Since my nephew began treatment 2 years ago for his multiple myeloma, his M-spike has not been reported. He has completed 2 stem cell transplants (tandem), yet they have never reported the M-spike as part of his testing (SPEP and immunofixation). This makes it difficult to assess whether he may be experiencing a relapse. His IgG values have risen sharply, from 850 to 1500 in 3 months, and the doctor appears uncertain as to whether there is a relapse.
The initial lab where the multiple myeloma diagnosis was made 2 years ago reported an M-spike of 6.8, but since he started treatment at his current facility, they have refused to report the M-spike, saying it migrates and is unreliable. We are confused and worried.
Is this something that happens a lot? How does one assess if there's been a relapse without the M-spike?
Thanks
Forums
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HopeNFaith - Name: Faith
- Who do you know with myeloma?: Nephew
- When were you/they diagnosed?: 2015
- Age at diagnosis: 51
Re: M-spike not being reported - is that common?
Hi Faith,
I don't recall ever hearing of a situation like yours (at least for the reasons you've cited here). Sure, there are times when a lab report will state that an M-spike result may be questionable and M-spikes can sometimes migrate around from region to region (beta region, gamma region, etc), but the pathologist or technician that is the running the test will usually annotate the original lab report with any concerns. By the way, that's why it's important to look at the original, complete lab reports for serum protein electrophoresis (SPEP) tests and immunofixation tests, rather than just summary values on a patient portal. It's also important to look at the serum immunofixation results to be sure that only only one M-spike is being detected.
Now having said this, the first thing I would do is to look at the lab report itself and determine where the labwork was actually done. More often than not, various facilities in the USA will send things like SPEP tests out to either Labcorp or Quest Diagnostics for processing, although they may be set up to do the test internally. In any case, the lab report should clearly tell you where the labwork was done.
Depending on where the labwork was processed, I would then suggest simply getting a prescription for an SPEP and serum immunofixation test from your doctor and then just go to a different, local, lab group such as Labcorp or Quest Diagnostics in your town to get the lab work done. This is in fact what I do, and my insurance covers it. You can easily find a local lab draw site by just going to those companies' websites.
As an aside, how are your nephew's serum free light chain values doing? That may give you another clue as to whether he is starting to experience a clinical relapse. A 24-hour UPEP can also provide additional clues.
Lastly, whenever you report a lab value like an M-spike, please be sure to include the units of measure. We don't know if we are talking about an earlier M-spike of 6.8 g/dL or 6.8 g/L (0.68 g/dL). The difference between those two figures is huge.
I don't recall ever hearing of a situation like yours (at least for the reasons you've cited here). Sure, there are times when a lab report will state that an M-spike result may be questionable and M-spikes can sometimes migrate around from region to region (beta region, gamma region, etc), but the pathologist or technician that is the running the test will usually annotate the original lab report with any concerns. By the way, that's why it's important to look at the original, complete lab reports for serum protein electrophoresis (SPEP) tests and immunofixation tests, rather than just summary values on a patient portal. It's also important to look at the serum immunofixation results to be sure that only only one M-spike is being detected.
Now having said this, the first thing I would do is to look at the lab report itself and determine where the labwork was actually done. More often than not, various facilities in the USA will send things like SPEP tests out to either Labcorp or Quest Diagnostics for processing, although they may be set up to do the test internally. In any case, the lab report should clearly tell you where the labwork was done.
Depending on where the labwork was processed, I would then suggest simply getting a prescription for an SPEP and serum immunofixation test from your doctor and then just go to a different, local, lab group such as Labcorp or Quest Diagnostics in your town to get the lab work done. This is in fact what I do, and my insurance covers it. You can easily find a local lab draw site by just going to those companies' websites.
As an aside, how are your nephew's serum free light chain values doing? That may give you another clue as to whether he is starting to experience a clinical relapse. A 24-hour UPEP can also provide additional clues.
Lastly, whenever you report a lab value like an M-spike, please be sure to include the units of measure. We don't know if we are talking about an earlier M-spike of 6.8 g/dL or 6.8 g/L (0.68 g/dL). The difference between those two figures is huge.
Last edited by Multibilly on Thu Oct 05, 2017 9:29 am, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike not being reported - is that common?
HI Faith,
On my lab results (and I live in Canada), the M-spike is recorded on the lab results as 'Monoclonal #1". If my blood work was showing more than one spike, they would be numbered also. My results are in grams / litre, i.e. g/l. At any time when the M-spike has been too low to quantify, that is stated also.
The M-spike is a blood marker for myeloma, smoldering multiple myeloma, and even MGUS, so it should be reported. Of course, not every patient has one, and in that case serum free light chains and their ratio (kappa and lambda light chains released from the mutant plasma cells) are used. If the patient is truly nonsecretory, then I think that other tests such as bone marrow biopsies and PET scans are the only way to track the myeloma.
The patient, your nephew, has the right to look at his own lab results! Hope that helps.
On my lab results (and I live in Canada), the M-spike is recorded on the lab results as 'Monoclonal #1". If my blood work was showing more than one spike, they would be numbered also. My results are in grams / litre, i.e. g/l. At any time when the M-spike has been too low to quantify, that is stated also.
The M-spike is a blood marker for myeloma, smoldering multiple myeloma, and even MGUS, so it should be reported. Of course, not every patient has one, and in that case serum free light chains and their ratio (kappa and lambda light chains released from the mutant plasma cells) are used. If the patient is truly nonsecretory, then I think that other tests such as bone marrow biopsies and PET scans are the only way to track the myeloma.
The patient, your nephew, has the right to look at his own lab results! Hope that helps.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: M-spike not being reported - is that common?
Nancy Shamanna wrote:
Kappa and lambda free light chains are produced by both normal and monoclonal plasma cells. It's incorrect to suggest that only monoclonal ("mutant") plasma cells produce free light chains.
Moreover, the kappa and lambda levels reported by the serum free light chain test are the level of free kappa and free lambda light chains of both types, not just monoclonal light chains. That's why the normal (reference) range for the kappa and lambda test results is nonzero. Even perfectly healthy people will have positive levels of kappa and lambda free light chains, as measured by the serum free light chain test.
The story is a bit different when it comes to the Bence-Jones proteins found in urine samples. Those are monoclonal light chains in most cases.
Of course, not every patient has one, and in that case serum free light chains and their ratio (kappa and lambda light chains released from the mutant plasma cells) are used
Kappa and lambda free light chains are produced by both normal and monoclonal plasma cells. It's incorrect to suggest that only monoclonal ("mutant") plasma cells produce free light chains.
Moreover, the kappa and lambda levels reported by the serum free light chain test are the level of free kappa and free lambda light chains of both types, not just monoclonal light chains. That's why the normal (reference) range for the kappa and lambda test results is nonzero. Even perfectly healthy people will have positive levels of kappa and lambda free light chains, as measured by the serum free light chain test.
The story is a bit different when it comes to the Bence-Jones proteins found in urine samples. Those are monoclonal light chains in most cases.
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JimNY
Re: M-spike not being reported - is that common?
Yes Jim, you are correct. I am sure that most patients have both monoclonal proteins and serum free light chains tested. There is a normal range for kappa and lambda light chains, which are spun off from the cell wall of the plasma cells, whether they be normal plasma cells or malignant ones. There is not a 'normal' range for the monoclonal proteins, since they represent an excess of antibody protein in the blood, and are specific immunoglobulins too. On my lab sheet the normal ranges for kappa, lambda, and the ratios are:
Kappa serum free light chain: 3,3 - 19.40 mg/l
Lambda serum free light chain: 5.71 - 26.30 mg/l
Kappa-lambda serum free light chain ratio: 0.26- 1.65
Even though the units of measurement may differ between Canada and the U.S., the ratio should be the same. Do you find that to be so? Also, I am not a doctor, and hope that what I am expressing here is completely correct.
Kappa serum free light chain: 3,3 - 19.40 mg/l
Lambda serum free light chain: 5.71 - 26.30 mg/l
Kappa-lambda serum free light chain ratio: 0.26- 1.65
Even though the units of measurement may differ between Canada and the U.S., the ratio should be the same. Do you find that to be so? Also, I am not a doctor, and hope that what I am expressing here is completely correct.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: M-spike not being reported - is that common?
Thank you Multibilly, Nancy, and Jim. Your perspectives and others shared on this site are always of great value to us!
First, sorry, I should have indicated that the 6.8 M-spike was in g/dl, which was treated with Revlimid, Velcade, and dexamethasone induction followed by 2 autologous transplants 6 months apart, with a very good partial response (VGPR).
Multibilly - we have done just what you suggest and have insisted on a prescription, which my nephew takes to Labcorb intermittently to track his progress. Also Nancy - you are right. My nephew got a second opinion from another hospital in the area earlier in his treatment and they assessed and reported his M-Spike without any problem or concern. Unfortunately, those numbers and those from Labcorp have been disregarded by the treating facility until a couple of weeks ago, when the Labcorp measurement of an M-spike of 0.8 g/dl, which had risen from a 0.2 in July, seemed to raise an alarm. The doctor now thinks my nephew may be in relapse, but since they do not seem to trust the M-spike, they want a bone marrow biopsy and PET to confirm.
Recent free light chain values are as follows:
Date K/L Kappa Lambda
May 01 1.07 0.78 0.73
May 24 0.97 0.83 0.86
Jun 19 1.02 0.86 0.84
Jul 19 1.01 0.98 0.97
Aug 21 0.99 0.97 0.98
Sep 20 0.87 1.06 1.22
Oct 02 0.87 0.98 1.12
(All dates are 2017. Kappa and lambda units are mg/dL.)
Total kappa (involved) light chains have increased sharply in the last 3 months: July (157); August (241); Sept (323) and 2 weeks later it is 393 mg/dL.
The consideration is to put him on monthly Velcade and dex plus 25 mg Revlimid (21 day cycle), the same drugs used during his induction therapy. I am confused and have pressed my nephew to seek another opinion, perhaps in the Chicago area.
(Moderator's Note: See the following forum thread for suggestions related to Chicago-area multiple myeloma specialists: "Multiple myeloma specialist in the Chicagoland area?".)
First, sorry, I should have indicated that the 6.8 M-spike was in g/dl, which was treated with Revlimid, Velcade, and dexamethasone induction followed by 2 autologous transplants 6 months apart, with a very good partial response (VGPR).
Multibilly - we have done just what you suggest and have insisted on a prescription, which my nephew takes to Labcorb intermittently to track his progress. Also Nancy - you are right. My nephew got a second opinion from another hospital in the area earlier in his treatment and they assessed and reported his M-Spike without any problem or concern. Unfortunately, those numbers and those from Labcorp have been disregarded by the treating facility until a couple of weeks ago, when the Labcorp measurement of an M-spike of 0.8 g/dl, which had risen from a 0.2 in July, seemed to raise an alarm. The doctor now thinks my nephew may be in relapse, but since they do not seem to trust the M-spike, they want a bone marrow biopsy and PET to confirm.
Recent free light chain values are as follows:
Date K/L Kappa Lambda
May 01 1.07 0.78 0.73
May 24 0.97 0.83 0.86
Jun 19 1.02 0.86 0.84
Jul 19 1.01 0.98 0.97
Aug 21 0.99 0.97 0.98
Sep 20 0.87 1.06 1.22
Oct 02 0.87 0.98 1.12
(All dates are 2017. Kappa and lambda units are mg/dL.)
Total kappa (involved) light chains have increased sharply in the last 3 months: July (157); August (241); Sept (323) and 2 weeks later it is 393 mg/dL.
The consideration is to put him on monthly Velcade and dex plus 25 mg Revlimid (21 day cycle), the same drugs used during his induction therapy. I am confused and have pressed my nephew to seek another opinion, perhaps in the Chicago area.
(Moderator's Note: See the following forum thread for suggestions related to Chicago-area multiple myeloma specialists: "Multiple myeloma specialist in the Chicagoland area?".)
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HopeNFaith - Name: Faith
- Who do you know with myeloma?: Nephew
- When were you/they diagnosed?: 2015
- Age at diagnosis: 51
Re: M-spike not being reported - is that common?
Hey Faith,
First off, the doctors idea of doing a follow-up bone marrow biopsys and PET/CT seems like a prudent idea under the circumstances.
Secondly, the changes in his serum free light chain numbers don't seem all that concerning to me. In fact, all the free light chain values look like they are within the normal ranges and are holding pretty steady. Total light chain values (as opposed to free light chain values) aren't normally used to track myeloma, so I'm not sure that your should worry too much about the total light chain numbers if the serum free light chain numbers are looking good. But that would be a good thing to double-check with the oncologist.
A second opinion is always a good idea, but it doesn't strike me as being overly aggressive to put him on Revlimid and dex maintenance if he is starting to head into a relapse (you will obviously know more after a fresh bone marrow biopsy and PET/CT). But this is also a situation where the experience of the oncologist and his ability to interpret the overall picture of your nephew's situation is key. Also, be clear that I've never undergone treatment, so I would defer to others on this forum with first-hand experience in this kind of situation.
First off, the doctors idea of doing a follow-up bone marrow biopsys and PET/CT seems like a prudent idea under the circumstances.
Secondly, the changes in his serum free light chain numbers don't seem all that concerning to me. In fact, all the free light chain values look like they are within the normal ranges and are holding pretty steady. Total light chain values (as opposed to free light chain values) aren't normally used to track myeloma, so I'm not sure that your should worry too much about the total light chain numbers if the serum free light chain numbers are looking good. But that would be a good thing to double-check with the oncologist.
A second opinion is always a good idea, but it doesn't strike me as being overly aggressive to put him on Revlimid and dex maintenance if he is starting to head into a relapse (you will obviously know more after a fresh bone marrow biopsy and PET/CT). But this is also a situation where the experience of the oncologist and his ability to interpret the overall picture of your nephew's situation is key. Also, be clear that I've never undergone treatment, so I would defer to others on this forum with first-hand experience in this kind of situation.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike not being reported - is that common?
Hello again HopeNFaith,
Thanks for your kind words...I think i just muddle along but am a 'life long learner' when it comes to myeloma!
If your nephew, after induction therapy and two transplants, is relapsing then probably he would be staged with the bone marrow biopsy and possibly PET scan before starting treatment again. He could then be tested for chromosomal abnormalities, which apparently can shift and change during a myeloma patient's time. A myeloma specialist can decide as to what is the best treatment to use for different types of high-risk patients, if that turns out to be the case.
For myself, I am currently in remission but my blood is monitored regularly. I have been told that if my M-spike went up to about 5 g/l (0.5 g/dl), that could be considered to be a relapse. For my first relapse, at 11 g/l (1.1 g/dL), I was treated at that point. (I let the myeloma counts ride up over a summer so I could enjoy one of my daughter's wedding!) I have low-risk myeloma it seems.
Good luck with everything.
Thanks for your kind words...I think i just muddle along but am a 'life long learner' when it comes to myeloma!
If your nephew, after induction therapy and two transplants, is relapsing then probably he would be staged with the bone marrow biopsy and possibly PET scan before starting treatment again. He could then be tested for chromosomal abnormalities, which apparently can shift and change during a myeloma patient's time. A myeloma specialist can decide as to what is the best treatment to use for different types of high-risk patients, if that turns out to be the case.
For myself, I am currently in remission but my blood is monitored regularly. I have been told that if my M-spike went up to about 5 g/l (0.5 g/dl), that could be considered to be a relapse. For my first relapse, at 11 g/l (1.1 g/dL), I was treated at that point. (I let the myeloma counts ride up over a summer so I could enjoy one of my daughter's wedding!) I have low-risk myeloma it seems.
Good luck with everything.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: M-spike not being reported - is that common?
I don't know if what I'm saying will help or not, but I have never had M proteins, so no M-spike either, although they have always monitored them. When diagnosed, I had a plasmacytoma, my kappa light chains were high, and I had lots of bone lytic lesions, so I had induction treatment and an auto stem cell transplant last year. I started maintenance therapy post transplant, but had a lot of side effects from it, even at lower doses, and so quit taking it in June (against my doctor's wishes). Anyway, suddenly I am now showing M proteins, although in amounts "too small to quantify," per the lab, so we're not sure how worried to be about it. Kappa light chains are still normal. So, my doctor had me do a PET scan (which was OK), and is having me do more myeloma labs and another bone marrow aspiration soon.
So I feel like you are doing the right things, but it makes no sense to me for a lab / doctor / cancer center not to follow M proteins. I really don't get that. I would get copies of my records. It's easy to do, you just fill out a form and eventually get them. It is your right.
I wish your family all the best.
So I feel like you are doing the right things, but it makes no sense to me for a lab / doctor / cancer center not to follow M proteins. I really don't get that. I would get copies of my records. It's easy to do, you just fill out a form and eventually get them. It is your right.
I wish your family all the best.
Re: M-spike not being reported - is that common?
Thanks again, Multibilly and Nancy. Your perspectives are very much appreciated.
The bone marrow biopsy, PET-CT and second opinion are all scheduled. Will provide an update when all findings come in.
Faith
The bone marrow biopsy, PET-CT and second opinion are all scheduled. Will provide an update when all findings come in.
Faith
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HopeNFaith - Name: Faith
- Who do you know with myeloma?: Nephew
- When were you/they diagnosed?: 2015
- Age at diagnosis: 51
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