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 ^[1] (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 ^[2] (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 ^[3] (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.