Diagnosed with AL Amyloidosis. What can I expect?

@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?

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

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!

@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!

Hello,
I came across your request for information on Amyloidosis. If you have not checked on VA benefits for those with Amyloidosis who served in Vietnam, the VA gives high priority to this in terms of review and subsequent full benefits. Please check it out ASAP

individuals can also have TTR and AL amyloidosis

Terribly short of breath. Waiting for 2 more tests to finalize ALdiagnosis. Don’t know that I can make it. Oxygen is 95%. I think I need to be put on oxygen, but they won’t do it given. My oxygen is high.

Are you retaining fluid? This could be causing your shortness of breath. Normally 95% O2 wouldn't warrant supplemental oxygen.
I am not giving medical advice.
I have AL amyloidosis.

Every once in awhile I have lower leg swelling but not significant or long lasting. I wear compression sox .

Do you have shortness of breath?

Tomy...I have been on this journey with my husband for the past year. amyloids started in in gastrointestinal tract, nerves, heart, skin and bone marrow. 4 different chemo meds failed. We currently are on teclistamab which is first drug to actually decrease the amyloids. We are optimistic that he can get at least another year. His disease was caught late and so many different organs have been infected with amyloids he does not qualify for stem cells or cart t. You may want to ask your doctor to do an iron study. If you have low iron or anemia that could be a possible cause for your shortness of breath. In addition to checking your iron levels also check your B12 levels. If they are low, iron and vitamin b12 supplements may improve your shortness of breath.