[Otumoetai]

Serum Free Light Chains

by Otumoetai on Sun Mar 11, 2012 5:11 am

Husband diagnosed with lgG kappa multiple myeloma.
My husband has been advised his serum free light chains are now 385, the highest they have been. His haematologist has said he is not unduly concerned. Haemotologist is overseas, and since he has seen my husband he has developed pain in his shoulders upper arms and hips. Should we be concerned with this increase in serum free light chains? Also what is the upper figure ie what is this out of?

[Ron Harvot]

Re: Serum Free Light Chains

by Ron Harvot on Sun Mar 11, 2012 8:43 pm

Nomally the measurement is in terms of mg/L.
A normal Kappa Light Chain is between 3.30-19.4 mg/L

A reading of 385 would be very high if, and that is a big if, the measurement is in mg/L.

The light chain assay also measures the Lamda Light Chain and the Kappa/Lamda ratio

You should get your husbands doctor to explain the readings and the treatment protocal.

Ron

[Otumoetai1]

Re: Serum Free Light Chains

by Otumoetai1 on Mon Mar 12, 2012 1:19 am

Hi Ron, the 385 is mg/L. His options for treatment have been exhausted in NZ. There is talk of Lenalidamide but this is not funded in NZ and I think would cost $60,000 if it could be sourced. He has had no significant response to intermediate dose Cyclo (1g/m2 every 21 days) and Dex 40mg days 1 - 4, days 12 - 15, cycles repeated every 21 days); changed to PAD (Bortezomib, doxorubin, dexamethasone) - no response after 3 cycle3s, therefore tried on VTD (Velcade, thalidomide, dexamethasone) chemo interrupted due to NSTEMI. Has neuropathy in legs and feet which is probably due to chemo and Thalidamide so contraindicated. He does not tolerate chemo well and has had several hospitalisations for infections due to being neutrapenic. Also had failed stem cell harvest 12 months ago due to febrile neutropenia and infection (culture grew pseudomonas). Also had acute myocardial infarction for which he had stenting done in 2011. He is about to start on mthly intravenous medication to strengthen his bones. Currently has aching hips, shoulders and upper arm bones. He has not had any chemo for the last 12 months. Was diagnosed 2 yrs ago. Appointment with haematologist this week. Just on Gabapentin for pain. I would be interested to hear from anyone re any information that would help us.

[Larry Stroupe]

Re: Serum Free Light Chains

by Larry Stroupe on Mon Mar 12, 2012 11:02 am

I know you said he had received Velcade in a cocktail but has he tried it alone? Here in the states it was just approved for subcutaneous use. My cousin when first diagnosed had light chains in the upper 300's as your husband has and was treated with Velcade alone and it did wonders. Has his oncologist/hematologist suggested doing a alogeneic stem cell transplant? I am sorry to hear of his troubles and will be sending my thoughts to you and him as well.

[peachiee]

Re: Serum Free Light Chains

by peachiee on Mon Mar 12, 2012 3:16 pm

My dad started out with Lenalidomide/Revlimid and Dexamethasone. He was on a study that compared Rev and Dex with Mephalan, Prednisone and Thalidomide (MPT). He was assigned to the Rev and Dex combination. It didn't work that well for him; he started becoming tolerant to the drug. He's been on other drugs, like Cyclophosphamide and Velcade, but they didn't work for him either. He's now on pomalidomide, which is a drug that's derived from and similar to Thalidomide and Lenalidomide. It's been the best treatment for him, with the least side effects (less fatigue, better blood counts, improved appetite...). I'd suggest looking into studies that provide the newer drugs, or drugs that aren't funded by your government. I'll admit that entering a study sounds scary, but the patient is watched even more closely by the research nurses and the doctors than on more "traditional" therapies and the newer drugs typically will have less side effects than the older ones.

[Ron Harvot]

Re: Serum Free Light Chains

by Ron Harvot on Mon Mar 12, 2012 6:00 pm

It sounds like that NZ has not provided funding for Revlimid in the near future. So I doubt they would cover newer deriviatives. I do note that your husband has been on Velcade, Dex and Thalidamide and that has worked for him but for the bad side effects. SQ Velcade shots have been shown to reduce the effects of PN substantially. Perhaps he can be moved to the shot format instead of the infusion on Velcade. The bone hardening infusions such as Aredia or Zometa should help with the bone pain as they may help reduce bone lesions. I am somewhat surprised that NZ will not cover Revlimid. The drug has been on the market for several years and generally has replaced Thalidamide in the U.S.

Ron

[Paula]

Re: Serum Free Light Chains

by Paula on Mon Mar 12, 2012 10:27 pm

Ron Is not Revlimid called Velcade?
If so, it was approved in NZ around May 2010, I read the newspaper article if you google it...
Paula

[Paula]

Re: Serum Free Light Chains

by Paula on Mon Mar 12, 2012 10:33 pm

OK I see they are not the same drug...sorry. should have googled it first.