Blood Cancers & Disorders Support Group

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Comments (1,099)

Hello, have just read read posts about sleep apnea. I have had PV with JAK2 for...

https://connect.mayoclinic.org/comment/856718/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: May 8, 2023

I have no pain or anything else with Hydrea, 500 mg daily. My platelets were 800,000...

https://connect.mayoclinic.org/comment/854230/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 4, 2023

Please do not rely on Chinese Herbs ( no disrespect )Please find a specialist to determine...

https://connect.mayoclinic.org/comment/1228037/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Feb 2 7:16pm

It sound like your doctors are on top of your health. That is a high Jak2...

https://connect.mayoclinic.org/comment/1156319/

Discussion: After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Support Group: Blood Cancers & Disorders

Posted: Oct 13, 2024

Maybe asked already, were you tested for the JAK2 mutation (or others)? This would typically be...

https://connect.mayoclinic.org/comment/1102017/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2024

I was diagnosed with PV two years ago. Absolutely no exposure to radiation. Haematologist says it’s...

https://connect.mayoclinic.org/comment/1100223/

Discussion: Contracting/developing polycythemia vera

Support Group: Blood Cancers & Disorders

Posted: Jul 6, 2024

I’ve just progressed from CML to AML and will be starting same treatment next week. I’d...

https://connect.mayoclinic.org/comment/994063/

Discussion: AML, age 78, taking Decetabine/ Venetoclax, no transplant

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2024

I found MPN Voice on healthunlocked.com. I was diagnosed with ET JAK2 in June 2022 so...

https://connect.mayoclinic.org/comment/770040/

Discussion: People living with ET and taking Hydrea: Anybody setting records?

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2022

Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...

https://connect.mayoclinic.org/comment/913626/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2023

with pv NO when they take your blood it cannot be donated. I asked the oncologist...

https://connect.mayoclinic.org/comment/737001/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2022

Realized I did not answer your initial question. I am not a dr, but my understanding...

https://connect.mayoclinic.org/comment/720876/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Jun 25, 2022

I do have JAK2. Platelets have been in the 700's since I had to come off...

https://connect.mayoclinic.org/comment/1067492/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: May 13, 2024

The Bone Marrow procedure is a first step. He should also do a molecular panel to...

https://connect.mayoclinic.org/comment/328572/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2020

Am I understanding right that your hemoglobin and hemocrit are high, you have PV symptoms, you're...

https://connect.mayoclinic.org/comment/888838/

Discussion: PV positive & Jak2 neg - good thing??

Support Group: Blood Cancers & Disorders

Posted: Jul 2, 2023

Does anyone else have severe itching and tingling all over really bad at night I have...

https://connect.mayoclinic.org/comment/1088584/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 17, 2024

also, to be clear.. I haven't been properly "diagnosed" yet I don't think... just my hematologist's...

https://connect.mayoclinic.org/comment/840529/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

Good morning, @onthejoedock. When there is a mutation with the JAK2 gene, it can interfere with...

https://connect.mayoclinic.org/comment/1009921/

Discussion: How bad is a diagnosis of Polycythemia Vera?

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

I may be oversimplifying it, but after being diagnosed with ET my doctor wanted to check...

https://connect.mayoclinic.org/comment/1132796/

Discussion: Bone Marrow Aspiration - Long Term Pain Expecations

Support Group: Blood Cancers & Disorders

Posted: Aug 29, 2024

I have ET with JAK2. Please see my post: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-treatment-with-besremi/?pg=3#comment-1321409 I am happy to answer any...

https://connect.mayoclinic.org/comment/1321411/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 6 8:59am

Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have...

https://connect.mayoclinic.org/comment/1203402/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Jan 3 9:54pm