You wrote:
When I was at Kings, I got talking to 2 patients with myeloma. One had an allogeneic transplant 8 years ago and has just relapsed, I did ask him if he was in complete response before the allogeneic transplant went ahead, and he did say "No," as his myeloma was getting out of control and he had no choice. Maybe that's why he relapsed as he was not in complete response (CR)? The second patient is 10 years since his first stem cell transplant only and no signs. I thought get your head around that then Dean. The world of myeloma is unbelievable. You just have to go with what you think is right for that time and it's horrible that we have to make life-changing decisions. Myeloma is such a unique disease. This is one thing I have learnt since my diagnosis.
I can relate 100% with that post. I kept thinking that I only had one chance to be cured and that was to do the allo transplant early. What I did was I looked at how patients lived who were alive beyond 5 years and I decided that I did not want to live like the patients who were trying to "control" the disease. I think the reason you see younger patients going out of their way to look at the negatives / look at data that is not applicable to a patient doing the transplant in remission in 2016 is that they would like to have the outcome the allo can provide (cure with excellent quality of life) but are trying to justify in their own minds why they are not having that outcome if they are a young patient with a donor. I thought I would feel worse if I relapsed and had not done the allo than if I had a problem from the transplant. Allos are for patients that think long term. I do not worry about short term (3-5 year) studies.
Patients that are not in remission are more likely to relapse than those that are at the time of transplant. That has been known since the 1970's. It is only recently that myeloma patients had a good chance to get into remission prior to doing the allo. Acute leukemias have had drugs that could get patients into remission for decades, that is why so many more of them are cured via allo transplant. Basically you use drugs to de-bulk and than you use the immunotherapy of the donor immune system to kill off the cell(s) the drugs do not kill and than the donor immune system maintains your response.
I view myself as being in the same position as someone that never had myeloma – I have no sign of the disease and I have a healthy functioning immune system to maintain it. That is basically what the studies JimNY posted show – patients that are not responding / do not have good drugs to get them into remission prior to the transplant are not likely to have an optimal outcome when doing an allo.
It was an easy decision for me because my overall survival was likely to be in the 18-month range. I see more upside today to doing an early allo than I did 6 years ago. It is known that Revlimid has enhanced activity in patients who previously did allos. There is no data yet, but it is very likely Darzalex and Empliciti will work better for a patient who has done an allo since they have immunomodulatory properties.
Good luck with your decision and you are doing the right thing in seeking out patients who previously did one as opposed to patients who have not done one. I was fortunate to have a doctor who offers her patients the opportunity to have the best outcome and does not make them settle for going down the "control" path with constant relapses, reduced quality of life, etc.
I just have to say it one more time. I cannot understand how a therapy that has cured thousands of blood cancer patients and patients with sickle cell disease and other auto immune disorders is viewed in a negative way. Call me crazy, but I view curative immunotherapy in a very positive light.
Mark