Too Many Doctors

Last week was a busy week for my doctors and me. Started the week with a trip to MDAnderson in Houston where I met Mike and we had blood work and then met with my doc, Dr. Q. I was nervous about the visit as my IGGs had jumped to 4700 (normal 700--1600) and M spike was 3.1. My red cells have also been dropping; hemoblogin was at 9.1 the week before. Mike took the job of scrivener so I could have a dialogue with Dr. Q. To state the obvious the stabilizing effects of the transplant have disappeared. I haven't shown any response to the Donor Lymphocyte Infusion (DLI) and vaccine. Despite not showing a response I feared I would be withdrawn from the clinical trial and lose the opportunity to receive the vaccine made from my M protein. So, to cut through it: I have been placed back on maintenance revlimid and am still eligible for the clinical trial. I am "debating" the dosage with Dr. Rifkin. He wants me on 5 mg and I want to be on 15 mg. The higher the dosage, of course, the more likely the myeloma will be reduced. Rifkin is concerned that my white count will plummet, as it has in the past, and he will be forced to take me off the revilimid completely. The proverbial Hobson's choice: Low dose revlimid less likely to stop the growth of the myeloma; higher dose more likely to cause white count to drop. We've compromised at 10 mg. Blame it on the mediator in me.

I asked Dr. Q whether Mike's cells had been "coopted" by me and were now incapable of attacking the myeloma. On the contrary, they still have the potential to take down the myeloma, there is just too much myeloma for them to overtake it at this point. Hence, my push for the higher dosage of revlimid.

Dr. Q also went through numerous other options that would be available if the vaccines and the revlimid don't work. Suffice to say MDA is running a wide variety of clinical trials and it sounds lie there are many options on the shelf. While it is disappointing that I didn't get a longer respite following the transplant, so be it. It is what it is.

My hemoglobin was down to 7.7 when in Houston. Thus, when I returned on Tuesday Susan drove me immediately from the airport to the clinic so I could get my blood "typed and crossed" in preparation for a transfusion on Wednesday. I received 2 units of blood on Wednesday. Drs. Rifkin and Q are a bit puzzled by the drop in red cells and are exploring whether it is Mike's red cells attacking mine. Mike's cells need to focus on my myeloma and leave my red cells alone.

And then there's my hearing. These flights really mess up my ears ever since my ear drum burst last June. Only this time it's my right ear. I saw the ENT (ear, nose throat specialist) on Friday and they've documented nerve damage in my right ear and a severe hearing loss since I last had it checked in August. He doesn't really have an explanation, other than drugs, i.e., chemo and current anti fungals and anti virals. I will get hearing aids eventually, but first would like my hearing loss to stabilize. It goes up, it goes down. I guess I need to stay off airplanes. Not much chance of that.

And on a positive note, it feels like my neuropathies are gradually improving. Fewer shooting pains and less frequent numbness. I've reduced my neurontin by 25% to see if I can tolerate a reduction. That would be good.

Despite all this I don't feel too poorly. Still have multiple issues but am gradually accepting them. I do get frustrated with weeks like last, when I spend most days at the clinic/hospital or in some doctor's office.

I think that's enough for now. The ladies in my life are all fine. Unlike me they are hitting the health club with a vengeance. Catherine signed up this year's NYC triathalon and she seems to be starting her conditioning already. I guess that means we'll be in NYC in August to cheer her on.
Love to all,
Dan