Last week marked the six-year anniversary of my diagnosis of multiple myeloma.  The occasion was marked, not by a celebration, but by a trip to Boston to talk with Dr. Ken Anderson about the next step in my treatment.

The last six years have been filled with ups and downs.

As I am always reminded, myeloma is a very heterogeneous disease and behaves differently for everyone.  Some people seem to have periods of very long responses to treatment and periods where the disease is well controlled.   It seems that was never really the case for me.

I was initially treated with vincristine ^[1], doxorubicin ^[2] (Adriamycin), and dexamethasone ^[3] (Decadron), known as VAD, and a stem cell transplant.  I had a good response to the treatment, but I never got a complete response (or remission as some people like to call it).  At that time, maintenance therapy with Revlimid ^[4] (lenalidomide) was not yet in vogue.

I was told “mean time to relapse is 18 months to 2 years.”  At 10 months, my M-spike started to creep up, and I began Revlimid and then added dexamethasone a couple of months later.

Since then, it has been continuous medications and treatments. These have run the gamut, including Revlimid, dexamethasone, Velcade ^[5] (bortezomib), and various combinations. I was in a clinical trial with pomalidomide ^[6], and I had a second stem cell transplant last year.

I have had several relapses, which fortunately always seemed to respond to treatment.

Each relapse, however, is a nerve-wracking experience.  The thought process is always the same.  It seems that this is it, the beginning of the end.

We were always able to come up with a new plan, which made me feel a lot better, and I was able to turn the corner.

I called my column ‘Arnie’s Rebounding World’ because I seemed to respond and rebound after each relapse.

But myeloma is always present.  It is the elephant in the room.  It is always on my mind and plays a role in almost every decision I make.  It is difficult to plan ahead, not knowing what the next treatment will be.

Multiple myeloma takes its toll.  A physician once told me that between the disease itself and the treatments, it wears you down.  I am certainly not what I was six years ago.

Don’t get me wrong, for the most part during the last six years, the treatments have allowed me to have a pretty good quality of life.  Except for some intermittent down periods, I have been able to remain physically active and continue to enjoy many of the things I like to do.

I have had wonderful quality time with my family.  When I was first diagnosed, my son was in 8^th grade and my daughter was in 4^th grade.  I remember thinking, “If I can just make it to see my son graduate high school…”  He is now finishing his sophomore year in college.  My daughter is now a sophomore in high school, and I have to make it to her graduation.

For all these things, I am extremely grateful.

Looking forward, I feel like I am at somewhat of a crossroad in my disease, and the path from here is much less clear.  I have exhausted all of the standard treatments available.

I know that with each relapse multiple myeloma becomes less responsive and harder to treat.  The pace of my disease seems to have quickened.  The relapses are more frequent and more aggressive.  None of this is a good sign.

I have once again been able to get my disease under control with a couple of rounds of chemotherapy with dexamethasone, cyclophosphamide ^[7] (Cytoxan), etoposide, and cisplatin, known as DCEP, but this is a temporary situation.  So what is next?

There is no question that there is an abundance of new drugs in the pipeline.

Of course, there are clinical trials, but this is not as simple as it sounds.  Most are far away and require significant travel.  Inclusion and exclusion criteria are very specific, and I may not qualify.  Many trials involve randomization, meaning I might not even get the trial drug.

Despite the hype, it is also not clear to me that these drugs represent advances and breakthroughs significant enough to help me in the long run.  It seems the duration of the responses are fairly short, and the problem of acquired drug resistance has not been solved.  Despite the hype, it is also not clear that these new drugs will come soon enough.  Witness how long it has taken to get carfilzomib ^[8] (Kyprolis ^[9]) approved.

Even the experts disagree.  While we are trying a somewhat out-of-the-box cocktail of Revlimid, dexamethasone, and Zolinza ^[10] (vorinostat) as a short-term fix, Dr. Anderson is recommending an allogeneic (donor) bone marrow transplant.  My other doctors at Moffitt think this is a bad idea. I’m still trying to figure it out.

I am curious if any readers have any experience with a donor transplant.

So, I am still looking for the answer and still looking forward to making it to my daughter’s high school and my son’s college graduations.