Not Dead Yet

Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that's well over 16 years ago. My family and I go to two different support groups, and I get celebrated as one of the long-timers. I like that, so very preferable to being dead, I think.

I've been on Pomalyst (Pom) since March of 2008, with the exception of one year when the Pom trial ended. Trials of three different experimental regimens failed me then, but Darzalex became approved and the combo of Darzalex, Pom, and dexamethasone (dex) brought my numbers way back down. Eventually we eased up a bit, gradually dropping the dex altogether and reducing the Pom from every day to 21 days out of 28. That may have been a mistake.

Mayo Clinic Rochester MN

IgG and M-Spike stayed way down for three years, but last spring my shoulder began to hurt and my lambda light chains crept up almost to the top of their range. A PET scan showed a bright, colorful lesion in the right scapula, even though IgG and M-Spike said nothing about it.

The radiation treatments started the very next Monday, 10 daily sessions with breaks only for weekends. When that doctor heard that I was 16 years from diagnosis, he allowed that my myeloma must be "indolent," like a lazy schoolboy. Well OK, but here it was threatening the use of my right arm! Happily, the PET scan after that treatment showed only a very small lesion remaining in the scapula. Doc did good.

I'm back on Pom every day, Darzalex once a month, and dex 12 mg/week. The arm feels great, IgG and M-Spike are fine, and lambda light chains are right in the center where they belong. We'll find out more with another PET scan in March at Mayo Clinic.