Before I started the current regimen, a Pet Scan last April 9 displayed five different lytic lesions, three of them in the spine. Last Wednesday's PET scan showed that all five lesions are significantly decreased, and most are gone. One isn't even mentioned.
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.
