Blood Cancers & Disorders Support Group

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Comment

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

Comment

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

Comment

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

Comment

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

Comment

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

Comment

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

Comment

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

Comment

@pamdg, you may be interested in these related discussions: - What's the latest Jakafi (ruxolitinib) for...

https://connect.mayoclinic.org/comment/1444333/

Discussion: JAKAFI anyone! I've been on it for 5 years

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2025

Comment

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

Comment

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

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