Blood Cancers & Disorders Support Group

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Comments (251)

@devineone -you may want to cross-post this to the kidney and bladder group, also. I'm sorry...

https://connect.mayoclinic.org/comment/213097/

Discussion: AL amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Aug 22, 2018

@kanaazpereira Thank you for asking me to join in. I was diagnosed with a very rare...

https://connect.mayoclinic.org/comment/88316/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2019

@lisal64 .. Actually, yours seems to be a rather typical story. The part many folks don't...

https://connect.mayoclinic.org/comment/661954/

Discussion: Multiple Myeloma: Come introduce yourself and let's talk

Support Group: Blood Cancers & Disorders

Posted: Dec 13, 2021

Hi @beaudog, waiting for a diagnosis and treatment is always such a challenging time. I’m sure...

https://connect.mayoclinic.org/comment/726192/

Discussion: Husband diagnosed with smothering myeloma and AI amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Jul 12, 2022

@beckyoutlaw1115 Hi, Becky. Yes, it's a tough road to get a diagnosis in the Amy wilderness....

https://connect.mayoclinic.org/comment/172287/

Discussion: Treatment for amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2017

Ms like2dance2 I can relate with your frustrations in getting someone to take your case. Our...

https://connect.mayoclinic.org/comment/1172561/

Discussion: Just diagnoised with Amyloidosis, kappa light chain restricted.

Support Group: Blood Cancers & Disorders

Posted: 6 days ago

I was treated for amyloidosis in 2007 at Mayo Clinic Rochester. I was there with a...

https://connect.mayoclinic.org/comment/689030/

Discussion: AL Amyloidosis: Where were you treated?

Support Group: Blood Cancers & Disorders

Posted: Mar 12, 2022

I think I found the Connection for you!! It’s an older conversation and I’m not sure...

https://connect.mayoclinic.org/comment/874415/

Discussion: Diagnosed with both multiple myeloma and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2023

I had no symptoms. Amyloid was an incidental finding in a polyp removed during a colonoscopy....

https://connect.mayoclinic.org/comment/824980/

Discussion: AL Amyloidosis maybe?

Support Group: Blood Cancers & Disorders

Posted: Mar 12, 2023

Hi Nancy, Yes, you are replying right and using the forum as it is intended. I'm...

https://connect.mayoclinic.org/comment/971450/

Discussion: Positive test results for amyloids

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2023

At this point seems to be NMZL; however when I asked about WM SMM the oncologist...

https://connect.mayoclinic.org/comment/752396/

Discussion: Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Support Group: Blood Cancers & Disorders

Posted: Sep 22, 2022

know the AL amyloidosis is in his kidneys and the neuropathy but is systemic so where...

https://connect.mayoclinic.org/comment/113912/

Discussion: Waldenstroms and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Sep 23, 2016

I was just dx a week ago through BMB and fat aspirate, but they have elected...

https://connect.mayoclinic.org/comment/104692/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jun 23, 2017

For a patient with MZL also with wtttr and AL cardiac amyloidosis in persistent Afib and...

https://connect.mayoclinic.org/comment/845254/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Apr 18, 2023

@dazlin WOW, what a good question. This is one of the great mysteries of Amyloidosis diagnosis...

https://connect.mayoclinic.org/comment/172297/

Discussion: Treatment for amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2018

My husband will probably start with chemo depending on the results of the immunoglobulins panels. His...

https://connect.mayoclinic.org/comment/902284/

Discussion: My Autologous Stem Cell Transplant Journey - Mayo, Phoenix

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

Posted: Jul 26, 2023

I had positive results from a kidney biopsy sent to Mayo Clinic with an Amyloidosis diagnosis...

https://connect.mayoclinic.org/comment/965936/

Discussion: Positive test results for amyloids

Support Group: Blood Cancers & Disorders

Posted: Nov 16, 2023

You could have a bone marrow biopsy. I would ask for your Dr to do a...

https://connect.mayoclinic.org/comment/1119116/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 6 7:28pm

So sorry to hear this about both being coupled as in your case! Amyloidosis sometimes seems...

https://connect.mayoclinic.org/comment/869639/

Discussion: Diagnosed with both multiple myeloma and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: May 31, 2023

Hah. Whatever works, eh? 😂 You made me laugh out loud this morning. I intended to...

https://connect.mayoclinic.org/comment/726708/

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2022