MGRS Diagnosis

Collection went really well got 6 million plus in 2 days without booster shots. I feel very blessed, now I hope I won't need them.

It’s encouraging to hear all is going well with your MGRS diagnosis. I had not seen that acronym before. I am being treated with CyBorD therapy for Kappa Light Chain Deposition Disease that is adversely affecting my kidneys, CKD Stage 3B. I started the therapy 6 weeks ago and have had consultation about stem cell harvesting and replacement. Please continue to post your progress. How did you feel during the harvesting process? Has your kidney function improved?

My kidney function has improved. The collection process was not bad, the worst was the port in my neck. My chemo is dex (steriod), valcad, darzalex and cytoxin once a week for 6 months. I have 2 months to go.

How are you doing, I got home and ended up with a blood clot in my neck from port. I am now on blood thinners and back on my chemo weekly treatments. I have 5 more treatments to go and so ready to be done with them.

Stem cell collection went excellent, collected over 6 million in 2 days. When I returned home I ended up with a blood clot in my neck from the port, so I'm on blood thinners and have had 3 more weeks of treatment. I only have 5 more treatments then Dr is hoping I can be on 1 shot a month. Praying that I don't need a transplant for a long time. Looking forward to a summer with friends and family feeling good.

I’m taking a break from chemo (DaraCyBor D) to go on a cruise that was planned in advance. I completed 2 cycles so far to treat LCDD. Best wishes to you. Looking forward to a good report from you.

Hello how are you do since diagnosis? I have 2 treatment until I'm done with y 6 months of chemo, can't hardly wait. Then not 100% sure how my maintance will be. My stem cells are frozen and hoping I won't need them for a very long time.

Hi Ginger

I’ve had MGUS for 23 years. I also have renal issues, High creatinine, kidney stones. My 6 month kidney panels are never normal. My RDW is always high and my Hgb has gone down from 15.6 to 13.7. In addition I have NF2, systemic cystic disease, hemangiomas of the liver, chronic hyperthyroidism, capillary fragility and several other conditions. I’m concerned that my hematologist has discharged me to leave it in the hands of my PCP. Have you or anyone else encountered this before?

That sounds like alot to deal with, prayer

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