Blood Cancers & Disorders Support Group

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Comments (1,027)

Anne-Marie, My husband was diagnosed with MDS last October and same thing, was told it was...

https://connect.mayoclinic.org/comment/962328/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2023

I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays...

https://connect.mayoclinic.org/comment/863227/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 20, 2023

I can definitely relate to your current predicament… I wanted to learn as much as possible...

https://connect.mayoclinic.org/comment/1385908/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 3, 2025

@asarnesejr You are on a rollercoaster! Those are vastly different diagnoses. You wondered why you had...

https://connect.mayoclinic.org/comment/1382514/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 30, 2025

Very well said! The retacrit (was taking Procrit) has actually helped all blood count numbers including...

https://connect.mayoclinic.org/comment/1308480/

Discussion: How can I raise my platelet count? (With food)

Support Group: Blood Cancers & Disorders

Posted: May 20, 2025

Hi Lori, Do you know of anyone who has AML with the mutation RPN1(GATA2)MECOM fusion, inv(3)?...

https://connect.mayoclinic.org/comment/1156671/

Discussion: Venetoclax plus decitabine not working?

Support Group: Blood Cancers & Disorders

Posted: Oct 13, 2024

@pixiesusan I am so sorry for your circumstances…everything is magnified especially when we feel so bad....

https://connect.mayoclinic.org/comment/1473394/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 3 8:22am

Good morning, Jacklyn. I think the medication you’re referring to is Azacitidine (Vidaza). There are two...

https://connect.mayoclinic.org/comment/1098464/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 3, 2024

Oh my goodness, I read through the last 1.5 months. What journeys we are on. I...

https://connect.mayoclinic.org/comment/1300827/

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

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

Posted: May 9, 2025

On July 31, 2025 my husband and I met with my hematologist and he said he...

https://connect.mayoclinic.org/comment/1362035/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2025

Hi @stsimons We’re all looking for that miracle cure of treating cancers and illness with natural...

https://connect.mayoclinic.org/comment/1528088/

Discussion: Has anyone heard of Dandelion Root being helpful on AML/MDS

Support Group: Blood Cancers & Disorders

Posted: Mar 16 9:12am

oldkarl, thank you so much for taking the time to reply. It is my husband who...

https://connect.mayoclinic.org/comment/163803/

Discussion: Acute myeloid leukemia (AML): What can I expect?

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2017

Doctors and diagnoses are so confusing. I to have just recently been told I have myelofibrosis...

https://connect.mayoclinic.org/comment/1364020/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2025

Hi Lori - Wanted to update you on my visit with the new hematologist yesterday. Well...

https://connect.mayoclinic.org/comment/1263978/

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

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

Posted: Mar 22, 2025

I’d like to ask any of you if you’ve had this happen. I apologize for not...

https://connect.mayoclinic.org/comment/1172169/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2024

I’m happy to hear you’re being seen by an AML specialist from Mayo-Rochester. It’s my home...

https://connect.mayoclinic.org/comment/1030654/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 9, 2024

I can get no Vaccines of any kind at this time. But will not ever get...

https://connect.mayoclinic.org/comment/808310/

Discussion: Aplastic Anemia and vaccine influences

Support Group: Blood Cancers & Disorders

Posted: Feb 8, 2023

I was diagnosed with MDS/MPN-RS-T in 2018. I have three mutations -JAK2, SRFS2 and IDH1-R132H. My...

https://connect.mayoclinic.org/comment/1042552/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2024

Wow how brave of your husband and such incredible strength you have to be where you...

https://connect.mayoclinic.org/comment/926044/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2023

I realize I’m replying to myself but I hope everyone can see this. I’m starting to...

https://connect.mayoclinic.org/comment/57943/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Jun 23, 2020