[nicko63]

When to start treatment again: does our plan make sense?

by nicko63 on Sat Nov 12, 2016 12:11 pm

My partner was diagnosed with kappa light chain myeloma in April 2014. She had eight cycles of Velcade, cyclophosphamide, and dexamethasone (VCD). She finished her treatment in November 2014 and was declared in remission after a complete response.

Her kappa free light chain level increased slightly over time from 2 to 13 between December 2014 to March 2016. However, in June this year, her kappa level reached 25, and then in September it reached 133.

We have been on three monthly reviews all this time but are now on two monthly reviews. We went to see our myeloma consultant yesterday and the kappa free light chain level is now 408 with a kappa / lambda ratio of 25.

All other blood results and kidney function are good. Her kidney function is around the 60% mark and has been since she finished treatment. On diagnosis it was 14%. Her kappa free light chain level on diagnosis were 10,000.

Our consultant says she is happy to review again in eight weeks. She says treatment may start when the kappa level is around 1000, or the ratio is 100. However she says that if the other blood results and kidney function are still good, she may delay for a further two months or more.

Is this a good plan for when to start treatment again?

Thanks very much from the UK.

[Aclinkboca]

Re: When to start treatment again: does our plan make sense?

by Aclinkboca on Sun Nov 13, 2016 9:58 am

Nick,

I have gone through something similar and I am surprised at the wait and see approach from your doctor. I finished my stem cell transplant last May and within one week my kappa free light chain level had already increased to 180 from 25 a week before I started my stem cell transplant. As soon as my numbers jumped, my stem cell transplant doctor and my myeloma specialists kept close watch on my kappa free light chain number as I neared the 100 day post transplant mark. When my numbers stayed over 100 on day 80, my myeloma doctor started me back on the Revlimid, Velcade, and dexamethasone. Once I was started back on the therapy, my numbers dropped back down to the 20's.

I wish you the best going forward on your journey.

[barbara1200]

Re: When to start treatment again: does our plan make sense?

by barbara1200 on Thu Nov 17, 2016 9:45 pm

nicko63,

I am in a similar position as you. My kappa light reading is up to 328 now after being off chemo for 9 months. My other numbers are still stable for kidney functions, so my oncologist says I am still on a 3 month recall unless I start to feel lousy. I think the feeling is the less chemo you can get by with is the best way to go, and just treating it when the myeloma starts to harm organs lengthens life span.

Best wishes to you.