Now that the radiation is done, I have consulted a myeloma specialist in LA by phone, Dr. James Berenson. He treats “metronomically” (i.e. low dose) like Dr. Chen does, and has put me on a chemo regimen for the next six months to address these plasmacytomas. It’s quite interesting that Dr. Chen has come up with an almost identical protocol on his own, but with different timing. Since Dr Berenson has done this with hundreds of patients, I talked Dr. Chen into doing his version. It’s a 28 day cycle, 14 days on, two week BREAK (yes!!), using lower doses of Doxil/Velcade/Revlimid and Dexamethasone.
I had a rather rough first week (the Doxil caused a bad rash which I’m having to take steroids for, and the Velcade caused low blood pressure). But entering the second week now, the BP seems to be normalizing and the second round of Dex is holding the rash down. This isn’t fun. I spent an hour in bed this morning (sleepless from the Dex) planning all the things I can do to restore my health during the two weeks off. Have got Vitamin C infusions lined up, and an acupuncture session, and think I will also add a colonic, as these drugs really stop things up, need to move these toxins out.
So that’s the regimen for now. More updates later. Wrestling with ever-slippery wily myeloma cells seems to have become my life these days. But I’m grateful for the functioning I do have, and for the good medical treatment and wonderful insurance (Medicare plus supplement, supplement paid for by a grant from the Leukemia & Lymphoma society, making my co-pays for this incredibly expensive treatment absolutely zero). Medicare for all should be available to all citizens of this country (like every other civilized country in the world).
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