Monoclonal B-cells in kidneys- treatment is chemotherapy

Posted by sue1952 @sue1952, Sat, Jun 8 7:18am

Good morning. I was diagnosed with a rare kidney disease that is typically secondary to Lymphoma, lupus or myeloma. After extensive testing and biopsies over 2.5 years, it was concluded, I did not have any of the cancers and the kidney disease is primary. The monoclonal -B cells clone themselves, as it says, and break down the filtering system in your kidneys. I
am in Stage 3 of kidney disease. Previous studies showed that treatment with CyborD was effective. Is there anyone else on this particular chemo? If not, I would just like to connect with others who are trying to continue with their lives while managing chemo and all that brings with it. I am 66, single, and still working full time. I used to be VERY active but am feeling isolated because working and managing this disease consumes my time and energy. In order to accommodate my weekly trips to Mayo (from the Cities), I needed to request a schedule change to four ten hour days. My weekends have been spent trying to get normal chores done and dealing with the side effects of the chemo. Would love to hear from and talk with others.

@sue1952, you may notice I actually moved your discussion to the Kidney & Bladder group since you mentioned that your diagnosis was a rare type of kidney disease. Here are few other discussions where members discuss different stages of kidney disease that you may be interested in:

– 3rd stage kidney disease, https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/
– Diagnosed with stage 5 kidney disease, but fell fine, https://connect.mayoclinic.org/discussion/stage-five-kidney-disease/
– Just diagnosed with stage 3 CKD, https://connect.mayoclinic.org/discussion/just-diagnosed-with-stage-3-ckd/

@sue1952, I like your idea of having a discussion that is for chemotherapy, regardless of the reason you are receiving chemotherapy. I suggest starting a discussion dedicated to chemotherapy (this discussion could be started in any group and I can help get it in other groups. A descriptive title like, "Chemotherapy: Living with the side-effects," would be a great discussion to build around.

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Hi Justin. In what group would you recommend I start?

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I had a problem that was close. I developed Mantle Cell Lymphoma about 5 years ago and it presented in my kidneys. MCL is a very rare cancer and my onc (MD Anderson Cancer Hospital) said he had seen only one other case where it presented in the kidneys. MCL is a B cell lymphoma which shows up in the lymphocytes (which built up in my kidneys). I had chemo and it put me in remission and helped my kidneys. You might consider having your neph doctor consult with a lymphoma specialist. There are many new therapies today that do not require chemo.

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They have been working together from the beginning

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@sue1952

They have been working together from the beginning

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Good. You might want to read up on the immunotherapy and targeted therapy drugs that are not chemo and discuss with your hematologist.

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Actually, my hematologist is one of the top researchers of MPGN and its treatment. This is the treatment of choice. I did not do well on the immunotherapy. In fact got worse.

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Good. Just a few random thoughts. Glad you are seeing expert. What is his name? By the way, has it affected your kidney function?

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@maxwell123

Good. Just a few random thoughts. Glad you are seeing expert. What is his name? By the way, has it affected your kidney function?

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His name is Dr. Leung and Dr. Hogan is the nephrologist. I think my care has been top notch.

I am at Stage 3b of CKD and holding steady .

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@sue1952

His name is Dr. Leung and Dr. Hogan is the nephrologist. I think my care has been top notch.

I am at Stage 3b of CKD and holding steady .

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Thank you! I'll save those names. I am exploring kidney stem cell therapy at Mayo. I'm not sure they are doing that yet, but from what I see on the internet they are. I have a call with the transplant consultant on Wednesday to see if they are doing it — either as a trial (which I believe they are) or standard of care treatment. I'll find out and if they say it is a possibility I will schedule an appointment. I spent three years on dialysis (2014, 2015 & 2016) and came off after many lifestyle and other changes and without a transplant. I don't want a transplant and I sure don't want to go back on dialysis. My GFR is about 17 today. It was 1 when I went on in 2014!

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Holy moley!!! 1??? You have been through so much! I feel like a wuss for complaining. Let me know how I can be supportive.

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OMG! We all have our crosses to bear. I'm just glad God gave us the ability to seek out the experts to find the best medical science possible to treat our rare cases. Good luck to you!

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@maxwell123

OMG! We all have our crosses to bear. I'm just glad God gave us the ability to seek out the experts to find the best medical science possible to treat our rare cases. Good luck to you!

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@maxwell123, Have you seen this video? It might be good preparation for your consult tomorrow(?).
Regenerative medicine consultation service
https://www.mayoclinic.org/departments-centers/transplant-center/regenerative-medicine-consultation-service/gnc-20203917

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