Blood Cancers & Disorders Support Group

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Comments (524)

HI The only side affect I have had is tiredness, I avoid sitting in the sun...

https://connect.mayoclinic.org/comment/940309/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2023

@hipsu5 @colleenyoung ; @janemc I have received results from my BMP. And I am happy to...

https://connect.mayoclinic.org/comment/1531053/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 20 1:55am

Hi @gajokos , Thank you for sharing. I think JAK2 is the most common mutation found...

https://connect.mayoclinic.org/comment/1494798/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 31 9:36am

Hi Tim, I was diagnosed with myelofibrosis (JAK-2) in October 2025. Currently waiting for a second...

https://connect.mayoclinic.org/comment/1501187/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 8 5:43pm

@allessio77 I’ve had PN for several years with pain increasing. Diagnosed with myelofibrosis, I began Hydrea...

https://connect.mayoclinic.org/comment/1459116/

Discussion: Does anyone have neuropathy related to MGUS?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

@carolgk Good morning? Thank you for mentioning Vonjo. I will ask my oncologist about it. I...

https://connect.mayoclinic.org/comment/1537693/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 29 7:16am

I was diagnosed with myelofibrosis, mds & mpn in March 2025. Im waiting for a donor...

https://connect.mayoclinic.org/comment/1368766/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

jseeker. Have you message The Moffitt center or her current dr for help with this symptom?...

https://connect.mayoclinic.org/comment/1210759/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2025

Glad that you share faith in Jesus Christ. Two things I observe: 1. It was a...

https://connect.mayoclinic.org/comment/1139944/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Sep 11, 2024

Thanks Coleen for your input. My husband's disease is not considered leukemia but a disease of...

https://connect.mayoclinic.org/comment/101842/

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

Support Group: Blood Cancers & Disorders

Posted: May 28, 2016

My husband found out in January he has myelofibrosis, it was a shock to us. He...

https://connect.mayoclinic.org/comment/1412275/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 9, 2025

I have been taking Jakafi for post essential thrombocytosis (PET) Myelofibrosis since Nov 2020 and had...

https://connect.mayoclinic.org/comment/1091493/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 22, 2024

Hi @sonja239. I understand your duress with having received news that you have two myeloproliferative blood...

https://connect.mayoclinic.org/comment/1097321/

Discussion: Why is a new bone marrow biopsy necessary?

Support Group: Blood Cancers & Disorders

Posted: Jul 1, 2024

Greetings, I don't like the idea of looking towards an 'end stage'. That sounds like disaster....

https://connect.mayoclinic.org/comment/1049371/

Discussion: Anyone have information about late stages of primary myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2024

Have you had a bone marrow biopsy to be sure that what you’re dealing with is...

https://connect.mayoclinic.org/comment/1215424/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 18, 2025

Yes unfortunately that is true. For years after my mom passed from Myelofibrosis I donate to...

https://connect.mayoclinic.org/comment/982569/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 18, 2023

Erikaerika, I just looked at NIH.gov and as of 2020 the median survival age of people...

https://connect.mayoclinic.org/comment/799775/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Jan 21, 2023

Bonnie, You will be amazed at how it will all come together with planning. Having such...

https://connect.mayoclinic.org/comment/1324245/

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

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

Posted: Jun 10, 2025

Thank you , your post was a Godsend. After a down day yesterday with my husband’s...

https://connect.mayoclinic.org/comment/1252374/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2025

Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the...

https://connect.mayoclinic.org/comment/870437/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

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