Covid Booster Dose For ET Patients?

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

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.

LDH Levels

Went to oncologist appt today. Platelets have lowered to 751. Dr. prescribed hydroxyurea 3 times weekly. Concerned with my LDH level that has risen to 449. Has anyone else LDH level been a concern or even discussed?

Brain Fog

I started noticing issues with brain fog about 2 years before my MPN diagnosis. Went to a neurologist for a full work up. They said it was stress. Now I know differently since I got the MPN diagnosis last year. Multitasking is impossible. I've flooded rooms in my house TWICE forgetting to turn off the faucet. Today I had to hang up my car keys because I got out of my car without putting it in Park. Thank God it was in my driveway and I could jump in and break. So I don't trust myself behind the… read more

Hydroxyurea And Increase In RDW (red Cell Distribution Width)

I have ET and I’ve been on hydroxurea (1000 mg per day) since Mid-June of 2021 and just got my first monthly blood analysis results. My platelets have dropped from over 850+ down to 451 (still above normal, but a dramatic drop for me!) Everything else looks good except now my RDW (red cell distribution width) number is high - I jumped from 13 to 15.4! It appears that this may be a side effect of hydroxyurea, and I may need to increase my vitamin B-12 intake to see if it helps to reduce it …or… read more

Has Anyone Had Severe Itching With Their MPN? I Was Diagnosed Several Years Ago But The Itching Just Started A Couple Months Ago. HELP!!

I have ET, JAK2+. Dx 7 yrs ago but itching just started a couple months ago. It is unbearable after even a cold shower. I use lotion twice daily, no help. I know it has to do with mast cells & cytokines (puritus on a cellular level) with having a MPN. What do you do or take to relieve it?

Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?

Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?

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.

Are There Others Who Have Been Diagnosed With PMF Before 50?

I was diagnosed with PMF at 45 which is my the median age for this disease.

When Was ET (MPN) Discovered & Diagnosed As A Blood Cancer?