Blood Cancers & Disorders Support Group

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Comments (361)

I'm 19 years old, male. I have noted my elevated Hb level since three years ago,...

https://connect.mayoclinic.org/comment/1008041/

Discussion: Polycythemia Vera - Help getting Diagnosis

Support Group: Blood Cancers & Disorders

Posted: Feb 1, 2024

I was diagnosed at age 46 with Polycythemia Vera and am JAK-2 positive. My treatments have...

https://connect.mayoclinic.org/comment/194278/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 23, 2019

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have...

https://connect.mayoclinic.org/comment/1225257/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2025

Hi @dragonflylynda. For clarification, you actually have PV (polycythemia vera) caused by a defect in the...

https://connect.mayoclinic.org/comment/1464228/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Dec 19, 2025

@lwengel, as you likely already know, the USA Food and Drug Administration (FDA) approved December, 2014...

https://connect.mayoclinic.org/comment/751307/

Discussion: What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2022

I, too, am interested in what feedback others have. My platelets are in the 500s and...

https://connect.mayoclinic.org/comment/941103/

Discussion: Worried about slightly elevated platelet count

Support Group: Blood Cancers & Disorders

Posted: Oct 3, 2023

Further research into my hematocrit problem revealed that if you have polycythemia vera long enough it...

https://connect.mayoclinic.org/comment/843456/

Discussion: Hematocrit Continues to Drop After Stopping Hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 15, 2023

Weclome @lwengel, as you likely already know, the most common treatment for polychythemia vera (PV) is...

https://connect.mayoclinic.org/comment/738023/

Discussion: When is hydroxurea usually added to treat polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2022

I have had MGUS, then smouldering myeloma since 2013 with very small increases. 2 years ago...

https://connect.mayoclinic.org/comment/746666/

Discussion: MGUS with Polycythemia Vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2022

Our son was diagnosed with Polycythemia Vera Primary at 38 years old. He is 61. His...

https://connect.mayoclinic.org/comment/1505544/

Discussion: Polycythemia Vera: What is next when treatment stops working?

Support Group: Blood Cancers & Disorders

Posted: Feb 14 11:00am

I have Polycythemia Vera with Jak2 an 76 years old and diagnosed 3 yrs ago. My...

https://connect.mayoclinic.org/comment/1222785/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2025

What was your Iron before the infusion? Mine has been between 4 and 6. And I...

https://connect.mayoclinic.org/comment/999945/

Discussion: Polycythemia and lack of iron

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2024

Hi Keith, I moved your message to this existing discussion: - BESREMi anyone? https://connect.mayoclinic.org/discussion/besremi-anyone/ I did...

https://connect.mayoclinic.org/comment/911723/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2023

Welcome to Connect, @trarenrut. Typically, phlebotomies are done with patients who have polycythemia vera (PV) and...

https://connect.mayoclinic.org/comment/1313908/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 27, 2025

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

Hi @lwengel, this sounds like a really good question to ask your doctors. Sometimes you have...

https://connect.mayoclinic.org/comment/770258/

Discussion: PV and atrial fibrillation

Support Group: Blood Cancers & Disorders

Posted: Nov 7, 2022

When I first heard I had polycythemia Vera JAK 2 positive (Im sure everyone knows you...

https://connect.mayoclinic.org/comment/1455166/

Discussion: Polycythemia vera (PV): Does altitude matter?

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2025

Hi @mirakrye Well, that’s a heckuva way to ring in the new year with a change...

https://connect.mayoclinic.org/comment/1479514/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 11 10:03am

I originally had a platelet count of 555 that started my journey. I was diagnosed with...

https://connect.mayoclinic.org/comment/780489/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2022

Hi @pennyhedgecoth, I'm tagging @stevehurlburt on this reply since I think your question about genetic testing...

https://connect.mayoclinic.org/comment/591406/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2021

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