myelofibrosis

Hi glyndale, I don’t have myelofibrosis but there are a number on the group who has so let’s see them pick up on your post.

You can put myelofibrosis or MF (although I have MF but my type is a Non Hodgkins Lymphoma called Mycosis Fungodes) into the search tool near the top, press ‘anywhere’ and this will bring up all the older post, you can then put up a reply and see if the members are still using the site.

Hello Glyndale

Yes I have had it for 8 yrs and have now progressed to the point of stem cell transplant. RUXALITANIB/JAKAFI helped reduce my spleen size drastically but unfortunately didn't help.me with bone pain or fatigue. 

oh thank you am newly diagnosed so don't know what to expect,thought i was going to die pretty soon ,but prognosis is not as bad as I thought 

Ammadores, do remember to make use of our dedicated Stem cell transplant (SCT) group as the SCT process is ‘interesting’ and it will help you to talk with others who have navigated the Magical Mystery Tour that SCT is.

I have continued to work 60+ hrs per week for the 8 years and am still working now.

It just becomes your new normal, continue to live your life and stay happy.

Thank you I have nipped over and had a look, lots of strong people over there xxx

Determination and Perseverance comes to mind

After a number of years where my platlettes, hemocrit, etc have been steadily rising and earlier this year became static have now taken a speedy dive downwards. Today by doc used the term"bone marrow burn out". Has anyone heard this term used?. Another bone marrow biopsy has been scheduled.

Hi Naugus I'm sorry but I don't have MF, I have myelodysplasia or MDS. As well as being in this group I belong to an MDS support group and within the last week the medics at the top of the MDS group are advocating that doctors/haematologists should refrain from describing MDS as iron overload or bone marrow failing and actively tell sufferers that they have a bone marrow cancer. Literature is also available for GPS to inform patients of the same thing.

Hope you are able for treatment Naugus

Tvman 

Thank you Tvman.