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Hi Mo
This is a really tricky one. Right from the start - at my first visit to the NAC and Dr (now Prof) Gilmore stressed that amyloidosis is different for everyone. Treatment has moved on since I was diagnosed but a lot of the same drugs are still used.
Velcade, thalidomide and Lenalidomide in various cocktails had some impact on my free light chains but not sustained and they caused increasing damage. I hd a Stem Cell Transplant in 2012 which had a 95% response - whoopee! Throughout my treatment (at the Christie in Manchester) I spoke to my haematologist and Prof Gilmore and throughout I had two opinions - fortunately they agreed.
After the transplant we decided not to take any maintenance drugs because I did not tolerate them very well. It was 7 years before I needed more treatment. I started on Daratumumab and that had a very quick effect. The initial course of treatment was stopped part way through because of Covid and I have't had any treatment for over two years. My FLCs are moving up again and we are talking about restarting treatment, but not yet.
How much experience does your consultant have wit Amy? Does s/he talk to the NAC. Is is a multidisciplinary team discussing your case? I have built up trust with my haematologist over 12 years and I still talk to the NAC so we can be sure of considering all the options.
The decisions can be difficult and I hope this helps.