greatest college basketball coach of all time), said that he would never allow me to make a bad decision regarding treatment. He supported my decision.
coachhoke - From one coach to another, I love your coaching analogy. I agree with you that the unexpected nature of multiple myeloma, i.e. not knowing when the next game is, is tough, perhaps the most difficult thing to deal with with this disease.
Aloha Steve,
As I see it, we all face the quality of life vs. length of life challenge. Of course the correct answer is different for everybody. The 85-year-old person with grown children will probably have a different answer than the 30-year-old parent of young children.
For myself, while I dislike the maintenance therapy I am on, I have seen my light chain numbers rise every time I take a mini break. I am pretty sure that if I stop, my myeloma will become very active again. I also have two boys in high school that help to keep me motivated to put up with the GI problems so that I can see them to adulthood.
If I was in your shoes, I would most likely choose just like you. If my numbers remained stable, I would stop immediately.
Thank you for an excellent article to stimulate our thoughts about where we all stand on this difficult decision.
Enjoy every day of your time off and hope it lasts forever!
Good luck!
Tom - You give very thoughtful insight, as usual. Your reference to your two sons is particularly insightful as family considerations are a huge factor in our plans for living with this disease. My to children are 25 and 21, but if they were younger I'm not sure I'd be plotting this game plan. As the closing paragraph in my column says, "Time will tell" if this new game plan is a good one. If there is one thing I learned from coaching, what appears to be the best laid plans aren't always so. When I have a new set of blood tests done in 2 weeks, I will have been off Revlimid for a total of 3 months so that should be ample time to allow the myeloma to waken from its sleep if it is inclined to do so.
Over the course of my 12 years with multiple myeloma, I have taken at least 3 breaks from treatment. All were supported by my doctor who, by the way, is not an multiple myeloma specialist, but knows what he needs to know as a hematologist-medical oncologist. My myeloma doesn't aggressively explode, so taking the breaks have been great. I'm coming up on year 11 of my stem cell transplant. Back in 2006, maintenance wasn't really widespread, and it was not even mentioned to me. Fortunately, I had 4 great years off all drugs till 2010 when I started Revlimid. Right now I have been off all drugs except acyclovir for almost 7 months. Velcade worked wonders. I have no regrets of going off. When the time comes and the numbers start rising, I'll go back on. Personally, I think you know your body best and it's saying take a break. Good luck with it and enjoy this time.
Thank you Steve for a very informative and insightful column. My husband has struggled with a similar decision but has remained on his maintenance therapy due to a chromosomal abnormality that puts him in a high-risk category. What he was able to do with his oncologist's consent was reduce his Revlimid from 25 mg per day to 15 mg. He is also getting once per month infusions of Empliciti (elotuzumab), a monoclonal antibody FDA approved in 2015. Currently, he is 18 months post stem cell transplant and is MRD negative. Since we are still relatively new on our myeloma journey, your experiences, as well as those of other Beacon contributors, are extremely valuable to us. We pray that you continue to do well on your "break" and enjoy feeling "normal."
Literally going with your "gut" may be the best choice, especially since you have done due diligence on all the information, outcome stats and the doctors guidance.
I have read how the gut environment may influence so many autoimmune diseases and have learned that multiple myeloma is often diagnosed concurrent with another immune dysfunction disease.
The patient must make the difficult decisions from how they feel and what their particular body can tolerate. In some cases unmanageable side effects are intolerable. Quality of life is very important, it is a game changer.
Great article and important discussion, as always Steve!
Christina - Thank you for your comments. Your experience gives me hope in two ways. First, the fact that you have lived with the disease for 12 years beats what most say is typical prognosis for multiple myeloma. Second, that treatment vacations haven't had a negative impact on you. I hope your good fortune continues.
PattyB - All of our situations are different, but you should be comforted by the fact that he is high risk yet MRD negative 18 months after his transplant. I am classified as low risk, am 32 month post transplant, and MRD positive.
kathym - Quality of life isn't everything, but in an incurable disease, it comes in a close second. We go with our head, our heart, and our gut when making decisions about living with this disease. Thank you for the interesting information on other immune system dysfunctions being associated with multiple myeloma.
Steve,
Great column and very timely. I had followed up on one of your previous columns (I think it was the one on retiring) as our myeloma journeys are very similar. I am 5 years post transplant and have been in stringent complete remission (sCR), no M-spike. I have been on Revlimid maintenance since the transplant - I had to drop from 10 mg to 5, and although it is not a protocol (my doc was ok with it), I do 2 weeks o/ 1 week off. I still have GI issues but starting week 3 more severe. I have been off Revlimid for 3-week periods because of illness or minor surgery. I also have had many squamous cell skin cancers (2 to deal with now); the last year, I have seen an increase in respiratory infections. I mentioned to my doctor that I was considering a break & my doctor said before I do, she wants to do bone marrow biopsy with MRD testing - scheduled for next week.
Deciding on whether to transplant is a decision as is maintenance. There is research to support it extends the time until relapse, but the toxicity & immune system suppression contribute to other problems & quality of life. I have seen many patients in forums that are 5+ years out and no maintenance so would we be ok for awhile without maintenance & we all know no one knows the answer to that.
I wish you continued good numbers & a better quality of life as we all continue this myeloma journey.
Steve, as always, thanks for sharing.
I'm currently in remission from Revlimid, Velcade, and dex treatment. I reacted to the treatment very positively through the first 4 cycles. All my numbers came back to normal, and my M-spike went to 0. But, after that it got very difficult, I couldn't stand the neuropathy anymore (which then somehow morphed into painful plantar fasciitis in both feet) even after the dosage for the Revlimid and Velcade was cut. So my oncologist recommended that I stop all treatment - that was was two months ago, and although it's getting better, I'm still dealing with neuropathy and plantar fasciitis issues. I'll be seeing a specialist in March. I'm thinking he'll recommend maintenance but I'm not even willing to entertain any treatment until the problem with my feet clears up. It really is a quality of life decision.
Best
Thank you for a timely and well written article. From the number of comments, you struck a nerve.
I really support your decision because quality of life for me is the deciding factor always. I'm 6 years post stem cell transplant, plus a scary relapse in October this year. Before, relapse was judged by my IgA and M-spike. This time, I began extremely low in platelets, hemoglobin, and white blood cells. Fortunately, 4 months later with a regimen of Darzalex, Velcade, and dexamethasone, I am in remission. One more cycle and then I take a break, relying on monthly values for assessment. I still remember the years on Revlimid as progressively awful and am relieved that is no longer an option. Yet the current treatment is progressive in its side effects. Hooray for breaks! Hooray for you and your decision! The myeloma journey requires courage.
Carol - Your comments reflect so accurately the heterogeneity of multiple myeloma. I have often wondered if other cancers are so, or is multiple myeloma unique? I hope your sCR status continues!
Keno - My experience is similar to yours. Despite being off Revlimid for nearly 3 months now, I still experience neuropathy, though it is not as severe as it was while under treatment, and, while my gastrointestinal issues have improved greatly, they haven't disappeared completely. Which makes me wonder, are these permanent conditions due to the toxicity of the treatment, or does it just take time for years of Revlimid consumption to be cleansed from the body?
Steve,
I am resident in the UK and am treated by the National Health Service (NHS), which in itself brings different prospectives. I would like to contribute two points.
1. I signed up for the Myeloma XI trial in order to get the latest Revlimid treatment provided by the manufacturer for the trial. The trial, among other things, is trying to determine whether there is actually a benefit to having maintenance after the stem cell transplant. The doctors believe there will be, but none has been proven yet (I asked recently).
2. The next point is the level of maintenance that the manufacturer recommends (I drew maintenance on the trial). On this trial it starts at 25 mg with aspirin plus a calcium supplement as the only other daily dose. As one's blood counts fall, they drop the dose, after a week off, by 5 mg and start again. When I reached 5 mg and blood counts were low I thought I would be spared, but I have been reduced to 2.5 mg. They say it is worth it and it does not give me any problems. In all I have had 52 cycles of maintenance. I have found that keeping off cheese and processed meats is enough for bowel the bowel problems.
So in summary no maintenance may be just as effective and also a lower dose of Revlimid (less side effects) could be an alternative.
Best wishes,
Ray
Great column, Steve! I can't imagine how difficult it is to make these decisions, but I certainly can appreciate the importance of quality of life that this game plan brings. Wishing you many winning seasons before you need to change it!
Ray - You are to be commended for taking part in a clinical trial. My oncologist is a strong advocate in making myeloma patients aware of the benefits of taking part in a clinical trial. The specific details of the trial are interesting and hopefully the conclusion is that less treatment is the game plan to pursue in the future.
Maureen - I think that quality of life is an especially important consideration if one is in relatively good health. My current condition is good, really good. Apart from the side effects I've described in the column, I am a very healthy, active 61-year-old man; I just struggled with feeling sicker from the treatment than I did from the disease.
Tabitha - I appreciate your kind comment. We make so many big decisions with this disease that their significance almost becomes routine in stature.
Get new Myeloma Beacon articles by email.