Just diagnoised with Amyloidosis, kappa light chain restricted.

I had IgA kappa MGUS for 8 years, diagnosed this summer with SMM. They tested me for amyloidosis (fat pad biopsy) which was negative. I have zero risks for chronic kidney disease, other than being 70, but was diagnosed with stage 3a CKD at the same time. My GFR was 70% in Jan, but is now 50%. I suspect I need a kidney biopsy to rule out amyloidosis since fat pad biopsy is not 100% reliable. If you haven't had a bone marrow biopsy it would be good to get one soon because treatment is optimized by what genetic mutations one has (I have 1g21 gain [not good] that is buffered by gain of chromosomes 7, 9, and 15). Based on my research (scientist, but not medicine) it is important to start treatment quickly to minimize risk to kidney and cardiovascular systems. Even tho one doesn't have MM, the treatment seems similar, to decrease or stop replication of the precancerous cells and inflammation thereby decreasing kappa proteins. Treatment should be coordinated by the team, oncologist and nephrologist... There are a number of peer-reviewed papers on AL amyloidosis treatment, including in ResearchGate.

BTW, if you read NIH funded or other research the 2020 and newer pubs are good because the "old" ones commonly don't include the new advances in proteins that lock onto cancerous cells and stop replication. Treatment has evolved a lot in the last few years as well, with use of multiple medicines that can initiate remission and help protect vital organs. I don't know how good this site is, but there is background info at https://www.amyloidosis.org/ .

Thanks Kay,
I was diagnosed with AL amyliodosis on October 9th, now it is Oct
24th. No treatment not even a plan and I am so frustrated because no one wants to take charge of my case. I called Mayo no one has gotten back to me. It's been 4 days, no appointment. My Oncologist referred me to a
Tampa based cancer center but they have not responded either. He wants me seen by someone with more experience. They couldnt even find the referral. In the meantime my gfr keeps dropping. Now less then 20. Sorry for venting.

@like2dance2, I'm sorry you have not yet heard back from Mayo Clinic. You may wish to follow up on Monday or fill out the form to schedule a call with an appointment coordinator: http://mayocl.in/1mtmR63

Are you currently a Mayo Clinic patient?

It's scary getting a new diagnosis and I can understand your sense of urgency. Please don't hesitate to follow up. If you would like to connect with other members diagnosed with AL Amyloidosis and MGUS, you may be interested in these related discussions:
- Diagnosed with MGUS/Amyloidosis
https://connect.mayoclinic.org/discussion/diagnosed-with-mgusamyloidosis/
- Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/
- What is the current protocol for al Amyloidosis?
https://connect.mayoclinic.org/discussion/what-is-the-current-protocol-for-al-amyloidosis/
See all using the group search https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Amyloidosis&index=discussions

Ms like2dance2
I can relate with your frustrations in getting someone to take your case. Our physician sent a request to Mayo in July of this year and we were turned down. We self referred mid August by filling out the online form and were seen by internal medicine who then coordinated our appointments to the different specialists. AL amyloidosis was diagnosed for us in August of 2024. Our first appointment at Mayo Clinic was mid september. Amyloidosis has affected heart, bone marrow, gi tract, and nerves. It is a rare disease that a lot of general doctors havent treated patients. We work with our local rural hospital/clinic, a regional hospital with cancer center and mayo who consults and advises our other doctors with potential treatments and tests.
Fill out the form and you should hear from Mayo by email/phone call. it can take 7-10 days to hear back from them. When they send you a form to fill out use information from your medical records or patient portal to give them the best information regarding your case.
Most of all, do not give up hope! Keep asking Drs for referrals or do research on line for hematology/oncology drs in your vicinity.
Wishing you the best...d