What about Myelofibrosis

[Warburg]

Are there any myelofibrosis sufferers here? I was gnoses two years ago, and have been taking Jakafi 5mg. twice a day for over a year.

[DanL]

I have mostly seen MDS and AA on this website, although there are some people like me that had fibrosis with their MDS. I also happen to be taking JAKAFI, but for GVHD post-transplant. If you search this site, I recall somebody referencing a website that is more dedicated to MF, PV and ET.
Dan

[ASQ]

Originally Posted by Warburg

Are there any myelofibrosis sufferers here? I was gnoses two years ago, and have been taking Jakafi 5mg. twice a day for over a year.

Hi Warburg . MPN Voice is a site that might be of interest to you . It deals with ET , PV and Myelofibrosis .
All the best ASQ

[Warburg]

Thanks all for your responses. The abbreviations on this site puzzle me. I don't understand most of them. I'll try MPN Voice.

[DanL]

Just a quick tutorial on abbreviations:

MPN - Myeloproliferative neoplasm - fancy way of saying blood cancer or abnormality. This refers specifically to the three below:

ET - Essential Thrombocythemia
PV - Polycythemia Vera
MF - Myelofibrosis

All three of the above are the result of your bone marrow producing defective cells and usually too many or too few of one or more types (red, white, platelets).

GVHD - Graft vs Host Disease - a disease where your new immune system from the donor of transplant stem cells doesn't recognize your body as its natural home and treats it as a foreign body, as if it were a cold or the flu. It is where your new immune system attacks your skin, gut, eyes, liver, lungs (together or individually), and is a common event after allogeneic stem celll transplant.

Most of these you can do a basic search on google and find out what they mean, at least scientifically. The forums have a lot of people who are very good at explaining these in plain language much more clearly than I am able to.

Being diagnosed with one of these diseases frequently means learning to speak a completely different language to cope with the medical terms that get thrown at you. The best source of answers is your doctor and their medical team, and just take a notebook any time you run into a question and write it down for your next visit, then go through line by line until you are satisfied. This will probably go on for several visits until you have a decent understanding of all of the most common terms.

I wish you best of luck with all elements of this journey.