Blood Cancers & Disorders Support Group

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Comments (1,035)

Hi Howard…thinking about you this morning as you start your new treatment! I know how scary...

https://connect.mayoclinic.org/comment/828888/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2023

Thanks for the question. I was diagnosed with Thrombocytosis, Essential Thrombocythemia and JAK2 gene mutation over...

https://connect.mayoclinic.org/comment/328592/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2021

Hi - I am going through a transplant now. Such a hard decision, but after communicating...

https://connect.mayoclinic.org/comment/1379679/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 26, 2025

I too, have MDS. My platelets go up and down too, but as yet they haven't...

https://connect.mayoclinic.org/comment/1054226/

Discussion: MDS: Can someone explain how or why platelets go up or down quickly?

Support Group: Blood Cancers & Disorders

Posted: Apr 20, 2024

No idea either what "extended" means... but my husband also has MDS 5q deletion, diagnosed late...

https://connect.mayoclinic.org/comment/1215894/

Discussion: Anyone living with MDS Extended diagnosis experience?

Support Group: Blood Cancers & Disorders

Posted: Jan 18, 2025

My wife went through 1 1/2 years of treatment for severe aplastic anemia, which is closely...

https://connect.mayoclinic.org/comment/1371099/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2025

I am not having electrophoresis. Other people may have this treatment. I know there’s chemo oral...

https://connect.mayoclinic.org/comment/1164882/

Discussion: Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2024

Hello everyone, At first, they thought I had MDS, but then another doctor said CCUS. My...

https://connect.mayoclinic.org/comment/1138386/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2024

My husband has the same form of MDS. He has been on Lucpatercept injections for over...

https://connect.mayoclinic.org/comment/1082395/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2024

Hi @shels93 It’s good to see you pop up again. The last time we spoke was...

https://connect.mayoclinic.org/comment/950192/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2023

My husband was just diagnosed with MDS, and probably needless to say we are at a...

https://connect.mayoclinic.org/comment/757101/

Discussion: Low Platelets with Myelodysplastic Syndrome (MDS)

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2022

@kitoibay2 You are correct, this is a strange disease. After 13 years of battling what we...

https://connect.mayoclinic.org/comment/1486851/

Discussion: Anyone diagnosed with warm Autoimmune Hemolytic Anemia?

Support Group: Autoimmune Diseases

Posted: Jan 19 8:06pm

Hi there, I have MDS/MPN overlap. I have the JAK2 mutation and have been on 500...

https://connect.mayoclinic.org/comment/1027326/

Discussion: Pain in Upper Left Abdomen

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2024

Hi There... Was diagnosed about a month ago with MDS. I also have a DDX41 mutation...

https://connect.mayoclinic.org/comment/1188060/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2024

I have been diagnosed with CCUS, too. I don't really know anything about how genes are...

https://connect.mayoclinic.org/comment/1135342/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 3, 2024

Anne-Marie you are so very kind to have shared your experiences with me. I feel better...

https://connect.mayoclinic.org/comment/961270/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2023

hlmcneely, I am glad you posted. I do not have MDS, but i was reminded from...

https://connect.mayoclinic.org/comment/956062/

Discussion: Blood work question: Abnormal lymphocyte and Large Platelets?

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2023

Hi! I’m Allison! Was just diagnosed on Monday with MDS Single Lineage Dysplasia. I have the...

https://connect.mayoclinic.org/comment/1346734/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Jul 12, 2025

Hi Kat! Wow, 52 days already? That’s crazy how fast the time has flown. Congratulations on...

https://connect.mayoclinic.org/comment/1078942/

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

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

Posted: Jun 1, 2024

Hi @cherbarn. I’m sure this is shock for you coming on the heels of your back...

https://connect.mayoclinic.org/comment/1095046/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2024