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Hi, Have ET And Jak2 Going On Ruxolitinib, Is Anyone Taking This, Like To Know How They Are Feeling And What Side Effects It May Be Causing,
Many tks, Antoinette
Hi Kathy, tks so much for your reply, really helpful, keep well , Antoinette
My Son Was Diagnosed With ET Yesterday. My Husband Has PV. Anyone Else Have A Child Along With Yourself With Blood Cancer.
Dr told our son that it was a blood disease and not cancer. Anyone else have this experience?
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
High Hemoglobin Levels (around 17) And Elevated Hematocrit (above 53) Along With A Consistently High RBC Count (6.2 And Above)
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
Yes they have recommended me to for phlebotomy but after each session i feel very fatigue and mchc MCV and rdw cv counts usually get very low. And yes the have performed bone marrow aspiration and… read more
What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃
hi , if you need to take needles , fluid for medication with you on holiday and travel by plain
ask at treating specialist to write a letter
put your meds in general luggage
airplane companies had… read more
What Does A Negative BCR-ABL1 Mean?
Does The myMPNteam Have Any Articles Related To The Effects Of Covid And Flu Vaccines On This Disease?
Has Anyone Tried Ropeginterfero Alfa-2b? How Are You Doing And What Have Your Side Effects Been?
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?
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.
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
Has Anyone Experienced Left Upper Abdominal Pain That Is Achy, Comes And Goes And Radiates To Your Side And Back?
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.
I’ve had multiple scans and my spleen appears normal. Could they be missing something?
For Those Taking An Interferon For The Treatment Of PV. Has Your Allele Fraction Changed And Have You Experienced Any Significant Hardships
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
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