What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?

Covid Booster Dose For ET Patients?

Is a third mRNA recommended for ET patients on Hydrea and ASA in the US? Canada? Europe?

Does Anyone Have Ringing In Their Ears Intermittently With PV?

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?

What Creative Tips Or Tricks Do You Have, Big Or Small, That Make Your Everyday Life Easier?

Some Feedback Please...

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

Does Anyone Else Have Grave’s Disease?

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.

How Long Does Hydroxyurea Take To Reduce Blood Counts

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.

How Often Are The People With PV Seeing Their Oncologist?

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.

What Is The Prognosis & Life Expectancy For Someone Who Has ET With JAK2 Mutation? I Took Hydroxyurea For 13 Years, Now On Jakafi.

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?

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!