Blood Cancers & Disorders Support Group

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Comments (1,104)

Hi @pennyhedgecoth and welcome to the Blood Cancers & Disorders group. I'm glad you found us....

https://connect.mayoclinic.org/comment/329372/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Dec 9, 2020

My husband has just been diagnosed with MDS after having JAK2 for about ten years. His...

https://connect.mayoclinic.org/comment/1201670/

Discussion: MDS and cognitive decline

Support Group: Blood Cancers & Disorders

Posted: Jan 1 10:12am

I too had ET due to a JAK2 . Platelet count got to 800,000. I had...

https://connect.mayoclinic.org/comment/1195372/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2024

My experience was the best possible. I arrived, was put in a gown, and given a...

https://connect.mayoclinic.org/comment/1166063/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2024

I am on it for almost a year. I read it takes about six months or...

https://connect.mayoclinic.org/comment/993710/

Discussion: ET, Polycythemia, Jax2: Is this a blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2024

Good morning Pumpkin.....I posted a message to you the other day but I think I touched...

https://connect.mayoclinic.org/comment/774152/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2022

Welcome to Connect, @pearly, and thank you for sharing your history. Essential thrombocythaemia (ET) is indeed...

https://connect.mayoclinic.org/comment/146291/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2017

After being diagnosed with ALL, then T-Cell large granular LL. I wondered by my platelets went...

https://connect.mayoclinic.org/comment/1325185/

Discussion: I am looking for advice on lab work and how to address my Dr about it

Support Group: Blood Cancers & Disorders

Posted: Jun 11 5:21pm

Hello, I am 1.5 years into taking it. My platelets were 950 as well and I...

https://connect.mayoclinic.org/comment/950065/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2023

Hi, I've been following along, interested because I've had ET w/Jak2 for almost 2 years. Earlier...

https://connect.mayoclinic.org/comment/1174348/

Discussion: Are visual disturbances related to ET or hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Nov 16, 2024

You are absolutely correct on doctors taking time before they can figure out the problem with...

https://connect.mayoclinic.org/comment/1064567/

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

Support Group: Blood Cancers & Disorders

Posted: May 9, 2024

I was diagnoses with ET Jak2 in jaune 2024, I am 70, jog and exercise daily,...

https://connect.mayoclinic.org/comment/1025941/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Mar 2, 2024

My hematologist said it's in the MPN cancer family but it doesn't work like a cancer....

https://connect.mayoclinic.org/comment/995692/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2024

My JAK2 Mutation was discovered 11 years ago, quite by accident. I never had any symptoms....

https://connect.mayoclinic.org/comment/194343/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2019

I take HU daily 500mg every night before bed. I sleep okay, but often have some...

https://connect.mayoclinic.org/comment/1325670/

Discussion: Contolling Hydroxyurea fatigue by time of day you take the medication

Support Group: Blood Cancers & Disorders

Posted: Jun 12 11:42am

JAK2+, diagnosed Feb 2024. Counts had been elevated for 3 years, then jumped at annual physical....

https://connect.mayoclinic.org/comment/1191756/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2024

I am have ET (JAK2+). I have been using bio identical hormones for 17 years with...

https://connect.mayoclinic.org/comment/1151761/

Discussion: Thoughts on bio identical hormones and ET?

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2024

Hi I have ET and Jak2 mutation. I have been on HU for 3 weeks. My...

https://connect.mayoclinic.org/comment/1120672/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2024

Hi there, I have MDS/MPN overlap. I have the JAK2 mutation and have been on 500...

https://connect.mayoclinic.org/comment/1027326/

Discussion: Pain in Upper Left Abdomen

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2024

I started HU once a week for a month, then 2x week for 8 months. This...

https://connect.mayoclinic.org/comment/1006501/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2024