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I was diagnosed with MGRS in December 2023. Just completed 26 weeks of Chemotherapy (CyBorD) treatment. My kidney function is now normal, and my blood and urine labs are mostly in the normal range. Hemoglobin is still low (10.2-10.8) but my doctor thinks this will improve over time. Side effects from chemo were mild (loss of taste, diarrhea, tiredness) all of which were temporary. My doctor did give me the option of continuing treatment since there is little experience treating such a rare condition and the abnormal proteins are still detectible. I opted to take a break, and we will continue to monitor my blood and urine on a monthly basis. I would be interested in your experience with this condition and your treatment plan. Hope all has gone well for you. Best Wishes, PJP
Replies to "I was diagnosed with MGRS in December 2023. Just completed 26 weeks of Chemotherapy (CyBorD) treatment...."
How has it went since your last post? I also have mgrs and am Back on a maintenance since my numbers went back up after chemo. I would love to hear from you since I know no one with this diease.
Hello, I did the same treatment when I finished dr said no maintance was necessary, I was thrilled for 2 months. I relapsed right away. I started weekly dara with stroids for 2 months then every other for 2 months and now 1x a month. I am hoping it keeps working because my next step is stem cell transplant, which I really don't want to do.
How did your hair and weight do? I gained 20 pounds and my hair got so thin I had to get a wig, it's coming in but it is growing so slow its terrible. I do a 24 urine test next month to see how I am, my kidney function is down again to 59. I am praying for good news.
I look forward to hearing how you are doing.
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I was diagnosed with kappa light chain deposition disease and have been undergoing DaraCyBorD treatments since February 2023. My kappa light chain values were in the normal range after the first 4 weeks of chemotherapy. My kidney function has not improved and remains at stage 3B CKD. My oncologist has recommended continued monthly maintenance of immunotherapy after completing 26 weeks of chemotherapy and no stem cell transplant. My nephrologist recommended a lower sodium diet and eating healthy foods. Best wishes to all for the best outcome possible.