new diagnosis of myelofibrosis

Hi all

Thank you for inviting me to join this group.  Four days after my diagnosis I woke up with pain in my spleen and shoulder.  |I was advised to go to a and e and I was admitted.  The pain was brought under control with strong painkillers and I saw the haemotology team who explained it was all related to myelofibrosis.  I was commenced on hydroxycarbamide.  They explained that my spleen was 19, which meant nothing to me really.  I spent 11 days in hospital.  I am taking hydroxycarbamide.  I have had a bone marrow biopsy in hospital and am waiting for the results.  i have an appointment with my consultant soon to discuss the findings. 

  • Hi  and welcome to this corner of the Community. I am Mike  and I help out around our blood cancer groups.

    I don't have Myelofibrosis but was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.

    In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.

    Lets look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.

    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 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 and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one ai attend does have a few folks with Myelofibrosis in it so worth checking.

    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.

    Always around if you need further help or just want to talk

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hello Alicegirl123, sorry to hear that.
    I was diagnosed with myelofibrosis a year ago. Regular check ups showed the platelets rising over four years until the test for Jak2 and the biopsy confirmed the diagnosis.  By US measures when the platelets reach 1000 hydroxycarbamide will be prescribed, I’m almost there. Could it be that you had a late diagnosis if your spleen is already enlarging.
    read somewhere this was a disease occurring more in men I may be wrong but I believe it is only women that have responded to this group so far, and a wife for her husband.

    Naugus.

  • Hi there I also have mylofibrosis. The 19 you refer to is the size of your spleen 19cm, the average size of a healthy spleen is 11cm....mine is currently 21cm.

    If you feel both sides of your abdomen you can feel the difference on your left side...this is where your spleen is hunni xxx