I have received a number of supportive emails, following yesterday’s post about what I can my “inelastic bone marrow.” Let’s face it. It is pretty pathetic that even following more than a week’s rest and a neupogen shot, my absolute neutrophil count (ANC) wouldn’t budge.
I’m not big on repeating my past myeloma history, but in this case I think it could be instructive.
Back in 2007, I started on 25 mg Revlimid–21 days on and 7 days off–and 40 mg dex weekly on the same cycle. At the time that was a bit radical. Revlimid had just been approved for use in relapsed patients the year before. And it’s hard to believe, but patients had been forced to take 80 mg of dexamethasone weekly up to that point. But studies proved “low dose” dex (40 mg) worked as well or better than the previous standard of care (80 mg) just in time.
After three months I became neutropenic. In other words, my ANC had dropped below 1.0. But the combination was working well. My doctors dropped my Rev dose down to 15 mg. and that helped. My M-spike dropped from 3.4 to 0.6 over those three months too, which is exactly what we had all hoped. So I chose not to transplant and continue on Rev/dex for a while.
My ANC count did recover. But my red count started to drop, most likely as a reaction to using dexamethasone for over a year; I had started using dex immediately after my diagnosis. But my M-spike was now down to 0.4 and everyone was pleased.
A few months later I achieved a complete response (CR), which held for almost three years. I was on Revlimid maintenance at that time (no dex) and my white and ANC counts did trend low. But every time I took even a few extra days off, my ANC recovered.
On the advice of Dr. Durie after a consult two years ago, my Moffitt Cancer Center specialist, Dr. Melissa Alsina, cut my maintenance regimen down to 5 mg two weeks on/two weeks off.
Six months later I slowly began to relapse.
While it is true that after four years using Revlimid my ANC count was recovering more slowly, I was never in a position where it wouldn’t bounce back a full point or so after a week off.
But post transplant, all of that has changed. Now even 5 mg of Revlimid is becoming too much for my battered bone marrow to handle. Which is a shame, since my transplant seemed to hit a “reset button” for me and Revlimid. I was refractory to it prior to my SCT, but it seems to be working again now.
So what does all of this mean? I shared yesterday that both of my docs here in Florida are concerned. What do they think could be causing this inelastic response and inability for my bone marrow to recover during my weeks off.
The simplest, most likely and hopeful reason, is my body simply can’t tolerate Revlimid anymore. While that wouldn’t be good news, its manageable, right? You know the drill–lots of other drugs and drug combinations I could try.
Another far less likely possibility is my bone marrow could be full of plasma cells and unable to produce enough white blood cells. We can all guess that’s not the case with my zero M-spike (I love the sound of that!) and no specific new bone pain.
The third and unfortunately plausible explanation could be that I have started developing myelodysplastic syndrome (MDS). MDS is a precursor to acute myeloid Leukemia (AML). AML is a serious form of leukemia, controllable in some and fatal for others. Catching it early helps, but long suffering myeloma patients with compromised immune systems…
Well, you get the idea.
Yesterday I wrote:
So what’s going on? Why is my bone marrow so inelastic now?
It’s the Revlimid, right? Partially, of course. But both of my docs–Dr. Malhotra, my medical oncologist, and Dr. Alsina, my myeloma specialist–are concerned that my lagging white counts might be pointing to something more serious.
They are so concerned that both feel I should undergo a bone marrow biopsy (BMB) soon. Dr. Alsina mentioned that when I saw her briefly two weeks ago. And Dr. Malhotra came to the same, independent conclusion a few days later.
While speaking with Dr. Malhotra’s physician’s assistant (PA) Ann last week, she let slip what I know both docs suspect: MDS.
While this may be a bit premature and overly dramatic, I would like to note for the record that Dr. Alsina emailed me today, asking if I would like her to schedule a sedated BMB right away.
Actually, I think this is a great idea. Why not have the results for when I meet with her the morning of November 5th, just before I board a plane headed to Boca Raton, Florida for a support group meeting later that evening.
WOW! That should be an exciting day! My BMB results, a trip to southern Florida (I’ve yet to visit that part of the state) and the day before the presidential election.
What could go wrong, right?
Feel good and keep smiling! Pat