Statistics on Center Success Rates
 

Does anyone know of a source for statistics on centers that perform stem cell transplants? I would like to compare the number of transplants done, the age of the patients, type of stem cells used (matched sibling, MUD, umbilical cord), success rates, etc.

Thanks

Data

Data for "Data"
 

I suggest using the links on this page for transplant center statistics:

https://bethematch.org/for-patients-...er-statistics/

You might also be interested in survival rates for various conditions at

http://bloodcell.transplant.hrsa.gov.../survival.aspx

Ray

Data,

The link that Neil provided is really pretty good. I have gone up and down this one a hundred times. it has a cool feature in that it breaks down by disease and by related vs unrelated donors. It also gives information on how the institution does compared to what is expected which is neat because it gives us a risk adjusted return so to speak on how the institution performed. Because there are so few transplants performed, I would normally combine all of the MDS categories, an age range above and below mine, and then also sometimes include AML and/or myelofibrosis results as the transplant processes tend to be very similar, and I was looking to get some semblance of statistical validity.

Exactly what I needed
 

Neil, Dan, & Ray,
Thanks!!! That is exactly what I needed. My doctors are recommending either Vidaza or a transplant I am having a extremely hard time deciding between those two options and doing nothing except blood transfusion when necessary.

Thanks again for the input

Data

Data, my situation was both Vidaza and transplant. The Vidaza put my situation into the optimum condition before the transplant. My counts and blasts were greatly influenced by the Vidaza. I believe that it is very important to go to transplant in the very best possible health.

I agree with Bailie 100%. Studies have shown that Vidaza BEFORE transplant is ideal.

http://www.mdsbeacon.com/news/2014/0...tic-syndromes/

My dad had Vidaza for 6 months before the transplant which put him in complete remission. Going to transplant in CR is ideal because it lessens the relapse rate and in optimum health.

I did some pre-transplant vidaza as well - only two cycles. I also did 6 cycles post-transplant. I had virtually no response the first time around, the second time was pretty effective. I have not had any vidaza since February of this year - counts have done pretty well - mostly dealing with GVHD.

As for the Vidaza vs transplant - I am a fan of the maximization strategy - go as long as you can without it, take it for as long as it works and is helping you, go to transplant before the effectiveness wears off. There has been an algorithm built on lifespan (i do not like such things, but they are useful) that shows the best way to maximize lifespan based on available medicine and health status of MDS patients that more or less follows what I noted above.

here is an article that goes into some detail.

http://www.mdsbeacon.com/news/2013/0...fe-expectancy/

I hope this helps.

I appreciate the comments
 

I really do like this forum because it gives us a chance to share opinions as well as experiences. Dan, I agree with your "maximization" strategy only I think I am trying to maximize quality of life not quantity. I did the same thing when I was diagnosed with prostate cancer. I wanted to wait a while and most everyone was convinced I had a death wish. It turns out I delayed having treatment for 14 years. That also delayed the side effects 14 years. I still haven't made up my mind what I want to do. I have an appointment in early December to discuss my latest biopsy which also looked at gene mutations. I know I have to decide soon but this has been the hardest decision of my life. Again, I appreciate everyone's thoughts!!

Cheers

Data

I didn't have much choice. I was in the high risk category primarily because of age and genetic mutations. It wasn't a choice between "quality of life" versus "quantity of life". The choice was did I want to live or die. At certain stages/types MDS becomes very aggressive and relentless. From the study that Dan posted:

"donor transplantation should not be delayed for eligible patients with intermediate- or higher-risk disease according to the IPSS or WPSS. The study investigators explain that donor stem cell transplantation is most beneficial when performed before MDS progresses to advanced stages of the disease.
With respect to the treatment of MDS patients, the study’s lead investigator Dr. Mario Cazzola of the University of Pavia in Italy said, “At our institution, we are now recommending transplantation early in intermediate-risk stages.”

"For patients classified in the lower-risk IPSS and WPSS groups, the researchers’ models indicate survival would have been the longest with stem cell transplantation postponed until the patients progressed to intermediate-risk MDS.
However, patients who were at least 60 years of age and were low-risk according to the WPSS would have benefited from immediate stem cell transplantation
Intermediate-risk and higher-risk patients also would have benefited from immediate stem cell transplantation.

Interested in your statement that even low-risk patients if they are 60+ would benefit from transplantation, Bailie. I haven't heard that before. I'll raise that with my haematologist when I see him in January.

I'm interested in studies which show results 3+ years after transplant. It can take that up to that long to get through the GVHD and get off the drugs. Anyone aware of longer term studies?