Blood Cancers & Disorders Support Group

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Comments (993)

I have myelodysplastic syndrome ( MDS). I will be starting on Lenalidomide hopefully next week. Caught...

https://connect.mayoclinic.org/comment/1359289/

Discussion: Just tired: Husband has colon cancer and I have MDS

Support Group: Caregivers

Posted: Jul 29, 2025

Diagnosed with MDS. I am very interested if there are other drugs than Vidaza? And if...

https://connect.mayoclinic.org/comment/1283488/

Discussion: Diagnosed with MDS: What is Paradox Effect with azacitidine (Vidaza)?

Support Group: Blood Cancers & Disorders

Posted: Apr 16, 2025

I have MDS/MPN with SF3B1 and ET. It's basically the same as MDS/MPN RS T -...

https://connect.mayoclinic.org/comment/970212/

Discussion: I have been diagnosed and under treatment for MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 25, 2023

Thanks! Right now, we are still figuring all this out. My numbers are low, too, especially...

https://connect.mayoclinic.org/comment/1073246/

Discussion: Myelodysplastic Syndrome and Sjogren's

Support Group: Blood Cancers & Disorders

Posted: May 23, 2024

My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October...

https://connect.mayoclinic.org/comment/996211/

Discussion: Has anyone heard of VEXAS syndrome?

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2024

I was diagnosed last year. I have MDS with del(5q). The initial diagnosis was confirmed with...

https://connect.mayoclinic.org/comment/1031602/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Mar 11, 2024

My prayers go out to the people who are struggling with MDS. May God bring you...

https://connect.mayoclinic.org/comment/1134458/

Discussion: Myelodysplastic Syndrome (MDS): how to increase red blood cells?

Support Group: Blood Cancers & Disorders

Posted: Sep 1, 2024

@garyrp, I apologize for my delayed welcome to Connect. If you don't mind, are you comfortable...

https://connect.mayoclinic.org/comment/196818/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: May 7, 2018

Hi Brenda, As someone else who posted here said “Be your own advocate.” Since you are...

https://connect.mayoclinic.org/comment/963403/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2023

No tx yet. Fish analysis MDs extended: issues: Del5q, trisomy 8 and 19 all detected abnormal.

https://connect.mayoclinic.org/comment/1202390/

Discussion: Anyone living with MDS Extended diagnosis experience?

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2025

I was diagnosed last April with MDS with anemia. I am taking hormone injections to help...

https://connect.mayoclinic.org/comment/1526759/

Discussion: Recently diagnosed with MDS with anemia and would like to connect

Support Group: Blood Cancers & Disorders

Posted: Mar 14 11:59am

MDS 5q what happens now?I was diagnosed with Mds 5Q in 2019 did required blood tests...

https://connect.mayoclinic.org/comment/1080101/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2024

Dear Gemma, My first suggestion is a bone marrow biopsy. Don't stress over not knowing, find...

https://connect.mayoclinic.org/comment/1418189/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 18, 2025

Hi Hollie, There are several different types of MDS that indicate whether you are low or...

https://connect.mayoclinic.org/comment/962436/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2023

By the way, check out the websites for Myleukemia.com, MyMPNteam, MPN Research Foundation, MDS-foundatio.org. They have...

https://connect.mayoclinic.org/comment/328595/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Mar 22, 2021

MDS with 5Q and not responding to Lenalidomide, best options?Not responding to lenalidomide after 5 weeks,...

https://connect.mayoclinic.org/comment/1271172/

Discussion: What are your experiences with lenalidomide (Revlimid) for MDS?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

Hello, I want to join a support group for MDS patients. And get information about balancing...

https://connect.mayoclinic.org/comment/1217754/

Discussion: Waldenstrom's: Should I take the new medication (rituximab)?

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2025

Just wanted to add...my oldest friend of 66 years was diagnosed with MDS 25 years ago....and...

https://connect.mayoclinic.org/comment/1313494/

Discussion: Anyone experienced Bone Marrow Transplant with TP53 mutation?

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

Posted: May 26, 2025

Welcome @gothman. There are different subtypes of MDS, some having more of a tendency to potentially...

https://connect.mayoclinic.org/comment/1195304/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2024

You may be best off letting your doctor tell you if you are stable or in...

https://connect.mayoclinic.org/comment/1540103/

Discussion: Just got my blood test results today.

Support Group: Blood Cancers & Disorders

Posted: 1 hour ago