Hi my name is Heather. I was diagnosed in April 2021 with a rare blood cancer. I have systemic mastocytosis. There is no cure. The doctors are trying to manage my symptoms. 

  • Hi  and a very warm welcome to the Online Community although I am so sorry to hear about your Systemic Mastocytosis diagnosis. This is such a challenging and stressful time for you but I do hope you find the community a safe place to get support and ask your questions.

    I had a search through the main Macmillan Cancer information Files and did not find any cancer related information for Systemic Mastocytosis. I then had a look on the NHS information that you can find in the BOLD text above and indeed this condition can in some cases develop into serious blood conditions such as Chronic Leukaemia over your lifetime........ is this the case or has your Systemic Mastocytosis not yet transformed?

    I also did a search through the Community Posts using the search tool Mag right near the top and found a few mentions of Systemic Mastocytosis - put the text in to the tool and have a look.

    What I found interesting looking at some of the treatments available for Systemic Mastocytosis is that some of the treatments available for you - I have had over my 22 years living and being treated for my very rare Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) (CTCL) (Hit my community name to see my story).

    We do have our MDS/MPN/ET/PV/myelofibrosis (MF) group. This is a group for folks with the various rare blood cancers that don't fall in the main blood cancer groups.

    This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens 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 hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.

    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.

    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 provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.

    Always around if you need to talk more or help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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