myelofibrosis

Gubba03 said:

Mylofibrosis
So are you saying you have Mylofibrosis?? If So it is a pritty big deal. I just found out that I have this disease about 3months ago and the doc thinks I may have had this for 6months to a year.

Smoking May have played a part but not much I dont think cause there would be alot of smokers out there with this disease. I think we are just unlucky, Im sorry to here you have this disease it is of the deadly kind. The average life expectancy is 3.5 to 5 years. But some people can live with this for 6,10,11,15,18,20,25,30 years even without medication. You just have to be one of the lucky ones.

On that there is a cure which is a bone marrow transplant but that comes with high risks and the transplant could save us or kill us. But at least there is hope where some people dont get it.

Aslo great news for us there now doing drug trials for our disease which will be done in the near future. So maybe soon they might find a way to slow the disease or even cure us soon. So there is hope. Hope everything works out. I know its scary but all we can do is hold our head up high and fight.

Myelofibrosis
I was diagnosed in November 2012. Life style is not an indicative actor. It is a genetic defect; not hereditary, but genetic in nature. My spleen was enlarged as was my liver. I was very athletic. At 58, I was working out, riding 15-25 mie daily bike rides and swimming uto 10 miles a week. One day sat summer in late June, I got on my bicycle and could barely push the peddles. My swimming endurance vanished. My weight fell drastically from 200 to 171 bs. Extreme fatigue set in with unbearable night sweats and severe itching, especially after swimming or taking a shower. I lost my appetite. Severe bone pain set in. I thought i was beoming arthritic. All of this seemed to occur as if a switch was thrown.

An FDA approved drug, Jakafi, by Incyte Pharmaceuticals, came on the market eight days after my diagnosis. I started it in Janary 2012. It treated my symptoms very well, however, anema really set in as a side effect. My spleen reduced in size and i started gaining some weight Anema was my underlying problem for all the symptoms I experienced. The anemia was brought on by the myelofibrosis. I started t become blood infusion dependent. I was referred to the Mayo Clinic.

This past July, I went to the Mayo Clinic, Rochester, MN. I am off the Jakafi now as it was not suited for my unique situation and am currently being treated there. I am still blood infusion dependent, however, we are hopeful that I will become less dependent. I remain highly optimistic. There s no other way to be.

DuckerHunter said:

Myelofibrosis
I was diagnosed about three years ago when I was 51. A elevated platelet count during a regular physical led to the diagnosis. At the time my median life expectency was 5 years. It scared me sh*tless. I did some research on it during my first year, and at Mayo in Rochester. It does have a genetic connection, or at least is more common, to the Jewish bloodline. I found out that I was herediarty Jewish after more research, which came as a not unexepected surprise....I suspected I was already for a variety of reasons. Anyway, MF can strike hard and realively fast,...or linger without symptoms. I have never had any sypmtoms except for a moderate weight loss at the time of diagnosis,minor fatigue, and a slight enlargement of my spleen. My blood counts are currently well within normal and have been for two years. I'm scheduled to visit Mayo in December just to stay in their system. I've told friends that MF can be like prostate cancer in that there's a good chance that you'll die with it but not necessarily of it. I wish you luck and be positive...not easy, I know.

Myelofibrosis

I went to the hospital in March 2012 because I had difficulty breathing. I was very anemic with blood counts over the board in a life threatening level. At this point in time I was way overweight, heavy drinker and smoker. I was 47 years old.My first doctor tried to blame my anemia on drinking. But after quitting for a month he was stumped. finally after  I got a second opinion and was finally diagnossed with myelofibrosis. I had no insurance amd was too weak to work. After many months I finally got my disability and insurance. So at the end of August I was finally able to get an appointment at Vanderbelt. He told me I needed to lose 50lbs and quit smoking. finally in january, I ready to be crossmatched for a bone marrow transplant. this entire time I have been getting blood transfusions. at least two units every week or two and ocasionally platelets as well. MY blood counts stay low, wbc aqverage 1.1-1.6  my rbc average 6.2-7.8 and my platelets average 7-14. I can still get around ok but my energy level of course is pretty low. The doctors tell me that it is amazing how our bodies can "get used to so many things" Hopefully I will be able to got a bone marrow transplant. I was wondering if anyone else out there has similar blood counts and how you are affected? I feel I am lucky and have a very good feeling that everything woll turn out alright for myself. I wish the same to all of you Sincerely Ed.