Thank you everyone for your responses, especially Dr. Hoffman. The Beacon is such a good resource to get information from a top myeloma specialist. I did a lot of searching for information about this and found there just was not a lot out there or I would need a medical degree to understand it. I fe...

I have been relapsing for some time with a light chain myeloma clone I have developed. My kappa light chain numbers have been in the thousands for many months now. It is my understanding that all these light chains circulating in the blood can form protein plaques on internal organs, causing complic...

I am in a similar situation to you. I am 49 years old; I was diagnosed in 2011 and since then have been on Velcade, Revlimid, and Pomalyst. I am refractory to Velcade and Revlimid. Early last year, I relapsed with a new myeloma clone. I now have light chain myeloma. I was on Pomalyst and it worked v...

PET scan experimental? That does not sound right. When does something go back to being experimental? My HMO will do very few things that are experimental and they are still doing a lot of PET scans. This does not sound right at all and it sounds like they are making some kind of mistake in understan...

Philatour, Thanks for the reply. I suspected that at what levels do light chains become a significant issue varies a lot from individual and your doc seems to have said the same. So what can you do? Just monitor kidney health till it declines on lab test and by then it may be too late to do much? An...

Thanks Multibilly for posting that link. It describes exactly what has happened to me. I am a Free Light Chain escaper at relapse. My serum light chains have been as high as 3000 mg/L in the last few months, my last one was 904 mg/L and my IGG has been just slightly elevated or normal. At diagnosis ...

With any severe back pain with myeloma I would ask your doctor to make sure that you not having collapsing vertebrae and that appropriate imagery is done to ensure that. In my experience I have been having back pain, some of which is drug related. My oncologist ordered a whole body skeletal survey a...

It sounds like you are doctor shopping to find one that does not do stem cell transplants. In my opinion there is nothing wrong with that in this situation as not doing a stem cell transplant for myeloma is a very viable option that is these days that many patients and doctors are willing to do. Doi...

Lacerta, I started relapsing in March of this year and in the last few months I have had serum free Kappa light chain values between 2500 mg/L and 3000 md/L with the listed normal reference very close to what you have listed. So based on my experience I would say that yes this is possible. When my k...

Smithwcs, Just to add my experience of late, I was on 25 mg Revlimid and 20 mg dexamethasone for maintenance, which is essentially the full dose. My maintenance dose had been steadily increasing over a year as lab work showed it was becoming increasing ineffective. But then when Revlimid stopped wor...