Hi Roger,

I was diagnosed after 60 so they started with Phlebotomies, baby aspirin and Hydroxyurea. I also have a few mutations that may mean more progression so that might be why my doctors suggested Hydrea right away. I initially had some side effects but do not have any now. The one thing about phlebotomies (besides the inconvenience) is that I sometimes become anemic. Other than that they can work very well.
If I have learned anything it is that each journey is different. I am not sure whether that is because the disease is truly different for each person or doctors just have different opinions or different experience level with the disease. Since all the MPNs are rare, it is important to get a second opinion from an MPN specialist. Sometimes you can even get that through telehealth and the specialist can work with your local hematologist.
Good luck.
Laurie

Thank you Rozine. I’m learning so much. interesting that I was told phlebotomy’s are what you want, not drugs, yet there seem to be several people on this group who think (or have been told by their docs) the opposite.

Roger: When I turned 60 and my Platelets hit 1 million, my Dr. decided to treat me for the ET. I was already on 81 mg aspirin and I had ET for about 7 years. During that time I only had one Phlebotomy. He started me on a 500 mg of Hydroxyurea a couple of times a week. It probably was the reason why I didn't have any side effects as some do. Some 10 years later despite increased doses of the Hy, , I started needing phlebotomies. My veins were really getting to be an issues and by this time was diagnosed with PV. My Dr. treated me because of my high platelet count and my age, he wanted to prevent me from having a stroke. Phlebotomies are a roller coaster.

I was on Hydroxyurea and was having a lot of Phlebotomies. When switched to Jakafi I no long needed the Phlebotomies, but my blood counts tanked. I became Anemic and was on the verge of transfusion. My issues is Now MF and I am on Ojjaara and things are going along pretty well.

I did phlebotomy for 18 months on jakafi now and my life has never been better , could not tolerate hydroxy ! Judy 5