Blood Cancers & Disorders Support Group

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Comments (115)

I think we all have theories about what caused our ET. My onset was age 55....

https://connect.mayoclinic.org/comment/1044606/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2024

God loves each and every one of us and does not relish seeing our pain and...

https://connect.mayoclinic.org/comment/1467013/

Discussion: MAID (Medical Aid In Dying)

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2025

Hi Joe, I don’t have CMML but I did have AML, now in remission after a...

https://connect.mayoclinic.org/comment/683276/

Discussion: Looking for recommendations of doctors with expertise in CMML

Support Group: Blood Cancers & Disorders

Posted: Feb 21, 2022

Hi @susanmarie52 It’s really encouraging that you are in active surveillance. Though there are different ‘types’...

https://connect.mayoclinic.org/comment/1634417/

Discussion: Diagnosed with a myeloid neoplasm (chronic myelomonocytic leukemia)

Support Group: Blood Cancers & Disorders

Posted: Jul 31 1:32pm

I have had CMML/Myeloproliferative disease for ten years and have tried everything for itching. I currently...

https://connect.mayoclinic.org/comment/1246622/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2025

I have been diagnosed with MDS 2016. Now I have been diagnosed with CMML. 3 yrs...

https://connect.mayoclinic.org/comment/1328601/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2025

Thank you again Lori. I am doing fine on the hydroxy 1000mg in the morning. I...

https://connect.mayoclinic.org/comment/1096464/

Discussion: I've had CML for 20 years and want to encourage others

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2024

At my annual clinic visit last summer I met with Dr. Go at Mayo, Rochester, and...

https://connect.mayoclinic.org/comment/297628/

Discussion: Adult Langerhans cell Histiocytosis and CMML

Support Group: Blood Cancers & Disorders

Posted: Mar 10, 2020

Diagnosed with MF 3+/3 in January 2026. This after a frustrating 3 year journey of symptoms,...

https://connect.mayoclinic.org/comment/1537181/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 28 10:04am

I have been in hydroxy for 6 weeks now. I take 2(500mg) a day. I was...

https://connect.mayoclinic.org/comment/1119123/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2024

My platelets have ranged from 50 to 80 for the last 2.5 years. We check blood...

https://connect.mayoclinic.org/comment/1233715/

Discussion: Low platelet count of around 120,000: What should be looked at?

Support Group: Blood Cancers & Disorders

Posted: Feb 10, 2025

I'm so sorry you are going through this. Nothing can prepare you for hearing that you...

https://connect.mayoclinic.org/comment/1596971/

Discussion: Primary Myelofibrosis: How did you come to terms with the diagnosis?

Support Group: Blood Cancers & Disorders

Posted: Jun 13 7:24am

I discovered I had MGUS through other testing that was done looking for a root cause...

https://connect.mayoclinic.org/comment/1200159/

Discussion: MGUS monitoring: What tests do you have done regularly?

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2024

Hi @jacklyn, if your doctor does increase your dose of hydroxy from 1000mg daily to 2000mg,...

https://connect.mayoclinic.org/comment/1096878/

Discussion: I've had CML for 20 years and want to encourage others

Support Group: Blood Cancers & Disorders

Posted: Jun 30, 2024

@loribmt Hi Lori. I was diagnosed with AML recently. It progressed from MDS which I had...

https://connect.mayoclinic.org/comment/1484798/

Discussion: AML, age 78, taking Decetabine/ Venetoclax, no transplant

Support Group: Blood Cancers & Disorders

Posted: Jan 17 12:42pm