1. < Blood Cancers & Disorders

Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 30, 2022
In reply to @azlatina "Hi @colleenyoung , The links dont seem to work any longer. Are there updated ones we..." + (show)
@azlatina

Hi @colleenyoung ,
The links dont seem to work any longer. Are there updated ones we can view about amyloidosis?
Thanks,
Michelle

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@azlatina, Please accept my Welcome to Mayo Connect. I could not open that link about Amyloidosis either. However, even though I have no experience with Amyloidosis', I want to I want to share some information with you:
Here is the link to information about Amyloidosis from Mayo Patient Care and Health Information :
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

And here are 2 features that might give you some insights, even though they are not recent:
https://newsnetwork.mayoclinic.org/discussion/what-is-amyloidosis-and-10-signs-you-might-have-it/
https://intheloop.mayoclinic.org/2017/10/31/a-new-double-take-second-opinion-points-to-future-of-hope/

Michelle, Have you or a loved one been diagnosed?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 31, 2022
In reply to @azlatina "Hi @colleenyoung , The links dont seem to work any longer. Are there updated ones we..." + (show)
@azlatina

Hi @colleenyoung ,
The links dont seem to work any longer. Are there updated ones we can view about amyloidosis?
Thanks,
Michelle

Jump to this post

Thanks for pointing that out, @azlatina. Unfortunately that webinar is no longer available. However, here are a couple of Youtube videos with Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD.

Amyloidosis: What you need to know - Mayo Clinic
https://youtu.be/p6uUlqypLzA

Cardiac Amyloidosis - Treatment Options
https://youtu.be/kvPU83VIv2o

REPLY
sherryzitter | @sherryzitter | Mar 28 12:36pm
In reply to @bob100 "Thank you. I have been educating myself daily on AL and its affect on the body..." + (show)
@bob100

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

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Hello, @bob100! My name is also Sherry, and I was also diagnosed with AL amyloidosis in 2019 after six years of symptoms and misdiagnoses.

I hope your wife is doing much better now! I haven’t read through all the more recent posts, but you sound like a wonderful team and you seem like an amazing researcher and support to her. I would love to connect with you and others if you are still interested.

I just discovered this forum yesterday. I was tried on four different chemo combinations at Dana Farber in Boston, and after eight months they finally found a combination to bring my numbers into the normal range. However, I was only in remission for 14 months before my numbers began to rise again.

A few weeks ago, I began a new BiTE immunotherapy that has only been six months, Elranatamab. (Teclistamab is a similar therapy that has been out more than a year, but this one seems safer to my Oncologist.

I would love to know if others with AL amyloidosis have had experience with immunotherapy. Thanks!

REPLY
sherryzitter | @sherryzitter | Mar 28 1:00pm

@evoxmas I just found out about this forum yesterday, so I am sure a lot has transpired in the year since your post. You may not even be on this forum anymore.
But if you see this, I just want to send you not only Support, but so much anger at how long it took for your mother to be correctly diagnosed! Doctors have all sorts of Internet resources at their disposal, and it should be easy for them to input a list of symptoms such as your mother was experiencing, and test for rare diseases such as amyloidosis! Mine was misdiagnosed for over six years, and my dear friend’s multiple myeloma pain was misdiagnosed for years as bursitis and arthritis, until she was stage three and was unable to turn her disease around, even with a stem cell transplant.

You and we deserve better from the medical system! I am so sorry you and your family went through this experience, and I hope your mom’s course of illness was as pain-free as possible. Sending a hug!

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