My mother is 77 years old and was diagnosed with IgG kappa multiple myeloma five years ago. She had Revlimid, Velcade, and dexamethasone (RVD) a while and eventually went for the stem cell transplant. After the transplant, she went into a nice remission for two years, only taking 5 mg Revlimid maintenance and feeling pretty good.
About 6 months ago her paraprotein (M-spike) starts to show up, and it creeps steadily to 1.0 g/dL (10 g/l). Kyprolis and 15 mg Revlimid daily plus 20 mg dexamethasone per week dropped the paraprotein to 0.3 g/dL (3 g/l), where it has stayed consistently since.
I'm not sure why, but her kappa free light chain level has steadily increased in these past 6 months from 15, 30, 50, 80, 130 etc. and myeloma activity in the form of tumors, new spinal fractures, sternum pain, hip etc. All the while her SPEP showing the 0.3 M-spike, which by all accounts should mean the myeloma is under control.
Her oncologist said she has never seen kappa move on its own without the paraprotein moving with it. She was baffled. Has anyone heard of this?
In desperation, because of the pain and fatigue from suppressed counts and trying to radiate this stuff, we just switched to Darzalex, Pomalyst, and dexamethasone a few days ago. They want to radiate further, and I'm worried it's too much for her right now. She can barely lift her head when she isn't on dex. As some of you may know, radiation can beat you up pretty good, especially when you're already severely anemic.
Thanks!
Kevin
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Re: Paraprotein (M-spike) staying low but kappa FLC rising
What you described is similar to what I have experienced. I originally had no M-spike, but over time it became measurable at 0.2 g/dl. It has been stable at that level for the past 4 years. However, the kappa level of my serum free light chain (sFLC) test showed an increase and it eventually went over 120 and the ratio was over 27. My protocol was changed and the kappa level fell to the low 40s and the ratio under 10. It has remained stable for the past 9 months at that level.
The difference with me and your mom is that I was originally diagnosed with light chain myeloma, so the M-spike has never been a big indicator. It sounds like your mom's myeloma may have changed to be more of light chain variant. Certainly it would appear that the sFLC test is a better measuring tool for her as it is for me.
I hope that the change to Darzalex and Pomalyst will work. That combination has worked for many patients.
The difference with me and your mom is that I was originally diagnosed with light chain myeloma, so the M-spike has never been a big indicator. It sounds like your mom's myeloma may have changed to be more of light chain variant. Certainly it would appear that the sFLC test is a better measuring tool for her as it is for me.
I hope that the change to Darzalex and Pomalyst will work. That combination has worked for many patients.
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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
Re: Paraprotein (M-spike) staying low but kappa FLC rising
Up to 10 percent of relapse occurs as a light chain escape with no rise in the M-spike; she has a light chain myeloma that is new and requires a change in her treatment.
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