I am considered smoldering since November 2014; my MBI was 35%, my latest bloodwork shows IgA @ 1811, IgM @ 9 and IgG @ 255. The free light chains: kappa <0.05, lambda 28.49, and kappa-lambda ratio < 0.00. I don't understand anything duh?
I keep reading about the new criteria, but I don't think I fall into this, correct?
Presently I take my own protocol of 8 gm of curcumin, vitamin D, C, B12, flaxseed oil, selenium.
Any thoughts?
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9 posts
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skolman - Name: susan kolman
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 55
Re: Is my smoldering multiple myeloma diagnosis correct?
Susan,
What were the units of measure for the free light chain values? Were they mg/L?
What were the units of measure for the free light chain values? Were they mg/L?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is my smoldering multiple myeloma diagnosis correct?
Thank you Multibilly for asking and helping. I am new to this. The free light chains are measured in mg/dl.
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skolman - Name: susan kolman
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 55
Re: Is my smoldering multiple myeloma diagnosis correct?
We are talking "serum" free light chains here, right?
< NOTE: I edited my response below after I had first posted this part of my response. I had mistakenly swapped the kappa and lambda values around when I first posted. The rest of my posting is correct. Multibilly >
If your serum free light chain values are indeed reported in mg/dL and are from the standard serum free light chain assay, then:
Kappa: 3.3 - 19.4 mg/L (0.33 - 1.94 mg/dL)
Lambda: 5.71 - 26.3 mg/L (0.571 - 2.63 mg/dL)
Kappa/lambda ratio: 0.26 - 1.65
Technically, just these free light chain values meet the definition of a "myeloma defining event" (MDE) as outlined here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
In particular, this "myeloma defining evening":
"Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free light chain is at least 100 mg/L (a patient’s “involved” free light chain – either kappa or lambda – is the one that is above the normal reference range; the uninvolved light chain is the one that typically is in, or below, the normal range)."
I would suggest following up with your doc, who I am going to guess might suggest re-testing you? Are you already working with a multiple myeloma specialist?
Lastly, remember Dr. Rajkumar's comments in the above link:
"... no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests"
< NOTE: I edited my response below after I had first posted this part of my response. I had mistakenly swapped the kappa and lambda values around when I first posted. The rest of my posting is correct. Multibilly >
If your serum free light chain values are indeed reported in mg/dL and are from the standard serum free light chain assay, then:
- A lambda value of 28.49 mg/dL = 284.9 mg/L, which is quite high.
- A kappa value of 0.05 mg/dL = 0.5 mg/L (or less, since your results said less than 0.05 mg/dL), which is quite low. (I'm not sure why your kappa is so low, but it might be due to bone marrow suppression?)
- And you have an involved/uninvolved free light chain ratio (lambda/kappa) of at least 570, which is also high.
Kappa: 3.3 - 19.4 mg/L (0.33 - 1.94 mg/dL)
Lambda: 5.71 - 26.3 mg/L (0.571 - 2.63 mg/dL)
Kappa/lambda ratio: 0.26 - 1.65
Technically, just these free light chain values meet the definition of a "myeloma defining event" (MDE) as outlined here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
In particular, this "myeloma defining evening":
"Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free light chain is at least 100 mg/L (a patient’s “involved” free light chain – either kappa or lambda – is the one that is above the normal reference range; the uninvolved light chain is the one that typically is in, or below, the normal range)."
I would suggest following up with your doc, who I am going to guess might suggest re-testing you? Are you already working with a multiple myeloma specialist?
Lastly, remember Dr. Rajkumar's comments in the above link:
"... no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests"
Last edited by Multibilly on Mon Feb 02, 2015 8:39 pm, edited 2 times 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: Is my smoldering multiple myeloma diagnosis correct?
Thanks again, Multibilly, but I think there is some confusion. It is my lambda that is 28.49 and my kappa that is <0.05, making my ratio <0.00. Does this change your interpretation?
I am being seen at Sloan Kettering. They have not repeated my bone marrow biopsy that was 35% from November of 2013. I also have chromosomal abnormalities, the 17p one.
I did have a PET scan in November 2013 and that was negative, so that was good. I just had a MRI of my spine and neck since I have a lot of back and neck pain, but turns out that this is due to arthritis and herniated discs.
I am being seen at Sloan Kettering. They have not repeated my bone marrow biopsy that was 35% from November of 2013. I also have chromosomal abnormalities, the 17p one.
I did have a PET scan in November 2013 and that was negative, so that was good. I just had a MRI of my spine and neck since I have a lot of back and neck pain, but turns out that this is due to arthritis and herniated discs.
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skolman - Name: susan kolman
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 55
Re: Is my smoldering multiple myeloma diagnosis correct?
Hi Susan,
The free light chain ratio that is reported in one's lab report is always kappa / lambda. In your case, this is the uninvolved / involved ratio since your "involved" free light chain is your Lambda free light chain (the bigger one). So, in your case, you need to take the inverse of the ratio reported in your lab to get to the involved / uninvolved ratio. That is, you need to divide 28.49/0.05 (lambda / kappa) to get to the involved / uninvolved ratio of 570 (569.8) that I refer to. This is a very common mistake and confuses patients that are new to multiple myeloma.
The folks at Sloan Kettering are top notch and are very familiar with the new diagnostic criteria. So, it would be good to take a deeper dive with them regarding these free light chain numbers when you see them next.
The free light chain ratio that is reported in one's lab report is always kappa / lambda. In your case, this is the uninvolved / involved ratio since your "involved" free light chain is your Lambda free light chain (the bigger one). So, in your case, you need to take the inverse of the ratio reported in your lab to get to the involved / uninvolved ratio. That is, you need to divide 28.49/0.05 (lambda / kappa) to get to the involved / uninvolved ratio of 570 (569.8) that I refer to. This is a very common mistake and confuses patients that are new to multiple myeloma.
The folks at Sloan Kettering are top notch and are very familiar with the new diagnostic criteria. So, it would be good to take a deeper dive with them regarding these free light chain numbers when you see them next.
Last edited by Multibilly on Mon Feb 02, 2015 8:36 pm, 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: Is my smoldering multiple myeloma diagnosis correct?
Dear Susan,
Multibilly, in usual fashion, is spot on. Your serum free light chain ratio meets criteria for a myeloma-defining event. And, yes, Sloan is top notch and their physicians well familiar with the new criteria.
It may be that your light chain measures in 2013 were very similar to where they are now? Regardless, it would be a good idea to touch base with your physician and get their thoughts about your light chain parameters in light of the new criteria. As pointed out, the guidelines are just that - guidelines. They are not gospel. They represent a wonderful framework from which to work, but clinical judgment always rules the day!
Thanks!
Pete V.
Multibilly, in usual fashion, is spot on. Your serum free light chain ratio meets criteria for a myeloma-defining event. And, yes, Sloan is top notch and their physicians well familiar with the new criteria.
It may be that your light chain measures in 2013 were very similar to where they are now? Regardless, it would be a good idea to touch base with your physician and get their thoughts about your light chain parameters in light of the new criteria. As pointed out, the guidelines are just that - guidelines. They are not gospel. They represent a wonderful framework from which to work, but clinical judgment always rules the day!
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Is my smoldering multiple myeloma diagnosis correct?
Susan,
Note that, in one of my earlier posts in this thread that may have confused you, I inadvertently swapped the kappa and lambda values around in part of my response. I have corrected the post and included a note that it has been changed.
Note that, in one of my earlier posts in this thread that may have confused you, I inadvertently swapped the kappa and lambda values around in part of my response. I have corrected the post and included a note that it has been changed.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is my smoldering multiple myeloma diagnosis correct?
Thank you, Dr. Voorhees and Multibilly, again for your clarifications.
It is true that my numbers are similar in 2014 as they were in 2013, which is why I guess my doctor – who I think is wonderful – is doing the watch-and-wait routine. Hopefully, my numbers won't change much and I will continue smoldering. I go back for blood work again in March.
My lambda goes up and down. When I first started taking curcumin, it dropped from 1918 to 1742, then 1619, but has been on the upswing again: In September 2014 to 1780, and then in December 2014 to 1811.
I have no CRAB symptoms, thank goodness, so I guess I am pretty "stable"? My free light chains are pretty much between 28.49 - 39.44 and kappa from 0.05 - 0.00.
It is true that my numbers are similar in 2014 as they were in 2013, which is why I guess my doctor – who I think is wonderful – is doing the watch-and-wait routine. Hopefully, my numbers won't change much and I will continue smoldering. I go back for blood work again in March.
My lambda goes up and down. When I first started taking curcumin, it dropped from 1918 to 1742, then 1619, but has been on the upswing again: In September 2014 to 1780, and then in December 2014 to 1811.
I have no CRAB symptoms, thank goodness, so I guess I am pretty "stable"? My free light chains are pretty much between 28.49 - 39.44 and kappa from 0.05 - 0.00.
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skolman - Name: susan kolman
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 55
9 posts
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