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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.

Featured Q&A

How Do Beverages With Caffeine Affect Your MPNs?

By A myMPNteam Member 25 answers

What MPN Symptoms Keep You Up At Night?

By A myMPNteam Member 44 answers

Will ET Ultimately Always Progress To PV.

By A myMPNteam Member 12 answers

Do You Follow A Specific Diet To Help With MPN?

By A myMPNteam Member 22 answers
1112 questions

My Son Was Diagnosed With ET Yesterday. My Husband Has PV. Anyone Else Have A Child Along With Yourself With Blood Cancer.

A myMPNteam Member asked a question 💭
Boring, OR

Dr told our son that it was a blood disease and not cancer. Anyone else have this experience?

A myMPNteam Member

Hello, Cluebbers. When I was first diagnosed with PV, I was told it was a blood I discovered it myself when I noticed I had small abnormal red cells -blast on my lab tests. I'm so sorry your son has… read more

10 hours ago

High Hemoglobin Levels (around 17) And Elevated Hematocrit (above 53) Along With A Consistently High RBC Count (6.2 And Above)

A myMPNteam Member asked a question 💭
Indian, AK

Hi everyone, I've been experiencing high hemoglobin levels (around 17) and elevated hematocrit (above 53) along with a consistently high RBC count (6.2 and above) for the past 10 years. Although my tests for polycythemia vera and beta thalassemia minor came back negative, I was diagnosed with iron deficiency. Despite this, my body continues to produce RBCs, and I'm on iron supplements
Does anyone have insights or suggestions on what type of condition I might be facing, or have you experienced… read more

A myMPNteam Member

Do you see a specialist. It sounds like it could be PV. Has phlebotomy ever been recommended to you? When you say the tests were negative fo PV, I assume the JAK2 gene test was done? I think some… read more

30 mins ago (edited)

What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃

A myMPNteam Member asked a question 💭
San Francisco, CA
A myMPNteam Member

If you want to load up on calories try Keto Brick has 1000...

4 days ago

What Does A Negative BCR-ABL1 Mean?

A myMPNteam Member asked a question 💭
Ormond Beach, FL
A myMPNteam Member

Thank you. I was asking for someone else on another forum. I myself have ET and JAK2. I was taking Jakafi, but for some reason over several months, I developed shortness of breath, which was so… read more

5 days ago

Does The myMPNteam Have Any Articles Related To The Effects Of Covid And Flu Vaccines On This Disease?

A myMPNteam Member asked a question 💭
Ormond Beach, FL

Has Anyone Tried Ropeginterfero Alfa-2b? How Are You Doing And What Have Your Side Effects Been?

A myMPNteam Member asked a question 💭
Mooresville, NC

I Have Been On Hydroxyurea 500mg For ET, 5 Days A Week For Over 9 Months. Recently Started Having Dry Mouth Issues. Anyone Else Have This?

A myMPNteam Member asked a question 💭
Peoria, IL

My dentist made suggestions, special tooth paste, lots of water and gum or lemon drop type candy. See my cancer Dr. in November. I also feel like my hair is thinning out. So just wondering if anyone has these issues, what can you do about it. Any thoughts on other meds that wouldn't cause these issues.

A myMPNteam Member

Yes, I experience this mostly when I awake from sleeping. I am on Besremi for PV and other pain reduction prescriptions for a serious foot issue. Will be seeing my Pain management team this week so… read more

October 13 (edited)

Has Anyone Experienced Left Upper Abdominal Pain That Is Achy, Comes And Goes And Radiates To Your Side And Back?

A myMPNteam Member asked a question 💭
Marysville, CA

Trying to determine if it’s related to the ET JAK2 or if it’s something else. I’ve had multiple scans and I’m not getting any answers.

A myMPNteam Member

I’ve had multiple scans and my spleen appears normal. Could they be missing something?

October 15

For Those Taking An Interferon For The Treatment Of PV. Has Your Allele Fraction Changed And Have You Experienced Any Significant Hardships

A myMPNteam Member asked a question 💭
Ontario, CANADA
A myMPNteam Member

Thanks again Steve, your feedback is once again appreciated. I’m still doing well after 6months of phlebotomies + aspirin. My ferritin level is very low but not feeling any significant hardships from… read more

October 13

Does Anyone Out There With ET/Calr. Experience Lightheaded Feeling Daily?

A myMPNteam Member asked a question 💭
Plymouth Meeting, PA
A myMPNteam Member

Thanks Carol. I don’t drive either.

4 days ago
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