"My recommendation for others, especially those with the 'rarer' forms of cancer is to ensure your oncologist has experience with your disease. If not, find one who is even if it means more travel. Hopefully, this individual will be based at one of the higher ranking cancer facilities."
Patient Story: William
I was diagnosed with myelofibrosis in 2007. Luckily, the oncologist was familiar with myelofibrosis and was associated with a cancer facility that also had experience with the disease. However, this facility tested me for a possible conversion to Leukemia earlier this year and said it had not. At this time I was going through weekly blood draws and transfusions. The transfusions were supposed to increase my hemoglobin counts and while that did happen the increase was well below the expected increase. I did not feel well during this time as well. My wife and I decided that we better consult with another facility - one with a higher "ranking" for treating cancer. We did.
A day after the consultation and blood draw there, I was told that I would be admitted to hospital there for up to 6 weeks for treatment of Leukemia. My blasts were at 42 percent! Apparently this was not being picked up on the other weekly blood draws (perhaps the draws were not even tested for blasts!). After a tough 6 weeks, the Leukemia went into temporary remission and remains there as of this date. I am glad I went elsewhere!
I am scheduled for a stem cell transplant for my myelofibrosis. Luckily, a full match donor was located and is willing to donate. There are quite a few preparatory test to complete to make sure one is as well as the doctors would like. I am going through the last of them now.
My recommendation for others, especially those with the "rarer" forms of cancer is to ensure your oncologist has experience with your disease. If not, find one who is even if it means more travel. Hopefully, this individual will be based at one of the higher ranking cancer facilities.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.