Blood Cancers & Disorders Support Group

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Comments (1,035)

I have just been diagnosed with Myelodysplastic Syndromes ( MDS-a bone marrow decease) & Myelofibrosis (MF-blood...

https://connect.mayoclinic.org/comment/194288/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 20, 2019

@bhbooze I was a platelet donor for 25 years, so i knew my blood numbers. When...

https://connect.mayoclinic.org/comment/1444401/

Discussion: 79 year old male with MDS: Worried about increasng fatigue

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2025

Have you or anyone you know dealing with MDS ever enjoyed a remission? Or even a...

https://connect.mayoclinic.org/comment/1382705/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Aug 30, 2025

Jeff - lustpatercept is one of our options. I did not know del 5q could not...

https://connect.mayoclinic.org/comment/1361236/

Discussion: MDS with sideroblasts and trying Lospatercept or Elritercept?

Support Group: Blood Cancers & Disorders

Posted: Aug 1, 2025

Hi Lori Well I'm always on my feet, walking around, working in the shop etc. The...

https://connect.mayoclinic.org/comment/1548241/

Discussion: Just noticed this today: MDS and bruising?

Support Group: Blood Cancers & Disorders

Posted: Apr 11 7:53pm

@bbmj06 I did not take that with my MDS. Is joint pain a side effect of...

https://connect.mayoclinic.org/comment/1549168/

Discussion: Just got my blood test results today. I have MDS

Support Group: Blood Cancers & Disorders

Posted: Apr 12 9:42pm

Hi @smetzing I’m wondering how your husband is doing. Was there any mention of having another...

https://connect.mayoclinic.org/comment/940148/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Oct 1, 2023

Hi @jschellhaas. Honestly, I don’t think anyone is ever ready for chemo. I’ve been there myself...

https://connect.mayoclinic.org/comment/1198337/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Dec 27, 2024

We certainly are on a journey, and I have realized how little I know about what...

https://connect.mayoclinic.org/comment/1151321/

Discussion: Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

Support Group: Blood Cancers & Disorders

Posted: Oct 3, 2024

I have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white...

https://connect.mayoclinic.org/comment/1508964/

Discussion: Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

Support Group: Blood Cancers & Disorders

Posted: Feb 18 2:12pm

I’m a 59 yo female and I was diagnosed with MDS about 18 months ago and...

https://connect.mayoclinic.org/comment/1557286/

Discussion: MDS and walking.

Support Group: Blood Cancers & Disorders

Posted: 1 day ago

I was diagnosed with MDS over two years ago. My Hgb was at 7 at that...

https://connect.mayoclinic.org/comment/1142396/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Sep 16, 2024

My wife has been getting Procrit injections since Sept 2013, twice switch to Aranesp briefly, but...

https://connect.mayoclinic.org/comment/235269/

Discussion: MDS and Neupogen

Support Group: Blood Cancers & Disorders

Posted: Feb 28, 2019

Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age...

https://connect.mayoclinic.org/comment/924375/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Sep 4, 2023

My husband has this mutation for his MDS plus others . He is 83 years old...

https://connect.mayoclinic.org/comment/1493275/

Discussion: Does anyone have MDS with the SF3B1 mutation?

Support Group: Blood Cancers & Disorders

Posted: Jan 29 10:15am

Thank you for your reply. Your husband is blessed to have you advocating for him and...

https://connect.mayoclinic.org/comment/1250993/

Discussion: Anyone have both Myelodysplastic Syndrome (MDS) & Parkinson's?

Support Group: Parkinson's Disease

Posted: Mar 5, 2025

Hi @janetlen, I just read your first post regarding your diagnosis with MDS this summer and...

https://connect.mayoclinic.org/comment/986040/

Discussion: Myelodysplastic syndromes (MDS): When do you need to start treatment?

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2023

With all the current news on semaglutides for cognitive decline, has anyone tried that while also...

https://connect.mayoclinic.org/comment/1251804/

Discussion: AML with Cognitive Decline: At a loss of what to do for my father

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2025

I have MDS and MGUS (which is the precursor to MM). I am going to be...

https://connect.mayoclinic.org/comment/1017373/

Discussion: Has anyone been diagnosed with both AML and Multiple Myeloma?

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2024

Hi Anne, My name is Brenda. I was diagnosed August 2023 with MDS. Hope you can...

https://connect.mayoclinic.org/comment/997417/

Discussion: Has anyone heard of VEXAS syndrome?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2024