Blood Cancers & Disorders Support Group

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Comments (991)

Blessings for you and your wife. I was diagnosed in 2021 with MDS and it progressed...

https://connect.mayoclinic.org/comment/1521594/

Discussion: This is new, overwhelming. Wife is diagnosed with PV, we need support

Support Group: Blood Cancers & Disorders

Posted: Mar 7 9:28am

@jeffreykassover1, I moved your question to this existing discussion: - What are your experiences with lenalidomide...

https://connect.mayoclinic.org/comment/1277345/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2025

@links, you may also be interested in this related discussion - Living with MDS https://connect.mayoclinic.org/discussion/living-with-mds/ Have...

https://connect.mayoclinic.org/comment/1054908/

Discussion: Anyone dealing MDS and how are you doing?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2024

Hi @sherrylou, and welcome to Connect. It looks like you’ve been diagnosed with Myelodyplastic Syndromes or...

https://connect.mayoclinic.org/comment/1229822/

Discussion: Low hemoglobin and enlarged liver and spleen

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2025

I too have recently diagnosed MDS in "Watch and wait" mode. It's tp53, which does not...

https://connect.mayoclinic.org/comment/1509493/

Discussion: MDS with weight loss, dizziness & weakness

Support Group: Blood Cancers & Disorders

Posted: Feb 19 8:29am

@loribmt Lori. Can I ask what you do for a living? Are you a doctor, nurse,...

https://connect.mayoclinic.org/comment/1525591/

Discussion: Anyone experienced constipation or acid reflux taking Hydrea?

Support Group: Blood Cancers & Disorders

Posted: Mar 12 8:29pm

Welcome to Connect, @callahan. There are several discussions in the forum with members who have MDS....

https://connect.mayoclinic.org/comment/1217786/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2025

You may also want to change to an MDS Center of Excellence. You can find listings...

https://connect.mayoclinic.org/comment/1365515/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 7, 2025

I think MDS- IB2 is likely intermediate risk which would be same treatment protocol for a...

https://connect.mayoclinic.org/comment/1385367/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 2, 2025

I have the same symptoms and referred to a hematologist/oncologist who did a bone marrow biopsy...

https://connect.mayoclinic.org/comment/1526700/

Discussion: Anyone dealing with MDS?

Support Group: Blood Cancers & Disorders

Posted: Mar 14 11:10am

Thanks again not sure if I have that could be MDS for me not sure if...

https://connect.mayoclinic.org/comment/817111/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2023

Welcome, @jschellhaas. It is scary to get a new diagnosis. To help you connect others living...

https://connect.mayoclinic.org/comment/1198238/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Dec 27, 2024

I don't understand why some MDs are diagnoses averse

https://connect.mayoclinic.org/comment/1471936/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 1 8:20am

Talk with your doctor about having a bone marrow biopsy. That will determine if you have...

https://connect.mayoclinic.org/comment/1526742/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 14 11:45am

So dx is MDs EB-2 gona be on meds an transfusions as needed any insight from...

https://connect.mayoclinic.org/comment/820915/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2023

Hi @revbobcoulson I admit MDS Extended isn’t a term I’ve heard before and not sure what...

https://connect.mayoclinic.org/comment/1202272/

Discussion: Anyone living with MDS Extended diagnosis experience?

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2025

@katgob - you're in great hands at COH! Myelodysplastic syndromes (MDS) likely stem from a mix...

https://connect.mayoclinic.org/comment/1313497/

Discussion: Anyone experienced Bone Marrow Transplant with TP53 mutation?

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

Posted: May 26, 2025

Thank you for your reply. I get blood work every 3-4 months. Had bmb in 2022...

https://connect.mayoclinic.org/comment/1535638/

Discussion: MDS and thin skin

Support Group: Blood Cancers & Disorders

Posted: 2 days ago

Welcome to Connect @lindak123 Since you were recently diagnosed with having Myelodyplastic syndromes (MDS) you probably...

https://connect.mayoclinic.org/comment/1364912/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2025

@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell...

https://connect.mayoclinic.org/comment/856601/

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

Support Group: Blood Cancers & Disorders

Posted: May 8, 2023