Hi, I'm Elena. I was diagnosed with Polycythemia Vera in 2011, and about three years ago I developed Myelofibrosis. I was on Pegasys, but it didn’t work for me, so for about a year, I have been taking Ruxolitinib.
I am waiting for my bone marrow transplant, which will probably take place in March.
Hi Elena N and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Myelofibrosis but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well….
.….. and more so as I have had 2 Allogenic (Donor) Stem Cell Transplants (Consultants do tend to use the old term of Bone Marrow Transplant)….. my first Allo SCT was in June 2014 with my second Allo SCT in Oct 2015….. I remain in remission to this day, I turned 69 last November and am living a great life…… this can be done.
This New to Community area is like our reception desk where we look to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join and post in our dedicated….
……. support group.
This group is a safe place to talk to others who have been through SCT, to ask questions and get support from members who are navigating or have navigated support journey.
Click on the link above and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
I will keep my eye open for you in the group where we can chat more.
