Blood Cancers & Disorders Support Group

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Comments (1,382)

Welcome, Lisa! Everyone’s story will be slightly different with a few similarities. We all have a...

https://connect.mayoclinic.org/comment/1162559/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

Recently diagnosed with ET with JAK2& in a few months of daily HU my platelet count...

https://connect.mayoclinic.org/comment/1062393/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 5, 2024

Oh Debbie I forgot to mention yes, I have tested positive for jAK2 As well as...

https://connect.mayoclinic.org/comment/974136/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Dec 2, 2023

Last time my platelets were just over 700. Now I'm on 1000mg of HU daily. Hopefully...

https://connect.mayoclinic.org/comment/835015/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2023

I'm Jak2 positive also verified by 2 separate labs..I wasn't happy with my first hematologist not...

https://connect.mayoclinic.org/comment/1088001/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2024

Hello, I've just found out I have the Jak2 mutation and will go for a biopsy...

https://connect.mayoclinic.org/comment/763496/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2022

PV allele burden (VAF) from quantitative test I have had 2 JAK2 tests, one qualitative, that...

https://connect.mayoclinic.org/comment/1147354/

Discussion: How much of a risk factor is high white blood cell count with pv?

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2024

Hi, I'm jumping in because I have ET with Jak2 positive. I am on Hydrea 500mg...

https://connect.mayoclinic.org/comment/194273/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2019

Hi, Joining in to read up on PV while waiting for my Jak2 results.. I'm 43...

https://connect.mayoclinic.org/comment/840478/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

Hi Justin. Unfortunately, there are few responses regarding my questions about JAK2, Essential Thrombocythemia and Waldromstrom's...

https://connect.mayoclinic.org/comment/284527/

Discussion: Jak 2 and Waldenstrom's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Dec 20, 2019

Lori, I'm 75 take 325mg aspirin and 1500mg HU every other day and 1000mg on opposite...

https://connect.mayoclinic.org/comment/975739/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2023

I was diagnosed with JAK2 617F in 2/2020 and began hydroxyurea treatment in 4/2022. I just...

https://connect.mayoclinic.org/comment/670146/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Jan 11, 2022

Sorry, I didn't quite follow this. Does your husband's doc think the jump to 1,000 was...

https://connect.mayoclinic.org/comment/826408/

Discussion: Essential Thrombocytosis - what's your experience with Jakifi?

Support Group: Blood Cancers & Disorders

Posted: Mar 15, 2023

I just turned 77, diagnosed with ET JAK2+ about a month ago. Taking baby aspirin daily...

https://connect.mayoclinic.org/comment/1465428/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Dec 21, 2025

Hi, @toste. I was diagnosed with prefibrotic myelofibrosis in June. JAK2, ASXL1, ZRSR2 & TET2 mutations....

https://connect.mayoclinic.org/comment/1433724/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2025

I have just been diagnosed, ET with JAK2 mutation....he wants me to start on Hydrea...it is...

https://connect.mayoclinic.org/comment/194370/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2020

Welcome jewelfaux, When were you first diagnosed with ET JAK2 and what was your initial platelet...

https://connect.mayoclinic.org/comment/827844/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 18, 2023

@cathy8 It is interesting for me to hear that you have both CALR and Jak2. I...

https://connect.mayoclinic.org/comment/1485056/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: Jan 17 6:39pm

@jewelfaux and @nypara66, You’re both correct. It is possible to determine if a patient has the...

https://connect.mayoclinic.org/comment/1023538/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2024

Thank you for the responses. My doctor at Kaiser ordered the JAK2 test, but I freaked...

https://connect.mayoclinic.org/comment/941863/

Discussion: Worried about slightly elevated platelet count

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2023