I am 58 years old and I am at the end of my 2 year mark of being watched with MGUS. My testing takes place every 4 months.
I am IgG lambda and my results are continuously going up. My total protein this time has dropped just slightly and I have a follow-up with doc on Wednesday. My numbers are high, but I am still asymptomatic, with my nerves always being on edge at testing time.
Test results showing for this time are:
Total Protein - 8.7
IgG - 2906
Nothing out of range on CBC or CMP test other than the Total Protein.
My question is this: Every 4 months I have the following test run on my blood draw:
CBC w Diff,
CMP
Either an Immunoglobulin Panel or a Free Light Chain test.
Those last 2 tests mentioned are my question. It seems once in a while they will run both tests, then it will go for a few times of only ordering one OR the other.
Should I be concerned that the test are not run consistently each time?
Would appreciate thoughts on this. Thanks.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Should immunoglobulin & FLC tests always be done?
Hmmm. If I were to pick only 4 tests to use when tracking any stage of most forms of multiple myeloma, they would be:
1. CBC
2. CMP
3. Serum Protein Electrophoresis
4. Serum Free Light Chain Assay
Tracking your IgG M-spike indirectly through a total IgG measurement is pretty imprecise and doesn't make a lot of sense to me. Remember, a total IgG measurement is the sum of the cancerous, monoclonal protein (your IgG M-spike) and the normal, healthy polyclonal IgG protein. My polyclonal IgG component has varied quite a bit over the past several years and has ranged from 625 to 1446 mg/dL (a difference of 819 mg/dL or 0.82 g/dL). Therefore, if I were to rely on my total IgG value alone to estimate what my M-spike value is doing, I could be off by as much as 0.82 g/dL, given my polyclonal IgG variance. I would instead want to directly track my M-spike level via a serum protein electrophoresis test.
Having said that tracking an IgG M-spike level via total IgG doesn't make a lot of sense to me, it is stil useful to track your total IgG, IgA and IgM numbers, regardless of what type of MGUS you have (IgG or otherwise). This is because it's useful to see if any of your uninvolved immunoglobulin levels (in your case, your IgA and IgM levels) are becoming suppressed - which can signal disease progression or a stronger likelihood of disease progression in the future. It's also handy to have the total IgG level for a quick reality check just in case you get a bogus M-spike reading from the serum protein electrophoresis test - which can happen from time to time.
Is the doctor that is tracking your progress a hematologist/oncologist? None of these tests are very expensive, so I'm not sure why he/she wouldn't just run them all each time you come in. Do you have insurance that covers their cost?
1. CBC
2. CMP
3. Serum Protein Electrophoresis
4. Serum Free Light Chain Assay
Tracking your IgG M-spike indirectly through a total IgG measurement is pretty imprecise and doesn't make a lot of sense to me. Remember, a total IgG measurement is the sum of the cancerous, monoclonal protein (your IgG M-spike) and the normal, healthy polyclonal IgG protein. My polyclonal IgG component has varied quite a bit over the past several years and has ranged from 625 to 1446 mg/dL (a difference of 819 mg/dL or 0.82 g/dL). Therefore, if I were to rely on my total IgG value alone to estimate what my M-spike value is doing, I could be off by as much as 0.82 g/dL, given my polyclonal IgG variance. I would instead want to directly track my M-spike level via a serum protein electrophoresis test.
Having said that tracking an IgG M-spike level via total IgG doesn't make a lot of sense to me, it is stil useful to track your total IgG, IgA and IgM numbers, regardless of what type of MGUS you have (IgG or otherwise). This is because it's useful to see if any of your uninvolved immunoglobulin levels (in your case, your IgA and IgM levels) are becoming suppressed - which can signal disease progression or a stronger likelihood of disease progression in the future. It's also handy to have the total IgG level for a quick reality check just in case you get a bogus M-spike reading from the serum protein electrophoresis test - which can happen from time to time.
Is the doctor that is tracking your progress a hematologist/oncologist? None of these tests are very expensive, so I'm not sure why he/she wouldn't just run them all each time you come in. Do you have insurance that covers their cost?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should immunoglobulin & FLC tests always be done?
Yes, my doctor is a hematologist / oncologist.
I do have insurance, but it is rotten insurance. But I do have it. (Must meet big deductible before it kicks in though. Currently paying off last year's deductible while holding our own with this year's deductible. That's just to say how crappy it is.)
Over the 2-year period my IgG level has steadily increased from 2393 to 2906. My lambda free light chain level has increased from 296 to 419. My IgM is low. Over the 2 years it has been low and stayed low, 23 now down to 21, nothing has ever been mentioned about this to me.
I do have tomorrow and part of Wednesday yet to have the other test result to drop in if it was done. I had asked what the test was that was ordered this time, but can't remember if it was 3 or 4 that was named off to me.
So I take that it would be best overall if I was tested each time with 'both' tests? That is really what I am concerned about, that the proper testing and watching is being done. I was asked at last testing in June if I wanted to go to a 6-month testing schedule. My comment was why? Since each time I come in for testing my levels have increased yet again! Wouldn't it be more wise to continue on my current schedule so that things can be caught as early as possible?!
I don't know what to be asking the doctor at this point, or is there anything that needs to be asked? His comment in June was that having no symptoms was the most important thing at this point. Is this true? This doctor is my second doctor that I am now having to get used to. My first doctor that I had gotten used to left this past spring.
I do have insurance, but it is rotten insurance. But I do have it. (Must meet big deductible before it kicks in though. Currently paying off last year's deductible while holding our own with this year's deductible. That's just to say how crappy it is.)
Over the 2-year period my IgG level has steadily increased from 2393 to 2906. My lambda free light chain level has increased from 296 to 419. My IgM is low. Over the 2 years it has been low and stayed low, 23 now down to 21, nothing has ever been mentioned about this to me.
I do have tomorrow and part of Wednesday yet to have the other test result to drop in if it was done. I had asked what the test was that was ordered this time, but can't remember if it was 3 or 4 that was named off to me.
So I take that it would be best overall if I was tested each time with 'both' tests? That is really what I am concerned about, that the proper testing and watching is being done. I was asked at last testing in June if I wanted to go to a 6-month testing schedule. My comment was why? Since each time I come in for testing my levels have increased yet again! Wouldn't it be more wise to continue on my current schedule so that things can be caught as early as possible?!
I don't know what to be asking the doctor at this point, or is there anything that needs to be asked? His comment in June was that having no symptoms was the most important thing at this point. Is this true? This doctor is my second doctor that I am now having to get used to. My first doctor that I had gotten used to left this past spring.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Should immunoglobulin & FLC tests always be done?
Well, I think your doctor is right that the most important thing is that you don't develop any symptoms (i.e. meet one or more of the CRAB criteria) and that you keep on top of that. So, getting a CMP and CBC each time is critical.
But note the most that any of my standard myeloma tests run is about $14 based on the negotiated rate that my insurance company ruses to reimburse the testing company (LabCorp). My entire battery of tests (CBC, CMP, SPEP, IFE, serum free light chain assay, quantitative immunogloboulins (IgG, IgA, IgM) and beta2 microglobulin) has a negotiated insurance rate of $57 (this is what LabCorp is reimbursed and what I would need to pay if I didn't have a negotiated lab copay amount and I hadn't reached my deductible yet). So, I would personally push to at least have all four of the tests I mentioned earlier run each time.
As far as your numbers are concerned, your M-spike is likely around 1.5 - 2 g/dL based on your IgG level. That's not a really low number, but it is also not high and seems consistent with MGUS.
You say your lambda FLC is 419 mg/L (41 mg/dL) , which is modestly increased. But you really need to also look at your lambda/kappa ratio and not just your lambda value to see how your free light chains are doing overall. You start to get worried when your lambda/kappa ratio starts to approach 100.
If it were me, I would stick with a 4 month testing schedule simply because your numbers are on upward vectors, as you mentioned. I also am more relaxed if I know what my numbers are doing and I therefore usually ask to be tested more frequently than my onc thinks is necessary (I'm smoldering and get tested every 3 months - but my doc would be happy with me getting tested every 4-5 months).
But note the most that any of my standard myeloma tests run is about $14 based on the negotiated rate that my insurance company ruses to reimburse the testing company (LabCorp). My entire battery of tests (CBC, CMP, SPEP, IFE, serum free light chain assay, quantitative immunogloboulins (IgG, IgA, IgM) and beta2 microglobulin) has a negotiated insurance rate of $57 (this is what LabCorp is reimbursed and what I would need to pay if I didn't have a negotiated lab copay amount and I hadn't reached my deductible yet). So, I would personally push to at least have all four of the tests I mentioned earlier run each time.
As far as your numbers are concerned, your M-spike is likely around 1.5 - 2 g/dL based on your IgG level. That's not a really low number, but it is also not high and seems consistent with MGUS.
You say your lambda FLC is 419 mg/L (41 mg/dL) , which is modestly increased. But you really need to also look at your lambda/kappa ratio and not just your lambda value to see how your free light chains are doing overall. You start to get worried when your lambda/kappa ratio starts to approach 100.
If it were me, I would stick with a 4 month testing schedule simply because your numbers are on upward vectors, as you mentioned. I also am more relaxed if I know what my numbers are doing and I therefore usually ask to be tested more frequently than my onc thinks is necessary (I'm smoldering and get tested every 3 months - but my doc would be happy with me getting tested every 4-5 months).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should immunoglobulin & FLC tests always be done?
Thanks for the feedback, Multibilly. You have been helpful. Dealing with this for 2 years, you would think I could understand a lot more than I do at this point. I try to read as much as possible sometimes, but can't stick with it for long due to it being so overwhelming with so much info, and trying to understand it all makes my head start to spin.
I get rattled at each checkup, the not knowing of what's been going on during the past 4 months makes my nerves edgy. And yes, once I start to get my numbers, even if they aren't stable, at least it gives me a picture of me. I'm sure going in on Wednesday I will most likely be told the same thing yet again, "No symptoms is good news, so try not to worry" And while I do understand that, it is still like living with a ticking time bomb inside and not knowing if it will ever go off.
Thanks again for you patience and helping me to try to understand just a little bit more.
I get rattled at each checkup, the not knowing of what's been going on during the past 4 months makes my nerves edgy. And yes, once I start to get my numbers, even if they aren't stable, at least it gives me a picture of me. I'm sure going in on Wednesday I will most likely be told the same thing yet again, "No symptoms is good news, so try not to worry" And while I do understand that, it is still like living with a ticking time bomb inside and not knowing if it will ever go off.
Thanks again for you patience and helping me to try to understand just a little bit more.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Should immunoglobulin & FLC tests always be done?
Jane76,
I am someone who has had multiple myeloma for about 2 1/2 years. I have had induction therapy, a stem cell transplant and maintenance. Although I was not terribly sick when diagnosed, I was in some pain and had anemia.
Thankfully, I am in a stringent complete remission, for which I am very thankful.
I'm sorry you have MGUS and that you have anxiety about it. I can fully understand that. However, your disease may never progress and there are very effective treatments these days. Some say that the cure is right around the corner, and I think it will happen if not in my lifetime, in yours.
Perhaps you can find someone with whom you can talk about your situation, possibly even a therapist. Discussing what you are going through and getting someone else's perspective on it may be helpful.
I am someone who has had multiple myeloma for about 2 1/2 years. I have had induction therapy, a stem cell transplant and maintenance. Although I was not terribly sick when diagnosed, I was in some pain and had anemia.
Thankfully, I am in a stringent complete remission, for which I am very thankful.
I'm sorry you have MGUS and that you have anxiety about it. I can fully understand that. However, your disease may never progress and there are very effective treatments these days. Some say that the cure is right around the corner, and I think it will happen if not in my lifetime, in yours.
Perhaps you can find someone with whom you can talk about your situation, possibly even a therapist. Discussing what you are going through and getting someone else's perspective on it may be helpful.
Re: Should immunoglobulin & FLC tests always be done?
I've only been dealing with this for 6 months and I am sufficiently rattled. I am a physician also, so I'm not sure if that helps or hurts me. Staying busy helps; when I'm very idle I tend to think and worry about things more. Good luck!
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Anonymous
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