Perhaps the title of this column more appropriately should be "Life After CRD," since I've now completed 24 cycles of Kyprolis ^[1] (carfilzomib), Revlimid ^[2] (lena­lido­mide), and dexa­metha­sone ^[3] (Decadron), commonly referred to as CRD, as part of a clinical trial for newly diagnosed patients.

However, since dexa­metha­sone seemed to be the predominate source of my side effects, and be­cause I liked the play on words, I went with the title as shown.

So, I've completed the clinical trial, I've reached stringent complete response, and I've won the first battle in my war with multiple myeloma.  But make no mis­take, this war is far from over and my next tactical decision has been to decide whether to continue with maintenance therapy ^[4].

The major advantage for going with maintenance therapy, which in my case would be 10mg of Revlimid taken days 1 through 21 of a 28 cycle, is the potential for extending remission.  Results from three recent studies all show an approximate 18-month increase in the median progression-free survival (PFS) for patients on Revlimid maintenance.

Obviously, 18 months is a significant improvement.

There isn't enough data on CRD yet to determine the median PFS, but based on results to date, CRD appears to be providing responses comparable to, and possibly better, than Revlimid, Velcade, and dexa­metha­sone (RVD) and to high-dose chemotherapy followed by stem cell transplantation, each of which have a median PFS of about four years.

Individual responses may be better or worse depending on a variety of factors such as age, depth of re­sponse, and the presence of chromosomal abnormalities.  In my case, I have none of the negative factors, so I am hoping my response will be considerably better than the median, perhaps six years or better.  There­fore, I might be looking at the difference between six years or seven and a half years of remission depending on whether I go on maintenance.

So what are the potential drawbacks?

First is the risk of secondary cancers ^[5] from long-term use of Revlimid.  One study found the risk of secondary cancer increased from about 3 percent to about 7 percent for patients on Revlimid maintenance.  However, that increase was associated with patients who had undergone a stem cell transplant following treatment with high-dose melphalan ^[6] (Alkeran).  No evidence was found to show the risk of secondary cancer in­creased following treatment with novel agents as in my case.

Second is the potential effect of prolonged Revlimid usage.  I've been on chemotherapy for two years, pump­ing my body with poison.  Is there a possible long-term toxic effect if I continue with Revlimid?  I brought this up with my doctor, and he indicated that long-term use of Revlimid could com­pro­mise my bone marrow and affect its ability to produce white blood cells and platelets.

Third is the chance of building up resistance to Revlimid.  My doctor also confirmed that if I relapse on maintenance therapy, chances are I would be Revlimid resistant at that point, which would affect my options for my next line of treatment.

Finally, there are the side effects associated with Revlimid.  Most notable of these are low white blood cell counts, low platelet counts, gastrointestinal issues, rashes, blood clots, fatigue, and possibly respiratory issues.

The potential for secondary cancers does not concern me much since the percentages are relatively low, and the risk does not appear to be an issue given my type of treatment.  However, the potential for com­pro­mis­ing my marrow's ability to produce white blood cells and platelets, and the risk of developing resistance to Revlimid and limiting my options for subsequent treatment are concerns.

I have thought about these pros and cons a lot over the last month or so, and the decision was not easy to make.  In the end though, I have decided to go drug free and forgo maintenance therapy.

I should also note that before I made my decision, I also discussed it with my wife, since as my primary caregiver she is the one that will be impacted most besides myself if I relapse.  This needed to be a joint decision, and she is behind it 100 percent.

I realize this is not the same decision someone else might make, but I would rather have six years without side effects, without the risk to my bone marrow, and without the risk of building resistance to Revlimid, as opposed to an extra year and a half of remission.

Perhaps six years from now if I relapse I may feel different, but I have made my decision, and good, bad, or indifferent, I will live with it.

Peace, and live for a cure.