I was diagnosed with multiple myeloma with amyloidosis almost five years ago. At that time I was very, very sick and eventually almost died. We first tried conventional chemotherapy and since I developed total kidney failure with the conventional therapy I was approved for new immunotherapy to treat the myeloma. The amyloidosis was just riding along with no treatment at all then. I have been on deratumamab with dexamethadone in a monthly injection. The infusion is now available in a simple injection but it is working so well as an infusion that I'm afraid to change. Even though the amyloidosis is not being treated independently it is remaining stable. I have congestive heart failure and all of my ultrasounds show that it is stable. My symptoms of other problems change continually but none of them are unbearable. My hemotologist/oncologist and myeloma researcher think the amyloidosis is stable because it travels with the mm and as long as the mm is stable the amyloidosis is also. You might want to check into new research studies that might link the treatment protocols together. These infusions are so much more comfortable for me than the chemotherapy was. The chemo gave me horrible diarrhea, which led to the kidney failure. And my oncologist tells me that if/when the mm mutates to adapt to the deratumamab there are other immunotherapies already available that will target another receptor on the cancer cells. I am expecting a long life ahead of me and although it won't be the same as I formerly hadit "ain't that bad" and I can rest until I feel better.
Good luck to all of you! I consider myself incredibly blessed to have gotten sick in this age of new treatment discoveries! Don't give up. Tomorrow might be the day a new treatment option becomes available to you!

Just a side comment. Gayane, you are brave to communicate to us in English when your base language is something else. It would be very difficult, with 'tables turned', for me to communicate in your language. And you did get your ideas stated--congratulations.

I feel exactly the same way. God bless.

Not sure about my heart thickness, but after 2yrs. on tafamidis for Wild-type, my ejection fraction went from 43 to 56!!! feeling a lot better but still have some bad days with limitations......

I have the hereditary Amyloidosis. I started with Onpattro with 4 infusions. I always had a problem with the pre-medications and I only had 3 weeks of relief from symptoms each month. Neuropathy in my arms and legs, Constipation, Memory issues, Concentration issues, double vision, low blood pressure, and heart palpitations, balance issues also. I am now on Amvuttra the shot is every 90 days with my 5th shot coming in October and it is so much better for me. I have more days with less symptoms now. Randomly I do get some symptoms back and I just rest on those days. I am on a support group on Facebook, most people say the shot is better for them, but a few prefer the infusion. I would try it first and give it some time because the information says that full effect of the shot is after 18 months with Amvuttra. I take Motegrity 2 mg for the constipation. My Gastroenterologist order it and its the best medication for me. Best of luck, hope your feeling better soon. ❤️