Blood Cancers & Disorders Support Group

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Comments (1,109)

@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

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

My brother was diagnosed with AML MECOM inversion 3 and now they believe it came from...

https://connect.mayoclinic.org/comment/1569937/

Discussion: I am newly diagnosed with AML. with the inv(3) mutation,

Support Group: Blood Cancers & Disorders

Posted: May 8 2:15pm

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 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

@winniegirl My husband has MDS overlapping Myelofibrosis. His hemoglobin is always below 8, so he has...

https://connect.mayoclinic.org/comment/1580917/

Discussion: Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?

Support Group: Blood Cancers & Disorders

Posted: May 22 8:02pm

I have MDS and before I was diagnosed I started having joint pain, Ankle, hip, knees...

https://connect.mayoclinic.org/comment/1598057/

Discussion: How can I tell what is causing joint pain? Age, HU, ET?

Support Group: Blood Cancers & Disorders

Posted: Jun 14 4:56pm

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

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

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

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

@gabuckeye99, are you having further testing to confirm the diagnosis of a myelodysplastic syndrome (MDS)? How...

https://connect.mayoclinic.org/comment/1536746/

Discussion: Anyone dealing with MDS?

Support Group: Blood Cancers & Disorders

Posted: Mar 27 3:22pm

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

Yes mds seein doc Fri see wat they advise at this point would love to hear...

https://connect.mayoclinic.org/comment/819394/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2023

@pathilt Hello! I am an MDS patient and would like to echo, add some more information....

https://connect.mayoclinic.org/comment/1113342/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 28, 2024

I have MDS. Cannot reach 12! On Procreit. Now I am eating spinach & beans. Will...

https://connect.mayoclinic.org/comment/1476730/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 7 12:39pm

Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at...

https://connect.mayoclinic.org/comment/863258/

Discussion: I have been diagnosed and under treatment for MDS

Support Group: Blood Cancers & Disorders

Posted: May 20, 2023

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