Myeloma Lessons: What’s Next?
So what exactly is next?
That is a question I have been asking myself quite a bit lately. It seems like for the past year or so I have been taking a mental vacation from looking ahead. For an incessant planner like me, this has been a change and, to some degree, a welcome one.
But now I find myself rolling the question around in my mind. And it arises on multiple levels.
I wonder what is next with my condition. I have been in complete remission for the past year and half, even before my transplant. I am trying to live in the moment and not think about the almost certain relapse. After all, some myeloma patients can go many years, even a decade or more, before relapsing. But it’s difficult to put those thoughts completely aside. When will it come? Will it be a slow march upward in my M-spike, or will it be aggressive?
It seems almost silly to waste a beautiful summer day thinking about it, but I do.
Then there is the maintenance question. What is next when I reach the two-year mark of Revlimid (lenalidomide) maintenance? When I was first diagnosed, the consensus was that two years of maintenance was sufficient for standard-risk patients in remission.
But more recently there have been studies which suggest that continuous therapy is the way to go. It sure would be nice to go drug-free for a while, even though the side effects for me have been minimal.
So what to do? I have about six months before the two years is up, so there is time to consider the options. And as one of the Beacon forums posters noted recently, the decision may be taken out of my hands. In his case, a heart issue resulted in the premature discontinuation of his Revlimid maintenance (see related Beacon forum posting).
But perhaps the most troublesome “What’s Next” question has to do with what path to follow if/when I relapse.
There are two parts to this question for me.
The first issue is with whom to consult when deciding what treatment plan to follow.
I currently see a myeloma specialist at a teaching hospital in central Pennsylvania. Until about a year ago or so, my doctor was the only myeloma specialist at that hospital. So there is little diversity of approach and experience at that facility.
Additionally, the hospital where I am being treated, although it is a teaching hospital, participates in very few myeloma clinical trials. I don’t mean for this to appear to be a criticism; with over 700 myeloma patients and such limited staffing, there is little capacity to do more than see the patients.
For that reason, I have thought for some time that, when deciding what approach to take at relapse, I would seek other opinions. Living where I do, I am in easy driving distance to Philadelphia, Baltimore, and New York. Even Boston is in driving distance. There are many respected myeloma specialists in those cities. In some ways, this embarrassment of riches makes the decision more difficult. I suppose that I could visit several of them, but given how diverse the opinions are among myeloma doctors these days, I wonder how much that kind tour would advance the ball.
Equally confusing on the “What’s Next” front is what treatment plan to follow.
When I was first diagnosed, the consensus was to follow the Velcade (bortezomib), Revlimid, and dexamethasone (VRD) plan. Plus, I didn’t know much about myeloma then. So it was an easy decision to simply follow the advice of my doctor. But, since that time, many new drugs have been developed.
For a while my thought was simply to re-do the VRD regimen on relapse. After all, it worked extremely well the first time, and some doctors believe that it makes sense to re-try drugs that have worked in the past – particularly when the patient has been off of the treatment regimen for a while. But with all of the new drug options coming online, I wonder if it would make sense to try something new.
Of course, then the question becomes which drug combination to try.
A few months ago, one of the Beacon forum members posted about an article describing emerging approaches to myeloma treatment (see related Beacon forum discussion). It was in the form of a panel discussion among myeloma specialists. I found the review to be at once educational and confusing.
There are so many choices and different trials going on that I really don’t know where to start. Given the heterogeneity of myeloma caused by the many different clones that may be present in any one patient, there just is no way to determine what drugs work best for a given individual. We hear quite a bit about individualized medicine, but until there are readily available tests to determine what clones a myeloma patient has and which drugs work best for those clones, we are often shooting in the dark.
Most myeloma doctors recommend two- or three-drug combinations, theorizing that this increases the likelihood that one or more of the drugs will be effective. This approach makes sense, but it’s not entirely comforting that we still are guessing about what will work based upon a statistical model.
Myeloma is not curable, but it is treatable. While the search goes on for a cure, many of us would be satisfied if myeloma achieved the status of a chronic, treatable disease. The analogy is frequently drawn to diabetes, which cannot be cured, but in most cases is kept under control with a well-established regimen of diet, medication, and exercise. But until we come up with an individualized approach for each myeloma patient, the goal of chronic disease status cannot be achieved.
As I sit here today, I simply don’t know what’s next. I have taken a mental break from thinking about these issues and doing the background research necessary to make informed decisions. I think that it is time re-engage so that I can be prepared when the time comes to take action.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
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I agree with you completely. The worst thing about MM is not knowing when it's going to strike. I've had MM for 8 years, never had a SCT and my hospital where I'm treated doesn't have a Myeloma specialist. I see an oncologist/hematologist. It will actually be 9 years in December. I've also never been on maintenance. I was on chemo for 11 months when first diagnosed and for 6 months last year. Other than that I haven't been on anything except calcium, vitamins etc.... I have Iga MM and am 56 years old. I was sent to Dana Farber in Boston. The Dr in charge there told me I had the choice. I chose not to have a SCT now. I have been somewhat stable for the last few years. The bad side is mm caused me to have severe osteoporosis and broke 10 bones in 5 years. I also got oteoncroses of the jaw from the bone hardening drugs so I can't get them injections anymore. Other than that I'm feeling good and living life.
The very same "What Next" items are, unfortunately, always on my mind (especially every month while waiting for my lab results). It really does seem like every treatment is trial and error with side effects.
You are certainly correct in all of these points, I know because I have the same feelings and the same worries. I received my diagnosis in January 2012 although I have blood test results proving that the MM was active at least one year before but at that time the 'family doctor' was obsessed with intestinal bleeding which was none existent and wasted many months.In 2012 I had the Velcade/Revlimid treatment for six months. My first documented hint of myeloma was at the age of 49, way back in May 2003 when routine tests showed abnormal proteins in both blood and urine, this was never followed up. But here we are in 2015 and this month I am very fortunate to be completing 3 years of remission and without any treatment other than Zometa every three months. I keep asking myself when the relapse will occur. I try to draw some reassurance from the facts that not all MM patients die of the disease, increasing numbers are living long enough to die from something else. It seems that roughly half will survive for five years although this may soon improve due to the progress made in recent years which has not yet appeared in statistics. Of those who survive the first five years a good number will make the ten year mark and I am now discovering people who are still well after fifteen and even twenty years. There seems to be a magical 'core' representing less than five percent of patients who can claim to be 'cured'. It all adds up to HOPE !
I never thought about the relapse when the myeloma quickly came under control on induction. But I did become seriously ill and realised the threat the disease can cause to some.
I was continued on a low intensity regime as maintenance and found, my level of physical disability aside due to lesions, I did not feel especially unwell. I look at the research relevant to my known biology but I do not think about relapse specifically. It was my treating doctors who told me from my blood test results that I had relapsed and agressively.
Changes in my body were evident at the time I actually relapsed there has been increased disabling. I noted problems and reported these a month before my FLC started to rise, but MRI appeared to show no change (in my case MRI scan is difficult in terms of seeing small change).
I realised that my first line drug regime had been too gentle possibly, but the specialists were faced with side affects and my continually being ill from the regime I was getting. A three drug regime was changed to two and later given at less frequent intervals.
Often with the disease our specialists, (as was I also), are faced with 'hindsight' information, which is not predictable at the outset when they are managing risks to you from treatment.
I am not sure it helps us to think about when we will relapse as long as we accept that the disease has come under control. We can hope when we do relapse there is an effective treatment to bring our disease under control and we ourselves can research options, but as noted too many differing opinions are unhelpful.
We do not think about fatal accidents that might befall us, so why about relapse? If our affairs can be put in order we should live life as well as possible, we owe this to ourselves.
The dilemma of what's next applies to initial therapy as well. The good advice to seek out a myeloma "expert", and to get a second opinion can lead you into a maze of options and deciding between them is daunting. My oncologist has opined that multiple myeloma treatment is part art, as well as science. Stem cell transplant? Drug therapy alone? And then, which drug? What about supportive therapy, such as IVIG infusions? Bisphosphonates? Kyphoplasty for spine fractures? All of the treatments have side effects which can impair quality of life as readily as the myeloma itself. The "experts" agree on some things, but not on others.
Hi Andrew,
Great column! I have the same thought pattern you've expressed so well.
I try to whack the "What's Next?" mole down when it pops up in my head, but it's never far from the surface.
You're right that there are lots of excellent myeloma specialists within driving distance for you, so that's certainly something to consider. Although I do understand how it could complicate things for you.
And thanks for the plug for my forum posting. We're working to get the heart stuff straightened out. But I still feel fine, which is the most important thing to me.
Best wishes on your continuing journey!
Mike
Andrew, you bring up a really important point: What clone is currently causing what issues? Hopefully the focus on precision medicine will allow myeloma patients to have that answer for better, more effective treatments.
Hello Andrew,I was diagnosed in 2012. They found it in my jaw. I was stage 3 of 3. I had lesions thru out my body. I had no symptoms. Three months later, I had cronic back pain.I was 49. I did 9 months of RVD. I then did a stem cell transplant. I stayed on Revlimid for maintenance and started on Zomeda every month. I changed the Zomeda to every 3 months in January 2015. I just went to Fl Cancer Specialist- I had a flat line graph but now the numbers have spiked up out of the blue. He said if the M- spike continues to go up then he will give me subque Velcade. I was doing so well and now it is back. I almost hit the 3 year mark. I am glad there are many different treatments for MM so I just try to live one day at a time. That's all I can do. Sincerely Robin
I have had MM for 6 1/2 years and my numbers are now starting to bounce around. So relapse is in the back of my mind. I too have thought what next. My reaction is that I will get another opinion at that time and then decide the course of treatment. Yes there are a lot of options and with me an SCT is one of those. I chose not to have one intitially. So since I already have decided on getting another opinion, the thing left is who? Should I seek out an individual that is a big SCT advocate or one that is not? Maybe one from each column and then decide. Hopefully not by a coin flip.
As these comments demonstrate, this thought process is common to myeloma patients.
Don-I know that you struggle with this as we have discussed many times. The trail and error aspect of all of this, as you mention, is unfortunately a part of the game we play.
Ian-There has been some discussion in the forums about trying to figure what characteristics are common the the lucky few long term survivors. We can only hope for some answers soon.
Edna-I understand why it is helpful for some to not think about the relapse issue and just deal with it at the time. There clearly is a balance to be struck between not obsessing but being prepared.
Mike-i found your post, and many others from you, to be very helpful. i hope the heart issue is resolved soon. Then, of course, you will have more decisions to make.
Ron-Multiple opinions are essential. I did the one from each column approach when considering a transplant and found it to be helpful.
after 6+ yrs since sct my numbers have creeped into the relapse range. Although 72 yrs. old I have been approved by myeloma group and Medicare for a second auto transplant. Since this will be my last chance for sct I have decided to follow that path. I know there are other safer regiments I'm hoping for longer remission with sct vs. chemo options. As you say it is a tough decision that most myeloma patients will eventually have to make.
Andrew, I'd visit Dana Farber. Best Wishes.
Each treatment for MM has statistical probabilities of success. Each treatment that is proposed for side effects of MM has statistical probabilities of down side consequences. Evaluating the treatments that give the best chances for survival and the least chances of downside consequences, helps to make the choices easier. Takes away the emotional aspects and favorites of each oncologist. It's been 5 years since my MM diagnosis and this process has worked well for me.
What next indeed....I think because each of our MM is so very different, we can just be whistling in the dark with so many options & opinions, and then there is the caveat: the treatment offered is good for as long as it lasts. Choose again. I have taken a 2nd transplant off the table, almost signed up for it, but then found 2 "early access clinical trials" nearby with daratumumab and elotuzumab (in FDA hands now). Makes more sense to focus on monoconal antibodies. I too am IgA (dx 2008) and have rarely been out of treatment even with a SCT, have tried many lines & combos and used Kyprolis & now Pomalyst (I do not have high risk markers & only presented with anemia, am in great health & shape). Drs. only say I have a "slow & persistent" disease. It just doesn't go away and I am tied to the treatment center every week, coping with mild side effects. What next indeed.....
I know exactly where you are at.
My wife was diagnosed April 14, 2014. She had an ASCT November 2014 and is on maintenance with Revlimid. She responded well to the ASCT and her numbers at last check were still getting better, but she does have 17 deletion, 13 deletion, and 1 gain, so she is high risk.
I thank you so very much for the article. It is exciting to see the further development of elotuzumab and daratumumab and the host of others. It seems like significant developments are tantalizing close, we just need more data. I noticed somewhere that it's recommended that Velcade be added to the maintenance therapy for high risk patients, something to ask the doctor about. I know that, when the time comes, we will seek a second opinion.
Good luck, may God bless.
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