HI Paul!
Thanks for your kind words. And excellent question!
Many folks -- including Dr. Danielle Townsley at NIH -- believe there is a "sweet spot" for MDS transplant, not too early and not too late. That sweet spot is when the disease begins to move from low risk to high risk and head toward AML.
Some of the pioneering work on this idea was done by Dr. Cory Cutler fifteen or so years ago. His research found that the best overall survival was obtained by transplanting at progression. Transplant related mortality is too great a risk for low-risk patients, who can survive for years with supportive care and other interventions like immunosuppression and Danazol. But transplanting is more risky once the patient has moved into AML. So you have to try to hit the sweet spot. There's a good respective and updates in a Cutler article
here.
Townsley actually used the term "sweet spot" when she delivered her advice on my situation.
When I was first disgnosed, my local hematologist immediately set me up with an appointment for a port placement so Vidaza could be started, as well as a transplant consult. I visited with the transplant doc several times. And I started my own research. I found that transplant is risky and disruptive, the risk of relapse is high within five years, and that many folks, in addition to Cutler, felt it is not wise to transplant low risk MDS patients.
I found about immunosuppression and the Camapth trial at NIH. Talking with the principal investigator on that trial, Dr. Matthew Olnes, I found him strongly opposed to transplant for low risk, younger patients.
NIH is the pioneer in immunosuppression, and the Campath protocol seemed to hold more promise than ATG or Cyclosporine. So I went down that road.
As a result, I have had six years of remarkably good health -- which is likely more than I could expected from transplant.
But, as Dr. Townsley made clear, now is the time, and there is no reasonable alternative.
Thanks for your well wishes!
Greg