I was diagnosed with myelofibrosis in late 2021 and since been transfusion dependent untill being prescribed Jakavi (ruxolitinib) and other drugs to combat side effects (Aciclovir). From my diagnosis I was informed that the only option due to the stage of my condition was SCT and so began the search for suitable donors.
They have found a suitable 12 score donor and yesterday was informed that I would start the process of tests on my organs to see if I am still able to continue with the expectation of starting chemotherapy in early January.
Has anyone else been through this journey, even though I've got great support from family and friends I still feel very alone. The risk factors of this process I just can't settle my mind on, I'm so up and down at the moment.
Hi again Tim64 , (yes I replied to your first post in our New to Community section back in Oct 21 - Tip, if you want to find your older posts just click on YOUR community name and look in activity)
I don't have Myelofibrosis but I was diagnosed way back in 1999 at 43 years old with another rare, incurable type of blood cancer reaching Stage 4a in late 2013 so I do know this journey rather well although not necessarily some of the treatments you are on....... however I do understand Stem Cell Transplant (SCT) very very well as I have had 2 Allo (donour) SCTs the first in June 2014 then again in Oct 2015.
There has been a few folks pass through this group who have had an Allo SCT but more importantly a few in our dedicated Stem cell transplant support group along with many others from different blood cancers.
Regardless the type of Blood Cancer the SCT process is basically the same for everyone so could I suggest you join the Stem cell transplant group and introduce yourself.
I won't hid the fact that the SCT process is full on but do-able....... but the rewards are big........ you can see my story using the link at the bottom of my post.
You may also find this PDF here helpful for you to understanding donor stem cell transplant.
Happy to talk more on here or in the Stem cell transplant group.
