Myeloma Lessons: Checking In At the Six-Month Mark
I have been off treatment for my multiple myeloma for about six months, so I thought this would be a good time to evaluate where things stand.
First, a short recap for those who have not followed my story.
I was diagnosed with multiple myeloma at the end of June in 2013. Almost immediately, I began what turned out to be six cycles of Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron). This regimen put me into what appeared to be complete remission. I phrase it that way because in October of 2013 I developed a new M-spike, different from the one that appeared at the time of diagnosis.
I then proceeded to undergo an autologous stem cell transplant at the end of January 2014. I came through the transplant with minimal difficulty and then began what would be two years of maintenance treatment with Revlimid. This took me to March of 2016.
At that point, all bone marrow biopsies and PET/CT scans were clean.
Still, over time, the M-spike had hovered at 0.1 g/dL (1 g/dl) for a number of months. Then it went to the 0.3 to 0.4 g/dL range, and ultimately rose to the 0.8 to 1.2 g/dL range. At last check it was 0.87 g/dL.
Over time, my oncologist and I came to the conclusion that this M-spike is secondary MGUS, also known as “atypical serum immunofixation pattern” (ASIP). This is a little understood and only lightly studied phenomenon. There is no agreement on what causes it or whether it indeed is a positive prognostic indicator. But for my purposes, what it means to me is that the M-spike is most likely an indicator of a benign condition rather than active myeloma.
The Revlimid maintenance seemed to have little impact on that renegade M-spike, and all other indicators pointed to complete remission.
So the decision was made to stop treatment at the two year mark.
I did not know what to expect once I stopped the maintenance. I thought that I might feel better physically and, perhaps, some of my blood count numbers might improve. My hemoglobin and hematocrit had stayed below normal throughout my treatment up to that point, but not dangerously so.
As the months since March have gone by, the bottom line has been that essentially nothing has changed.
Physically, I feel about the same as when I was on Revlimid. Granted, I no longer have diarrhea issues, which is a common Revlimid side effect, but I was able to control that issue with colestipol (Colestid). Now I no longer need to take that drug.
But other than that, I have noticed no significant differences in how I feel. That might be because I tolerated the Revlimid fairly well. I did not suffer from the overwhelming fatigue that many experience. I have always tried to stay active since my diagnosis and through whatever treatments I was receiving, so my ability to be active now is little different.
Similarly, my blood work results are essentially the same. My neutrophils have recovered, but hemoglobin and hematocrit remain a bit below normal. I asked my oncologist about this, and he said that it is likely that they will not recover further than what they have after six months off of treatment. This is likely the result of damage to my bone marrow caused by a combination of the disease and the treatments. There is no apparent physical impact from these below-normal results, although it undoubtedly affects my ability to engage in intense physical activity.
So what is the lesson here? I am still struggling with trying to answer that question.
All of us afflicted with multiple myeloma are seeking the same thing: a long drug-free remission. That is our goal since we want to feel good, do everything that we want to do with minimal restrictions, and avoid the toxicities associated with standard myeloma treatments.
Compared to that standard, I am doing very well. So why do I have this nagging sense of concern?
It may be because of that pesky, supposedly benign M-spike. But even my historically pessimistic oncologist said at my last appointment he has no doubt that it is secondary MGUS (although he did knock on wood after he said that).
It may be because I have known so many people who have been declared “cancer free” only to suffer a relapse only a short time later.
Even the most optimistic among us have moments of doubt.
Since my diagnosis, I have tried to project – through my words and actions – a fighting attitude and approach. It seems odd that, now that things appear to be as good as I could hope, I cannot seem to let the apprehension go.
Here is a recent example.
For quite some time now I have been getting my blood drawn every month and have been visiting the oncologist every two months. At my last oncologist visit, the doctor suggested that, since I am doing so well, we could go to blood tests every two months and visits at six month intervals.
My shudder at the thought of extending the intervals was apparent to the doctor. He quickly said that it was up to me, and that we could keep the current schedule if that was my desire.
To summarize: The six month report card is good. Being drug free is a blessing, if for no other reason than I have fewer pills to remember to take. Mentally, I am still a work in progress, but I am hoping that as time goes by, if the results continue to be encouraging, I will be able to put aside my uneasiness.
I have talked a pretty good game so far in terms of approaching this fight from a position of strength. Now it is time to walk the walk.
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 agree with your observation that all of us have the goal of a long term drug-free remission; however, this is something we have no control over.
As far as apprehension about the future, we should have some control over the apprehension; however, it's easier said than done.
Thanks for all your help.
Thanks, Andrew, for shining a light on the psychological aspect of maintenance therapy. I think it's one of the main reasons patients choose to do maintenance therapy, and I also think it's one of the main reasons physicians agree to it.
Maintenance gives patients the feeling that they are proactively doing something about their disease. Doctors realize this, and don't want to undermine this sense of control patients feel.
These psychological effects are powerful. Very often, the psychological impact means more to patients than side effects with real quality-of-life implications, not to mention the possibility that maintenance can permanently degrade the immune system (via reduced marrow function) and/or lead to secondary cancers.
Great article. Keep them coming!
Hi Andrew,
I love reading your columns and the other columns on the Beacon. They have all helped me so much.
I was diagnosed in January of 2015, did Revlimid, Velcade, and dexamethasone (RVD) for 4 cycles, then an autologous stem cell transplant and that, as you call it, "pesky M-spike" was at 0.3 at 100 days, not what my transplant doctor and oncologist wanted, so they had me do 4 more cycles of RVD, which got me down to 0.1 at the lowest. Now I'm in a clinical trial for Revlimid maintenance, 10 mg for three years, and the pesky one is hovering around 0.2, up and down a little.
I was obsessing a bit about the M-spike, seeing it edge up.
Last month a switch went off in my head. I have the side effects managed – Welchol and Colace for the diarrhea/constipation wars – and really, I do feel good. I run regularly, work full time and a half, keep up with my 4-year-old granddaughter, etc. With help from all of you, I realized that I am really good. And I have accepted that I am good and I have stopped the worrying.
When asked how I feel now, my auto reply is, "Good, really good."
I hope I can stay here in this emotional place – and when I start to slip, The Beacon always helps me keep things in perspective.
Thanks!
Rebecca
Andrew,
Great column. I think you express very well the conundrum of multiple myeloma patients, even when we are doing well. I think your decision not to prolong the interval between your check ups is wise.
I am one of the fortunate ones, too (knock wood!) Currently I am in stringent complete remission (sCR) (I am afraid even to say or write it!), and have been since my autologous stem cell transplant in October, 2014. I have the addition of chromosome 1 abnormality, which indicates a higher risk multiple myeloma, although the experts are not completely unified on that. I had oligoclonal banding on an off for about a year after my transplant, but that has disappeared now. I am IgA kappa light chain, so I never had much of an m-spike – only at diagnosis when the light chains were at 12,000.
After my stem cell transplant, the myeloma specialist I see occasionally (he works with my "regular" oncologist, who I like a lot) put me on maintenance of RVD "lite", consisting of a Velcade injection every other week with 12 mg of dex, and 5 mg of Revlimid on a 21-day cycle. That lasted about six months, when I was hospitalized for extreme muscle pain which masqueraded as a heart attack (muscle cramps in the chest). At that time, my CPK level was about 10x normal (CPK is an indicator of muscle inflammation).
My oncologist took me off of everything and was content to "watch and wait" with frequent labs (twice per month). After a couple of months, I grew increasingly uncomfortable with "doing nothing," and told him I wanted to go back on maintenance, without the Revlimid, which he obliged. So, for now, I am on Velcade and dex every other week. Of course, it is not convenient, since I have to go to the doctor's office twice per month (and there are some minor side effects with the Velcade and dex). But I do feel as though I am forestalling the inevitable relapse, even though this may not be true at all.
If I manage to remain in sCR for 3 years, at that point I will have to re-evaluate next steps, according to the myeloma specialist. Do we continue with the Velcade / dex or go drug free? I hope I have that choice! I would like to have minimal residual disease (MRD) testing at some point, and I think if that were negative (along with all of the other markers), I would take the plunge and go drug free, perhaps with the exception of Zometa 4x per year.
I realize this is a very good position to be in, and that this problem is really not a hardship. I wish I were less neurotic, and could roll with things a little better, so that I could enjoy my remission more.
Until there's a cure, this is the boat we are in. I think we all have to make the choices that make us the most comfortable, physically and mentally, and that can be different for each one of us.
Thanks for the article. I was diagnosed in 2012 and was treated with a Velcade-based cocktail for 12 months. At that point, I was feeling very toxic, and it was agreed that, for quality of life, that I would stop the treatments which had stabilized at a maintenance level. My blood was checked every 3 months, at which time I met with my haematologist. I went 28 months in remission.
I knew that I had relapsed before a scheduled blood test because I started to have pain in my breastbone and front ribs as the lesions came back. At that point, I was prescribed Revlimid and dexamethasone, and will continue until it no longer works.
Basically, you will become aware of a relapse when pain returns. So there is no need to fret over frequency of tests if you are on a 3-month interval.
Andrew, no matter how upbeat and great we feel, all of us MMers are waiting for the next shoe to fall. Constantly reading and hearing that presently there is no cure for multiple myeloma reinforces the story. I guess we're stuck in this place and just plow on and do the best we can every day.
I was diagnosed with MGUS in 2003. By 2005, my red cells were a little below normal and remain so to this day. I just tell my doctors that this is normal for me. In 2010 my MGUS became full blown myeloma and I was treated with Velcade and dex. In 2012 I had a stem cell transplant. I have taken no myeloma drugs for the 4 years since and my blood counts etc. remain good.
I see my hematologist twice a year in March and September and my transplant oncologist twice a year in June and December. I get blood tests at each visit. As long as my results continue to look good, I will stay off drugs. I would have thought that my low red cell counts would make me tired, but they do not. I seem to have the same energy that I had before. I wish you the same results.
Dear Andrew,
What a helpful column for so many, including myself. When I read your column, I once again realize how many faces this diseases shows us in different individuals.
I believe that the "nagging sense of concern" comes with the disease. In fact, any cancer patient will identify this fear. I like that you set the goal of being positive. The 6 months of drug free remission sounds like it has been a gift.
I manage my fear by not banishing it completely, but engage in life experiences that will keep fear and anxiety in a little corner. Sounds like many of us use some form of exercise, or just getting outside in nature. Your particular challenge is also that "pesky" strange M-spike.
I also write, which you do also. That had been a great coping strategy.
Andrew, you already walk the talk. Perhaps I believe that a little fear is acceptable and does not diminish your strength. Thanks for the article.
Maureen.
Andrew,
Another great column, and one I read with great interest as I was very interested to hear how being treatment-free has impacted your myeloma numbers and condition. It is interesting that there has been no negative impact on your numbers or your condition, as one would have thought that after 6 months, if a setback was to occur, it would have done so by now. The fact that you do not have to worry about diarrhea is reason enough for me to contemplate talking to my doctor about taking a break from Revlimid. Welchol has been effective in controlling diarrhea, but I cannot find the correct dosage to stop the diarrhea without suffering from constipation, which for me can be an equally uncomfortable condition.
I hope you can keep replying "Good, really good" when asked how you are feeling.
Andrew,
I am hoping you can stay in a drug-free remissive state indefinitely.
You are now back to doing the longer hillier rides. So it sounds like your endurance is improved. That implies that you are getting adequate blood flow to your leg muscles. Do you notice any difference in your biking abilities?
Some interesting comments. Let me address some of them:
Jim – Thanks for expanding on the psychological aspect of maintenance. It's odd how being on treatment gives some of us a sense of control which we may miss when we are off treatment. How strange that getting toxic medications can seem better than being in remission and off treatment. I never gave a thought to the possibility that doctors may recommend maintenance to enhance the patient's sense of control rather than because they may think that it is medically indicated.
Rebecca and Steve – You are so right. We need to keep reminding ourselves that we are good, really good. Don, who made the first comment above, and I regularly talk and we remind each other of that every time.
Katie – You captured the thought in just a few words. We keep hearing that there is no cure and virtually everyone relapses. So it nags at our consciousness. But we also know people who have gone many, many years without a relapse. As you say ... just plow ahead!
Ron – It's tough to answer whether there has been any difference in my cycling. I know that I am not faster! Since I semi-retired a year and a half ago, I am riding many more miles, so it's hard to compare to when I was still working. It's true that I have done a bit more climbing this season, but I can't say being off treatment has had a noticeable positive impact. I am going with the quantity over quality approach.
Hi Andrew,
I think the psychological aspect is so important when it comes to maintenance decisions because, at least until recently, there hasn't been a compelling medical rationale for or against maintenance. As you know from the countless articles and discussions we've had on the subject in the forum, whether or not there is an overall survival benefit to maintenance has been up in the air. In that kind of environment, the psychological aspect of the treatment can end up tipping the scales.
You probably can find similar issues at play when it comes to other treatment decisions where the science is unclear (or perceived to be unclear).
Hi Andrew,
Thank you for your column. My husband, who was diagnosed end of 2013, has gone on and off Revlimid a few times. He's now voluntarily back on it. I truly feel the doctors are as interested and in tune as their patients. Many of them are very willing to go along with what and how the patient is feeling, as long as the blood work is in line. In fact, it's all about blood work, results, and if any of the light chains are getting out of control. Yes, there's the M-spike; but, I feel this disease is in its infancy in terms of treatment. I also feel, that when a patient is able to take a "break" from the treatment, that enhances their ability to go back on the same treatment plan that worked at a previous time, because they haven't developed an immunity to the treatment! Spoken like a true non-medical professional – but that's the monitoring we are doing, and it is working thus far!
Keep up the good work! It's very possible that your body's natural defenses are moving in and taking over!
Hello Andrew,
My hematologist took me off thalidomide 10 years ago when I was diagnosed with a secondary cancer (breast cancer). I have had no treatments since then. Over the years, my multiple myeloma has reverted slowly to a kind of "smoldering" stable stage by itself. 25 years ago I was diagnosed with multiple myeloma. Just shows how different everybody's myeloma journey is. One day my myeloma might show itself again, but until then, I will enjoy every moment.
Hang in there.
Ilse
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