That’s my number.
It is test and doctor visit time, post transplant, for me. I had my meeting with my new myeloma specialist today. My old one left to go work for a drug company, so I had to get a new one, which was a bit of a challenge to get, surprisingly.
In my post transplant meetings with Stanford, the doctor kept repeatedly recommending I go on Revlimid for maintenance. In all my meetings with that doctor, I always had the feeling she would rather be off working on her projects, rather than working with patients. “Revlimid is what is normally done post transplant.” Her recommendation of revlimid, showed me she didn’t actually take the time to read my file.
To be fair, she is a transplant doctor and not an oncologist or myeloma doctor, but still, it would have been nice for a little effort on her part.
I finally had to say, “My case is not the typical myeloma case. I’m four years into myeloma and I’m just doing a transplant now. I’m already refractory to revlimid.”
“Oh really!?” She replied, looking flustered, rapidly clicking on her computer, and started trying to recover. “Let me review your case with one of my colleagues and I’ll get back to you.”
I tell you, it’s hard enough dealing with cancer without trying to manage your doctors!
Hence, my reason for paying out of pocket for a myeloma specialist at a different medical institution. I’m really glad I did. This is only my second meeting with a specialist, a year apart, and I can tell their myeloma knowledge is significantly better than my other doctors.
This new specialist told me almost right off the bat, that he is the leader in MRD (minimal residual disease) research. A mrd test is the best test you can have done for blood cancers, looking for remaining cancer cells. I’ve been pestering my regular oncologist for this test and he finally ran it with my last bone marrow sample. I’ve been waiting and waiting for the result, and I guess the specialist had it.
3 myeloma cells in 2,600,000 normal cells. My goal was zero detectable cells (MRD negative or MRD zero), I might as well swing for the fences. Second best is 1 in 1,000,000. I almost hit 1 in a million, just missed the mark. Anyhow, he was quite pleased with the numbers. His goal is to get me to MRD zero.
Although, I was thinking about the MRD test. It is only a sample of the marrow from a specific section of your bone where they pull the marrow from. So you can have different values at different spots in your bones. MRD positive in your left hip, MRD negative in your right. So I guess the MRD result is essentially flawed from the beginning. But I suppose it gives the best idea of what’s generally going on, since blood tests aren’t this sensitive.
I was thinking of the analogy of a city. If I had a city with a population of 2.6 million, and three of those people were crappy people, I would be doing pretty well. My city used to have a lot more crappy people in it, so I’m glad they are gone, but I still have work to do.

My regular oncologist recommended using carfilzomib as maintenance. I was on it prior to transplant, so that makes sense to me. The specialist recommended a higher dose, saying what was recommended wasn’t going to get it done. He also added cytoxan pills, I was also on that prior to transplant, which I’m not too excited about. It’s not an intelligent drug, and it just kills everything. I guess it’s all the lesser of two evils, maintenance versus active myeloma.
I think I’m going to be a bit more beat up from this maintenance than I was originally thinking, which is a bit of a bummer for me. Hopefully we can lessen the drugs over time….











