Blood Cancers & Disorders Support Group

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Comments (842)

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

Thank you for your input. I started with one dr who was recommended due to low...

https://connect.mayoclinic.org/comment/1341769/

Discussion: New Dr different diagnosis

Support Group: Blood Cancers & Disorders

Posted: Jul 5 2:48pm

I wish I could give you some of my platelets! Mine are running 500 plus up...

https://connect.mayoclinic.org/comment/802496/

Discussion: My platelets are 120000

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2023

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

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

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

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

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 was recently diagnosed with MDS with anemia. I have been anemic for many years but...

https://connect.mayoclinic.org/comment/1363855/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Aug 4 7:52pm

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

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

Jeff - lustpatercept is one of our options. I did not know del 5q could not...

https://connect.mayoclinic.org/comment/1361236/

Discussion: MDS with sideroblasts and trying Lospatercept or Elritercept?

Support Group: Blood Cancers & Disorders

Posted: Aug 1 8:30am

Hello @daleanddonna It’s been a couple of weeks since you wrote in about your husband’s MDS...

https://connect.mayoclinic.org/comment/1304491/

Discussion: Newly diagnosed with AML (FTL3 TKD)

Support Group: Blood Cancers & Disorders

Posted: May 15 7:39am

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

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 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

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

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