I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more
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Started 3 times a week 500 mg for 2 months then it was increased to 500 mg
5 days a week ( m-f ) plus low dose aspirin daily. The diagnosis was made after testing due to a blood clot last summer. At first, sometimes cold hands and feet for an hour after taking the HY. Also, a little thinning of my hair but my specialist says it will stabilize. I always take the HY in the morning after breakfast.
Am trying the mediterranean diet - a healthier diet - and keeping active.
Yes, virtual visits are how I've always seen my MPN specialist as he is 2 hours away. He co-treats me with my local onc/hem & it works great. Occular migraines are a symptom of ET - as a Google search shows, as are other symptoms you may be experiencing: dizziness or light headdress; tingling or burning in hands &/or feet, etc.
Hi, my age, diagnosis, and experience with ocular migraines related to ET/JAK 2 are similar to yours. I was reassured by a visit to an eye specialist who explained what these are and told me not to be concerned but to keep a record of when they occurred and how long they lasted. He said if they increased substantially to make another appointment. Thankfully, they have not. I hope you are doing well also. Blessings, Jan
Just read all the messages about occular migraines. Yes, I had them for years - maybe 2x a year. More frequently for a few months leading up to an MPN diagnosis in July 2020. Once I was on aspirin and HYDROXY - they stopped. I did not realize they were a symptom of an MPN. That was never menitoned...
Yes, I also have ocular migraines for years. My ET was found the same way, an elevated platelet count in annual physical bloodwork. I wa 50 years old when diagnosed & also JAK2+. Google ET symptoms as you may be surprised as to how many you may have but didn't know it was ET related - I know I was. Good luck in your treatment. Please get established a MPN specialist as the cancer we have is not common & getting treated by a specialist that specializes in our cancer can make a big difference your quality of life & even possible remission if caught early & put on Pegasys interferon. That is the only medication that lowered my platelets. MPN specialist in your area can be found here: https://www.pvreporter.com/mpn-specialists-canc... Good luck!
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