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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Covid Booster Dose For ET Patients?

Covid Booster Dose For ET Patients?

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

A myMPNteam Member said:

Thank you for this, Marje!

posted 7 days ago

How Long Does Hydroxyurea Take To Reduce Blood Counts

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.

A myMPNteam Member said:

I Really appreciate the great responses to my question, thank you all
I am taking daily aspirin 100mg and getting fortnightly blood tests. Sounds like it takes a little time for most, so I need to be… read more

posted 19 days ago

LDH Levels

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

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

A myMPNteam Member said:

UPDATE: As always, remember I'm not a doctor, just telling you what kind of results I have personally had. I've been on the low dose (5 mg/1x day) Ritalin for 2 weeks. I'm sure I'm not going to win… read more

posted 4 days ago

Hydroxyurea And Increase In RDW (red Cell Distribution Width)

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

A myMPNteam Member said:

Thanks for your perspective, Barbara. (I think brain fog might be my new normal-haha!) But seriously, my MD believes my iron levels are currently ok, but suggested I take a women’s regular daily… read more

posted about 2 months ago

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

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?

A myMPNteam Member said:

Thanks for the suggestions Ggrana!

posted 6 days ago

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

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?

A myMPNteam Member said:

Just had my 3rd one done last week. In combination with a full blood panel, it's the only way my MPN specialist can evaluate the the progression (or not) of my ET. It's not a pleasant procedure, but… read more

posted 18 days ago

How Often Are The People With PV Seeing Their Oncologist?

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.

A myMPNteam Member said:

I changed doctors after my first oncologist put me on iron for anemia and waited three months to see me. By then my hematocrit was in the high 50's. He took me off the iron and I had several… read more

posted about 1 month ago

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

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.

A myMPNteam Member said:

I was diagnosed at age 77 and now 78. Doing ok. I have some ups and downs. But living my life with PMF. You can do it!
Hugs
Judy

posted 2 months ago
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