[jcorosco]

Lambda light chain smoldering myeloma

by jcorosco on Mon Oct 28, 2013 11:48 am

I was just reading an article on light chain lambda only (which is what I am, smoldering) and saw that it was really rare...only 20% of multiple myeloma is light chain and only 20% of those are lambda. That said, I was wondering for those with light chain lambda…what has your experience been ( same as most multiple myeloma:bone lesion wise. kidneys, and therapy wise)? Most of the literature doesn't address "us".

[Louise777]

Re: Lambda light chain smoldering myeloma

by Louise777 on Mon Oct 28, 2013 11:59 am

I read your post but am not quite sure exactly what your question is? Can you rephrase it.

[jcorosco]

Re: Lambda light chain smoldering myeloma

by jcorosco on Mon Oct 28, 2013 12:47 pm

In all the forums, support groups, etc. most people are "regular" myeloma (not that there really is such a thing)…and so all the posts and most of the literature refers to people who have both light and heavy chains…with the associated M-spike, iG etc…so I'm trying to get a handle on what I can expect, knowing that although I have SMM, its not exactly the same as what most of the literature speaks too…even the classification system for MGUS vs SMM vs multiple myeloma refers to characteristics not found in light chain myeloma.

[Dr. Jason Valent]

Re: Lambda light chain smoldering myeloma

by Dr. Jason Valent on Mon Oct 28, 2013 9:34 pm

With the light chain only finding, the same principles apply for monitoring smoldering myeloma. Is the number of the abnormal light chain changing over time or not. Monitoring for the development of end organ damage with urine and blood testing and bone imaging at regular intervals are important. Report new concerns to your doctor when they arise.

Hope this helps.

[jcorosco]

Re: Lambda light chain smoldering myeloma

by jcorosco on Tue Oct 29, 2013 1:05 am

Since kidney damage is prominent, is there anything I should/could be doing to protect/beef up my kidneys?

[Wayne K]

Re: Lambda light chain smoldering myeloma

by Wayne K on Tue Oct 29, 2013 10:51 am

That is what I have. In my case I had a very high creatinine and very low hemoglobin when diagnosed. I had to go on dialysis for 5 months, they were literally plugged up with light chains, and took a regimen of Velcade. I did a SCT a year after my diagnosis while I was in remission. I really can't advise you, but I can tell you to be kind to your kidneys. I would roughly follow a kidney disease diet, be very careful about contacts and use vigorous sanitation of hands and fresh vegetables.
My hints, that I didn't connect, were excessive foam in my urine. A couple of areas of pain in my ribs that resembled muscle pulls and increasing shortness of breath. I thought the change in my urine was strange, but assumed it had to do with something I was taking. The "muscle pulls" were in my ribs and so shallow it was hard to place them exactly. I should have been more curious in the fact they remained unchanged for months, but again I assumed I was re injuring them. I was somewhat concerned about my breathing, but I had mild COPD and the fact that the symptoms fluctuated kept me on that idea. I know now it was my low hemoglobin causing the lack of oxygen. My lungs were taking in the O2, but didn't have enough hemoglobin to distribute it.
I have no idea if my symptoms were standard or not, but maybe this will give you some things to monitor.

[DanaH]

Re: Lambda light chain smoldering myeloma

by DanaH on Tue Oct 29, 2013 12:01 pm

What type of bone imaging would be best to do @ regular intervals? Full skeletal surveys, MRI's, or PET/CT ?

[Dr. Jason Valent]

Re: Lambda light chain smoldering myeloma

by Dr. Jason Valent on Wed Oct 30, 2013 4:16 pm

not necessarily. But I often advocate limiting the use of NSAID pain medications like ibuprofen or naproxen.