We have known for months now that the (unnamed) oral study regimen I’ve been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable. We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra.
Alas, the opposite has happened. Last Friday’s PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max. Further, there is a “tiny” lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2. The study regimen works very well for some people, I’m told, but my myeloma isn’t fazed by it. Of course I am now finished with that regimen, and I have other reasons to be pleased about that.
What’s next? I don’t know yet. Happily there is no emergency – according to the doctors all three of the lesions are still small and unlikely to cause a bone fracture soon. Two doctors at Mayo have agreed with me that Kyprolis and Pomalyst together might be a powerful regimen for me, but one of those doctors said, “that combination will always be available,” encouraging me to enter a trial of something new instead. Moreover, Kyprolis (carfilzomib) is an injection/infusion on two consecutive days each week, for three weeks out of each four, so I would have to arrange my marathoning schedule to be home for that.
Pomalyst gave me a wonderful seven-year ride as a single agent, and I started on it as part of an early study. I would like to do that again – who wouldn’t? Right now two of the best myeloma specialists on the planet are researching studies that might be appropriate for me, even looking into a particular one that is currently not recruiting. I expect some news from them soon, perhaps today.
Most certainly I will blog about it.