Hi Jim,
That’s also how I was first diagnosed. My protein levels were elevated so I did a bone marrow biopsy first and then a kidney biopsy. They confirmed that I had it in my kidneys, but thankfully, no where else.

10 years later and my protein started to rise and, after another kidney biopsy, it is confirmed that I have relapsed.

My doctor at Princess Margaret in Toronto mentioned a new treatment called Dara-CYBorD which I have seen others talk about. The problem is that Cancer Care Ontario will only fund this treatment for newly diagnosed patients and not for those who have relapsed. How much will the treatment cost out of pocket you ask? $54,000 for the first month and $6000 for each injection moving forward. Of course, I cannot afford this so I will probably be forced to do another stem cell transplant!

I was told because this disease is so rare and there is so few research on using Dara in relapsed patients, that is why it is not being funded.

What treatment were you on Jim? It’s amazing that you went into remission so quickly. God Bless!

I am not sure but I think that AL will be found in the kidneys of anyone with AL. In my case that alerted my PCP to a problem when he saw proteins in my urine. This led to a diagnosis of Amyloidosis AL after a kidney biopsy.
One of the things that also happened was that my Albumin went from a normal of 3.5 to 2.6. Not good!
Albumin was described to me as the blood of life because it does so many important things.
So I started on a campaign to increase my protein by eating well and boosting my protein directly by taking a daily dose of Whey which combined with 16 oz of high protein milk -Fair Life-gives me 56g of protein.
This routine has led to my Albumin reaching 3.4
Whey comes in different flavors. Tried several and finally chose Strawberry
Whey ends to be pricey and the best price I found was at Wal Mart. The brand name I use is Body Fortress. Read the directions for mixing and drinking.
Best to you!
Jim9

Thankfully, my wife’s insurance has covered almost everything, they have done to me except the deductible on prescriptions. If we didn’t have the insurance, we would have lost our home, cars, boat and everything I had worked for. 10 years of intensive medical care would have broken my back financially, as you see how much this stuff cost. With the exception of an electric scooter I wanted, they have approved of all the bills sent to insurance company. It is shameful, that any sick person need fight literally for their lives, to force insurance company’s to honor their obligations to legitimate requests for reimbursement. Had we not had this kind of coverage, I know I would have succumbed to this disease long ago. No way I would have dragged down my wife and son to the poor house.

Thanks for the info Jim.

I have not come out of remission but I expect that when I do it will be covered. I was getting bills for about $1850 per weekly treatment but my doctor's staff filed for a grant and it covered the weekly costs.
You might check

https://www.healthwellfoundation.org/ or

https://www.panfoundation.org/

about a grant.

Be aware that availability of funds for a particular disease comes and goes in both of these sites and you should check at least daily. Personally I would check twice daily.
Read the instructions closely.
Some funds allow you to sign up even though there is no money available.
I pray you get a grant!