Myelofibrosis, but not leukemia...

Hi again Christine MONTINHO well done navigating across to this corner of the community.

Like your husband, I also have an incurable but manageable blood cancer but not the same type. I was diagnosed way back in 1999 and I found that when required treatments were always available with great results.

Let’s look for the MF members to pick up on your post.

Do also check out for a local Maggie's Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support so with checking out this support network.

Greetings, I was diagnosed with MF in January of this year.  Regular routine blood tests revealed a high platelet count. I was tested for the Jak 2 mutation which was positive then a bone marrow biopsy that confirmed the disease. I was told that I am was not a candidate for a bone marrow transplant. To date I have not experienced any obvious symptoms. I continue to have regular blood tests and the platelet count continues to rise. I am soon reaching the level when oral chemo will be prescribed. In the meantime I try not to focus to much on what is to come and continue in “watchful wait”

Naugus.

Hello I also have mylofibrosis and it is good to meet others dealing with this cancer.

Hello can I ask why your not a candidate for SCT, i think this will be the next step on my journey. I am 53 yrs old.

Hello Ammadores,

I did seek a consultation on SCT but was told that I was not a candidate. I am 80 yrs. 

Sorry to hear that, I hope you are still keeping well.

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 we thought were polycythemia symptoms but seems they were not.  Any help or advice would be wonderful, tonight I feel quite scared.