Stable:
Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months. That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago. M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday. IgG was 536 mg/dL, about where it has been for more than a year. This is wonderful.
The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month “until disease progression.” So far so good. Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I’m still out soon after noon. Some people bring a book to read – I bring my laptop and it’s no problem at all.
I take it easy for the rest of the day, and life is back to normal the next day. Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex. Life is good. 28 Infusions of so far – I wonder what my life would have been like without that potent, innovative new medication.
Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years. For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG. Perhaps we’ll reduce it more, we’ll see.
PET Scan:
This was encouraging too. “Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions.” In other words, the old myeloma hot spots are gone and there are no new ones. Three other findings were worthy of note:
- Some inflammation at the bottom of the esophagus. This matches my own symptoms of occasional acid reflux. Something to deal with.
- Stable, chronic thyroiditis. Yup. Dealing with it.
- “Reactive FDG activity at the origin of the right hamstrings.” No kidding! I’ve been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it. He’ll be happy to hear that the PET scan confirms his diagnosis. Cool! I’ve requested a disc with the actual PET images (always do), and can’t wait to see it myself.
Transplant:
In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable. I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not. I’m already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline. By the time those options are exhausted, I’ll hopefully be too old for any transplant doctor to consider me a good candidate. So now my goal is to become the myelomiac to live the longest without a transplant. Well, somebody’s got to do it.