Blood Cancers & Disorders Support Group

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Comments (1,035)

Good morning, @asarnesejr! Let’s take a walk…I’m a walker and love to chat while doing so....

https://connect.mayoclinic.org/comment/1498628/

Discussion: MDS diagnosis with DDX41 Germline and Somatic

Support Group: Blood Cancers & Disorders

Posted: Feb 5 10:20am

My husband was diagnosed with MDS 5q deletion in 2018. He is age 83 now and...

https://connect.mayoclinic.org/comment/1227456/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 2, 2025

Hi Vickie, (@marlysmae) I haven’t found similar postings in the forum with your specific mutation. Sometimes...

https://connect.mayoclinic.org/comment/1156826/

Discussion: Venetoclax plus decitabine not working?

Support Group: Blood Cancers & Disorders

Posted: Oct 14, 2024

Hi @pixiesusan My name is Audrey L. I am sorry I have not seen your messages...

https://connect.mayoclinic.org/comment/1137910/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2024

Hi @Katgob. You’re making great strides with your recovery. Amazing you’re able to start your Tacro...

https://connect.mayoclinic.org/comment/1087452/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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

Posted: Jun 15, 2024

Good morning @g4c, Welcome to Connect. Before taking any supplements or radically changing your diet after...

https://connect.mayoclinic.org/comment/1220316/

Discussion: What are you doing to keep AML from relapse after transplant?

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

Posted: Jan 24, 2025

Melissa, i am not a doctor, but i can share what I've been doing: 1. sudden...

https://connect.mayoclinic.org/comment/1155566/

Discussion: Venetoclax plus decitabine not working?

Support Group: Blood Cancers & Disorders

Posted: Oct 11, 2024

Ok we’re so I start. My husband had been watched by a hematologist for at least...

https://connect.mayoclinic.org/comment/764387/

Discussion: Low Platelets with Myelodysplastic Syndrome (MDS)

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2022

Hi @janetlen. It’s interesting that you had 2 questionable bone marrow biopsies and the 3rd was...

https://connect.mayoclinic.org/comment/986129/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2023

After sliding down the hill with MDS/MF for years, I finally reached a very critical point....

https://connect.mayoclinic.org/comment/1372423/

Discussion: My MDS does not respond to treatments. What's next?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2025

Hi @brendamarlene! As I’m watching the snow fall in huge flakes right now, I can so...

https://connect.mayoclinic.org/comment/1250838/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2025

@kva111 Welcome to the Mayo Clinic Connect. I try to stay in my lane when responding...

https://connect.mayoclinic.org/comment/1063782/

Discussion: Anyone dealing MDS and how are you doing?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2024

Hi Lori, I'm back with questions...I just got home a little bit ago; my husband was...

https://connect.mayoclinic.org/comment/780961/

Discussion: Low Platelets with Myelodysplastic Syndrome (MDS)

Support Group: Blood Cancers & Disorders

Posted: Dec 4, 2022

I’m so sorry, Jenn. I know this is extremely difficult for your dad, you and your...

https://connect.mayoclinic.org/comment/1240003/

Discussion: MDS 80 yr old male

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2025

Thank you so much for all the information. I feel better already. I was diagnosed with...

https://connect.mayoclinic.org/comment/1093270/

Discussion: I've had CML for 20 years and want to encourage others

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2024

@johnwhitley how come your GP hasn’t referred you to a hematologist/ Oncologist. You should. Be seeing...

https://connect.mayoclinic.org/comment/1436364/

Discussion: Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

Support Group: Blood Cancers & Disorders

Posted: Nov 11, 2025

Hi @bohobruja Welcome to Mayo Connect. The National Institute of Health defines chronic myeloproliferative disorders as...

https://connect.mayoclinic.org/comment/786594/

Discussion: Does anyone else have more than one myeloproliferative disorder?

Support Group: Blood Cancers & Disorders

Posted: Dec 19, 2022

Hi Vickie, welcome to Connect! You’re speaking my language…I got a little misty-eyed with seeing you’ve...

https://connect.mayoclinic.org/comment/1096249/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2024

Lori, Yes the doctor yesterday said i am low/med in progression. But i told him i...

https://connect.mayoclinic.org/comment/1015941/

Discussion: Bone marrow transplants for CMML

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

Posted: Feb 14, 2024

Hi @jalan00 You’re not rambling at all! You’re being very proactive in trying to find information...

https://connect.mayoclinic.org/comment/1483725/

Discussion: How long can you be on azacitidine/vidaza?

Support Group: Blood Cancers & Disorders

Posted: Jan 16 9:51am