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Kidney Transplant for MM patients

Posted by druchefavour @druchefavour, Jun 26, 2023

I have ESRD. Was scheduled for transplant with a live donor last December (2022). However, the Nephrologists said he noticed an elevation in my blood protein and referred me to a hematologist. Back an forth and just last week the hematologist diagnosed Multiple Myeloma. Though I do not have any symptoms except that I have been on dialysis since the past 7 years and is has always been anemic since ESRD was diagnosed. I am confused. I have not heard back from the transplant center. Should I wave a bye to kidney transplant?

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 26, 2023

@druchefavour Welcome to Mayo Clinic Connect.

I am not sure where you live, or what your transplant center is. Contact them directly and ask them how this changes things. Were you give a diagnosis of multiple myeloma, or the precursor of MGUS [monoclonal gammopathy of unspecified significance]. Has your hematologist referred you to an oncologist, yet?

I am an ESRD patient on dialysis, also. I am an active multiple myeloma patient, and was informed I am not eligible to get a transplant due to the blood cancer. Other kidney recipient patients I know have had to be cancer free for 5 years before their transplant. But a blood cancer falls into a different category, from what I have been told,

I will be curious to hear what information you find out. Will you let me know, please?
Ginger

REPLY
2 replies
Y S | @yss | Jun 28, 2023
In reply to @gingerw "@druchefavour Welcome to Mayo Clinic Connect. I am not sure where you live, or what your..." + (show)
@gingerw

@druchefavour Welcome to Mayo Clinic Connect.

I am not sure where you live, or what your transplant center is. Contact them directly and ask them how this changes things. Were you give a diagnosis of multiple myeloma, or the precursor of MGUS [monoclonal gammopathy of unspecified significance]. Has your hematologist referred you to an oncologist, yet?

I am an ESRD patient on dialysis, also. I am an active multiple myeloma patient, and was informed I am not eligible to get a transplant due to the blood cancer. Other kidney recipient patients I know have had to be cancer free for 5 years before their transplant. But a blood cancer falls into a different category, from what I have been told,

I will be curious to hear what information you find out. Will you let me know, please?
Ginger

Jump to this post

My wife is a myeloma patient. She was on dialysis for 4 years because of a myeloma induced kidney failure. She got a kidney transplant. She was in deep remission at the time, which was confirmed a year earlier (not 5 years), but she was not cancer free since myeloma is incurable. I did extensive research into the subject. There are people who have received a kidney transplant with a more active myeloma than hers. It has been more than a year, the kidney is working fine, no issues from myeloma. This is a difficult subject. 10-15 years ago myeloma was a complete counter-indication for a kidney transplant. Not anymore, but many doctors do not know this. It will take a lot of convincing (it did from us) or looking for a different specialist.

REPLY
1 reply
druchefavour | @druchefavour | Jun 28, 2023
In reply to @gingerw "@druchefavour Welcome to Mayo Clinic Connect. I am not sure where you live, or what your..." + (show)
@gingerw

@druchefavour Welcome to Mayo Clinic Connect.

I am not sure where you live, or what your transplant center is. Contact them directly and ask them how this changes things. Were you give a diagnosis of multiple myeloma, or the precursor of MGUS [monoclonal gammopathy of unspecified significance]. Has your hematologist referred you to an oncologist, yet?

I am an ESRD patient on dialysis, also. I am an active multiple myeloma patient, and was informed I am not eligible to get a transplant due to the blood cancer. Other kidney recipient patients I know have had to be cancer free for 5 years before their transplant. But a blood cancer falls into a different category, from what I have been told,

I will be curious to hear what information you find out. Will you let me know, please?
Ginger

Jump to this post

Thanks Ginger! I appreciate the information. I will keep you posted if I get any information

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 28, 2023
In reply to @yss "My wife is a myeloma patient. She was on dialysis for 4 years because of a..." + (show)
@yss

My wife is a myeloma patient. She was on dialysis for 4 years because of a myeloma induced kidney failure. She got a kidney transplant. She was in deep remission at the time, which was confirmed a year earlier (not 5 years), but she was not cancer free since myeloma is incurable. I did extensive research into the subject. There are people who have received a kidney transplant with a more active myeloma than hers. It has been more than a year, the kidney is working fine, no issues from myeloma. This is a difficult subject. 10-15 years ago myeloma was a complete counter-indication for a kidney transplant. Not anymore, but many doctors do not know this. It will take a lot of convincing (it did from us) or looking for a different specialist.

Jump to this post

@yss Welcome to Mayo Clinic Connect. Thank you for chiming in and telling us about your wife's experience!

A few questions I have for you. What type of multiple myeloma does she have? Is she currently on any treatment for it? And most importantly, how is she doing these days? I am not in any remission. And my ESRD is caused by an ultra-rare autoimmune condition.
Ginger

REPLY
Y S | @yss | Jun 30, 2023

My wife has a kappa light chain myeloma. She was declared MRD negative two years ago. She did not have an ASCT. Still on minimal maintenance. No significant effect on life, so that we have parked the disease for now, especially given that the kidney situation has been sorted out.

REPLY
karen4nn | @karen4nn | Jul 10, 2023

I would reach out to transplant team and see if you are now approved for transplant. Don't wait for them to call you. Good luck. I really hope you can proceed with transplant.

REPLY
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