Hi everyone,
I was diagnosed about a year and a half ago with hypothyroidism and treated with levothyroxine. I went to my doctor complaining of back pain in June 2016 and was diagnosed with MGUS. Further testing revealed osteoporosis. All of my tests were within normal range except SPEP which revealed <5.0% homogeneous band in gamma region. Since all of my other tests were normal, no further tests were ordered, but a watch and wait for 6 months.
I hate telling my doctor what to do, but which tests should I request?
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cntrydncr2 - Name: Sue
- Who do you know with myeloma?: Myself-mgus
- When were you/they diagnosed?: June2016
- Age at diagnosis: 68
Re: Which tests to monitor MGUS?
Hi Sue,
Your M-spike and your free light chain results are the most direct ways to monitor your MGUS. If your MGUS stays the way it is now, your M-spike and free light chain results should stay basically flat over time.
The M-spike is included on your serum protein electrophoresis (SPEP) results, and your kappa, lambda, and kappa-lambda ratio results are in the results for the serum free light chain test.
I would also recommend keeping track of your hemoglobin level and your immunoglobulin (IgG, IgA, and IgM) levels. Some might also recommend that you keep track of your serum calcium and creatinine levels, but I'm not sure they will tell you anything beyond what you'll already see in the other results I've suggested you track.
Keep your lab results in a folder or binder, and try to graph them if you can. That will help you see what the usual level of each result is over time, so that you don't get worried by movements up or down that just the usual variation from test to test.
On your SPEP or your serum immunofixation test, there should be something that tells you what sort of monoclonal protein your body is producing -- such as "IgG kappa" or "IgA lambda".
For someone with IgG lambda MGUS, for example, signs that the MGUS is progressing would include
1. Increases in the M-spike
2. Increases in the total IgG level
3. Increases in the lambda free light chain level
4. Decreases in the kappa-lambda free light chain level
5. Decreases in the hemoglobin level
6. Decreases in the IgA or IgM levels
I hope this helps a bit. Good luck!
Your M-spike and your free light chain results are the most direct ways to monitor your MGUS. If your MGUS stays the way it is now, your M-spike and free light chain results should stay basically flat over time.
The M-spike is included on your serum protein electrophoresis (SPEP) results, and your kappa, lambda, and kappa-lambda ratio results are in the results for the serum free light chain test.
I would also recommend keeping track of your hemoglobin level and your immunoglobulin (IgG, IgA, and IgM) levels. Some might also recommend that you keep track of your serum calcium and creatinine levels, but I'm not sure they will tell you anything beyond what you'll already see in the other results I've suggested you track.
Keep your lab results in a folder or binder, and try to graph them if you can. That will help you see what the usual level of each result is over time, so that you don't get worried by movements up or down that just the usual variation from test to test.
On your SPEP or your serum immunofixation test, there should be something that tells you what sort of monoclonal protein your body is producing -- such as "IgG kappa" or "IgA lambda".
For someone with IgG lambda MGUS, for example, signs that the MGUS is progressing would include
1. Increases in the M-spike
2. Increases in the total IgG level
3. Increases in the lambda free light chain level
4. Decreases in the kappa-lambda free light chain level
5. Decreases in the hemoglobin level
6. Decreases in the IgA or IgM levels
I hope this helps a bit. Good luck!
Re: Which tests to monitor MGUS?
Thank you TerryH. It's all so confusing.
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cntrydncr2 - Name: Sue
- Who do you know with myeloma?: Myself-mgus
- When were you/they diagnosed?: June2016
- Age at diagnosis: 68
Re: Which tests to monitor MGUS?
It really isn't that complicated. If you have MGUS and you an M-spike, then you can really focus on what happens with it if you want to keep things simple. Just don't get bent out of shape when it bounced around 0.1 or 0.2 g/dL. And definitely don't worry if the value changes when you switch labs (if you do).
If you have light chain MGUS, this means that you don't have an M-spike, but you do have an elevated kappa or lambda free light chain level, plus an out-of-normal-range kappa-lambda ratio. If that's the case, then it's your free light chain results that you want to watch.
The other stuff I mentioned is worth watching mainly if you want a more complete sense of what's going on. If that makes it too complicated, just focus on your M-spike and/or your free light chain results.
Good luck!
If you have light chain MGUS, this means that you don't have an M-spike, but you do have an elevated kappa or lambda free light chain level, plus an out-of-normal-range kappa-lambda ratio. If that's the case, then it's your free light chain results that you want to watch.
The other stuff I mentioned is worth watching mainly if you want a more complete sense of what's going on. If that makes it too complicated, just focus on your M-spike and/or your free light chain results.
Good luck!
Re: Which tests to monitor MGUS?
Hi,
This is a topic that also interests me.
My IgM has risen from 550 to 680 over 18 months since diagnosis. My M-spike has gone from 0.3 g/dL (3 g/l) to 0.5 g/dL (5 g/l). All other blood work within normal limits. Already had a bone marrow biopsy.
Which blood values should be monitored as to progression?
Thanks.
This is a topic that also interests me.
My IgM has risen from 550 to 680 over 18 months since diagnosis. My M-spike has gone from 0.3 g/dL (3 g/l) to 0.5 g/dL (5 g/l). All other blood work within normal limits. Already had a bone marrow biopsy.
Which blood values should be monitored as to progression?
Thanks.
Re: Which tests to monitor MGUS?
Mdg,
As a smoldering patient, the key things I monitor for disease burden are the following:
1. M-spike
2. Involved free light chain value
3. Free light chain ratio
4. Involved immunoglobulin level (in your case, the IgM level).
To keep an eye on potential CRAB issues that may be developing, I also monitor the following:
1. Hemoglobin
2. Calcium
3. Creatinine
For bonus points (and as Terry suggested), it doesn't hurt to also keep an eye on your uninvolved immunoglboulins (in your case, IgA & IgG) to see if these are becoming suppressed and leading to a condition known as immunonparesis.
I just graph all these values over time and update the data each time I get re-tested. Graphing the data makes it easy to see if any trends are developing and to understand just how much one's numbers can normally fluctuate. It takes about 5-10 minutes to update the data every 3 to 4 months when I get re-tested.
These are some of my representative graphs done in Excel.
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-80.html#p52895
As a smoldering patient, the key things I monitor for disease burden are the following:
1. M-spike
2. Involved free light chain value
3. Free light chain ratio
4. Involved immunoglobulin level (in your case, the IgM level).
To keep an eye on potential CRAB issues that may be developing, I also monitor the following:
1. Hemoglobin
2. Calcium
3. Creatinine
For bonus points (and as Terry suggested), it doesn't hurt to also keep an eye on your uninvolved immunoglboulins (in your case, IgA & IgG) to see if these are becoming suppressed and leading to a condition known as immunonparesis.
I just graph all these values over time and update the data each time I get re-tested. Graphing the data makes it easy to see if any trends are developing and to understand just how much one's numbers can normally fluctuate. It takes about 5-10 minutes to update the data every 3 to 4 months when I get re-tested.
These are some of my representative graphs done in Excel.
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-80.html#p52895
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Which tests to monitor MGUS?
Multibilly,
Thank you for posting graph. I’m new to this and concerned about my diagnosis.
So, it appears that immunoglobulin magnitude and M-spike can vary both positively and negatively over time. Is it fair to say that IgM magnitude correlates directly with the magnitude of the M-spike? However, after looking at your chart, I’m optimistic that it doesn’t always increase over time.
Kindest regards.
Thank you for posting graph. I’m new to this and concerned about my diagnosis.
So, it appears that immunoglobulin magnitude and M-spike can vary both positively and negatively over time. Is it fair to say that IgM magnitude correlates directly with the magnitude of the M-spike? However, after looking at your chart, I’m optimistic that it doesn’t always increase over time.
Kindest regards.
Re: Which tests to monitor MGUS?
Mdg,
So, one's total involved immunoglobulin level should rise and fall roughly in tandem with one's M-spike, assuming that your normal polyclonal (healthy) immunoglobulin level doesn't vary too much. This is because
total involved immunoglobulin level =
involved polyclonal immunoglobulin + M-spike.
But one's involved polyclonal immunoglobulin level doesn't always remain constant and will naturally vary and also be impacted by various illnesses, colds, and infections. That's why it's useful to look at both your total immunoglobulin level and your M-spike when tracking your disease.
As a smoldering patient, my M-spike and total involved immunoglobulin level have been bouncing around in fairly well defined ranges for a few years now. Of course, if my disease were to progress, these values would break above of their ranges for a sustained period of time (i.e., for more than 2 or 3 tests).
The other key thing to consider is your free light chain numbers. Free light chain values tend to be leading indicators because free light chains have much shorter lives than do the IgG, IgA and IgM immunoglobulins. Because the free light chains turn over so quickly, free light chain assays will usually pick up on any disease-related changes much sooner than you would see if you were just monitoring the M-spike level.
But in the end, you need to be looking at all of these numbers to really understand if something is changing in a big way, and not to panic if your numbers go south on just one test.
So, one's total involved immunoglobulin level should rise and fall roughly in tandem with one's M-spike, assuming that your normal polyclonal (healthy) immunoglobulin level doesn't vary too much. This is because
total involved immunoglobulin level =
involved polyclonal immunoglobulin + M-spike.
But one's involved polyclonal immunoglobulin level doesn't always remain constant and will naturally vary and also be impacted by various illnesses, colds, and infections. That's why it's useful to look at both your total immunoglobulin level and your M-spike when tracking your disease.
As a smoldering patient, my M-spike and total involved immunoglobulin level have been bouncing around in fairly well defined ranges for a few years now. Of course, if my disease were to progress, these values would break above of their ranges for a sustained period of time (i.e., for more than 2 or 3 tests).
The other key thing to consider is your free light chain numbers. Free light chain values tend to be leading indicators because free light chains have much shorter lives than do the IgG, IgA and IgM immunoglobulins. Because the free light chains turn over so quickly, free light chain assays will usually pick up on any disease-related changes much sooner than you would see if you were just monitoring the M-spike level.
But in the end, you need to be looking at all of these numbers to really understand if something is changing in a big way, and not to panic if your numbers go south on just one test.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
8 posts
• Page 1 of 1