Blood Cancers & Disorders Support Group

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Comments (759)

Thank You for sharing Jean-Pierre! If you don’t mind me asking how long have you had...

https://connect.mayoclinic.org/comment/961009/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2023

Since you mentioned ET and the VA in one sentence may I ask if you were...

https://connect.mayoclinic.org/comment/194347/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2019

I was diagnosed about 3 months ago with MDS 5Q as well. Tried shots, didn't work,...

https://connect.mayoclinic.org/comment/1259703/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 16 4:10pm

Anne-Marie, thank you for the information on MDS Centers of Excellence. I am fortunate since I...

https://connect.mayoclinic.org/comment/963241/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2023

I just saw this post. My aunt had MF and developed AML 30 yrs ago. Now...

https://connect.mayoclinic.org/comment/996062/

Discussion: Long awaited Drug for myelofibrosis (MF) has been released

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2024

I have had 4 bone marrow biopsies as i have had MDS. I am one who...

https://connect.mayoclinic.org/comment/1231146/

Discussion: Could we talk about anxiety with MGUS

Support Group: Blood Cancers & Disorders

Posted: Feb 6 10:05pm

I use aranesp injections when I red blood count goes way low I also have mds-rs-sld...

https://connect.mayoclinic.org/comment/667437/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 3, 2022

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant. Doctor...

https://connect.mayoclinic.org/comment/864385/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 22, 2023

Have you looked it up in the search bar above? I needed to look up CLL...

https://connect.mayoclinic.org/comment/1233292/

Discussion: Anyone else experiencing these symptoms with CLL diagnosis....?

Support Group: Blood Cancers & Disorders

Posted: Feb 9 8:34pm

After many years of dealing with MDS and MF my spleen was Huge. I had a...

https://connect.mayoclinic.org/comment/1029072/

Discussion: Polycythemia causing enlarged spleen

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2024

Hello--I am new to this, so not sure about how everything works; if I'm getting it...

https://connect.mayoclinic.org/comment/829666/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 21, 2023

Please get the bone marrow biopsy you need those answers. My husband has had at least...

https://connect.mayoclinic.org/comment/1003201/

Discussion: At my wits end. Not sure where to go from here.

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2024

Hi @fortuitous, There’s another member in Connect (@sherbs)with the same DDX41 mutation only with MDS, not...

https://connect.mayoclinic.org/comment/1188086/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2024

Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition...

https://connect.mayoclinic.org/comment/925760/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2023

I have MDS and am anemic. I recently had an iron infusion as my doc thinks...

https://connect.mayoclinic.org/comment/1000790/

Discussion: Anyone take an iron supplement for low red blood cell count?

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2024

Are your other blood numbers down too? A drop in the white blood counts would allow...

https://connect.mayoclinic.org/comment/856514/

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

Support Group: Blood Cancers & Disorders

Posted: May 8, 2023

I have low platelets. My “normal” is around 68,000. I was diagnosed with ITP. It’s an...

https://connect.mayoclinic.org/comment/1025699/

Discussion: Low platelet count of around 120,000: What should be looked at?

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2024

Hi @katanaguy, You’ve been through the wringer the past couple of months! With your very low...

https://connect.mayoclinic.org/comment/1177377/

Discussion: Retacrit + Venofer for B-thalassemia

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2024

Hi Brenda, I was very interested in your comments about your husband’s response to your MDS....

https://connect.mayoclinic.org/comment/961219/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2023

My Neutrophil count was only half of the previous months count at 0.17. The doctor has...

https://connect.mayoclinic.org/comment/1230666/

Discussion: Diagnosed with MDS: What is Paradox Effect with azacitidine (Vidaza)?

Support Group: Blood Cancers & Disorders

Posted: Feb 6 10:34am