Myelofibrosis

Diagnosed in January this year.  Regular blood tests revealed rising platelets. A test for Jak2, and bone marrow biopsy confirmed the disease. Platelets continue to rise and at some point level oral chemo will be ordered. I am in a  place of “watchful waiting “.  Am I alone in my wait?.

  • Hi  and welcome to the Online Community but so sorry to hear about your Myelofibrosis diagnosis, this must have come as a shock but I do hope you will find lots of comfort and support from people who understand here on the Online Community. 

    The Community has many dedicated support groups so can I recommend you start by joining our MDS/MPN/ET/PV/myelofibrosis (MF) group. This is a safe place to talk to other people who might have a similar diagnosis or treatment experience.

    If you'd like to connect into this group, you need to join the group. First click on the Green link I have created above. Then click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    You can then introduce yourself by putting up a new post by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so why not hit Start a Discussion in New here, say hello’

    You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.

    It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Talking to people face to face can indeed help a lot but during these strange times it’s not that available but check out for a local Maggie's Centre as some centres do run monthly Heamatology Support Groups. My one in Inverness, I have a rare type of Lymphoma, have a few folks with MF attend.

    Always around if you need further help in navigating the community.

    All the very best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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