Demaranch,
Well, clean PET and 8% on bone marrow biopsy is certainly a good news, but keep in mind that bone marrow biopsies can be "hit and miss".
Some trends are not going in the right direction, and there seems to be a significant increase in M-protein, based on the IgG value. Also, there is immunoparesis (low uninvolved immunoglobulins, IgA and IgM) and high free light chain ratio, which qualifies you as "high risk".
I would not worry too much about the jump in the free light chain ratio from 14 to 100, though, because it was only caused by the lambda free light chain level being very small while the kappa level remained stable. I once had a test where my lambda level was down and the ratio jumped from 25 to 65, but that appeared to be a lab error with the lambda value, as it was not confirmed next test.
Maybe ask to repeat the serum free light chain test if you can?
Best of luck!
Forums
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Dimamar,
Thank you for the input. I have been thinking about this all weekend. The doctor seemed to think the low lambda free light chain level could possibly be a lab error but does not want to repeat the bloodwork until just before he comes back in 2 months. The doctor performing the bone marrow biopsy had to try 4 times and hit a nerve on the 3rd try, which sent my husband into mild shock, with his blood pressure dropping significantly and him getting pale. It was an awful experience. Yes, I stay in the room and hold his hand. His doctor said she won't send him there again and will do it next time herself.
I've read up on bone marrow biopsies enough to know they can be somewhat subjective and as you say, hit and miss. He is 0.1 off of the 3.0 level of M protein for them to consider that he`s progressed to multiple myeloma or smoldering multiple myeloma, and I'm not convinced that the anemia is not a CRAB symptom and is caused by something else, as the doctor seems to think might be the case. Keep trying to tell myself I'm not a doctor, but it just doesn't feel right.
I have been thinking about getting a second opinion. Just not sure if I'll wait until after his next appointment in March or just do it now. He is certainly high risk, which is why they`ve changed his follow up visits to every 2 months from every 6 months.
Thank you for the input. I have been thinking about this all weekend. The doctor seemed to think the low lambda free light chain level could possibly be a lab error but does not want to repeat the bloodwork until just before he comes back in 2 months. The doctor performing the bone marrow biopsy had to try 4 times and hit a nerve on the 3rd try, which sent my husband into mild shock, with his blood pressure dropping significantly and him getting pale. It was an awful experience. Yes, I stay in the room and hold his hand. His doctor said she won't send him there again and will do it next time herself.
I've read up on bone marrow biopsies enough to know they can be somewhat subjective and as you say, hit and miss. He is 0.1 off of the 3.0 level of M protein for them to consider that he`s progressed to multiple myeloma or smoldering multiple myeloma, and I'm not convinced that the anemia is not a CRAB symptom and is caused by something else, as the doctor seems to think might be the case. Keep trying to tell myself I'm not a doctor, but it just doesn't feel right.
I have been thinking about getting a second opinion. Just not sure if I'll wait until after his next appointment in March or just do it now. He is certainly high risk, which is why they`ve changed his follow up visits to every 2 months from every 6 months.
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Hello demaranch,
I agree that the lambda value from the latest serum free light chain results could be an error / fluke.
What sort of hemoglobin level and M-spike did your husband have the first few times he had blood tests after his MGUS diagnosis six years ago? You might want to go back and look at those results to see if his hemoglobin always has been low, even back when he was first diagnosed, or if his hemoglobin has slowly gone down as his M-spike has gone up.
Your husband's doctor has ordered all the usual tests to check to see if your husband's MGUS is progressing. He's had the blood tests that are recommended, a bone marrow biopsy, and imaging (PET scan).
The only question marks from all these tests are the unusual free light chain ratio and low hemoglobin level.
If the free light chain ratio really is a fluke, and if the low hemoglobin has been around for a long time, then I think it's reasonable for the doctor to recommend waiting for more evidence that the disease has progressed before saying, for example, that your husband should be treated.
If the high free light chain ratio is really worrying you, see if you can get a new test done sometime soon to put your mind at ease.
I agree that the lambda value from the latest serum free light chain results could be an error / fluke.
What sort of hemoglobin level and M-spike did your husband have the first few times he had blood tests after his MGUS diagnosis six years ago? You might want to go back and look at those results to see if his hemoglobin always has been low, even back when he was first diagnosed, or if his hemoglobin has slowly gone down as his M-spike has gone up.
Your husband's doctor has ordered all the usual tests to check to see if your husband's MGUS is progressing. He's had the blood tests that are recommended, a bone marrow biopsy, and imaging (PET scan).
The only question marks from all these tests are the unusual free light chain ratio and low hemoglobin level.
If the free light chain ratio really is a fluke, and if the low hemoglobin has been around for a long time, then I think it's reasonable for the doctor to recommend waiting for more evidence that the disease has progressed before saying, for example, that your husband should be treated.
If the high free light chain ratio is really worrying you, see if you can get a new test done sometime soon to put your mind at ease.
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Hi,
Thanks for your reply. His hemoglobin was very low in 2015 when he almost died of pneumonia that turned into septic shock and they discovered a bleeding ulcer. It was so low he required 2 transfusions. It was 12.5 in May 2017.
He has a very hard time fighting infections. Even as sick as he was, his WBC count was not very high. I don't know what his M-spike has been prior to now. It's not listed anywhere. I called and got a referral to Michigan State University multiple myeloma clinic, but we've decided to just wait 2 months and see what the test results are at that time. Then we'll decide if we want to go to University of Michigan for a second opinion.
One issue I'm trying to clarify is if it is possible to have multiple myeloma if you do not have >10% plasma cells in a bone marrow biopsy or a bone lesion? I find conflicting information. His doctor says no, he must have one or the other for a multiple myeloma diagnosis.
Thanks for your reply. His hemoglobin was very low in 2015 when he almost died of pneumonia that turned into septic shock and they discovered a bleeding ulcer. It was so low he required 2 transfusions. It was 12.5 in May 2017.
He has a very hard time fighting infections. Even as sick as he was, his WBC count was not very high. I don't know what his M-spike has been prior to now. It's not listed anywhere. I called and got a referral to Michigan State University multiple myeloma clinic, but we've decided to just wait 2 months and see what the test results are at that time. Then we'll decide if we want to go to University of Michigan for a second opinion.
One issue I'm trying to clarify is if it is possible to have multiple myeloma if you do not have >10% plasma cells in a bone marrow biopsy or a bone lesion? I find conflicting information. His doctor says no, he must have one or the other for a multiple myeloma diagnosis.
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Hi demaranch,
I mentioned earlier that the criteria for a multiple myeloma diagnosis are listed here:
https://myelomabeacon.org/forum/criteria-for-multiple-myeloma-diagnosis-t8505.html
The first criteria listed are that there
"must be clear evidence that clonal plasma cells, which are a particular kind of abnormal plasma cells, are being produced and building up in the body. In particular,
So, yes, a diagnosis of multiple myeloma does require either a (clonal) plasma cell percentage greater than 10 percent, or convincing evidence of a plasma tumor.
As Multibilly pointed out, the M-spike will be reported either as the "M-spike", "Abnormal protein band," "Monoclonal protein", "Paraprotein", or something similar on the lab test titled "Serum Protein Electrophoresis", "SPEP", etc. The SPEP test also will report results for
Given your husband's history of anemia prior to his MGUS diagnosis, it seems reasonable for his doctors to believe it is due to something other than MGUS / myeloma. Given that he doesn't have any of the CRAB symptoms or other myeloma-defining events, his diagnosis is either MGUS or smoldering myeloma. Since his plasma cell percentage is less than 10 percent, his M-spike is the key to determining if he is still MGUS, or now smoldering. If his M-spike is above 3.0 g/dL, then he is now smoldering.
Here is a link to a summary of the criteria for an MGUS diagnosis
https://myelomabeacon.org/forum/criteria-for-mgus-diagnosis-t8507.html
A smoldering diagnosis basically is made when someone doesn't meet the criteria for an MGUS diagnosis and also doesn't meet the criteria for a diagnosis of symptomatic (active) multiple myeloma. See this summary of the criteria for a smoldering myeloma diagnosis:
https://myelomabeacon.org/forum/criteria-for-smoldering-multiple-myeloma-diagnosis-t8506.html
Good luck!
I mentioned earlier that the criteria for a multiple myeloma diagnosis are listed here:
https://myelomabeacon.org/forum/criteria-for-multiple-myeloma-diagnosis-t8505.html
The first criteria listed are that there
"must be clear evidence that clonal plasma cells, which are a particular kind of abnormal plasma cells, are being produced and building up in the body. In particular,
- At least 10 percent of the cells in the bone marrow must be clonal plasma cells, OR
- There must be biopsy-based evidence of a plasma tumor ("plasmacytoma") in the bones or elsewhere in the body."
So, yes, a diagnosis of multiple myeloma does require either a (clonal) plasma cell percentage greater than 10 percent, or convincing evidence of a plasma tumor.
As Multibilly pointed out, the M-spike will be reported either as the "M-spike", "Abnormal protein band," "Monoclonal protein", "Paraprotein", or something similar on the lab test titled "Serum Protein Electrophoresis", "SPEP", etc. The SPEP test also will report results for
- Albumin
- Alpha 1 Globulin
- Alpha 2 Globulin
- Beta 1 Globulin
- Beta 2 Globulin
- Gamma Globulin
Given your husband's history of anemia prior to his MGUS diagnosis, it seems reasonable for his doctors to believe it is due to something other than MGUS / myeloma. Given that he doesn't have any of the CRAB symptoms or other myeloma-defining events, his diagnosis is either MGUS or smoldering myeloma. Since his plasma cell percentage is less than 10 percent, his M-spike is the key to determining if he is still MGUS, or now smoldering. If his M-spike is above 3.0 g/dL, then he is now smoldering.
Here is a link to a summary of the criteria for an MGUS diagnosis
https://myelomabeacon.org/forum/criteria-for-mgus-diagnosis-t8507.html
A smoldering diagnosis basically is made when someone doesn't meet the criteria for an MGUS diagnosis and also doesn't meet the criteria for a diagnosis of symptomatic (active) multiple myeloma. See this summary of the criteria for a smoldering myeloma diagnosis:
https://myelomabeacon.org/forum/criteria-for-smoldering-multiple-myeloma-diagnosis-t8506.html
Good luck!
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Demaranch,
Well, I am not sure if it's all that critical to qualify your husband as MGUS / smoldering, as these are just benchmarks. What's critical is watching closely and preventing organ damage.
I would suggest getting a second opinion now, if you can, with someone who specializes in multiple myeloma.
For me, my initial oncologist wanted to treat me full strength and was pushing me hard based on erroneous lesion on my skull, shown on x-ray.. It was later not confirmed on CT scan, and I am, thankfully, still smoldering 1.5 years later. M-protein and kappa-lambda ratio stable, IgA and IgM already very low and keep going down and ionized/normalized calcium high.
In my opinion, the longer you can stay away from treatment, the better. Just a gut feeling.
My understanding is that with multiple myeloma, stage is not as important as in solid cancers, what's important is how you respond to treatment. And, of course, prevent organ damage, which is why you do blood tests. Have they done a 24-hour urine test, by the way?
In your case, however, unfortunately, he has a few factors that are not so great: infections, low HGB, RBC, WBC, M-protein relatively high and trending up, immunoparesis.
Sorry he had such a hard time with bone marrow biopsy. Mine was not fun, but I'd say I dread root canal worse.
Best of luck, hope your next tests are stable or better.
Well, I am not sure if it's all that critical to qualify your husband as MGUS / smoldering, as these are just benchmarks. What's critical is watching closely and preventing organ damage.
I would suggest getting a second opinion now, if you can, with someone who specializes in multiple myeloma.
For me, my initial oncologist wanted to treat me full strength and was pushing me hard based on erroneous lesion on my skull, shown on x-ray.. It was later not confirmed on CT scan, and I am, thankfully, still smoldering 1.5 years later. M-protein and kappa-lambda ratio stable, IgA and IgM already very low and keep going down and ionized/normalized calcium high.
In my opinion, the longer you can stay away from treatment, the better. Just a gut feeling.
My understanding is that with multiple myeloma, stage is not as important as in solid cancers, what's important is how you respond to treatment. And, of course, prevent organ damage, which is why you do blood tests. Have they done a 24-hour urine test, by the way?
In your case, however, unfortunately, he has a few factors that are not so great: infections, low HGB, RBC, WBC, M-protein relatively high and trending up, immunoparesis.
Sorry he had such a hard time with bone marrow biopsy. Mine was not fun, but I'd say I dread root canal worse.
Best of luck, hope your next tests are stable or better.
-
Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Thank you both for your replies.
The only reason it would matter to be labeled as MGUS versus smoldering is because he's a Vietnam veteran, exposed to Agent Orange. Multiple myeloma is considered a presumptive exposure to Agent Orange, and he would qualify for benefits. However, they do not include MGUS in their presumption criteria.
I'm also very concerned about his inability to fight infections. We run to the emergency room or doctor with every little thing now. If treatment would help him fight infections, that would be great. I almost lost him 2 years ago. Septic shock is scary. Every organ in his body was shutting down.
But I do understand that the treatment options aren't great. Many cause neuropathy and he certainly doesn't need to make that any worse! For now, we are going to wait until his March 2nd blood work and see how that looks. Then we'll decide if we want to get a second opinion
The only reason it would matter to be labeled as MGUS versus smoldering is because he's a Vietnam veteran, exposed to Agent Orange. Multiple myeloma is considered a presumptive exposure to Agent Orange, and he would qualify for benefits. However, they do not include MGUS in their presumption criteria.
I'm also very concerned about his inability to fight infections. We run to the emergency room or doctor with every little thing now. If treatment would help him fight infections, that would be great. I almost lost him 2 years ago. Septic shock is scary. Every organ in his body was shutting down.
But I do understand that the treatment options aren't great. Many cause neuropathy and he certainly doesn't need to make that any worse! For now, we are going to wait until his March 2nd blood work and see how that looks. Then we'll decide if we want to get a second opinion
Re: Big increase in kappa-lambda ratio & IgG with MGUS
Well, March 2 is only a month away, so yes, your decision is good and makes sense.
The immune system is complex. He certainly does not have it at 100%, but my understanding is that the immune system really suffers even more during treatment for myeloma. Maybe it does get better after treatment is over though.
Stay strong!
The immune system is complex. He certainly does not have it at 100%, but my understanding is that the immune system really suffers even more during treatment for myeloma. Maybe it does get better after treatment is over though.
Stay strong!
-
Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Big increase in kappa-lambda ratio & IgG with MGUS
So, follow up happened last week. His doctor wrote in the chart that his MGUS has progressed to smoldering myeloma. His protein is now over 3 at 3.2. His hemoglobin is now 11.1 She has done several tests to see if the anemia has another cause and found nothing to explain it except multiple myeloma progression. She does not want to start any treatments yet, her reason being that treatment can have a lot of unpleasant side effects and the anemia is mild at this point.
Going to get him signed up for VA health benefits and schedule an appointment with them to see if they have a different viewpoint. He has a history of exposure to Agent Orange in Vietnam so should be able to qualify.
Although he was first diagnosed with MGUS years ago, this is a new doctor, as his other ones have either died or left the practice. He has only seen this one twice.
Going to get him signed up for VA health benefits and schedule an appointment with them to see if they have a different viewpoint. He has a history of exposure to Agent Orange in Vietnam so should be able to qualify.
Although he was first diagnosed with MGUS years ago, this is a new doctor, as his other ones have either died or left the practice. He has only seen this one twice.
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