Blood Cancers & Disorders Support Group

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Comments (272)

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

@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

@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

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

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

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

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 2:24am

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

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 12:16pm

@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

Good morning, @sherryzitter. I’m so happy to see you’re jumping in with both feet into this...

https://connect.mayoclinic.org/comment/1042022/

Discussion: Abnormal bloodwork questions

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 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 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

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

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

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