Blood Cancers & Disorders Support Group

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Comments (254)

I'm new to the world of Waldenström's Macroglobulinemia - having been diagnosed last month. I'm on...

https://connect.mayoclinic.org/comment/1246861/

Discussion: Waldenstroms Macroglobulemia

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2025

I was diagnosed with MGUS approximately 20 years ago and was being regularly monitored every 3...

https://connect.mayoclinic.org/comment/1232582/

Discussion: Could we talk about anxiety with MGUS

Support Group: Blood Cancers & Disorders

Posted: Feb 8, 2025

Oncologist sent me to cardiologist for a ton of tests to make sure my heart wasn’t...

https://connect.mayoclinic.org/comment/1216467/

Discussion: Waldenstrom's: Should I take the new medication (rituximab)?

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2025

Hi @lynnstefanik89, Welcome to the community! (and sorry you need to be here) I started my...

https://connect.mayoclinic.org/comment/1203242/

Discussion: Marginal zone lymphoma & chronic lymphocytic leukemia, anyone?

Support Group: Blood Cancers & Disorders

Posted: Jan 3, 2025

Since everyone responds differently, I highly recommend joining the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) - either...

https://connect.mayoclinic.org/comment/1074361/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: May 25, 2024

@vgdmayo Thanks to @loribmt for tagging me in this conversation. OHSU, going to their website, gave...

https://connect.mayoclinic.org/comment/1042904/

Discussion: Second Opinions: How do I get one at Mayo Clinic out-of state?

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2024

Hi @artmulh, I look forward to learning more about you. Having attended two of the IWMF...

https://connect.mayoclinic.org/comment/1026606/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2024

@careysuzi Welcome to Mayo Clinic Connect! To get more information about your new diagnosis, I recommend...

https://connect.mayoclinic.org/comment/996792/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2024

I am an active 75 year old and I was diagnosed with anemia, than MGUS 6...

https://connect.mayoclinic.org/comment/996268/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2024

Hi Colleen, I see that you referenced me as “Watch & See” for Waldenstrom disease. I...

https://connect.mayoclinic.org/comment/964298/

Discussion: Waldenstrom macroglobulinemia: What to expect during watch & wait?

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2023

Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and...

https://connect.mayoclinic.org/comment/945494/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2023

Are there any Waldenstroms patients on an immunotherapy first line inhibitor (e.g. Ibrutinib) who have experienced...

https://connect.mayoclinic.org/comment/936360/

Discussion: With Waldenstrom, what side effects did you have with ibrutinib?

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2023

Hi, I have had Waldenstroms for 19 years and have always had flu shots. I was...

https://connect.mayoclinic.org/comment/924119/

Discussion: Should Waldentrom's Patients Get Flu Shots?

Support Group: Blood Cancers & Disorders

Posted: Sep 4, 2023

Hello @mike02041950 @barbdk @lesliemont. Because WM is a type of blood cancer where your bone marrow...

https://connect.mayoclinic.org/comment/922967/

Discussion: Should Waldentrom's Patients Get Flu Shots?

Support Group: Blood Cancers & Disorders

Posted: Sep 2, 2023

My Dad had Waldenstroms Macroglobulinemia (rarer than amyloidosis) for 10 years from age 63 to 73....

https://connect.mayoclinic.org/comment/879943/

Discussion: Waldenstroms and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2023

My knee has a dent in it if I kneel on it are my bones soft...

https://connect.mayoclinic.org/comment/840192/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

My mother-in-law was diagnosed with Waldenstrom's in 1981. She was living here in Arizona and Toledo,...

https://connect.mayoclinic.org/comment/829063/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2023

Waldenstrom’s Husband diagnosed two years ago and has tried four different oral meds but can’t get...

https://connect.mayoclinic.org/comment/815772/

Discussion: Waldenstrom macroglobulinemia: What can I expect with chemo?

Support Group: Blood Cancers & Disorders

Posted: Feb 22, 2023

Is there a group / physician currently working on treatments for MYD88 - wild type in...

https://connect.mayoclinic.org/comment/801167/

Discussion: Waldenstrom Macroglobulinemia with MYD88-wild type

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2023

My last sed rate in May was 23 but my MGUS (blood disorder) is progressing into...

https://connect.mayoclinic.org/comment/748762/

Discussion: Should I be concerned about Blood Cancer or other disease?

Support Group: Blood Cancers & Disorders

Posted: Sep 12, 2022