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Re: Light Chain Deposition Disease

Posted by @bellaconnie in Cancer, Jan 6, 2012

Just checking to see if anyone was diagnosed with this rare disease? It's a form of Multiple Myloma, and I was fortunate to have a great doctor in Chicago diagnose me. Symptoms? Extremely HIGH protein in urine. Normal is anywhere up to 165, mine was 9,000 and above! Just wanted to talk with someone who went through a stem cell transplant. I'm two years out and still in remission. Love to help in anyway I can! Thanks!

Tags: Cancer


Posted by @helpful, Jan 6, 2012

Hello, I have Multiple Myeloma and had a Stem Cell transplant about 8 years ago.
It lasted about 2 years and then I went on to other treatments.
I Co-host a MM Support group and may be able to answer some of your questions, or find others who can help. I have never heard of Light Chain Deposition Disease, but I know that some patients don't show other indicators and have to be checked via Light Chains.


Posted by @bellaconnie, Jan 16, 2012

Hi! Thanks for responding. I had a stem cell transplant 2 years ago last August. They have continued to give me Valcade (chemo) monthly ever since. My last check up showed I was still doing well, but there were slight hints of the light chains visable. I guess I wondered if anyone else had experienced what I have, and how long they have gone before having to do another stem cell transplant.


Posted by @helpful, Jan 17, 2012

I'm not able to share much about how maintenance therapy (Velcade monthly) affects times between transplants, None of the members of our support group that have had transplants (several) went on Maintenance. Most of then have relapsed, but the timeframe varies from 18Months, to 24 months (like me) to several years. Like me, most have gone on to other treatments after relapsing, such as Velcade/Dex, Revlimide/Dex. I hope this helps.

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