@chorusgirl500
Sorry that you have to deal with this at your age. I’m 72 and have been PV JAK2 positive for 2 years.
It is a good thing that you have a Primary Care physician who recognized the problem and is helping you to find solutions. I had been feeling off for several years before I was finally diagnosed. Looking back on my blood work I had very high RBC, WBC, and platelets for several years. He never said anything about it and just prescribed blood pressure medicine.l it’s really just a miracle that I didn’t have a heart attack or stroke. I live and work in New York City, and one would suppose we had good doctors…I was in a small clinic in a small town in Minnesota (3500 people) having routine bloodwork done for something, and the RN there saw the blood work numbers at pretty much diagnosed me on the spot. I was in the hospital in Duluth a couple of hours later. There was a fairly good hematology Oncology Doctor there, but he had never seen a case of PV. He did do the textbook treatments and started with phlebotomy, aspirin, and hydroxyurea. But not knowing much about it, he also noticed my low iron and was also giving me high dose iron supplements. He also suggested that I should try to find someone at a research hospital that had a lot of experience in this kind of blood disorder. I found someone in Louisville, Kentucky at the University of Louisville. When I started there, he told me about what was going on which answered a lot of questions that I had been freaking out about for the previous three months. In that information is mainly that this is a manageable condition. It is classified as a cancer, but doesn’t act like what we think of it as cancer, it doesn’t spread to other organs, it doesn’t make tumors, etc. There are people that you will find on this message board, that have been living with PV for 30 years or more.
HU is a very inexpensive drug. A month supply for me if I didn’t have insurance would be about $40. So that is reassuring. Since the initial round of phlebotomy and Doctor visits, I now am going to see my hematologist about once every four months. I have not had a phlebotomy for over a year now. My worst symptoms from treatment are having days when I’m tired… On the other hand, I am 72 years old…
And the last thing that I’ll say is that medicine is moving quickly these days. Friends and relatives of mine died 20 or 30 years ago from things that are now easily treatable. I expect that all of these myeloproliferative disorders will be curable within the next 20 years.