Blood Cancers & Disorders Support Group

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Comments (1,035)

Hi friends. I have MDS B2 & plans are for me to be admitted to the...

https://connect.mayoclinic.org/comment/1367674/

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

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

Posted: Aug 10, 2025

Receiving guidance on pregnancy/infertility is a good idea — with your Hematologist-Oncologist and GYN. From the...

https://connect.mayoclinic.org/comment/864174/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 21, 2023

Hello @jag11, Welcome to Connect. Sorry to see that you haven't had any responses yet. There...

https://connect.mayoclinic.org/comment/1190946/

Discussion: Anyone dealing with Paroxysmal nocturnal hemoglobinuria (PNH)?

Support Group: Blood Cancers & Disorders

Posted: Dec 15, 2024

Hi, @pmlind4. I’m sorry I missed your post earlier this month. As a refresher, here is...

https://connect.mayoclinic.org/comment/1268261/

Discussion: MDS (myelodysplastic syndrome): When to start treatment?

Support Group: Blood Cancers & Disorders

Posted: Mar 27, 2025

Hi Howard, I looked up the classification for your MDS-EB2 diagnosis. The EB-2 is the staging...

https://connect.mayoclinic.org/comment/821146/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2023

It’s important to have a list of questions for your hematologist next week regarding Vidaza, the...

https://connect.mayoclinic.org/comment/1399577/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 23, 2025

Your experience is similar to my husband’s, though he has MDS 5q deletion, not MM. The...

https://connect.mayoclinic.org/comment/1199190/

Discussion: What are your experiences with lenalidomide (Revlimid) for MDS?

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2024

Thank you for responding back to me. I started out with a Hematologist that said I...

https://connect.mayoclinic.org/comment/761323/

Discussion: Low Platelets: Diagnosis to be confirmed

Support Group: Blood Cancers & Disorders

Posted: Oct 15, 2022

Hi @littlebluebird, I’d be very cautious with using turmeric powder to control itching. While turmeric/curcumin can...

https://connect.mayoclinic.org/comment/1298018/

Discussion: Myelodysplastic syndrome (MDS) and skin itching

Support Group: Blood Cancers & Disorders

Posted: May 6, 2025

Do you remember the good old days when our big decisions were, “OH i have a...

https://connect.mayoclinic.org/comment/622599/

Discussion: Use of Neupogen (or similar) prior to minor surgery

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2021

Oh my. My first thought was a 2nd opinion. More with more experience will respond soon,...

https://connect.mayoclinic.org/comment/1395690/

Discussion: My wife tested positive for jak2 and has high platelet count

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

Good morning, @usmcmom. I’ve been reading through several of your posts about your diagnosis with MDS...

https://connect.mayoclinic.org/comment/1258437/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 15, 2025

Good morning @shemac711shemac711! I got a visual on your comment about having a bad day…I’m sitting...

https://connect.mayoclinic.org/comment/1266426/

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

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

Posted: Mar 25, 2025

I don't have a local hematologist-oncologist. I don't know if they have estimated the risk for...

https://connect.mayoclinic.org/comment/1136610/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2024

There's some research that indicates that the driver mutation can be detected years or even decades...

https://connect.mayoclinic.org/comment/893249/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2023

I got my bone marrow aspiration & bone biopsy Nov 1st. I just got back the...

https://connect.mayoclinic.org/comment/777892/

Discussion: Low Platelets: Diagnosis to be confirmed

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2022

Good morning, Well I have been diagnosed by Mayo Drs this week and it turns out...

https://connect.mayoclinic.org/comment/764026/

Discussion: Low Platelets: Diagnosis to be confirmed

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2022

VP- genetic test determined I have Variegated porphyria after dealing with symptoms for 19 years. I...

https://connect.mayoclinic.org/comment/1381959/

Discussion: Treatment for mild porphyria

Support Group: Blood Cancers & Disorders

Posted: Aug 29, 2025

My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has...

https://connect.mayoclinic.org/comment/1266646/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Mar 25, 2025

In May 2023 MDS went to AML with 16% blasts. Blood #s were all over the...

https://connect.mayoclinic.org/comment/1257618/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Mar 14, 2025