I was given a diagnosis of ET with a JAK 2 mutation about 6 months ago and my platelets were 575. I am now at 653 and all my other results are within the normal range. I have been taking low dose aspirin and pepcid daily since November. I am seeing my doctor for the second time next week but she is not a mpn specialist. I have a second opinion scheduled with a specialist in July.
Hi Vicki - that's great that you have an appointment with a Specialist. I'm hopeful that you will be more confident in your treatment plan, as I was. Platelet counts in your range aren't used to determine when cytoreductive medications are started. There is a tendency to focus on our counts and have concern if they increase. There are a lot of variables outside of ET that also cause counts to fluctuate, and with time you'll see yours go up and down. Attention to longer term trends can be more meaningful. I'm also 58 with ET JAK2, and my platelet counts are in the same range as yours. When I was diagnosed over a year ago, I started taking daily low-dose aspirin which resolved all of my symptoms. I recently started injecting Pegasys weekly. The primary goal of treatment is to reduce the risk of clotting, but can also be used to alleviate symptoms. If platelet counts exceed 1 - 1.5 million, then cytoreductive medication is prescribed to reduce the risk of bleeding. Risk of clotting is associated with an age over 60, having a JAK2 mutation, and having a history of clotting or cardiovascular risk factors. Although normalization of counts is a goal in clinical practice, according to NCCN guidelines it is not associated with long-term clinical benefit. I started Pegasys now because I'm close to the age at which I will be considered high risk, and there is evidence that suggests interferon can improve long term outcomes.
Thank you so much for explaining this to me. This info is very helpful.