Blood Cancers & Disorders Support Group

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Comments (362)

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

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

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

@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

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

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

Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google....

https://connect.mayoclinic.org/comment/875590/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

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

I was diagnosed with Polycythemia Vera 3 years ago. My treatment included regular phlebotomies every couple...

https://connect.mayoclinic.org/comment/1185667/

Discussion: Blood Donor: Is it safe to donate blood if you have a blood condition?

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2024

I was diagnosed with Polycythemia Vera about three years ago. It was explained to me that...

https://connect.mayoclinic.org/comment/1163233/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 26, 2024

@trillium, yes I would call the appointment line in Phoenix again and explain the situation regarding...

https://connect.mayoclinic.org/comment/336439/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Mar 6, 2021

Hello, I have Polycythemia Vera and see a local Oncologist and an MPN Specialist at the...

https://connect.mayoclinic.org/comment/1021606/

Discussion: Finding the right cancer care team

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2024

When I was diagnosed with a blood disorder, and very hi Hemocrit levels, my Hemotologist did...

https://connect.mayoclinic.org/comment/1002254/

Discussion: At my wits end. Not sure where to go from here.

Support Group: Blood Cancers & Disorders

Posted: Jan 23, 2024

Hi @suanne90. You’ve popped into a conversation in the Blood Cancers & Disorders Support Group. The...

https://connect.mayoclinic.org/comment/1166282/

Discussion: Any suggestions on what time of day is best for taking Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2024

My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting...

https://connect.mayoclinic.org/comment/803537/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2023

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