Arnie’s Rebounding World: The Relapse Rollercoaster
When I finished with my stem cell transplant in September of 2006, I had achieved a very good partial response and my monoclonal protein level (M-spike) was down from 7.5 at diagnosis to 0.5. My doctor seemed happy, but in truth I was not. I was disappointed I didn’t achieve a complete response.
In an attempt to reduce stress, I returned to work on a somewhat reduced schedule compared to what I was used to doing before getting sick.
I tried to carry on life as normally as possible and began a period of “watchful waiting.” My doctor’s words “average time to relapse is 18 months to two years” never left my mind.
I was going every month for blood work and a check up. Every month was a new adventure waiting and sweating over results.
Immunoglobulin levels and M-spikes on the blood tests can fluctuate, and I was cautioned not to make too much out of small month-to-month changes. Of course as a somewhat compulsive person keeping a spreadsheet of my results, this is easier said than done.
My M-spike did drift down some as predicted and got as low as 0.3 about 6 months after the transplant. It didn’t stay there very long. After another couple of months, my M-spike started to rise monthly: 0.4, 0.5, 0.6. It did not rise quickly, but the trend was real.
My disease was coming back already! I was only about 9 months out from my transplant. Quicker even than the “average” as quoted by my doctor. This was an awful feeling.
Multiple myeloma is a very heterogeneous disease that behaves very differently in each individual person. It was becoming apparent to me that I was not going to be one of those people I kept hearing about who had relatively indolent disease and lasted many years without relapse. I felt that early relapse was a sign of more aggressive disease, and this could not bode well for the long term.
Thank goodness we have the new drugs. It was time to start Revlimid (lenalidomide). At first I started 25 mg Revlimid alone, but after another month, my M-spike continued to rise, and we added 40 mg dexamethasone (Decadron) once a week . This seemed to work; my M-spike stopped going up and even dipped a little initially.
Everyone reacts differently to the medications, but fortunately for me, I was able to tolerate this regimen very well. Both Revlimid and dexamethasone are taken orally, making it fairly easy. Of course, I had the usual ups and downs of the dexamethasone but was able to incorporate the sleepless nights and steroid crash day into my life and was able to carry on normal activity, work, and exercise.
I was able to carry on this regimen for almost a year and a half with my M-spike just creeping up very slowly. Unfortunately, with the current medications, multiple myeloma inevitably finds a way around the drugs over time. One month, my M-spike took a big jump. The Revlimid/dexamethasone had stopped working, and my disease was very active again.
My doctor suggested Velcade (bortezomib) as the next step. Velcade is given intravenously (although there will likely soon be a subcutaneous version), in my case twice a week for two weeks on and one week off, requiring that I go to the infusion center for the treatment. Fortunately, Moffitt Cancer center was right across the street from my office, and I was able to pop over for the infusions without too much disruption of my work schedule.
In the beginning, I tolerated Velcade (with dexamethasone) well with really no side effects. The results were great. Over two months, my M-spike dropped to the lowest it had ever been.
I continued with the treatment, but after about 3 months, side effects started to kick in. Peripheral neuropathy, one of the big side effects of Velcade, started to become more of an issue, staring with pain and numbness in my feet but progressing up into my calf and leg. We tried reducing the dose, which helped a little. Fatigue, another side effect was also becoming a problem. I was exhausted; making it through a day of work was becoming more and more difficult.
Again, I had had a great response to the Velcade, but the side effects became too much to tolerate. We decided to stop the drug.
For the first time, I started to contemplate stopping working. It was one of the most difficult decisions I have had to make, and I will write about next month.
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I understand your frustration completely. My husband, also a physician, was diagnosed with multiple myeloma in July of 2010. He presented with a plasmacytoma at T12 and responded very well to radiation. His blood work was normal except for the M protein which was 1.14. His induction therapy was Revlimid 25mg and 40mg of Dex and Biaxin. He responded very well with his protein was reduced to trace where it remained until his ASCT which was in March of 2011. At his six week check-up his M-protein was .25 and at his 100 day check-up it was at .3! We never anticipated this and are very concerned. His doc wants him back on Revlimid at 15mg and 20mg Dex. This is especially disconcerting because after his stem cells were harvested he was officially in remission after being given the cytoxan. So, he never even had a remission after the transplant. This was certainly not an outcome we had anticipated. He was initially told that his myeloma did not look aggressive and he didn’t have any abnormal genetics. Can myeloma suddenly become aggressive?
Arnie -- You are right (as has been said many times by doctors) that MM is heterogeneous & everyone responds differently to meds & transplants, but your story is similar to mine, and disappointing too that after ASCT (VGPR with M at 0.1), the M spike rose soon at 9 months. At 15 months I tried the Rev/dex for 3 months, but got a DVT & was not responding in the median time. Now I am on Velcade/Doxil/dex and responding just fine. Thank goodness there are choices & a dr. who can come up with something. I go only once a week (ask about this schedule for less toxicity) and the side effect for me is only hand & feet sensitivity to touch (from Doxil). I am not complaining. It's just that we don't know where we are going with any of this treatment, and the only true good thing I experience is living for each day.
Good luck to you. Suzanne
Just read the article and responses with great interest.
I live near Fort Lauderdale in Fl and I am 42 and have been on RVD since March 2011 (Completed 4 cycles 25mg Rev, 40 dex and 1.3 sub q Velcade). M spike satrted at 2.7, then 2.1, then 1.7, then 1.6 and yesterdays results 1.5. So my ONC has decided to switch me to CVD Cytoxab, Velcade and dex). Unfortunately I have also just found out that my Insurance company cictates where I have my stem and my current hospital is not one of them so will likely go to Moffitt in Tampa.
Arnie, who did/do you see at Moffit ?
Michelle Gillet
Dr. Goodman:
I relapsed two months after my auto transplant. I an m-spike of .1 with four more sessions of Dex, Velcade, Revlimid and cyclophosphamide to go. Where I go after that is up in the air.
One of the docs wants me to undergo an allogeneic transplant, even though my only sibling is not a match (I just learned that today.) Another doc wanted me to do the transplant, but only if I had a sibling match. A third said avoid the transplant as it is too toxic and risky.
All of these gentlemen are experts in myeloma treatment and highly respected by their peers. But it is enough to make my head spin.
Hang in there. The right combo for you is out there. I know what you are going through.
Thanks for the column.
Frank
Hi Arnie,
After making the decision to have an ASCT, it must be very difficult when you don't get a stringent complete response for a good long time.
I am so looking forward to your article next month to find out what you did after the Velcade that you are still going strong and sharing with the rest of us in 2011.
Very best wishes.
Linda
I am sorry to hear this news. You are in my prayers that something may break loose.
I was struck by a woman I overheard while waiting for my husband's Bone Marrow Biopsy. She was a long time survivor with MM, but said that the first 10 years she was in and out of treatment and didn't think she would make it and now she hardly thinks about it except that she has to come back for check ups. On the one had I was impressed with her longevity and clearly her joyful life, but on the other hand my head was screaming TEN YEARS IN AND OUT OF TREATMENT! What stamina! And of course you don't know if you persevere if it will matter or not. The unknown of it all is frustrating and stressful.
Hi,
Very sorry to hear about your story. Unfortunately we are also sailing in the same boat. My father was affected my Multiple Myleloma in 2001 but in very initial stage. He was taking oral pills for about 5 years and in 2006 he had to do Bone Marrow Transplantation as the myleloma was no longer obeyed the oral drugs. Last 5 years he was fine and 2 weeks back, started bleeding in nose and mouth. When checked, his blood plattlets where down drastically. So did his Bone marrow test and also FISH test. He is going to meet the doctor today to discuss further... Unfortunately I am sending this msg from Malaysia whereas he is now in India waiting to meet the doctor. Keeping fingers crossed, and to get relived from tension.. I am posting this msg... May god bless all.
Sathyan
Arnie,
I am still suffering from my Peripheral neuropathy after my RVD intitial treatment. I have the numbness in my feet and pain in my calf's and legs. I am currently taking oxycontin for relief. How are you dealing with your neuropathy? I already had one transplant and I am scheduled for a pet scan and bone marrow biopsy in July. I will find out then if I need a second transplant or some kind of maintenance treatment.
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