Hello! I was diagnosed with MGUS about 3 months ago.
A few days ago, I had my 3-month consult and labwork. I was happy to see that my m-spike decreased from 0.30 to 0.18. I'm just puzzled about my free light chains (serum). My ratio went from 20 to 27. My hematologist is not concerned, since the kappa and lambda are not extreme. All of my other labwork was fine - just slight decrease in WBC and platelets. My IFE reads: monoclonal IgM- kappa and faint kappa light chain detected.
I feel good overall, and I guess this is pretty minor. I've just read that an abnormal k/l ratio could be indicative of myeloma and possibly kidney problems.
Any input would be appreciated! Thanks!!
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Re: MGUS and free light chains
Hi NC Deb,
Have you had a bone marrow biopsy since your postings in this thread a couple of months ago about your situation? You mentioned that you might get one.
You can find a lot of information free light chain numbers and MGUS at this web page.
Based on the information in a key study mentioned there, you have two risk factors for a potentially elevated risk of progression from MGUS to symptomatic myeloma -- your elevated FLC ratio and the IgM type of your monoclonal protein (this is based on your previous posting). Even with these two risk factors, however, the estimate is that you have at most an 18 percent chance of progressing to symptomatic myeloma within 20 years (if we're reading the study results correctly).
We're not physicians, however, and your physician knows the details of your case the best. So you probably want to rely the most of his or her feedback regarding the potential risk of progression that you face given the particulars of your MGUS.
You can find all the Beacon's news and opinion articles related to MGUS at the MGUS topic page,
https://myelomabeacon.org/tag/mgus/
There also may be some MGUS-related abstracts from the ASH 2013 meeting that may be of interest to you. You can find them here:
https://myelomabeacon.org/tag/ash-2013-mgus/
Have you had a bone marrow biopsy since your postings in this thread a couple of months ago about your situation? You mentioned that you might get one.
You can find a lot of information free light chain numbers and MGUS at this web page.
Based on the information in a key study mentioned there, you have two risk factors for a potentially elevated risk of progression from MGUS to symptomatic myeloma -- your elevated FLC ratio and the IgM type of your monoclonal protein (this is based on your previous posting). Even with these two risk factors, however, the estimate is that you have at most an 18 percent chance of progressing to symptomatic myeloma within 20 years (if we're reading the study results correctly).
We're not physicians, however, and your physician knows the details of your case the best. So you probably want to rely the most of his or her feedback regarding the potential risk of progression that you face given the particulars of your MGUS.
You can find all the Beacon's news and opinion articles related to MGUS at the MGUS topic page,
https://myelomabeacon.org/tag/mgus/
There also may be some MGUS-related abstracts from the ASH 2013 meeting that may be of interest to you. You can find them here:
https://myelomabeacon.org/tag/ash-2013-mgus/
Re: MGUS and free light chains
Thanks for your response. My hematologist feels that I have an intermediate risk, but does not feel that a bone marrow biopsy is warranted at this time. He says that he will do one if I really want one. So, when I go back in 3 months, I think I will request that to put my mind at ease (or maybe unease!) Thanks!
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NC Deb - Name: NC Deb
- When were you/they diagnosed?: January 2014 MGUS
- Age at diagnosis: 56
Re: MGUS and free light chains
We're not suggesting that you should have a bone marrow biopsy. We were just curious if you had and, if so, what the results were. If your physician is not pushing for a biopsy, then you should put a lot of weight on his recommendation.
The one other thing that might provide you with a bit more information about the state of your disease is imaging such as an MRI (especially a whole-body MRI, if that's possible where you are) or PET/CT. These would give a sense of the extent -- if any -- to which you have abnormal spots in your bone marrow. It also would give you a baseline for comparison if, in a couple of years, you wanted to check again to see if there are any signs in the bone marrow of disease progression.
Remember, though, you have MGUS, and even with some of the risk factors you have, the chances are very high that the disease will stay in its asymptomatic state for a very long time.
The Beacon published an article about whole body MRIs and MGUS last fall. Here's a link to it.
Whole-Body MRI Helps Identify MGUS Patients At Risk For Progression To Symptomatic Disease
The one other thing that might provide you with a bit more information about the state of your disease is imaging such as an MRI (especially a whole-body MRI, if that's possible where you are) or PET/CT. These would give a sense of the extent -- if any -- to which you have abnormal spots in your bone marrow. It also would give you a baseline for comparison if, in a couple of years, you wanted to check again to see if there are any signs in the bone marrow of disease progression.
Remember, though, you have MGUS, and even with some of the risk factors you have, the chances are very high that the disease will stay in its asymptomatic state for a very long time.
The Beacon published an article about whole body MRIs and MGUS last fall. Here's a link to it.
Whole-Body MRI Helps Identify MGUS Patients At Risk For Progression To Symptomatic Disease
Re: MGUS and free light chains
Beacon Staff,
I have had a skeletal survey, which showed some vague lucencies. I then had a CT scan to further investigate, and all was deemed normal. I guess I shouldn't worry so much, when so many people on this forum have very serious situations. Thank you for all of the info.
I have had a skeletal survey, which showed some vague lucencies. I then had a CT scan to further investigate, and all was deemed normal. I guess I shouldn't worry so much, when so many people on this forum have very serious situations. Thank you for all of the info.
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NC Deb - Name: NC Deb
- When were you/they diagnosed?: January 2014 MGUS
- Age at diagnosis: 56
5 posts
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