Blood Cancers & Disorders Support Group

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Comments (1,397)

Hi cowestwinds, I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June...

https://connect.mayoclinic.org/comment/792191/

Discussion: High platelets, Jak2, ET, and pre-fib new diagnosis

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

I (75 yr) was diagnosed with ET a couple of weeks ago and was started on...

https://connect.mayoclinic.org/comment/1395975/

Discussion: Living with ET

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

I have posted before about having JAK2 mutation - I have been followed by Hemo-oncologist for...

https://connect.mayoclinic.org/comment/975372/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2023

Hi Lorne…welcome to the site, Are you taking it with a full glass of water? Are...

https://connect.mayoclinic.org/comment/792340/

Discussion: Any recommendations for ongoing mild headaches with Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

I didn't like varying my HU dosage from 500mgs to 1000mgs from day to day; I...

https://connect.mayoclinic.org/comment/1148733/

Discussion: Need help newly diagnosed with a high platelet count and the JAK2 gene

Support Group: Blood Cancers & Disorders

Posted: Sep 28, 2024

Polycythemia vera (PV) is primarily classified as a blood disorder, but it has characteristics of a...

https://connect.mayoclinic.org/comment/1114380/

Discussion: Been struggling with Polycythemia Vera for 2 years

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2024

Thank you I am looking into many things at the moment, perhaps a clinical trial for...

https://connect.mayoclinic.org/comment/50502/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2011

Hi @winmil99, Many medications have a rebound effect if stopped abruptly. The same goes for HU...

https://connect.mayoclinic.org/comment/1038999/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2024

@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon. Started on...

https://connect.mayoclinic.org/comment/1437600/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2025

You must have so many questions! You might want to use the search bar at the...

https://connect.mayoclinic.org/comment/1244801/

Discussion: Like to know more. Just told I have Triple Negative MPN.

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

Hi @nyjean. Hopefully I can answer your question about PV and ET. Those two conditions, along...

https://connect.mayoclinic.org/comment/1066510/

Discussion: Polycythemia Vera or Essential Thrombocythemia ?

Support Group: Blood Cancers & Disorders

Posted: May 12, 2024

Hi Kevin -- Recently diagnosed with ET with numbers close to yours. Have you had genetic...

https://connect.mayoclinic.org/comment/1039634/

Discussion: Im 64 and my blood platelets have been in the low 530-550 range for yr

Support Group: Blood Cancers & Disorders

Posted: Mar 24, 2024

I’m 57 Jak2+ with PV and no other risks factors for clotting thus far so that’s...

https://connect.mayoclinic.org/comment/1025967/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Mar 2, 2024

Hi @tokyolin, I am following up on Lori’s comments to you. I was diagnosed a year...

https://connect.mayoclinic.org/comment/882028/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2023

I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The...

https://connect.mayoclinic.org/comment/793807/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2023

I was originally diagnosed with ET based on a positive JAK2 bloid test. I asked the...

https://connect.mayoclinic.org/comment/194320/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2019

Hi Meg and others, I have ET and I am also a triple negative. I have...

https://connect.mayoclinic.org/comment/1512303/

Discussion: Anyone else have ET (thrombocytosis) with no gene mutation?

Support Group: Blood Cancers & Disorders

Posted: Feb 22 6:02pm

I was 75 and noticed severe itching after swim/bath. PC was uninterested in elevated hematocrit(57), but...

https://connect.mayoclinic.org/comment/885884/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2023

Hi @leanne1 Thank you so much for sharing your hemoglobin tester info with us! There are...

https://connect.mayoclinic.org/comment/878222/

Discussion: Diagnosed with PV: Anyone used a home hemoglobin testing kit?

Support Group: Blood Cancers & Disorders

Posted: Jun 14, 2023

Hello @katrink, While you’re waiting for other members with PV to comment on any difficulties they...

https://connect.mayoclinic.org/comment/1399546/

Discussion: Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Support Group: Blood Cancers & Disorders

Posted: Sep 23, 2025

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