My first time in the forum here and curious as to your experiences. My situation is kappa light chain myeloma. Been in complete remission for 9 years.
Current labs show no M protein, stable B2M and creatinine exactly where they have been throughout remission.
Blip on mail in labs last week (had front line 2 rounds of chemo and tandem transplants at Univ of Arkansas) showed an uptick in kappa light chains of 7.94----outside normal range , up from 3 in October (which was slightly elevated). Labs in July and April were normal and Kappa/Lamda ratios then were normal. with this level of 7.94, kappa/lamba ratio is high.
Question for the group is, if this is a return of disease, what has been your experience in terms of when doctors may take action? Do they often wait until the light chains reach some specific level before striking at the disease or do they often try to stamp it back out quickly.
I am returning next week for full eval (labs, PET, MRI's, etc)
Hi, I had an appointment with my transplant doctor Friday, he is the one who is managing my maintenance therapy since having the transplant last January. I did not receive complete remission from the transplant so they kept me on aggressive maintenance for 1 year. Here is the issue, no m spike and all levels are now either non detectable or to small to quantify. They know the light chains are still there but they are extremely small and can't get any numbers on them. He is a doctor through the Penn State University and is very well know in the field of MM therapy. He wants to keep me on therapy due to the light chains. His words were any level is to high, there is a much better chance of long term remission if they are nonexistent
However he did reduce the level of treatment, took the velcade away, reduced the revlimid dosage and the Dexamethasone dosage. Remember , we are all unique so each of us require specific attention.
My husband has kappa light chain. My husbands was over 800 when it was first found. Went on chemo for 8 months and it it went down to 2.5. When it went back up to 100 ( which was 2 years later) he was put back on chemo until it was around 3. Then back on it again when it was 100 again. I have found that one it starts to to up…it usually triple every 3 months. But, may not happen with everyone. Best wishes to you. Hope this info helps.
Yes, it does thanks. Mine is currently at 8. Going to tackle it with Zometa for the moment as it has myeloma killing properties to see what happens. I think doc's idea is to hold back as long as possible on any chemo as it has been 8 years since then. Thank you for your thoughts.
Gems said:
My husband has kappa light chain. My husbands was over 800 when it was first found. Went on chemo for 8 months and it it went down to 2.5. When it went back up to 100 ( which was 2 years later) he was put back on chemo until it was around 3. Then back on it again when it was 100 again. I have found that one it starts to to up...it usually triple every 3 months. But, may not happen with everyone. Best wishes to you. Hope this info helps.
My husband has been on Zomenta in between his chemo treatments. I thought that Zomenta was only for the improvement of the bones…I did not know about the cancer treatments.
You must of found your Myeloma early.
Looper said:
Yes, it does thanks. Mine is currently at 8. Going to tackle it with Zometa for the moment as it has myeloma killing properties to see what happens. I think doc's idea is to hold back as long as possible on any chemo as it has been 8 years since then. Thank you for your thoughts.
Gems said:
My husband has kappa light chain. My husbands was over 800 when it was first found. Went on chemo for 8 months and it it went down to 2.5. When it went back up to 100 ( which was 2 years later) he was put back on chemo until it was around 3. Then back on it again when it was 100 again. I have found that one it starts to to up...it usually triple every 3 months. But, may not happen with everyone. Best wishes to you. Hope this info helps.
My husband has been on Zomenta in between his chemo treatments. I thought that Zomenta was only for the improvement of the bones...I did not know about the cancer treatments. You must of found your Myeloma early.
Looper said:
Yes, it does thanks. Mine is currently at 8. Going to tackle it with Zometa for the moment as it has myeloma killing properties to see what happens. I think doc's idea is to hold back as long as possible on any chemo as it has been 8 years since then. Thank you for your thoughts.
Gems said:
My husband has kappa light chain. My husbands was over 800 when it was first found. Went on chemo for 8 months and it it went down to 2.5. When it went back up to 100 ( which was 2 years later) he was put back on chemo until it was around 3. Then back on it again when it was 100 again. I have found that one it starts to to up...it usually triple every 3 months. But, may not happen with everyone. Best wishes to you. Hope this info helps.