Hi my husband was diagnosed with Myelofibrosis last year he is taking Ruxolitinib twice a day, he also has dementia which was diagnosed in 2013. The dementia is Vascular so apart from memory it is not too bad. But I am struggling emotionally, he does…
Hello everyone out there,
I am new to this so not sure where to start. I have been diagnosed with myelofibrosis. Anyone have the same? I'm 57 years old with an amazing wonderful husband of 36 years and 6 amazing wonderful children.
i am surrounded…
Is there a group for myelofibrosis or is it listed under another title
I have been having lots tests over a long period and just got confirmation of a diagnosis for myelofibrosis.
Are there others or a group etc concerning this condition.
Hi Ammadores, I myself do not have Myelofibrosis. However, an elderly relative of mine has and, was on watch and wait for 40 years. He is now 86 years of age and obviously, too old to have a SCT. The last couple of years saw his health deteriorate, i…
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…
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…
Hello Everyone
I am a 66 year old lady and am newly diagnosed with a type of blood cancer called myelofibrosis. I understand this is a rare form of cancer but is there others in this community who have this cancer? Thank you
Hi we’ve been told today its very iikely my mum has this. She was diagnosed with polycythemia 2 and a half years ago. I’m quite scared as the doctor was very evasive when we asked about prognosis. She’s had weight loss and night sweats which…
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…
Hi I have just been diagnosed with myelofibrosis and have been on ruxolitinib for 1 month now I'm on 20mg twice day have consultation with consultant tomorrow to see how I'm doing
