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DiscussionWhat are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: Sep 4 8:39pm | Replies (97)Comment receiving replies
Replies to "Hi @snakebite, If you do not mind my asking, did you have any symptoms when you..."
Hello. I had a full routine physical when I was 60. My Doc said that my Platelets were very high and that he was referring me to an Hematologist at the local Cancer Center. My original diagnosis was ET, and they started treatment with Anagrelide. Things didn't change and after several months I was switched to hydroxyurea. Again things didn't really change all that much. After about year and a half they did a Bone Marrow biopsy. The results didn't look good so they sent me to see a Dr. Greenburg at Stanford Medical Center. He is their MDS specialist. He said I had MF... so the journey began. It's been a heck of a up and down ride. For the most part the only real symptoms I had early on were being tired. I have always been the athletic type so it was tough not having the stamina that I was use to having. They tried all the usual things. Some help for a while, but all of them met with a limited amount of success. I resisted Blood transfusions for a number of years... but it finally reached the point that I had no choice. I must admit, it made me feel so good that I looked forward to them. When we started the Chemo, things got Dark for me. It was not a fun occasion at all, but I persevered. A scan showed that my spleen was Gigantic. It had been giving me problems for well over a year when we found out. Unable to eat much at a sitting, and pain when I took a deep breath. They were on the verge of doing Radiation on it to make it shrink when Vonjo show up... I tred it, and it very rapidly shrank my spleen and helped my CBCs. Blood transfusions where only an occasional event while on Vonjo. After a couple years the Vonjo's effectiveness dropped and things were again looking bad. Then up jumps Ojjaara. Now I'm riding that cart and so far it is a great ride. It does give me loose bowels, but I don't give a **** , I'm living the good life for now and hope it continues for a long time.