You wrote that:
"At both the University of Minnesota and Mayo transplant centers, they said that with his high-risk myeloma mutations (not even taking into consideration the other cancer since it's so rare they don't have statistics), he has about a one-third chance of being alive and with the myeloma in remission in two to three years."
What you should do is ask them how many of those transplant patients did their transplant as part of upfront therapy and how many were in CR at the time of transplant. I would also ask them when was the last time they transplanted a myeloma patient in CR1? They are quoting old statistics that do not take into account that patients can achieve CR prior to transplant now that we have better drugs. If you read my posts you will notice that I give Velcade a lot of credit for the excellent outcome I am having. The reason is it greatly helped in getting me to CR prior to doing my allo.
While I have remained in an MRD negative response since my allo and needed no further therapy, novel agents (Revlimid in particular) are very effective after an allo. The monoclonal antibodies should be as well, though I have not seen any data on that yet. I would ask them how they are planning on incorporating the novel agents into your treatment plan and how much benefit they will provide you. It sounds like the doctors you have make the same mistake many of the posters here make with regard to allo transplant. They look at the statistics in a vacuum and fail to look at the synergy between the therapies we have available as myeloma patients today.
You also mentioned that your husband may have a female donor. I also had a female donor. It has been shown in myeloma and other blood cancers that male patients with female donors have less relapse risk than male to male transplants. Those are things you cannot capture in general statistics that were quoted to you.
What gave my husband pause was the quoted 15-20% mortality rate and the ~40% chance of graft-versus-host complications, the latter of which we have been warned can drastically affect quality of life.
I would ask them why they think a 40% of extensive chronic GVHD is acceptable in 2016. Dr. Sergio Giralt, who was Robin Roberts transplant doctor and you can see how well she is doing, wrote this paper in 2012.
"Both of these reports suggest that we have strategies that can replace the current standard of CNI and methotrexate combinations for the prevention of acute and chronic GVHD, and we should no longer consider a 40% risk of chronic GVHD acceptable.12 The BMT CTN has demonstrated that large complex multi-institutional trials can be performed in North America, and these trials can produce results that change clinical practice."
Reference: Giralt, S., "Graft-Versus-Host Disease: Have We Solved the Problem?," Journal of Clinical Oncology, Sep 2010 (full text of article)
As an example, I had a female donor and a female donor to male recipient is associated with a higher risk of extensive chronic GVHD in the past. Because of the way my doctor did the transplant in 2011 she estimated my chance was 10%. I had (very) limited chronic GVHD for one month and it has gone away and never come back.
Mark
