Blood Cancers & Disorders Support Group

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Comments (257)

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

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

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

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 8:07am

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

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 6:39am

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 3:24pm

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

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 7:23am

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 8:57am

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

@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

Per MayoClinicLabs Vitamin B12 Assay, Serum Many other conditions are known to cause an increase in...

https://connect.mayoclinic.org/comment/734618/

Discussion: High Levels of Vitamin B12 and Ferritin: Any pointers?

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2022

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

You may find that despite having the JAK2 mutation, your life may not be any noticeably...

https://connect.mayoclinic.org/comment/194269/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 26, 2018

Hi Nicole, I thought I'd post a link to your previous discussion for people who may...

https://connect.mayoclinic.org/comment/601872/

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

Support Group: Blood Cancers & Disorders

Posted: May 14, 2021

I have been on low dose Hydroxy for 2 months now - do notice small mouth...

https://connect.mayoclinic.org/comment/966488/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2023

Hi, @nicolekapr . @colleenyoung asked if maybe I had some helpful info on fatigue for you....

https://connect.mayoclinic.org/comment/336628/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 8, 2021