Blood Cancers & Disorders Support Group

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Comments (307)

@babesmom, have you received the results of the scan? What led to your doctor wanted to...

https://connect.mayoclinic.org/comment/1191946/

Discussion: Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2024

You're welcome. I hope you find some answers. I have AL Amyloidosis, there is another type...

https://connect.mayoclinic.org/comment/1120802/

Discussion: Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2024

Yes it is more specific for cardiac Amyloidosis always varying opinions for testing protocols Sent from...

https://connect.mayoclinic.org/comment/754874/

Discussion: What’s the science on diet and MGUS/SMM?

Support Group: Blood Cancers & Disorders

Posted: Sep 28, 2022

My husband was diagnosed with Cardiac Amyloidosis recently at Mayo Clinic. He had 2 biopsies to...

https://connect.mayoclinic.org/comment/898857/

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Jul 20, 2023

My husband was diagnosed with Acquired von Willebrand Syndrome almost a year ago today. Six months...

https://connect.mayoclinic.org/comment/1180018/

Discussion: Acquired Von Willebrand syndrome

Support Group: Blood Cancers & Disorders

Posted: Nov 26, 2024

Hi @colleenyoung , The links dont seem to work any longer. Are there updated ones we...

https://connect.mayoclinic.org/comment/732533/

Discussion: Diagnosed with AL Amyloidosis. What can I expect?

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2022

Also for those with cardiac amyloidosis and AFib green tea may not be recommended due to...

https://connect.mayoclinic.org/comment/678281/

Discussion: Chronic Lymphocytic Leukemia: Study of green tea extract inconclusive

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2022

Life is keeping you hopping @dorothea58 You mention hereditary-familial ATTR and not the wild type ....

https://connect.mayoclinic.org/comment/1540709/

Discussion: Wild-type ATTR Amyloidosis (ATTRwt): What meds help you?

Support Group: Blood Cancers & Disorders

Posted: Apr 1 8:12pm

How were you diagnosed with MGUS without the BMB? I am new to this. I have...

https://connect.mayoclinic.org/comment/1333678/

Discussion: Bone marrow biopsy and/or blood tests for MGUS

Support Group: Blood Cancers & Disorders

Posted: Jun 23, 2025

Thank you for recommending a consult with a a Mayo doctor specializing in both WM and...

https://connect.mayoclinic.org/comment/687250/

Discussion: Advice for Amyloidosis with Waldenstrom's macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2022

Has anyone diagnosed with type AL Amyloidosis had success after treatment with Darzalex? If so, how...

https://connect.mayoclinic.org/comment/104724/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2018

MM but last year's fat pad biopsy showed no amyloidosis. However my doc wants to do...

https://connect.mayoclinic.org/comment/1511119/

Discussion: Diagnosed with both multiple myeloma and amyloidosis: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Feb 21 10:24am

Good morning, @pices and welcome to Mayo Clinic Connect. We have some current members in our...

https://connect.mayoclinic.org/comment/722050/

Discussion: Waldenstrom Macroglobulinemia with MYD88-wild type

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2022

I also diagnosis with ATTR amyloidosis. Its a new desease in South Africa an medicenes for...

https://connect.mayoclinic.org/comment/1301488/

Discussion: Amyloidosis and low SpO2

Support Group: Blood Cancers & Disorders

Posted: May 11, 2025

Just read about a support group for lymphoma patients, and wondering if I could be connected...

https://connect.mayoclinic.org/comment/196639/

Discussion: Support groups for lymphoma patients

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2018

Julie, I moved your message to the Cancer group where you can meet others who may...

https://connect.mayoclinic.org/comment/113902/

Discussion: Waldenstroms and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2016

Hi @patio29dadio, welcome. You're facing some big decisions. Allow me to bring in fellow members who...

https://connect.mayoclinic.org/comment/687154/

Discussion: Advice for Amyloidosis with Waldenstrom's macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2022

I had lab work for Amyloidosis and everything was good. Does that mean I dont have...

https://connect.mayoclinic.org/comment/1185293/

Discussion: Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2024

@loribmt thank you for this really helpful post, Lori! I had shortness of breath since 2013,...

https://connect.mayoclinic.org/comment/1041665/

Discussion: Abnormal bloodwork questions

Support Group: Blood Cancers & Disorders

Posted: Mar 28, 2024

I’m trying to connect with someone who not only has multiple myeloma but also amyloidosis to...

https://connect.mayoclinic.org/comment/873112/

Discussion: Diagnosed with both multiple myeloma and amyloidosis: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2023

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