Blood Cancers & Disorders Support Group

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Comments (1,035)

Hi Brenda, IPSS-R are the initials for International Prognostic Scoring System - Revised. I know this...

https://connect.mayoclinic.org/comment/962588/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2023

Hi Lori and thank you for your reply. I was diagnosed from ITP to MDS maybe...

https://connect.mayoclinic.org/comment/1312711/

Discussion: MDS types: How did you find out what type you have?

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025

I wish I could give you some of my platelets! Mine are running 500 plus up...

https://connect.mayoclinic.org/comment/802496/

Discussion: My platelets are 120000

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2023

Hi @fortuitous, There’s another member in Connect (@sherbs)with the same DDX41 mutation only with MDS, not...

https://connect.mayoclinic.org/comment/1188086/

Discussion: Does anyone else have AML with ddx41 genetic mutation?

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2024

Since you mentioned ET and the VA in one sentence may I ask if you were...

https://connect.mayoclinic.org/comment/194347/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2019

Hi @gemmalouwho It’s been several months since you posted this discussion with your concerns about having...

https://connect.mayoclinic.org/comment/1477894/

Discussion: Very worried about MDS. I am extremely anxious and feel very alone.

Support Group: Blood Cancers & Disorders

Posted: Jan 9 6:53am

Well, after switching hospitals for a 2nd opinion. The 2nd hematologist took a baseline CBC using...

https://connect.mayoclinic.org/comment/1394746/

Discussion: Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

Support Group: Blood Cancers & Disorders

Posted: Sep 16, 2025

Hi again - I'm the 60 year old that got diagnosed with low-risk MDS recently in...

https://connect.mayoclinic.org/comment/1381753/

Discussion: Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

Support Group: Blood Cancers & Disorders

Posted: Aug 29, 2025

I was diagnosed about 3 months ago with MDS 5Q as well. Tried shots, didn't work,...

https://connect.mayoclinic.org/comment/1259703/

Discussion: Anyone have or heard of MDS with 5q-syndrome?

Support Group: Blood Cancers & Disorders

Posted: Mar 16, 2025

Anne-Marie, thank you for the information on MDS Centers of Excellence. I am fortunate since I...

https://connect.mayoclinic.org/comment/963241/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2023

I just saw this post. My aunt had MF and developed AML 30 yrs ago. Now...

https://connect.mayoclinic.org/comment/996062/

Discussion: Long awaited Drug for myelofibrosis (MF) has been released

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2024

I was diagnosed with mild MDS at 65. Not eligible for BMT. I had transfusions for...

https://connect.mayoclinic.org/comment/1384545/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 1, 2025

I have had 4 bone marrow biopsies as i have had MDS. I am one who...

https://connect.mayoclinic.org/comment/1231146/

Discussion: Could we talk about anxiety with MGUS

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2025

I have low platelets. My “normal” is around 68,000. I was diagnosed with ITP. It’s an...

https://connect.mayoclinic.org/comment/1025699/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2024

@ron79mds My husband who is 81 was diagnosed with myelofibrosis in January 2025. Which is a...

https://connect.mayoclinic.org/comment/1448775/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2025

Have you looked it up in the search bar above? I needed to look up CLL...

https://connect.mayoclinic.org/comment/1233292/

Discussion: Anyone else experiencing these symptoms with CLL diagnosis....?

Support Group: Blood Cancers & Disorders

Posted: Feb 9, 2025

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant. Doctor...

https://connect.mayoclinic.org/comment/864385/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 22, 2023

After many years of dealing with MDS and MF my spleen was Huge. I had a...

https://connect.mayoclinic.org/comment/1029072/

Discussion: Polycythemia causing enlarged spleen

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2024

Please get the bone marrow biopsy you need those answers. My husband has had at least...

https://connect.mayoclinic.org/comment/1003201/

Discussion: At my wits end. Not sure where to go from here.

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2024

@pineyb YOU are correct! I am a nurse and doing my own research, since this disease...

https://connect.mayoclinic.org/comment/1462199/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2025