Blood Cancers & Disorders Support Group

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Comments (236)

I experienced similar hgb factors rqr blood and platelets transfusions. It was a journey to find...

https://connect.mayoclinic.org/comment/1246466/

Discussion: Low hemoglobin and enlarged liver and spleen

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2025

I am 82 y.o. and just finished week 10 of Vidaza therapy. Neutrophils fluctuating around 1.2...

https://connect.mayoclinic.org/comment/1399532/

Discussion: How long can we be on azacitidine (Vidaza)?

Support Group: Blood Cancers & Disorders

Posted: Sep 23, 2025

In my Mom’s case, her doctor said the median of Vidaza treatments was an additional 5...

https://connect.mayoclinic.org/comment/1382566/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Aug 30, 2025

Lori, our appt yesterday was not very good. The Doctor said he could see some leukemia...

https://connect.mayoclinic.org/comment/1252047/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2025

Welcome to Connect, @grat1963. Oh my gosh, it’s so sad to hear about your sister and...

https://connect.mayoclinic.org/comment/1342943/

Discussion: MDS now progressing to AML and need to decide if time to start Vidaza

Support Group: Blood Cancers & Disorders

Posted: Jul 7, 2025

Thank you Justin , yes I have asked my Doctor and he says I,m doing fine...

https://connect.mayoclinic.org/comment/251918/

Discussion: How long can we be on azacitidine (Vidaza)?

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2019

He is taking the TIVSOBO daily until it doesn't work. Then the plan is to switch...

https://connect.mayoclinic.org/comment/934090/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 21, 2023

Hi @bettersleep68 Good to hear from you! It looks like slowly but surely your blast count...

https://connect.mayoclinic.org/comment/1331490/

Discussion: Looking for alternative for AML treatment with kidney failure.

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2025

Diagnosed in may 2023 with MDS/AML blasts of 26% forced me into hospital for first treatment...

https://connect.mayoclinic.org/comment/1206679/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2025

Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...

https://connect.mayoclinic.org/comment/913626/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2023

My husband found out in January he has myelofibrosis, it was a shock to us. He...

https://connect.mayoclinic.org/comment/1412275/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 9, 2025

Has anyone else had problems with joint pain while taking Vidaza (Azacitidine) infusions for MDS? I...

https://connect.mayoclinic.org/comment/1548915/

Discussion: Just got my blood test results today. I have MDS

Support Group: Blood Cancers & Disorders

Posted: Apr 12 3:13pm

This is so encouraging. I am On venetoclax snd vidaza. I just finished my first 5...

https://connect.mayoclinic.org/comment/1408194/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2025

Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended...

https://connect.mayoclinic.org/comment/88394/

Discussion: I have been diagnosed and under treatment for MDS

Support Group: Blood Cancers & Disorders

Posted: Jul 19, 2017

Hi Elizabeth! That’s really great news about your husband’s response to the Vidaza. It has a...

https://connect.mayoclinic.org/comment/1273119/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2025

I have the same issues that you described. I have MDS with 5q deletion & have...

https://connect.mayoclinic.org/comment/1591223/

Discussion: Myelodysplastic Syndromes (MDS), leg weakness & walking

Support Group: Blood Cancers & Disorders

Posted: Jun 5 9:47am

Hello! Thank you for your message, rjperk633 (@rjperk633). I relayed your words to my partner. She'll...

https://connect.mayoclinic.org/comment/1385329/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 2, 2025

I am sorry to hear about your dad. I have AML and just finished my first...

https://connect.mayoclinic.org/comment/1419669/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2025

Also looking for Rytelo information. It’s so new we may not get much for experience on...

https://connect.mayoclinic.org/comment/1199195/

Discussion: imetelstat/Rytelo MDS treatment anyone?

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2024

Have not heard of hearing loss after Vidaza shots . We have a problem here with...

https://connect.mayoclinic.org/comment/1419804/

Discussion: Has anyone had hearing loss after Azacitidine injections?

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2025

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