Hi everyone, not sure where to start or which group to join, i was diagnosed with myelofibrosis yesterday after a bone marrow test, we'd previously thought it was ITP. Im about to start ruxolitinib and join list for bone marrow transplant. I've got lots of appts coming up in next few weeks so I'm sure I'll get lots more info soon. I just wanted to say hi and find as many resources as I can, take care everyone
Hi Purplesparkles and welcome to the Macmillan Online Community although sorry that you needed to find us and especially sorry to hear about your myelofibrosis diagnosis.
A blood cancer diagnosis like this brings many questions, confusion and lots of stress.
I have actually had two Allo (donor) Stem Cell Transplants (consultants still call them Bone Marrow Transplants for some reason) for my rare type of Non Hodgkin’s Lymphoma and it did the job for me.
We do have a dedicated Stem cell transplant group, this will be a good place to connect with others navigating the same type of SCT journey and over the years we have had a few folks with myelofibrosis in the group.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
I will keep an eye open for you in the SCT group.
((hugs))
