Hi I'm new to this forum. I'm 65 and diagnosed with Myelofibrosis. I've been on Ruxolitinip. The only way forward for me is a bone marrow stem cell transplant and I'm very lucky that a very close donor match has been found
After several delays, I am being admitted to Clatterbridge next week to undergo this transplant
The nearer it gets the more scared I'm becoming. I had been admitted for a week and just before chemo, a flu virus was found, no symptoms, but a halt was called. I came home and have very much enjoyed fresh air, my garden blooming and now have to collect myself together again
So my new admission date is 7 May
Is there anyone in a similar situation?
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Hi Agk and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Myelofibrosis but I was diagnosed way back in 1999 at 43 years old with a rare, incurable type of Lymphoma (also called MF - Mycosis Fungoides) reaching Stage 4a in late 2013 as I then developed a second aggressive type of Lymphoma……. so although my blood cancer is rather different I do know this journey rather well…… and more so as I have had 2 Allo (donor) Stem Cell Transplants (SCT) the first in June 2014 with the second in Oct 2015
We do actually have a dedicated Stem Cell Transplant support group where folks from all types of blood cancers share their SCT journeys, experiences and give and get support.
To connect in with the group please click on the link below
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Each SCT journey is different, as I had 2 Allo SCTs I have experienced most of the aspects of the process.
I will keep an eye open for you in the SCT Group……
My story is rather complicated See my story as I developed a more aggressive type of Lymphoma in late 2014 so my treatment had to be aggressive but I am 85 years out from my last treatment, I turned 68 back in Nov and doing great.
