Hi so 5 years ago I found out I had this rare form of bone marrow cancer and was told it was incurable but it’s very slow progressing.
I started taking ruxolitinib yesterday to shrink my spleen which is 25 cm instead of the normal 8cm with the aim of moving forward to a stem cell transplant
I’m a 57 year old male and look forward to hearing from anyone going through the same journey
#loveHopeStrength
Hi Korkey and welcome to the Online Community but I am sorry to hear about your diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.
I was diagnosed and been treated for another rare incurable blood cancer (a type of Non Hodgkin's Lymphoma) so I understand the journey well but can I recommend you join and post in our MDS/MPN/ET/PV/myelofibrosis (MF) support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To join a group click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can put up your own post and introduce yourself to the group by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
Do get back to me if you need further help navigating the community.
Hi again, sorry I missed that you are on the Stem Cell Transplant (SCT) route........
I have had 2 Allo (donor) SCTs for my blood cancer so you may want to join our dedicated Stem cell transplant support group where I and the group members can help you navigate your SCT journey.
