This is excellent news. We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn't guarantee freedom from bone damage. With these PET results, we can be pretty sure that no damage is occurring. As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra - looked like about BB size - damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.
So what is this potent regimen? Please note: I am not a doctor. This is working for me, but might not for you. I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab). At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart. According to the Darzalex prescribing document, these monthly infusions continue "until disease progression."
PET Radiology Report |
With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion. I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly. He voiced the scenario that I have feared from the outset - a broken vertebra would most likely put an end to my running lifestyle. As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further. DEX is no fun, but 8 is better than 12.
Overall the news is good, and life is great. Before long we'll be off to Philly, to run the 100th marathon with myeloma.
Great news Don. Enjoy the Philly marathon.
ReplyDeleteDon;
ReplyDeleteJust for clarity's sake: You take pomalyst continuously, without a break, as you say 28 days out of 28? And, then you skip the Dex on the week when Dara is infused? Also, is this a clinical trial at the Mayo or is this FDA approved and therefore allowed by Medicare?
Hi John,
DeleteYou have it right 2 mg Pom every day. I skip DEX on infusion weeks because the Darzalex is given with 60 mg of prednisone, which is equivalent to about 12 mg DEX. I don't have Medicare Part D - just a supplemental with prescription coverage.
Thanks Don. Now I clearly understand. Hope it goes well for your 100th marathon! 😅
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