Blood Cancers & Disorders Support Group

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Hello @carolynaune. Here is a discussion I think you may enjoy looking at, https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/. It has...

https://connect.mayoclinic.org/comment/196640/

Discussion: Support groups for lymphoma patients

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2018

@evaxmas, welcome to Connect. You may notice I combined your discussion with an existing one titled,...

https://connect.mayoclinic.org/comment/88325/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 19, 2019

individuals can also have TTR and AL amyloidosis

https://connect.mayoclinic.org/comment/1278358/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2025

@cgerwig66 Welcome to Mayo Clinic Connect. I understand you were recently diagnosed with MGUS, and are...

https://connect.mayoclinic.org/comment/842868/

Discussion: Amyloidosis symptoms, negative fat pad biopsy?

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2023

@rhunt47, I'm tagging a few members who have experience with cardiac amyloidosis like @mookiencoco @judithh580 @naiviv...

https://connect.mayoclinic.org/comment/1478473/

Discussion: Cardiac Amyloidosis Anyone else diagnosed with this disease?

Support Group: Heart & Blood Health

Posted: Jan 9 8:22pm

I would like to discuss your condition with you if you'd like. Have peripheral neuropathy as...

https://connect.mayoclinic.org/comment/104723/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Apr 23, 2018

Thanks for the reminder about videos, @oldkarl! There's a video with Martha Grogan, MD, and hematologist...

https://connect.mayoclinic.org/comment/104698/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2017

Fat pad biopsies may be done to look for Amyloidosis - not very definitive or accurate

https://connect.mayoclinic.org/comment/754346/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 27, 2022

Lori, switched the loading sequence but that caused a problem. It talks about AL Amyloidosis but...

https://connect.mayoclinic.org/comment/738758/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Aug 18, 2022

Columbia-Pres in NYC and Boston Mass. are two Amyloidosis centers in the NE

https://connect.mayoclinic.org/comment/1062374/

Discussion: Amyloidosis: What kind of specialist to see for a second opinion?

Support Group: Blood Cancers & Disorders

Posted: May 5, 2024

Our experience with gi amyloidosis was different. That said you may want to suggest that a...

https://connect.mayoclinic.org/comment/1174177/

Discussion: Could my Stomach Pain be related to Waldenstrom’s or amyloidosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 15, 2024

luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so...

https://connect.mayoclinic.org/comment/88312/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 21, 2019

@colleenyoung Colleen, I am new to this form and I am being treated for Amyloidosis with...

https://connect.mayoclinic.org/comment/1041672/

Discussion: Positive test results for amyloids

Support Group: Blood Cancers & Disorders

Posted: Mar 28, 2024

I hope they can treat the amyloidosis for you, and you can improve 🌺

https://connect.mayoclinic.org/comment/963531/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2023

@shorelady, I'd like to add my welcome along with @gingerw and tagging other members who have...

https://connect.mayoclinic.org/comment/807258/

Discussion: Amyloidisis of the mouth and myeloma

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2023

Pyrophosphate scans , history and labs with a doctor knowledgeable about the different forms of Amyloidosis

https://connect.mayoclinic.org/comment/754613/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 27, 2022

Thanks for pointing that out, @azlatina. Unfortunately that webinar is no longer available. However, here are...

https://connect.mayoclinic.org/comment/732756/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 31, 2022

My first sign of Amyloidosis was increased protein in my urine….. Had a 24hr urine &...

https://connect.mayoclinic.org/comment/1119946/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 8, 2024

Hi @paotired. Just checking in with you to see if you’ve started your treatments for the...

https://connect.mayoclinic.org/comment/1511879/

Discussion: Al amyloidosis treatment after 6 years of remission

Support Group: Blood Cancers & Disorders

Posted: Feb 22 9:13am

Welcome, @chrissteyn51. I moved your question about medications for amyloidosis ATTR to this existing discussion to...

https://connect.mayoclinic.org/comment/1265776/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 24, 2025