Myelofibrosis help and advise

I am looking for a support group who talk about their experience and treatment. Having recently been told I have this myself but informed that my first available appointment with the haematologist isn't for sometime I am having difficulty getting my head around it, sleep deprivation is just adding to the problem.  Just want to chat with others about treatment, hospitals etc to best prepare myself.

  • Hi  and welcome to the Online Community.

    I am so sorry to read about your Myelofibrosis (MF) diagnosis but I hope you will find the support available in the community helpful at this difficult and challenging time.

    Talking with others who are walking the same type of cancer treatment path will help you navigate this unwanted journey. In fact I was diagnosed way back in 1999 with another rare type of blood cancer (Non Hodgkin’s Lymphoma Mycosis Fungodes) so totally understand the challenges.

    The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups so can I recommend you start by joining our MDS/MPN/ET/PV/myelofibrosis (MF) group as this will be a good place for you to connect with other folks who may be on the same cancer treatment pathway.

    Navigating the community will depend on the device you are using. To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.

    You can then introduce yourself by putting up a post by clicking  on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).

    You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'. 

    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, 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

    All the very best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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