A few days ago I posted about my new diagnosis of post ET Myelofibrosis and I just want to say thank you for all the responses and support I received. Without this forum I would feel quite lost.
I'm feeling absolutely exhausted today, as if having my morning shower was enough exertion for one day. However I am seeing my consultant tomorrow as well as having a platelet transfusion and possibly red cells too.
Thank you again everyone, Jennie x
Take care, Jennie. I agree -- this forum is a lifesaver. I hope you transfusion goes well and gives you some energy. Kim
Thank you x
Hi Jennie, good luck for tomorrow, take are and best wishes, Maz x
Thank you x
Jennie, has your doctor discussed stem cell transplant with you? It's the only potentially curative treatment for myelofibrosis
No, but my diagnosis is very new (a couple of weeks). At the moment the focus is on getting my counts stable and checking I'm okay with the Ruxolitinib (so far so good). I will certainly ask her about it in time but unfortunately there is no obvious donor - I have only one sister but she had chemotherapy 17 years ago which means she couldn't donate.
Hi good luck for tomorrow hope you feel a little better for your appointment.
Best wishes Poppy
Search on "True or false: A bone marrow donor must be a family member of the person who needs the transplant."
Won’t go into detail about SCT at the moment (happy to if/when you need this information) other than to say you don’t need a sibling for transplant. A potential match could be found on one of the worldwide registries. It’s called a MUD (matched unrelated donor) I didn’t match my sisters. Had my mud 9 years ago.
Chris
Sending you Loads of cwtches as only the Welsh can do
You will remain in thoughts and prayers. Totally agree about the value of this forum. The friends we make here become a part of the family who we choose. We are all blessed to be a part of this MPN family.
All the best from a MPN Brother.
Hi Jennie
I had PV which transitioned to MF, so a bit different to your situation. You've already had lots of great advice and support which I know means a lot. If ever you think my experiences can be of any help I'd be more than glad to answer any questions you may have. I've written a couple of 'stories' on this forum about my journey with PV, followed by MF and then transplant,/post transplant . Wishing you all the best. Tim
Myelofibrosis
Myelofibrosis and fedratinib
Myelofibrosis 
