Blood Cancers & Disorders Support Group

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Comments (224)

Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for...

https://connect.mayoclinic.org/comment/1103793/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 11 2:09pm

I'm extremely grateful that they have a better diagnostic system now, and even more grateful that...

https://connect.mayoclinic.org/comment/892932/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2023

My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A...

https://connect.mayoclinic.org/comment/693147/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2022

My buddy was diagnosed with Myelofibrosis at Mayo a few weeks ago. He will start on...

https://connect.mayoclinic.org/comment/697402/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2022

My husband had Lymes and Erlichiosis (another tick-borne disease) 12-15 years ago. In 2021 he was...

https://connect.mayoclinic.org/comment/764388/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2022

I think in the United States some insurance companies make you do step therapy…hydroxyurea first before...

https://connect.mayoclinic.org/comment/790422/

Discussion: New to Pegasys for ET - advice please!

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2022

@ettap , Great comment. Most importantly, because it pertains to me, as well!(!) Anyway, I have...

https://connect.mayoclinic.org/comment/652790/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2021

Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...

https://connect.mayoclinic.org/comment/913626/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2023

Welcome to Connect, @snakebite It’s so important for us to keep a positive countenance especially when...

https://connect.mayoclinic.org/comment/893512/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2023

I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness...

https://connect.mayoclinic.org/comment/840952/

Discussion: Hematocrit Continues to Drop After Stopping Hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2023

I, too am looking for confirmation ref serrapeptase and myelofibrosis. I took a nice product for...

https://connect.mayoclinic.org/comment/132626/

Discussion: Myelofibrosis*

Support Group: Blood Cancers & Disorders

Posted: May 14, 2020

Fantastic. If you scroll to the bottom of this information from Mayo Clinic, you'll find a...

https://connect.mayoclinic.org/comment/1103248/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 10 8:20pm

My husband has been diagnosed with myeloid Metaplasia with Myelofibrosis . White count was 30,000 and...

https://connect.mayoclinic.org/comment/101832/

Discussion: CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Support Group: Blood Cancers & Disorders

Posted: May 21, 2016

Fatigue is a common symptom with all forms of Leukemia and MDS or MPN disorders. Hydrea...

https://connect.mayoclinic.org/comment/850175/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 27, 2023

Hi @bjsdancer, I'm tagging @rcand10s who wrote about being diagnosed with Primary Myelofibrosis in 2013. I'm...

https://connect.mayoclinic.org/comment/101833/

Discussion: CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Support Group: Blood Cancers & Disorders

Posted: May 21, 2016

Stimme Sorry but I can't help you with the myelofibrosis because I have splenic marginal zone...

https://connect.mayoclinic.org/comment/591662/

Discussion: Chemo tablet or splenomegaly to reduce spleen enlargement?

Support Group: Blood Cancers & Disorders

Posted: Apr 4, 2021

I have the JAK2 and SRSF2 mutations. I was diagnosed with MDS/MPN overlap with Thrombocytosis. Extremely...

https://connect.mayoclinic.org/comment/194316/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: May 9, 2019

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

When I was diagnosed with Myelofibrosis back in 03/2024 my Hematologist placed me on Danazol. I...

https://connect.mayoclinic.org/comment/1132106/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 28 7:44am

et1055, I found this comment from Colleen, one of our monitors, on another thread. I myself...

https://connect.mayoclinic.org/comment/1168338/

Discussion: Are visual disturbances related to ET or hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Nov 5 6:38am