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Dr L called this evening and we had a wonderful conversation. Some points:
- This may mean that the myeloma has mutated in that location, or that a pre-existing clone, resistant to Pomalyst, has finally raised its ugly head there.
- Either way, this lesion has to be treated, both to protect the spine and to keep the new clone from taking over.
- There is no way to know how fast the lesion is growing, so sooner is better than later.
- The lesion is not accessible by needle (for a biopsy or for treatment), because the lungs and aorta are in the way from the front and side, and the spinal nerve bundle and bone prevent access from the back.
- Dr L didn't think it was a good target for radiation therapy, feeling that a systemic treatment should be tried first.
- This lesion probably cannot be seen by x-ray. The hole in the bone might be seen by CT-scan, but that wouldn't show whether the myeloma was still active, so the only way to confirm a successful treatment will be another PET scan showing that the sugar-sucking bright spot is gone.
- The study started with Pomalyst and dexamethasone, so why not just add DEX back to the regimen? This would be the most conservative approach, but I'm not enthusiastic about it because I think the bright little lesion needs more aggressive treatment. I really really want to stomp it out. Really.
- How about adding a few cycles of Kyprolis to the Pomalyst (with DEX), and then going back to Pomalyst maintenance if that regimen succeeds? This approach might work, as Kyprolis and Pomalyst are a very potent combination.
- There is a study of Ixazomib (MLN9708) with DEX at Mayo Clinic. Ixazomib is a new oral proteasome inhibitor which appears to be very active against myeloma with few side effects. The study regimen includes DEX, but not Pomalyst. Mayo is checking to see if I am eligible.
How to choose? My personal goal is to stay alive and competent for as long as I can benefit my wife and daughter. I believe that's my purpose here on earth, so all medical decisions are made with the advice of a great doctor and with that goal in mind.