1. < Blood Cancers & Disorders

MGRS Diagnosis

Posted by f019521 @f019521, Dec 28, 2022

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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edna68 | @edna68 | Jun 29, 2023
In reply to @f019521 "I was diagnosed with MGRS in December 2023. Just completed 26 weeks of Chemotherapy (CyBorD) treatment...." + (show)
@f019521

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

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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.

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tdseid1961 | @tdseid1961 | Nov 8, 2023
In reply to @colleenyoung "Welcome, @tdseid1961. How did the stem cell collection go? How are you doing?" + (show)
@colleenyoung

Welcome, @tdseid1961. How did the stem cell collection go? How are you doing?

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Sorry for not responding, I just found this again. Stem cell collection went well but I ended up with large blood clots in my jugular vein and chest. So I did shots for 4 months 2x a day. Not fun! Finished chemo 1st of June with no maintenance. My number started going back up by August and in September was not good. We decided to try Darzalex weekly before moving to Sctp, it's working great! I am so relieved. My hair is still not good from the chemo and collection I ended up having to wear a wig and the weight gain in my belly is a challenge. My Dr said it all the water but my kidney function is good and my urine protein dropped from 791 to 435 last month. Has anyone else been successful losing weight while on Darzalex, dex, anti viral and montelukast?

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tdseid1961 | @tdseid1961 | Dec 20, 2023

How are doing with your journey? Mine has been a roller coaster. Completed chemo 1st of June, no maintenance and by August my numbers Started going up so September numbers were worse. Started Darzalex shots weekly again for 8 weeks with steroid! Now i got bi-weekly for awhile. Since my 24 hour urine test have been up then down praying they come back down and stay. Once they hit 1000 I'll need the stem cell transplant. Update me on your current situation

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 21, 2023
In reply to @tdseid1961 "How are doing with your journey? Mine has been a roller coaster. Completed chemo 1st of..." + (show)
@tdseid1961

How are doing with your journey? Mine has been a roller coaster. Completed chemo 1st of June, no maintenance and by August my numbers Started going up so September numbers were worse. Started Darzalex shots weekly again for 8 weeks with steroid! Now i got bi-weekly for awhile. Since my 24 hour urine test have been up then down praying they come back down and stay. Once they hit 1000 I'll need the stem cell transplant. Update me on your current situation

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I'm tagging @f019521 to make sure they see your post.

If you want to connect with others who have had a stem cell transplant to know what to expect, let me know. I'll post links.

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tdseid1961 | @tdseid1961 | Jan 8 9:15am
In reply to @f019521 "I was diagnosed with MGRS in December 2023. Just completed 26 weeks of Chemotherapy (CyBorD) treatment...." + (show)
@f019521

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

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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.

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like2dance2 | @like2dance2 | Jan 18 9:16am
In reply to @edna68 "It’s encouraging to hear all is going well with your MGRS diagnosis. I had not seen..." + (show)
@edna68

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?

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I am wondering how they diagnosed your LCDD.
I have high Kappa Light Chain 82.7 and Ratio is 5.76.
My kidney function have dropped significantly in last 6 months. Now stage 3B. I am worried sick about my Kidneys.

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tdseid1961 | @tdseid1961 | Jan 22 8:01am
In reply to @edna68 "It’s encouraging to hear all is going well with your MGRS diagnosis. I had not seen..." + (show)
@edna68

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?

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My kidney function improved with treatment and has stayed stable. My sct collection went really well. Please stay in touch, there aren't many of us to converse with.

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tdseid1961 | @tdseid1961 | May 23 10:12am
In reply to @f019521 "I was diagnosed with MGRS in December 2023. Just completed 26 weeks of Chemotherapy (CyBorD) treatment...." + (show)
@f019521

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

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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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