Our family came to Utah for Spring Break and for my quarterly testing at Huntsman. I did another bone marrow biopsy and lab work with an MRI thrown in last week. I met with my Utah doctor yesterday and my numbers are showing that I am in remission! Hurrah!
This is great news and we are thrilled. My Huntsman doctor says that he has gotten over a third of his patients in remission for 8-10 years doing the double transplants. He is waiting on further data to come back, but he believes that this number will move up to 0ver 44% when it does.
There is some debate about multiple myeloma treatments in the MM community. Some doctors favor the double transplants with 3 follow up drug combinations following the transplants. The double transplants are the protocol norm in Europe. Some doctors favor a single transplant with the same three basic drugs. Some doctors favor just using the three drugs without a transplant. This debate can be very confusing for patients. It seems that the problem in determining the most effective treatment is being able to follow the patient for more than 2-3 years. As I understand it, it is rare for doctors to have data for their patients beyond this point. The key question seems to be: How long have you followed your patients?
To really see which treatment is most effective, you need to follow them for 10+ years, not just 2 or 3. The effective myeloma drugs (which came out 8-10 years ago) can alone keep myeloma patients alive for 2-3 years. It is more important to know if a patient relapsed, had to come in for another transplant (or a third) and what the long-term treatment was to keep them alive. My Utah doctor says, “Show me the data.”
I was also happy to learn more about my genomic testing. There are 7 different types of multiple myeloma, all with a different gene mess-up. Mine is the MAFB 14-20 gene, which means that part of the 14 chromosome is stuck to the 20 chromosome and part of the 20 chromosome is stuck to the 14 chromosome. The newer MM treatments are headed to be more personalized, depending on which gene problem you have, so it is good to have this information.
We are happy to be in Utah, happy to have great news about my treatment, and happy to be together!