Hei hei from Norway, we only have a few hundred multiple myeloma cases a year in Norway and so even fewer people with Lambda Light chain multiple myeloma. Our lambda light chain disease presented with values of roughly 1200 and went up to 1800 before being successfully controlled by CybordD.
But after 18 months the numbers began rising again, and it appears revlimide - dex is not working.
We would greatly appreciate hearing experiences from other lambda light chain sufferers regarding treatments you tried and did or did not find effective?
At this point we are strongly considering doing a stem cell transplant.
Thank you.
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silverberg - Who do you know with myeloma?: Care provider to my wife
- When were you/they diagnosed?: October 2011
Re: Lambda light chain multiple myeloma
I have lambda light chain myeloma and was revlimid-dexamethasone-velcade. I had high light chain counts (1200) when I started. The treatment brought my counts down to almost normal so I was given cytoxan for good measure and then had my stem cells collected. I then had a stem cell transplant and had a complete response. I went almost a year without any meds before my lambda light chains started to rise again. The doctor put me on Revlimid only but that last only a couple of months before my heart started to become affected by the Revlimid and my counts are slowing rising again even with Revlimid. I am in a waiting period to make sure my heart rhythms are good without the Revlimid and then I'll probably start something else. The stem cell transplant did not held my myeloma at bay for a only a year and it was tough to get through but each of us is different and you may have success for a longer period of time. Good luck.
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: Lambda light chain multiple myeloma
Thanks for your reply.
While on revlimide 25 mg dex 20 mg my wife's lambda numbers skyrocketed to 2250. She became hyper calcemic, anemic and her keratin in numbers went up for the first time. She has lots of new bone damage and broken ribs.
She has been taken off revlimide.
She is now on meplaline- dex- thalidomide-velcade with a plan to do a stem cell transplant with cells collected last year.
While on revlimide 25 mg dex 20 mg my wife's lambda numbers skyrocketed to 2250. She became hyper calcemic, anemic and her keratin in numbers went up for the first time. She has lots of new bone damage and broken ribs.
She has been taken off revlimide.
She is now on meplaline- dex- thalidomide-velcade with a plan to do a stem cell transplant with cells collected last year.
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silverberg - Who do you know with myeloma?: Care provider to my wife
- When were you/they diagnosed?: October 2011
Re: Lambda light chain multiple myeloma
My lambda light chain number was 4493 at diagnosis. After 6 weeks of Revlimid 25 the number came down to 3129, but two weeks later was up to 3500. My hemoglobin went down to 8.3 and WBC to 1.1. The doctor lowered the dose to 10mg, and has added Velcade. I don't have results of the latest blood test yet to see how I'm doing. I am 60 years old. I have some bone damage, but no kidney damage.
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PegBb54
Re: Lambda light chain multiple myeloma
I have lambda light chain multiple myeloma and Velcade worked very well for me. If that is available, you might look into it.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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