Positive test results for amyloids

I had positive results from a kidney biopsy sent to Mayo Clinic with an Amyloidosis diagnosis from Mayo, which resulted in a stem cell transplant back in 2007 & here I am today! I had extreme rise in protein in my urine per urine test during a minimal new job physical. It was recommended to visit my primary care doctor & I did! Prayers For Correct Medical Diagnosis….

I'm really sympathetic because my bone marrow and fat pad biopsies are scheduled in 10 days, and not knowing what's going on is stressful. But I haven't read up on bone marrow biopsies and haven't had mine yet, and don't know enough to try to respond.

Can you contact your doctor with a list of questions via an online Portal, perhaps? I'm learning that some doctors are very thoughtful and responsive in that mode (hooray!) and thus we can minimize our wait time before hearing test result interpretations. You might be able to ask for a call back rather than a written response, if you prefer. Best of luck!

Hi @nancyworld, as you prepare for the upcoming bone marrow biopsy, you might find this related discussion helpful:
- What was your experience with bone marrow biopsy?
https://connect.mayoclinic.org/discussion/bone-biopsy-pain/

Your counsel of preparing a list of questions is wise. May I ask the reason you are having bone marrow and fat pad biopsies? What is being investigated?

Oh, thank you! I'll check that out. I'm scheduled for Dec. 1.

Am sick with COVID now, first time for me and got my 5th vax 10 days before my husband came down with it, and then I had it 3 days later. Thank goodness for vaccines. According to my doctor, I'll still be able to keep my schedule if I recover from COVID quickly.

The suspicion is AL amyloidosis. My FLC ratio was 5.64 kappa/lambda, which isn't totally horrible according to (one unnamed doctor), but I pressed for quicker investigation than watch and wait 3 months. I've done a LOT of reading. The reason I went to doctor originally was for peripheral neuropathy, subsequently confirmed by EMG/NCS.

Hi, Colleen,

I'm not sure whether you saw my reply or not. I'm new to this forum format. If so, that's fine. Just hope I'm doing this right.

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

I'm sorry to hear that you have COVID at the moment. I hope you recovery quickly enough to keep the original appointment for the biopsies. I'll be interested to know what you learn. If the suspicion is proven to be AL amyloidosis, I can direct you to related discussions and members with the same diagnosis to guide you.

Thanks, I will. I expect I'll know more next week depending on how long it takes for results to come back. If the two biopsies are both negative (a 15% chance), then it'll have to be a sural nerve biopsy next, and a longer wait.

@colleenyoung Colleen, I am new to this form and I am being treated for Amyloidosis with a new immunotherapy (BiTE therapy) it has only been out for six months.

I would love to connect with others who have Amyloidosis or multiple myeloma who have had experiences with immunotherapy. Thanks so much!

I was just diagnosed with systemic amyloidosis al
I start chemo 4-8-24 am scared.
They said I’d have to do 4 months of weekly chemo then see how my light chain is reacting if is it good, then stem cell transplant.
It is a lot to take in and wrap your head around.

Hi @sherryzitter, it looks like you may be a trail blazer for BiTE therapy, bispecific T-cell engagers, or BiTEs for short.

For anyone else interested in this recently approved therapy, read more:
- Taking a BiTE Out of Cancer https://www.aacr.org/blog/2023/11/14/bites-help-immune-system-destroy-cancer-cells/

Sherry, would you mind starting a new discussion about BiTE Therapy? (Learn how in the tips in the Help Center https://connect.mayoclinic.org/help-center/)

Let's see if we can find more people who are getting this therapy or considering it. How long have you been on it?