Blood Cancers & Disorders Support Group

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Comments (307)

I'm tagging @robertreidrx @jam5 and others who have experience with Wild-type ATTR Amyloidosis (ATTRwt) to join...

https://connect.mayoclinic.org/comment/1265110/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2025

Are you retaining fluid? This could be causing your shortness of breath. Normally 95% O2 wouldn't...

https://connect.mayoclinic.org/comment/1318883/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2025

I have MGUS, diagnosed about 4 years ago, now I have also been diagnosed with Amyloidosis....

https://connect.mayoclinic.org/comment/1100049/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jul 5, 2024

@oliviahutson My husband was suffering from the same symptoms except the bzck issues. He visited the...

https://connect.mayoclinic.org/comment/906775/

Discussion: Looking for advice: Could this be MGUS, because of low m-spike?

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2023

Hi @jan52241. Welcome to Connect! I'm sorry to hear you have felt alone in this diagnosis...

https://connect.mayoclinic.org/comment/104684/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jun 12, 2016

Labs were done prior to the office visit Repeat labs and follow-up office visit in 3...

https://connect.mayoclinic.org/comment/753810/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2022

Hello @tlcox49. You are facing a lot of symptoms and diagnoses. I am inspired by your...

https://connect.mayoclinic.org/comment/104733/

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2018

@loribmt Thanks, Lori. Just had my first full dose yesterday; will share my experience with folks...

https://connect.mayoclinic.org/comment/1042514/

Discussion: Abnormal bloodwork questions

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2024

Ww, @cousinvinney. You must be processing quite a bit of information now that you received a...

https://connect.mayoclinic.org/comment/1533184/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 22 9:15pm

I would advise anyone who is diagnosed or suspects they may have AL Amyloidosis to get...

https://connect.mayoclinic.org/comment/1472654/

Discussion: Could this be Amyloidosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 2 7:49am

I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and...

https://connect.mayoclinic.org/comment/88311/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 20, 2019

Find out tomorrow what my regime of Chemo will be !!! Hopefully. How did they find...

https://connect.mayoclinic.org/comment/1476614/

Discussion: Does anyone have Amyloidosis as their primary condition?

Support Group: Blood Cancers & Disorders

Posted: Jan 7 11:02am

I was diagnosed with MGUS about 4.5 years ago and now I have been Diagnosed with...

https://connect.mayoclinic.org/comment/1100052/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jul 5, 2024

In 2021 I was diagnosed with multiple myeloma and amyloidosis. Stanford put me on a drug...

https://connect.mayoclinic.org/comment/1413538/

Discussion: Has anyone gone through remission without SCT or CAR-T

Support Group: Blood Cancers & Disorders

Posted: Oct 11, 2025

Diagnosed over 5 years ago with light chain amyloidosis and multiple myeloma. Did the 6 month...

https://connect.mayoclinic.org/comment/1479194/

Discussion: Does anyone have Amyloidosis as their primary condition?

Support Group: Blood Cancers & Disorders

Posted: Jan 10 7:42pm

Hi @suebridges123. From my understanding, Al Amyloidosis is caused by a bone marrow disorder. In AL...

https://connect.mayoclinic.org/comment/1107012/

Discussion: What is the current protocol for al Amyloidosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2024

Happy to hear you are doing well. My husband was diagnosed with Cardiac Amyloidosis this past...

https://connect.mayoclinic.org/comment/898862/

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Jul 20, 2023

@jstpeachy Thank you in advanced for including my husband in your prayers warriors. I will do...

https://connect.mayoclinic.org/comment/903397/

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

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

Posted: Jul 28, 2023

The reason they suspected amyloids is I have trouble breathing, carpal tunnel, enlarged tongue, and neuropathy....

https://connect.mayoclinic.org/comment/842875/

Discussion: Amyloidosis symptoms, negative fat pad biopsy?

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2023

Just to update: my doctor lowered Velcade dosage and That has made heartburn and stomach pain...

https://connect.mayoclinic.org/comment/217298/

Discussion: Chemo side effects

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2018