Blood Cancers & Disorders Support Group

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Comments (924)

My Naturopathic Physician suggested I see a Oncologist or Hemotologist in 2013 because my Platelets were...

https://connect.mayoclinic.org/comment/194297/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2019

After asymptomatic high platelets in the 600 range, a bone marrow biopsy revealed JAK2 and I...

https://connect.mayoclinic.org/comment/940348/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2023

I also read the pamphlet and freaked out but did my research. This drug has been...

https://connect.mayoclinic.org/comment/1026291/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 2 6:25pm

A "safe" platelet count usually takes into consideration age, driver mutation, and clot history. Somebody in...

https://connect.mayoclinic.org/comment/1025894/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 2 8:22am

I'm CALR, too. Been on HU for 6 years and bloodwork very stable in 400s once...

https://connect.mayoclinic.org/comment/1089100/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 18 9:55am

Hi Wendy, it’s my pleasure to help any way I can. Going through my leukemia and...

https://connect.mayoclinic.org/comment/876086/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 10, 2023

To eetap, 1) The JAK2 mutation is typically found either after a clotting event or routine...

https://connect.mayoclinic.org/comment/719531/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2022

Well this is my gang, here. I was just diagnosed (age 64, now one day away...

https://connect.mayoclinic.org/comment/778788/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Nov 29, 2022

Welcome @ontheverge I am 79 and was diagnosed last year with ET JAK2 by labs and...

https://connect.mayoclinic.org/comment/869114/

Discussion: JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches

Support Group: Blood Cancers & Disorders

Posted: May 30, 2023

Mine came out of nowhere - last September I started with severe GI issues after a...

https://connect.mayoclinic.org/comment/1060628/

Discussion: Essential Thrombocythaemia

Support Group: Blood Cancers & Disorders

Posted: May 2 7:02am

If you are over 60, have JAK2, you are at moderate clot risk and doc will...

https://connect.mayoclinic.org/comment/1147040/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 25 8:49am

Hi Pink Flamingo, I call this "the scary club". Friends laugh at this and laughter is...

https://connect.mayoclinic.org/comment/836941/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2023

Hi Beth, My experience is very similar to yours. BMB in September 2020 favors ET with...

https://connect.mayoclinic.org/comment/840273/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

Hi Becky, I have MDS/MPN overlap with Thrombocytosis and I'm also in the early stage of...

https://connect.mayoclinic.org/comment/278675/

Discussion: New dx of Post ET-MF

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2019

I have documented (JAK2 positive) PV and on hydrox..I understand your fear and there are many...

https://connect.mayoclinic.org/comment/1097487/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 1 12:30pm

Hi @onthejoedock Polycythemia vera is a type of cancer that causes red blood cells to multiply....

https://connect.mayoclinic.org/comment/1009341/

Discussion: How bad is a diagnosis of Polycythemia Vera?

Support Group: Blood Cancers & Disorders

Posted: Feb 4 9:50am

I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes...

https://connect.mayoclinic.org/comment/810105/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 11, 2023

As a follow up to my question, I searched for diagnostic criteria for PV (since they...

https://connect.mayoclinic.org/comment/231777/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2019

Thank you for posting these results. It helps to see the actual numbers. I’m not a...

https://connect.mayoclinic.org/comment/1083081/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jun 8 2:11pm

I was originally misdiagnosed with Essential Thrombocythemia in 2018 by a hematologist at the VA Hospital...

https://connect.mayoclinic.org/comment/328598/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2021