Is a third mRNA recommended for ET patients on Hydrea and ASA in the US? Canada? Europe?
Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?
My docs have asked a favor. I've posted on this forum that my doc gave me a very low dose of Ritalin to help with my brain fog, and it worked really well. In addition to the brain fog relief, it also eliminated that horrible bone pain in my legs. They would like to know if anyone else has tried Ritalin (Methylphenidate) and if they had similar results. They are curious if this is an "off label" bonus that other MPN patients may benefit from. I'm not passing any names on to them, just comments… read more
Did you know Pegasys and Graves disease are linked. In rare cases, Pegasys can cause Graves. Which means you have to constantly pull the TSH. Something your oncologist probably isn’t watching. Tell them to pull it! Do you have your ferritin pulled as well? Anemia can be a cause of MPN’s. We have to watch our iron as it’s a great indicator of autoimmune diseases…like cancer.
I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.
My husband was diagnosed last Aug 2020 and we have seen his Oncologist once. Covid has thrown a wrench in this but when I asked him how often we should expect office visits he said he typically sees his PV patients once a year. I'm very uncomfortable with that.
Said that the blood work/labs show him what he needs.
I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!
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