Stem Cell Transplant

[john2cv6]

I am 64 years old and was diagnosed with primary MF four years ago. I have recently been part of the Pacritinib drug trial but have had to discontinue taking the drug due to complications. My consultant has raised the possibility of stem cell transplant. I would be interested in know in anybody's experience of this. Thanks very much.

[MFBMT2011]

Had mine four years ago aged 58. Now buddy people for MPNVoice leading up to and through theirs. Know many who have had SCTs. Happy to talk via email or on the phone. Will be talking about it at the Cardiff MPNVoice meeting and will be trying to attend Inverness too. If you would like to read my story, and others - not just SCT but about people with MF, ET and PV too - then look up MPNforum online and you will find lots in their story archive. Alternatively email me on [e-mail] and I will send you a copy of my story as your starter for ten and we can see where we go from there.

Chris

[beetle]

At just 65 I was strongly advised against transplant by the transplant team on grounds of age. I apparently look much younger than 65 but that was not taken into consideration. My consultant likened my position to standing on the edge of a cliff. I could jump now and hope the parachute would open - transplant - or I could wait for the wind to blow me off at sometime in the future. Using that analogy, the transplant specialist said I would be jumping with a faulty parachute. She also said that if I was her mother in this position, she would advise against. It kind of took the decision away from me and I no longer agonise over it. I can enjoy the quality of life that I now have (not great but not SO terrible) and deal with what fate dishes out in future. Who knows, that might be the holy grail drug we are all praying for? Good luck with your decision - it's not an easy one at your age.

[Kisses in reply to beetle]

Hi beetle with ref to stem cell treatment my husband frank was diagnosed with pmf 2and a half tears agp was told this is a very rare desease he is 66 now his brother who is 57 had pv now has mf ison the same treatment ruxolitinib was told has a 5 year life exsptancy if he doesn't agree to stem cell now and he has agonised at what to do has now decided to go ahead so as regards to the rarenes of the desease how odd that two brothers end up with mf How are you coping with your me these days are your platelets low franks is now 76 seems to keep dropping more than ever one month up 2 next month down three fatigue can be a problem also because he's on the lowest dose of ruxo 5mg 2 a day sweats are coming back we pray his brother will be ok and this will take place about 10 weeks time they have found three good matches out of several thousands so hope it goes well

[beetle in reply to Kisses]

Hi Kisses. It seems apparent that there are more and more familial links with this disease although it is supposedly not hereditary. I have just heard that my cousin has lost his fight with CML, another disease in the MPN group. I am glad to hear that good matches have been found for your brother-in-law. I had a problem there too with no positive matches from a world-wide search, just 4 possibles.

I am on 15mg ruxo twice daily and it has pretty much got symptoms under control although I get day and night sweats and some itching still and fatigue is a constant problem. My platelets are hovering around 60-80 which is very strange for me having had ET for so long and struggling to get them below 800!

I wish your brother-in-law every success with his transplant.

[Paul42 in reply to beetle]

Hi

I agree on the familial links, I have PV and my sister has ET.

It is strange how it does seem not that uncommon on here for people to have relatives with MPN's too

Paul