Myeloma Lessons: Decisions, Decisions
From the minute a person is diagnosed with multiple myeloma, he or she is faced with a never-ending series of decisions. Because there are so many ways to approach treatment of the disease, and no consensus among experts on what approach to use, at the end of the day we must make these decisions for ourselves.
As myeloma research advances with the development of new drugs, new treatment combinations, and new studies on the efficacy of transplantation, these decisions become even more difficult. After all, when the choices are limited, it’s easier than when they multiply.
In the two and half years since my diagnosis, I have managed to negotiate my way through decisions regarding induction, transplantation, and maintenance. The results have been good, so I have no regrets.
But now another decision is looming.
January 28 was the two-year anniversary of my stem cell transplant. Assuming, as my doctor and I have concluded, that the M-spike that still shows up on my tests is secondary MGUS, then I have been in complete remission since even before my transplant.
Following my transplant, beginning in March of 2014, I started maintenance therapy with Revlimid (lenalidomide). While I was concerned about the increased risk of secondary cancers from Revlimid, I was convinced that this risk was outweighed by the benefit of maintenance therapy. But my doctor, like many myeloma experts, generally recommends only two years of maintenance – especially for patients who are in complete remission.
And yet there are some studies that suggest continuous treatment until progression is the way to go.
Until recently, I was of a mind to simply continue with the Revlimid. I have had minimal side effects and the cost is mostly covered by insurance, so why stop?
But a conversation with my oncologist in November has me re-examining the issue.
He suggested that he sees no reason to continue the maintenance treatment, and some good reasons to take a break.
Although the rates of secondary cancer for myeloma patients who do and don’t take Revlimid are low, it is inescapable that taking Revlimid approximately doubles the risk. And while the side effects may by tolerable, who knows how much better you will feel once the drug is out of your system.
Finally, for those in remission, there is no way to know if the Revlimid is keeping you there or if you can have a lengthy drug holiday. If you start to come out of remission, it likely will be gradual, leaving plenty of opportunity to re-start treatment – whether with Revlimid or one of the many new drug options now available.
In an odd way, this decision is more difficult than the ones I have faced so far.
When I was first diagnosed, I felt terrible. I was severely anemic and had serious bone pain. So starting aggressive induction therapy with Velcade (bortezomib), Revlimid, and dexamethasone was an easy choice.
Although the induction treatment was very effective at wiping out the myeloma, I still had some bone pain, and I became convinced that a transplant was the best next step.
The decision to start maintenance was pretty easy, too, since I tolerated Revlimid well.
But now I am unsure which way to go.
I feel great. I can do most of what I want to do with a minimum of discomfort. So why change?
I believe in momentum. When things are rolling along in the right direction, just ride that wave as long as you can.
Plus, I am a bit superstitious. If I do things a certain way and the results are good, I will keep doing it that way – in many cases for decades.
Always put the right shoe/sock on first. Shirt before pants. You get the picture.
I am nothing if not set in my ways – because they work, and I find comfort in routine.
The Revlimid is, or at least may be, working, so I am not anxious to tempt fate.
But the other side of the coin is that, as mentioned earlier, the drug is not without risk.
And although I feel pretty good, who knows? Once I am drug free for a while, I might feel even better.
I realize I may be tempting fate by even talking about this now, two months in advance of the two-year mark. (Remember: I'm superstitious.) But I feel a need to make a decision.
Some decisions are easy. After analyzing all of the facts, the way to go is relatively clear. Other times there is no clear choice. When you are faced with a lack of clarity, the only thing to do is to follow your gut.
Originally I was leaning toward continuing maintenance beyond two years. Now I am leaning the other way.
No need to make a decision today. But soon enough, the moment will be upon me.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I so enjoyed reading your article. I just made the decision to stop Revlimid in September, 2015. I am 5 years out from my second stem cell transplant and close to 4 years out from hitting the remission diagnosis!
I understand your worry! In March I go for my first bone marrow biopsy since going off the Revlimid. Here's to nothing going on!
Andrew, this is a tremendously difficult decision. I have been in CR since my autologous stem cell transplant (ASCT) nearly seven years ago, and have been on Revlimid maintenance (5 mg, 21/7) for six years. I was among the first wave of multiple myeloma patients placed on Revlimid maintenance, and am hesitant to stop now. I guess I hear the clichés, "Don't rock the boat" and "If it ain't broke, don't fix it" running through my head. I don't worry about the secondary cancer risk; however, I do worry about the effects on my bone marrow. Best wishes to you.
Andrew, I was induced with Revlimid / dexamethasone for multiple myeloma, and I tolerated it well. Had my stem cell transplant in 2011, autologous, and went into stringent remission. So I started Revlimid for maintenance. I was on it for 3 years, and then had to stop. I developed severe anemia and lost 30+ pounds. So my oncologist took me off. I did developed a 2nd cancer – breast – but luckily it was very curable. But still a pain to deal with. But still in remission from multiple myeloma, and no M-protein 5 years out from transplant and 2 years out from stopping Revlimid.
Everyone has to deal with this cancer in their own way. It's called multiple for a reason!
Another great article, Andrew (although you already know I'm your biggest fan). After you begin your drug holiday (after next month), what markers are you going to use to make that next decision as to when to restart treatment? M-spike? Free light chain levels? CRAB symptoms? As you already mentioned, "decisions, decisions, decisions." They never end.
Then KRd, KPd, IRd, ICd, EloRd, Pom-Dex, PVd, Dara, another transplant (maybe even a tandem)? Or forget the whole damn thing and go for a long bike ride.
Talk to you soon,
Don Hoke
I am one of the patients who has been in continuous treatment. I just had my 7-year anniversary. Unlike you, I did not have a stem cell transplant. I started with Velcade, Revlimid, and dexamethasone (VRD) in February 2009, at that time a weekly Velcade infusion once accompanied by 40 mg of dex. The Revlimid part was 10 mg on 21 days and off 7. That protocol lasted a full year, then was slowly backed off. At the lowest treatment level I was off Revlimid (I have not been on Revlimid since early July 2012) and the Velcade was at a maintenance level. A velcade shot once every 2 weeks accompanied with 8 mg of dex. That has continued since July 2012, but now I am showing signs of a slow relapse. My oncologist is tweaking the protocol to increase the dex to 40 mg once every two weeks instead of 8 mg to see if that stops the slow increase in the sFLC. If not, Revlimid will be added back.
Everyone seems to respond differently. Having never had a holiday from treatment, I have become used to the routine. I plan my bike rides around the treatments, usually scheduling them for Wednesday so that by the weekend the drug effects have worn off.
Hi Andrew,
Thanks for another great column! I know exactly what you're going through because I went through that same back-and-forth decision process last fall about whether or not to continue Revlimid maintenance beyond two years.
It's an extremely difficult decision, just as you said. But I think there's another reason why it's a tough decision that you didn't mention, at least not directly. When we have to make the decision, we are dealing with something much larger than an abstract data point in a clinical trial; we are dealing with our own lives. I have some degree of fear that I will make the "wrong" decision, which will end up costing me years off my life. The decisions we make about treatment literally are life and death decisions. But we make them based on percentages, with murky crystal balls.
And it's not that we make a one-time decision about continuing maintenance. It is, for me, a monthly decision - are things still going well enough that I should continue?
Great column about something so many of us face and hope we don't screw up!
Mike
Thanks for an excellent column. The decisions we face are of a particularly difficult type: as Mike pointed out, they are not only critical, but also must be made based on sketchy information. We can't even ever really know afterwards if we made the "right" decision. All we can say is that things went well or not, but we can never tell if some other option would have been better or worse. It's definitely tricky!
Hello Andrew, I was diagnosed in 2012, Stage 3, with lesions. I did 9 months of Revlimid, Velcade, and dexamethasone (RVD) and then a stem cell transplant. I went into complete response. I went on Revlimid for maintenance. After 2 years I asked how long I should stay on Revlimid. I was told forever until there is a cure. I have recently relapsed. My doctors are talking about a new 3-drug treatment. My protein keeps doubling. I am staying positive.
Tamie, Katie and Mary – Your stories are so very helpful. And how heartening that you have enjoyed long remissions!
Don – Thanks for your kind words, as always. The answer to your question regarding which of the markers that you mentioned will I be watching, the answer is "yes." I think I will need to watch them all and make a reasoned decision (guess) as to when/if to re-start treatment.
Ron – Your treatment history illustrates the many ways to approach this disease. It is so very personalized and demonstrates the need to have medical advisers who focus on the patient rather than the standard protocols. It is interesting that you mention how you plan your rides around your treatments, which I interpret to mean you tend not to ride on Velcade / dex day. When I was getting Velcade and taking dex, I didn't ride on that day at first, but later found that riding after the Velcade shot actually helped.
Mike – The fear of making the wrong decision is very real. You are correct, the data and studies are helpful, but at the end of the day only "Patient #1" counts. I went through this when deciding whether to have a transplant. In that case, I decided to have a transplant because I concluded that it may well be very helpful and the only real risk was a difficult recovery. If I had not done it and I relapsed quickly, I would have regretted my decision.
In this case, my doctor is fairly confident that, if after stopping Revlimid, I begin to relapse, we can catch it quickly by re-starting treatment. This does not appear to be a decision with irreversible consequences.
Trevor – You point out the conundrum; after the fact, we can't really know if we have made the right decision. Right now I appear to be in complete remission, but who knows if the Revlimid maintenance has anything to do with it. Really the only way to know is by going off of it.
Robin – I am sorry that you appear to be relapsing despite being on continuous Revlimid treatment. Positive outlook is, as you point out, critical.
Andrew,
On Wednesdays when I get the Velcade shot, I do ride. I usually hold off taking the dex (oral) until after I finish my Wednesday ride. However, I lay off riding Thursday and Friday, not because of the Velcade, but because of the dex. My heart rate is elevated when I take the dex and I try to wait until the effects taper off – usually 48 hours. I will sometimes go for a short spin on Friday mornings on my trainer (Thursday night can't sleep much anyway), but nothing that elevates the heart rate much.
How very different everyone is with multiple myeloma and treatments. I have yet to find a patient like me with the same protocol – since 2008, never in remission despite a transplant, many different regimens, and now 6 months of Kyprolis, Pomalyst, and dex. Can't get off treatment, which makes plans for most travel difficult, and side effects make me stay close to home. Still, I feel just fine for water aerobics, tai chi, yoga, biking, and visiting granddaughters on occasion. "Multiple" indeed! Suzanne Gay
Hi Andrew, thanks for the interesting column. After my stem cell transplant in 2010, I took Revlimid for a year, at doses that were lowered every few months. At first, I could not tolerate a strong dose without becoming neutropenic, so by the end of a year, was only on a dose of 5 mg. This was not 'maintenance', but was a treatment since I was not yet near a CR after the transplant. (At that time, thalidomide was also used for treatment, but I feel fortunate that Revlimid had just been approved here when I started taking it.) Then I got into a CR and went off all meds for 3 1/2 years. When I went back on Revlimid plus dex due to a clinical relapse, that was also a 'treatment', not 'maintenance'. Thankfully, maintenance chemo with Revlimid has now been approved in Canada. One comment I would make is that ongoing maintenance would be a milder treatment than starting up with treatment again. Also, it is supposed to delay a relapse. I did enjoy the time off of meds though!
So interesting to read all the multiple mental processes each patient undergoes.
In my first nine years of living with multiple myeloma, I have always chosen the route that gets me off all drugs (and yes, I have always been given the choice to do maintenance). Diagnosed with very advanced disease, even short time on dialysis (one month of Revlimid blew my damaged kidneys). Nine months Velcade / dex followed by stem cell transplant 2008, no follow-up treatment. When kappa light chains starting really jumping up, directly to stem cell transplant January 2015. Again, no maintenance. Still at CR one year post transplant. Kidneys stay around 1.3 creatinine.
I see how for some, the drugs might be good for them mentally. For me, just the opposite. As long as I can, I want to be drug free. Now, that does not work for many, but grateful it works for me. In those nine years I can still help with the farming, including long days in the tractor, have horses that I ride regularly (great therapy), and spent countless precious days caring for grandchildren. We adjusted my transplant date last year (moved it up, added Cytoxan with melphalan instead of doing some months of pre-chemo conditioning) so I would be able to help with new twin grandbabies arriving four months later, and my husband and I would be home for spring planting. I spent the summer holding babies
So I think what I am taking from this great discussion is that it is not all about the treatment, but how that choice affects the patient mentally.
I have a multiple myeloma specialist who is one of the very best, I leave how to treat me to her, and how to best use all the new advances, and I take care of living everyday to the fullest. Lucky to have a doctor who is on board with with my quality of life view.
For many, my choices will not work. But for some, it will, and should be part of their treatment options. Sounds like you have been able to live just as 'normal' a life on treatment, congrats.
Hello Andrew, These treatment and medication decisions are so very hard for all of us who live with multiple myeloma. I have been in CR since my transplant in 2012. I live in Canada, so Revlimid was not part of my treatment plan prior to transplant. However, my oncologist preferred not to use Revlimid as maintenance treatment, feeling it best to wait and use it if and when I relapse. I questioned this, as speaking with other myeloma patients at my support group who were treated at other cancer hospitals were on this maintenance therapy. I have been back and forth regarding this decision and to this day I am not on any treatment. I see my oncologist every three months and have my blood work at that time.
I so enjoy reading everyone's writings. I wish you the best of health on this journey we are all on.
Ron – Interesting, it's the dex that's the issue. I never noticed an elevated heart rate when I was on dex, but I no longer use a monitor. I rarely do high heart rate workouts anymore, so I guess that's why I was not affected as you are.
JC - Your story is inspiring. It is nice to hear about someone who had, as you put it, advanced disease at diagnosis, but now nine years later is living life as she wants it, avoiding as much treatment as possible and hugging those grandbabies! You are right that the mental side of dealing with this disease is so important.
Diana,
That you are four years out of transplant with no maintenance is very good news. I would say your doctor made a good call. Enjoy, well at least the two months and three weeks until you have the week before the labs
I still haven't mastered enjoying that last week before labs.
I hear so many that have so many tests. I haven't had a PET or an MRI since 2008. My hemoglobin is 13.7, so its all good. (I had a farm and ranch bone density test – fell off my horse, hit the ground hard, and no bones broke.) Keep living and keep laughing during this time.
You have been given four wonderful years, hopefully you will have another four drug free. So happy for you!
Great article Andrew! Good luck with your decision. I really appreciated your perspective and the perspectives of the others who commented. My husband is in maintenance chemotherapy (Revlimid, elotuzumab, and dex) right now and since his multiple myeloma is "rare" and aggressive, I believe he will be on maintenance chemotherapy for a long time. As the comments indicate, each patient is rather unique with unique circumstances. By reading your comments and the comments of the others, it shows us that there really are lots of options and each patient really is in charge of his or her decision. Again, best of luck with your future decision.
Andrew, thanks for your great insight. I agree with your analysis of the problem of choosing which treatment option we should use. That said, I am hopeful that recent advances in minimal residual disease (MRD) will allow us a better understanding of how any one treatment is working.
Andrew, thank you for another wonderful article that summarizes our dilemmas and decision points with this complicated disease. The comments have been wonderful in expressing how different the disease is for each of us.
Because I have an aggressive form, I continue to have to change the treatment. I remember my first myeloma expert promised me 2 years of remission after my autologous stem cell transplant if I followed the Revlimid / dexamethasone combination. I had 2 years exactly. For the past 3 years I have experienced 3 different lines of therapy, usually I bow out early because of side effects.
Each time I reach another decision point, I also have to feel good about my treatment team. Over 5 years that team leader has changed 3 times. Not helpful. Right now the university myeloma expert understands me and takes my opinion seriously. That really helps.
Good luck with your decision, it will be the right one for you at this time.
Please keep writing Andrew, I look forward each month to your column.
Maureen