Hi all,
Quick question ... My husband has kappa light chain myeloma. He is in complete remission (CR) and on Revlimid 10 mg everyday.
Our oncologist is checking his labs every 2 months. Just wondering about the labs being tested. There has never been an M spike due to light chain. The doctor only draws light / heavy chain with ratio in blood, cbc, electrolytes, to check for relapse.
My question is that since the light chain protein is so small, it easily passes through the kidneys to the urine. Should we be checking urine for Bence Jones protein every 2 months also?
His kappa light chains in blood at the highest was only 50. His urine Bence Jones was in the 600's. He had 15 lesions at diagnosis.
He has a lot of pain sometimes, so always wondering if another lesion is brewing.
He had CT of chest, abdomen, and pelvis last month, which was fine, but have no idea about extremities or skull.
Just wondering what tests others have done with light chain myeloma to check for relapse.
Thanks so much,
Kerri
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Re: Regular tests with light chain multiple myeloma?
After a stem cell transplant in 2008 (diagnosis 2007), my only marker has been the kappa light chain, so we believe that is the form of myeloma I now have.
M protein was very low at diagnosis and has not been observed in almost all of the blood tests since then. The main monitoring test we have used from that date has been Freelite. Originally, the test was performed every other month.
Kappa light chain rose last year to an unsatisfactory level, so we abandoned Revlimid maintenance and moved to a clinical trial using an elevated amount of Kyprolis (carfilzomib). The study required monthly 24-hour urine collections. Within several months, the kappa light chain was reduced to a below normal level.
At this point we are attempting to use Kyprolis for maintenance based on a small European (?) study and the Freelite test is being used once a month for monitoring (along with normal CBC, CMP, etc. blood tests); 24 hour urine collection was stopped for now.
I hope this information helps you.
One other point: A PET scan was required before the study. It showed a couple of active areas that could have accounted for the increased kappa light chain. You might ask if a PET scan would be useful.
M protein was very low at diagnosis and has not been observed in almost all of the blood tests since then. The main monitoring test we have used from that date has been Freelite. Originally, the test was performed every other month.
Kappa light chain rose last year to an unsatisfactory level, so we abandoned Revlimid maintenance and moved to a clinical trial using an elevated amount of Kyprolis (carfilzomib). The study required monthly 24-hour urine collections. Within several months, the kappa light chain was reduced to a below normal level.
At this point we are attempting to use Kyprolis for maintenance based on a small European (?) study and the Freelite test is being used once a month for monitoring (along with normal CBC, CMP, etc. blood tests); 24 hour urine collection was stopped for now.
I hope this information helps you.
One other point: A PET scan was required before the study. It showed a couple of active areas that could have accounted for the increased kappa light chain. You might ask if a PET scan would be useful.
-
dcsilv
Re: Regular tests with light chain multiple myeloma?
Kerri,
I would voice my concerns to your husband's oncologist. I also agree with the comment made by dcsilv with respect to a PET scan. Why they did not do a full scan when they did the CT would also be worth asking about. Don't be afraid to press the physician.
I would voice my concerns to your husband's oncologist. I also agree with the comment made by dcsilv with respect to a PET scan. Why they did not do a full scan when they did the CT would also be worth asking about. Don't be afraid to press the physician.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
3 posts
• Page 1 of 1