Myeloproliferative Neoplasms Questions and Answers | myMPNteam

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Questions & Answers

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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.
859 questions
Why Am I So Tired All The Time.
A myMPNteam Member asked a question 💭

Hi,63 , diagnosed with PV 10 years ago. Extreme exhaustion always. phlebs and aspirin only. Counts not too far out of range. Daily routine includes yoga and walking, nutritionsupplements. Trying to eat healthy always but no appetite.
Why so tired??

posted April 10
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A myMPNteam Member

Was diagnosed with Myelofibrosis several years ago and went from Jakafi to Vonjo and now Ojjarra which for me had less side effects. My main problem aside from an enlarging spleen was constant anemia… read more

posted April 13
Does Mpn Cause Peripheral Neuropathy?
A myMPNteam Member asked a question 💭

I have had peripheral neuropathy in my feet and now in my hands and forearms.

posted April 9
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A myMPNteam Member

It is a important to distinguish the different types of numbness-tingling that can occur in relation to MPNs and their treatment.

MPN related paresthesia is a known phenomenon. While not… read more

posted April 10
Yesterday I Had Four Spontaneous Nose Bleeds. What Could This Mean?
A myMPNteam Member asked a question 💭

Diagnosed ET Jak2 since Nov 23.
Started aspirin and 500mg Hydroxyurea Nov 23.

posted April 7
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A myMPNteam Member

Thanks for your post. I will ask my doctor if I have any more.😘

posted April 10
I Am ET,MF The Test Results Showed That I Have A Mutated CARL Gene. Is There Anyone Like Me Who Is Being Treated?
A myMPNteam Member asked a question 💭

Currently I am being treated with low dose Aspirin. Other than that, there is no medication at all. If anyone has the same condition as me and is being treated, please give me more information. Thank you very much

posted April 6
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A myMPNteam Member

Hello BichDiem
I'm glad you're here and getting good information from Steve and others on this site. I'm also glad to here that you have an appointment this month to learn more from an expert
To… read more

posted April 9
Does Anyone Here Think That Having An MPN, Namely ET, Is Better Than Having Rheumatoid Arthritis Or Diabetes?
A myMPNteam Member asked a question 💭
posted April 6
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A myMPNteam Member

My brother is 75 years old and has struggled with juvenile-onset diabetes for decades. I have two longtime friends whose cancer has returned and for whom no chemo drugs are working. I feel lucky to… read more

posted April 6 (edited)
After Flying 6 Hours, I Developed What Appeared To Be Vertigo. Anyone Experience This? It’s Continued All Week.
A myMPNteam Member asked a question 💭

I am ET jak2+. 50 year old female.

posted April 6
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A myMPNteam Member

Hi Amy I hope your treatment is doing well I also have the same and I’m 63 was diagnosed last June 🤗

posted April 6
Is The Meaning Of VAF 62%, The Length Of Time The PV Was Or Has Been Progressing And Harder To Get Under Control?
A myMPNteam Member asked a question 💭

It seems as if we have the PV under control (CBC scores wise), but I feel really bad for a couple of weeks, then good for a couple and back to the drawing board with Phlebotomies, then really bad, it goes on and on. Feels like I'm starting over every few months. NOTE: only been at it 7 months.

posted April 6
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A myMPNteam Member

If your VAF is 62%, it can also mean you might have hereditary PV. Not always, but in younger patients, a VAF >50% at diagnosis indicates some form of hereditary MPN
Better talk about this with a… read more

posted April 12
With ET, Don’t Think The Level Of Your Platelets Is Necessarily Correlated With Your Symptom Burden…?
A myMPNteam Member asked a question 💭

Today I had the lowest platelet count I have had in the 1.5 years of blood tests since this diagnosis (634k today, and have been up to 923k), but was convinced b/c of the head tightness etc it would be worse. Nothing different at all in terms of diet, workload, etc. Maybe I am transitioning…confusing! I guess naturally we have a range of fluctuating up and down constantly, but this range seems large. As background, I am on daily aspirin but no other meds at the moment.

posted April 5 (edited)
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A myMPNteam Member

As it turns out, the platelet count on my last test was 821K from the lab, so you can’t really trust the on-site machines/spinners that spit out the results right away! Now I am re-thinking my… read more

posted April 17
Hi All Recently Diagnosed With ET Jak 2 Pos Lately I've Been Waking Up In The Night Sweating And My Bones Are Hurting Is It Related To ET?
A myMPNteam Member asked a question 💭
posted April 4
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A myMPNteam Member

Yes, i would say so. Jakafi medication stopped my inflammation so i have no more night sweats. No longer bone pain either. We're all different but good to discuss this with your haemotologist or… read more

posted April 7
Does Benedryl Help With The Itchy Skin Issue?
A myMPNteam Member asked a question 💭
posted April 3
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