Blood Cancers & Disorders Support Group

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Comments (1,382)

Did your family doctor do the needle biopsy? I also had a benign goiter and non...

https://connect.mayoclinic.org/comment/878180/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 14, 2023

I am and I am glad to have found this group. I'm a 59 year old...

https://connect.mayoclinic.org/comment/1447477/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 26, 2025

@1995victoria I have JAK2/PV and take Hydroxyurea and low dose aspirin and I’ve taken 15mg of...

https://connect.mayoclinic.org/comment/1446979/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 25, 2025

Hi just joined, I was diagnosed with ET JAK2 circa Dec 2020 my platelets, RCC, MCV,...

https://connect.mayoclinic.org/comment/1445953/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2025

Hi @lyd0218 I am 81 and have ET JAK2 mutation, I started taking HU 500 mg...

https://connect.mayoclinic.org/comment/1322691/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Jun 8, 2025

I was diagnosed in Jan 2023 with PV I was 56 and no health issues or...

https://connect.mayoclinic.org/comment/1073615/

Discussion: Polycythemia Vera or Essential Thrombocythemia ?

Support Group: Blood Cancers & Disorders

Posted: May 24, 2024

now into my 4th year of HU for ET Jak2. My platelets rose for 3 years...

https://connect.mayoclinic.org/comment/1044045/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2024

Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria...

https://connect.mayoclinic.org/comment/856246/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: May 8, 2023

I was diagnosed just about a year ago with PV. Been on Hydrea since May. My...

https://connect.mayoclinic.org/comment/842778/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2023

After my shingles shot, a week later I had my routine quarterly blood chem for ET...

https://connect.mayoclinic.org/comment/1357438/

Discussion: Is it common for platelet level to drop?

Support Group: Blood Cancers & Disorders

Posted: Jul 27, 2025

When I first started with ET JAK2 in 2022 I was given 500 mg HU daily....

https://connect.mayoclinic.org/comment/1180620/

Discussion: Lightheadedness, Brain fog, Itchy: Side effects of HU or ET itself?

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2024

I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist...

https://connect.mayoclinic.org/comment/1026479/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2024

I have MDS/MPN with Thrombocytosis which means I have very high platelets (over 1.2 million). I...

https://connect.mayoclinic.org/comment/918100/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 24, 2023

I’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive....

https://connect.mayoclinic.org/comment/836589/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2023

Hello sorry for delayed response. I have had PV with JAK2 for almost 5 years. I...

https://connect.mayoclinic.org/comment/788322/

Discussion: Anyone with PV have insensitivity to cold?

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2022

I was diagnosed with myelofibrosis, mds & mpn in March 2025. Im waiting for a donor...

https://connect.mayoclinic.org/comment/1368766/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

I would love to hear more about achy bones. I'm trying to figure out if it's...

https://connect.mayoclinic.org/comment/1235164/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Feb 12, 2025

Sorry it took your expertise to get you to the right specialist for diagnosis. I have...

https://connect.mayoclinic.org/comment/1195072/

Discussion: My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2024

I definitely would ask about this - and ask for this testing if not done. For...

https://connect.mayoclinic.org/comment/1102239/

Discussion: Platelets are too high: What can be done to find root cause?

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2024

@loribmt That was great advice. I hope everyone with the JAK2 mutation reads it twice. As...

https://connect.mayoclinic.org/comment/1442435/

Discussion: Jak2 mutations w/high WBC

Support Group: Blood Cancers & Disorders

Posted: Nov 19, 2025