Stem Cell Transplants

[Paul123456]

mpnforum.com/nicrev

Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing.

I thought quite reassuring, especially since odds improving all the time. Five year survival rates are based on transplants pre 2013.

The odds and risks should be even better by the time most of us on this Board require SCT. My Hem, who by chance is a leading STC specialist, said I may never need a STC thanks to new drugs in the pipeline. I’m PV/MPN-U, JAK2, TET2, WHO 1 and Allele Burden 75% FWIW! He said current survival rates 90% if related donor, 80-85% unrelated. I need to check over what time interval.

[Meatloaf9]

Thank you for posting this Paul, you are very helpful.

[crapaud]

Very interesting and 'non-emotional'.

Two elements that are difficult to integrate are :

i)personal 'gut feeling'

ii)'stick or twist' - if you go for a SCT early then you increase your chances of a good survival (you are younger, your illness has progressed less, so chances are better); if you wait, you can benefit from the here and now, treatments could potentially improve and evolve, but how will the illness evolve?

As the article points out, there is no 'good/bad decision' - it's a gamble having a SCT, but it may also be a gamble waiting perhaps too long.

Sometimes a crystal ball could be helpful!!!

I personally undertook my SCT relatively early in my illness and relatively young (53).

Almost 3yrs now - hope and expect to do a lot better than the 5yr median. Recently met up with a lady at my local hospital where I had my SCT who is into her 30th year.

Always available to exchange 'notes' if anyone needs to.

Gary

[amalekh]

Very helpful article, thank you Paul.

I'm currently under study supervised by Dr. Kröger, and waiting for SCT donor, I hope I get a match from one of my brothers and sisters.

Malek.

[Paul123456]

amelekh

Do you know your DIPPS score? Are you early stage MF, Int 1, Int 2 or Late Stage?

Best wishes Paul

[JediReject]

Thanks for this Paul , still interested to read articles even post SCT. I hadn't heard the term Graft Versus Myelofibrosis but understand how important it is as my consultant told me that MF needs a strong Graft to eradicate the disease and the onset of post transplant Graft Versus Host Disease is a good sign that the new cells are invading. Unfortunately I had severe GVHD which very nearly beat me and so am still on immuno-suppressants whereas most successful transplantees would have stopped them much sooner.

With transplant there are so many variables and you have to take your chances. But the process is being constantly tweaked and they are working to identify those at higher risk of severe GVHD to treat them beforehand to lessen their risk.

Hopefully as you say you might never need to find out.

Cheers Chris

[crapaud in reply to JediReject]

Hi Chris,

Good to see you posting - hope the summer brings you even more respite in your recovery

Take care.

Gary

[mammared]

Thank you Paul for posting.