Blood Cancers & Disorders Support Group

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Comments (272)

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

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

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

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

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

ah. Are you concerned there could be other things happening like amyloidosis? I'm the worrier who...

https://connect.mayoclinic.org/comment/1118177/

Discussion: Paraprotein & Light chains

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 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

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

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 6:13pm

@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

@casey1329 My husband who is 80 yrs old has been suffering for months with the same...

https://connect.mayoclinic.org/comment/900586/

Discussion: Possible Al Amylodiois

Support Group: Blood Cancers & Disorders

Posted: Jul 23, 2023

Hi @marykatr, your post led me to do a bit of internet searching. I learned that...

https://connect.mayoclinic.org/comment/1183818/

Discussion: Anyone w/ both AL Amyloidosis & Acquired Von Willebrand Syndrome?

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2024

My husband was diagnosed with MGUS not long ago. He went to a cardiologist in Jacksonville...

https://connect.mayoclinic.org/comment/931005/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Sep 16, 2023

Hi @honeymamabee, I expanded the title of your discussion to reflect your question and added it...

https://connect.mayoclinic.org/comment/1117967/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 4, 2024

I have had MGUS for 4.5 years. The strategy has been to monitor it with blood...

https://connect.mayoclinic.org/comment/1101928/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jul 8, 2024

My diagnosis is in. Negative for amyloidosis. A hypertrophic, asymmetrical heart wall septum, plus a slightly...

https://connect.mayoclinic.org/comment/1220047/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jan 23 7:31pm

FLC is free light chains (kappa and lambda). Measurement of these is used to help diagnoses...

https://connect.mayoclinic.org/comment/1144049/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Sep 19, 2024

Hi Becky, if you go to this site again that @colleenyoung posted, you’ll see a box...

https://connect.mayoclinic.org/comment/738621/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2022

Hi @jebcyn Welcome to Mayo Connect. It’s inspirational that you’re a 10 year survivor! Would you...

https://connect.mayoclinic.org/comment/782272/

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2022

Hi @jan44, I'm sure @vmarra would appreciate connecting with you. I see AL amyloidosis is a...

https://connect.mayoclinic.org/comment/775150/

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Nov 19, 2022