Blood Cancers & Disorders Support Group

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Comments (462)

Hi Lori, Just wanted to update re: husband's upcoming BMT. He is scheduled for a splenectomy...

https://connect.mayoclinic.org/comment/703809/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Apr 29, 2022

I am 72 years of age and was also diagnosed with ET in November of 2024....

https://connect.mayoclinic.org/comment/1329859/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2025

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

Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and...

https://connect.mayoclinic.org/comment/1017399/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2024

Hi, very sorry for delayed response, battled illness not related to PV. I would say both...

https://connect.mayoclinic.org/comment/1459316/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

Hello @wellness3070, Connect members @jfinlay, @djr, @bijou have discussed Jakafi in the past as well; you...

https://connect.mayoclinic.org/comment/132602/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 7, 2017

Good morning, @onthejoedock. These are lovely photos of your handsome husband…so active and vital. But the...

https://connect.mayoclinic.org/comment/1082921/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 8, 2024

Without knowing I was heading for it my first symptoms were headaches, then pink -red “blotches”...

https://connect.mayoclinic.org/comment/872001/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Jun 4, 2023

Hi, I was diagnosed with PMF CALR + Int. 2 back in March 2021. It took...

https://connect.mayoclinic.org/comment/1045170/

Discussion: Anyone with primary myelofibrosis, low risk, asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Apr 4, 2024

The problem is skinney doesn't stop. My wife usually wears a size 8 and now finds...

https://connect.mayoclinic.org/comment/132652/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2020

@jtcat7 thank you for commenting. I have to say that although hydroxyurea really did a number...

https://connect.mayoclinic.org/comment/1550651/

Discussion: Primary Myelofibrosis: so unsure of everything, need answers

Support Group: Blood Cancers & Disorders

Posted: Apr 14 5:44pm

@chrondor (Jake), I'd like to add my welcome along with @edb1123. I'm also tagging fellow CML-ers...

https://connect.mayoclinic.org/comment/776332/

Discussion: Sprycel/Jakafi/living with CML

Support Group: Blood Cancers & Disorders

Posted: Nov 22, 2022

Resveratrol was being studied as a treatment for ET until the JAK inhibitors like Jakafi were...

https://connect.mayoclinic.org/comment/868606/

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

Support Group: Blood Cancers & Disorders

Posted: May 29, 2023

No, not at all. First when it was determined that I had the high white count...

https://connect.mayoclinic.org/comment/1314380/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 27, 2025

I was diagnosed with Polycythemia Vera (PV) a year ago. The pruritus was a symptom before...

https://connect.mayoclinic.org/comment/1236497/

Discussion: MDS-CMML-1: Anyone dealing with pruritus (itching)?

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

As everybody is different, reactions cannot be generalized. I have seen some posts that have been...

https://connect.mayoclinic.org/comment/1350290/

Discussion: Will my Hydroxyurea dose ever be reduced? Does this happen with ET?

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2025

I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The...

https://connect.mayoclinic.org/comment/793807/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2023

The best comment was to listen and ask your trusted doc. Not chats. Some people will...

https://connect.mayoclinic.org/comment/1279956/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2025

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, 2024

@loribmt Thank you for the follow up. The clinical trial physician is very happy with the...

https://connect.mayoclinic.org/comment/1582225/

Discussion: Jakofi or BMT for Myelofibrosis

Support Group: Blood Cancers & Disorders

Posted: 12 hours ago

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