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MGRS (monoclonal gammopathy of renal significance): Let's connect
I was recently diagnosed with MGRS. My hematologist said that this is very rare but treatable. Started chemotherapy 3 weeks age consisting of CyBorD therapy once per week for 26 weeks. Anyone out there with a similar diagnosis? I would like to hear about your experience and progress. Overall, I feel fine but have low hemoglobin (8. 3) and high creatine (2.4) In time I hope to improve kidney function with this treatment.
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Hi!
I've had a very similar situation as you.
I started the Cy/Bor/D
treatment as well.
I started treatment in July of 2022 and finished Aug 2023.
I had a drug induced psychosis due to the dex after a couple if months and was hospitalized for 3 weeks til it was determined and I was stabilized. Then I restarted the treatment in Dec without the dex.
It has gone really well and I feel good. Any of my blood work such as Hemoglobin, GFR, and creatine has been steadily rising.
My Lamba and Kappa light chain levels are rising and I do suspect sometime in the future
I will be back for another chemo treatment.
How are you doing now? Lori
Hi there,
I am a 34 y/o and was diagnosed with MGRS earlier this year. Discovered abnormal kidney labs on routine labs in January, subsequently had kidney biopsy and several other tests that confirmed MGRS. My subset is kappa light chain deposition disease. Started with Darzalex, Velcade, Dex, and Cyclophosphamide in March and have continued on that plan. Heading into stem cell transplant in August. It’s great to read through all of your comments, and find other patients with a similar diagnosis. Has anyone else here had a stem cell transplant? Thanks!
Thinking about your comment. Have you had a bmb? I know some renal failure is considered CRAB, which can put it in Muliple Myeloma realm. I have anemia but it is not severe yet to be considered CRAB but we watch it closely. They thought I had MGUS until they did a bmb and it turns out I have smoldering. Thus I’m a big bmb proponent if indicated. All the best.
Hi, I've had IgM lambda MGUS for a few years that has been advancing to Waldenstrom"s Macroglobulinemia at a rapid rate but they still have me in wait and watch mode. My latest test show that I now have MGRS with a 10 mg/dL of IgM lambda monoclonal protein in my urine. Creatinine of 1.24 and a EGFR of 61 down from 83 just four months ago. I have scheduled a appointment with hematology and PCP next week. My thinking is they will order a bone marrow biopsy but keep me on wait and watch just because that is easier until they know which way this goes. I'd like to be a little more proactive and thinking of suggesting they put me on a SGLT2 inhibitor. My theory is reducing sugar load through my kidneys would be a good thing. I'm curious if anybody else has a similar situation and if you have any suggestions.