[AliceN]

Reverse of light chain numbers!

by AliceN on Mon Apr 02, 2012 8:26 pm

Hi

I was diagnosed in Feb 2011 with IGA lambda light chain myeloma and Amyloidosis. Had Cyclophosphamide, Dexamethasone and Thalidiomide for 6 months and achieved a complete haematological response after only 2 months. The plan is for me to have an ASCT when amyloid has regressed to a certain level (dominant organs affected are kidneys, followed by liver and spleen). At my latest check up, I have achieved some regression of amyloid and am still in haematological CR with lambda light chains in stable normal range with no paraprotein or bence jones protein.

However, my kappa light chains have now risen to just outside normal range, making my ratio of kappa/lambda to just over 2. My consultant wasn't overly concerned with this increase and said his gut feeling was that the increase was due to an infection or inflammation. However he did say that worse case scenario, I could have 2 clones, or that treatment has caused another, different clone, although this would be rare. I can't believe this! Just when you think you think you are getting a handle on this disease, something else unexpected turns up!

My consultant says he will look at my next monthly blood results and if kappa has gone up again, I'll need another BMB.

Has anyone else experienced this situation? Ie.diagnosed with one clonal excess, controlled by treatment, only for a different clonal excess to be dominant?

[Snip]

Re: Reverse of light chain numbers!

by Snip on Fri Apr 06, 2012 1:10 pm

I cannot yet say so categorically, but I may be in the same boat. I went through the ASCT, and had a biopsy 6 weeks later that indicated exactly that phenomenon. I am scheduled for another biopsy next month to confirm/deny that result.

My doctor was quite surprised by that biopsy, by the way... hence the new one scheduled. Apparently it's not very common.

[AliceN]

Re: Reverse of light chain numbers!

by AliceN on Fri Apr 06, 2012 3:06 pm

Hi Snip

Thanks so much for your response. My doctor did mention a possible "MGUS type of condition" and having subsequently read SuzieRose's recent post on Secondary MGUS, I wonder if, potentially, we are examples of this phenomenon. Good luck with the impending BMB and hoping it's just a blip for both of us. Alice

[suzierose]

Re: Reverse of light chain numbers!

by suzierose on Sat Apr 07, 2012 7:23 am

Snip and Alice,

I too am wondering if you both are experiencing what is called secondary MGUS which I recently read and learned about.

I hope one of the Beacon advisors will give feedback on that thread topic..