I would be interested in hearing from others with kappa light chain. My kidney function went haywire Ha anyone had kidney function improve? Have you gone into remission? For how long? This is all new to me. I am tolerating chemo well. My biggest complaints are fatigue, and dizziness if I stand too long.
Hi Suzanne, I had Kappa Light Chain, and to answer your question - Yes my kidney function appears to be normal now, and I've been in remission for just over five years.
When I was first diagnosed with MGUS in October 2014 they put me on monthly blood tests and after about 12-14 months it progressed to Smouldering Myeloma and they started to become concerned about my kidney function. After a kidney biopsy that confirmed there were issues from the MM, they started my chemo using Velcade (Bortezamib), Cyclophosphamide, and Dexamethasone in March 2016. Three weeks into the treatment they called me into hospital due to the meds affecting my kidney function and they gave me IV saline for a few days then discharged me with ok Creatinine levels. After that, they halved my chemo dose and after a few months of treatment and observing reasonable response, they harvested my stem cells, and did an autologous stem cell transplant. They then followed it up with about 18 months of maintenance chemotherapy, including 12 months of Thalidomide. In April 2018 I was declared to be "In remission" and five years later I've needed no further treatment yet. Apart from low energy levels and needing more sleep than I used to need, everything is going pretty well, and almost at age 68 I'm still working full time (mostly office work with some plant inspection visits). It's different for everyone, but I think having a positive attitude and communicating well with your medical team makes a big difference. The Doctors will often be able to adjust your treatment to minimise side effects (or at least provide additional meds to minimise the side effects). All the best for your MM journey.
Happy to hear your kidneys recovered. Mine seem to be getting better, so I am hopeful. My age makes me not the ideal candidate for SCT, but it is not completely out of the question. Good luck with your procedure.
Hi Suzanne, I have Kappa Light Chain. Same symptoms. Diagnosed in late March 2023 with kidney problems, which kept me in the hospital for 4 days. Kidneys recovered quickly and I started chemo mid April with no side effects at all: Velcade and Darzalex. Started with Remlimid 4 weeks ago and tolerating well. Scheduled for autologous stem cell transplant in September.
Thank you. That is very helpful..
Welcome. My kappa light chain is also haywire. Just diagnosed officially today. Bloodwork kinda showed this in May. No treatment yet. PET/CT in 2 weeks. Chemo starts on the 14th