Blood Cancers & Disorders Support Group

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Comments (1,103)

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 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 10:28am

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

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

Hi Lisa, my story is very similar to sregiani— ET with Jak2 mutation — Only my...

https://connect.mayoclinic.org/comment/1162618/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

I had seven vaccines in 2021 (3 Covid, 2 Shingrix, flu, Tdap booster. I developed psoriasis...

https://connect.mayoclinic.org/comment/815858/

Discussion: Shingrex and ET platelet levels

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2023

Good morning huronshores.......I have been taking Hydrea for almost two years and have back and joint...

https://connect.mayoclinic.org/comment/146309/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2020

@ettap I was wondering if you could give me any updates on your case. I have...

https://connect.mayoclinic.org/comment/194271/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2019

Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet...

https://connect.mayoclinic.org/comment/203931/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2018

Hello brooks7987, I have had PV w/JAK2 for over 5 years. I started on Hydroxurea almost...

https://connect.mayoclinic.org/comment/794995/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 10, 2023

Can someone please tell me the difference between PV & ET? Different symptoms? Can one turn...

https://connect.mayoclinic.org/comment/1066132/

Discussion: Polycythemia Vera or Essential Thrombocythemia ?

Support Group: Blood Cancers & Disorders

Posted: May 11, 2024

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

Thanks! I appreciate your story. I do know that progression to MF is likely if you...

https://connect.mayoclinic.org/comment/1329713/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Jun 18 9:06am

Hi @ettap, this post was years ago but curious how things are going now? If I'm...

https://connect.mayoclinic.org/comment/919567/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 27, 2023

Hello @ettap and welcome to Connect. It is good to see that you have confirmed your...

https://connect.mayoclinic.org/comment/194256/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2018

Hi, Lynnevb, I am curious as to why you went on hydrea after being on aspirin...

https://connect.mayoclinic.org/comment/1151729/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2024

Hi Linda, I am 80 and have been dealing with ET JAK2 for over two years....

https://connect.mayoclinic.org/comment/1146959/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2024