Blood Cancers & Disorders Support Group

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Comments (337)

Welcome Linda. Here you can connect with others living with Polycythemia Vera like @chadknudson @hope19 @atir...

https://connect.mayoclinic.org/comment/647644/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2021

My platelets bounce between 57 to 600 then back down to 80. I was on hydroxyurea...

https://connect.mayoclinic.org/comment/1083471/

Discussion: Which specific kind of doctor looks into thrombocytopenia?

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2024

Lori, thank you very much for your comments, which are most helpful. My CT Scan was...

https://connect.mayoclinic.org/comment/840197/

Discussion: Hematocrit Continues to Drop After Stopping Hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one...

https://connect.mayoclinic.org/comment/1016598/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2024

Thank you for your quick response. Can you help me understand a bit more?--he said the...

https://connect.mayoclinic.org/comment/194309/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2019

Hi, Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted...

https://connect.mayoclinic.org/comment/231783/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2019

Hi @sap21981, from my research and understanding, a stem cell transplant for PV is rarely used....

https://connect.mayoclinic.org/comment/893527/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2023

Good morning, @jose10. What a lovely thing to say!! This is one of those really ‘feel...

https://connect.mayoclinic.org/comment/1458352/

Discussion: Thanks: Just want to say thank you

Support Group: Blood Cancers & Disorders

Posted: Dec 11, 2025

Yes, that’s exactly what I did. For two years, I had uncontrollable itching and no other...

https://connect.mayoclinic.org/comment/876352/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 11, 2023

Have you been diagnosed with PV? Your platelets are just slightly high and not dangerous. I...

https://connect.mayoclinic.org/comment/846633/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

I’m diagnosed with PV Polycythemia Vera. The phlebotomies are to lower my hematocrit but I’ve noticed...

https://connect.mayoclinic.org/comment/835194/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2023

Hello friends!! I have confirmed MYELOFIBROSIS! Just started taking OJJAARA ABOUT TEN DAYS AGO ! This...

https://connect.mayoclinic.org/comment/1411968/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 9, 2025

Hi @bharty615 Generally, a bone marrow transplant is reserved for extreme conditions such as leukemia, MDS,...

https://connect.mayoclinic.org/comment/1079339/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Jun 2, 2024

Hi Lori! I purchased the Bioaid Hemoglobin Testing System on Amazon. It was 82.00. It resembles...

https://connect.mayoclinic.org/comment/878178/

Discussion: Diagnosed with PV: Anyone used a home hemoglobin testing kit?

Support Group: Blood Cancers & Disorders

Posted: Jun 14, 2023

The meds will work but takes a while to get the dosage correct. My platelets were...

https://connect.mayoclinic.org/comment/1064057/

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

Support Group: Blood Cancers & Disorders

Posted: May 8, 2024

Regarding your feeling alone. in 2018 when I was inducted into the polycythemia vera club I...

https://connect.mayoclinic.org/comment/1219395/

Discussion: Any advice for taking Hydroxyurea when you're sick?

Support Group: Blood Cancers & Disorders

Posted: Jan 23, 2025

Yes, I was diagnosed in May of 2022 but have had symptoms since 2019. I had...

https://connect.mayoclinic.org/comment/738411/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2022

Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you...

https://connect.mayoclinic.org/comment/231808/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 31, 2020

Hello Lori, You once commented on a response I made about finding a specialist for MPNs....

https://connect.mayoclinic.org/comment/1064989/

Discussion: Anyone experienced Bone Marrow Transplant with TP53 mutation?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: May 9, 2024

The best thing that I have found for dealing with polycythemia vera has been to adhere...

https://connect.mayoclinic.org/comment/787372/

Discussion: Polycythemia Vera: Is there anything I can do for fatigue at home?

Support Group: Blood Cancers & Disorders

Posted: Dec 21, 2022