Blood Cancers & Disorders Support Group

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Comments (1,391)

I’ve had high platelets in the 600-700 range for close to 20 yrs. It was never...

https://connect.mayoclinic.org/comment/811832/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2023

I am 78 with ET JAK2, started taking HU 500 mg daily in June 2022. Started...

https://connect.mayoclinic.org/comment/790060/

Discussion: MGUS with Polycythemia Vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2022

Hi, very sorry for delayed response, battled illness not related to PV. I would say both...

https://connect.mayoclinic.org/comment/1459316/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

I have been taking daily 600mgs of HU for 6 yrs (Droxia formulation). When I started...

https://connect.mayoclinic.org/comment/1168197/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Nov 4, 2024

Have you filed a lawsuit claim with the VA yet? You may be entitled to medical...

https://connect.mayoclinic.org/comment/194353/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2020

Not certain this is going to post as I still don’t have a password , so...

https://connect.mayoclinic.org/comment/767118/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2022

Hello. You made me look up Chuvash. Interesting. I have PV/JAK2. So, you write you’ve had...

https://connect.mayoclinic.org/comment/1479523/

Discussion: Secondary polycythemia: What are the treatment options?

Support Group: Blood Cancers & Disorders

Posted: Jan 11 10:12am

Hi mdterp76, Thank you for posting. I do have high platelet but less than one million....

https://connect.mayoclinic.org/comment/1221787/

Discussion: What are pros of hydroxyurea vs other methods of lowering platelets?

Support Group: Blood Cancers & Disorders

Posted: Jan 26, 2025

Hi...my name is Claire and I have jak2 mutant. Diagnosed in November 1918 and was given...

https://connect.mayoclinic.org/comment/256905/

Discussion: Are you taking medication for JAK2? How does it affect you?

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2019

Hello I am just starting phlebotomy treatment this week for Hereditary Hemochromatosis (with the HFE gene)....

https://connect.mayoclinic.org/comment/1539904/

Discussion: Non-HFE hemochromatosis (or high iron levels) while having Anemia

Support Group: Blood Cancers & Disorders

Posted: Mar 31 6:33pm

Re: connection between PAD and PV....I have been diagnosed recently with both PAD and PV. I...

https://connect.mayoclinic.org/comment/928250/

Discussion: PV and peripheral artery disease PAD

Support Group: Blood Cancers & Disorders

Posted: Sep 11, 2023

Hello themyth, I have been able to work a very physical job. I did and do...

https://connect.mayoclinic.org/comment/821972/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2023

Thank you for your response. Since JAK2 test was negative, I chose to go with phlebotomy....

https://connect.mayoclinic.org/comment/1370131/

Discussion: What hematocrit (HCT) targets indicate phlebotomy needed for PVC?

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2025

I do have a question. I was just diagnosed with JAK2 ET. Platelets at 790 and...

https://connect.mayoclinic.org/comment/1298528/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: May 6, 2025

Hey Lisa! I have pretty Much all The same Symptoms and am JAK2 pos. My platelets...

https://connect.mayoclinic.org/comment/1162393/

Discussion: JAK2 Mutation and enlarged spleen: What might it mean?

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

Dear PinkFlamingo, Wow!! Sorry for what you are going through. I had the JAK2 blood work...

https://connect.mayoclinic.org/comment/836159/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2023

Hi @cindyem I just read another comment you posted about having PV and anemia. From information...

https://connect.mayoclinic.org/comment/884148/

Discussion: Does anyone have information on PV with a low hemoglobin/ red count

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2023

Good morning, @pinkflamingo. Your @name made me smile and think fondly of Florida this spring morning....

https://connect.mayoclinic.org/comment/836087/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2023

I have not been total diagnosed yet. See my hematologist 3-5-26. I have a normal spleen...

https://connect.mayoclinic.org/comment/1515252/

Discussion: What vitamins to avoid when taking Hydrea (hydroxyurea) for ET JAK2?

Support Group: Blood Cancers & Disorders

Posted: Feb 26 4:37pm

I am 71 yo female, reasonably active, recently diagnosed with Jak2, with platelets rising to 750...

https://connect.mayoclinic.org/comment/887265/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2023