Could someone please explain some of the new guidelines for multiple myeloma? I know the CRAB symptoms have been eliminated, but I don't know about the plasma cell count & the bone involvement.
Thank you so much.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: New multiple myeloma diagnosis guidelines
My interpretation is that the CRAB feateres have not been eliminated. A new broader definition has been added to CRAB so that some patients that previously fell into the smoldering myeloma category and did not receive treatment will now be classified as active multiple myeloma and thus treatable.
So IMWG defines active multiple myeloma as patients with any of the CRAB features plus any patient having one of the 3 "myeloma defining events" (MDEs). The MDEs are looked at independent of CRAB but do not negate a multiple myeloma diagnosis that was based on CRAB.
Ron H
So IMWG defines active multiple myeloma as patients with any of the CRAB features plus any patient having one of the 3 "myeloma defining events" (MDEs). The MDEs are looked at independent of CRAB but do not negate a multiple myeloma diagnosis that was based on CRAB.
Ron H
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: New multiple myeloma diagnosis guidelines
With respect to the serum numbers the new standard focuses on the sFLC assay.
The normal serum free light chain levels and ratios:
kappa free light chain - 3.30 mg/L - 19.4 mg/L
lambda free light chain - 5.71 mg/L - 26.30 mg/L
kappa / lambda ratio - 0.26 - 1.65
If the serum free light chain assay test results in a ratio of 100 or greater, plus the "involved" light chain is 100 mg/L or greater, then such a reading would constitute an MDE - active multiple myeloma.
Thus, for example, if an individual had a kappa reading of 200 and lambda reading of 2 with a ratio of 100, such readings would constitute an MDE and thus active multiple myeloma under the new guidelines.
If, on the other hand, the individual had a kappa reading of 200 but a lambda reading of 4, the resulting ratio would be 50 and thus not an MDE. Therefore, unless another MDE is determined or a CRAB feature is evident, the individual would not have active multiple myeloma.
Ron
The normal serum free light chain levels and ratios:
kappa free light chain - 3.30 mg/L - 19.4 mg/L
lambda free light chain - 5.71 mg/L - 26.30 mg/L
kappa / lambda ratio - 0.26 - 1.65
If the serum free light chain assay test results in a ratio of 100 or greater, plus the "involved" light chain is 100 mg/L or greater, then such a reading would constitute an MDE - active multiple myeloma.
Thus, for example, if an individual had a kappa reading of 200 and lambda reading of 2 with a ratio of 100, such readings would constitute an MDE and thus active multiple myeloma under the new guidelines.
If, on the other hand, the individual had a kappa reading of 200 but a lambda reading of 4, the resulting ratio would be 50 and thus not an MDE. Therefore, unless another MDE is determined or a CRAB feature is evident, the individual would not have active multiple myeloma.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: New multiple myeloma diagnosis guidelines
What Ron says is correct. The CRAB criteria have not been eliminated. There have just been the additional criteria created which, if at least one is present, changes the diagnosis from smoldering multiple myeloma to (active) multiple myeloma.
Technically, each of the CRAB criteria, plus the three additional criteria, are considered myeloma defining events (MDE), since the presence of any of them switches the diagnosis to multiple myeloma.
The CRAB criteria are different MDEs, however, from the other three (new) MDEs, in that they indicate end organ damage has occurred. The new MDEs are signs that the disease is malignant, but may not yet have caused end organ damage.
Technically, each of the CRAB criteria, plus the three additional criteria, are considered myeloma defining events (MDE), since the presence of any of them switches the diagnosis to multiple myeloma.
The CRAB criteria are different MDEs, however, from the other three (new) MDEs, in that they indicate end organ damage has occurred. The new MDEs are signs that the disease is malignant, but may not yet have caused end organ damage.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: New multiple myeloma diagnosis guidelines
BTW, I think folks may have forgotten to reference this article ... which I just found as I was trying to figure out what the three new new MDEs are 
S. Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
S. Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
The revised IMWG criteria will allow, in addition to the classic CRAB features, the following three markers as “myeloma defining events” (MDEs).
- Sixty percent or greater clonal plasma cells on bone marrow examination
- 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)
- More than one focal lesion on MRI that is at least 5 millimeters or greater in size."
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New multiple myeloma diagnosis guidelines
So from my understanding, these new criteria have changed my diagnosis from smoldering to active multiple myeloma. So last week I would have told you that I was anxious to be able to "do something", get into a study, start some sort of treatment. But now I am anxious about starting down this path.
I have a scheduled follow-up appointment at Dana Farber next week. I am anxious to hear what my treatment options might be, possible side effects, etc.
I have a scheduled follow-up appointment at Dana Farber next week. I am anxious to hear what my treatment options might be, possible side effects, etc.
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heatherlib - Name: heather
- Who do you know with myeloma?: self
- When were you/they diagnosed?: may 2014
- Age at diagnosis: 52
Re: New multiple myeloma diagnosis guidelines
Hi Heather,
I'm sorry the new guidelines may mean a change in your diagnosis. Obviously, it will be helpful to get some opinions and insights from the doctors at Dana Farber.
Which part of the guidelines changed your diagnosis?
Best of luck to you.
I'm sorry the new guidelines may mean a change in your diagnosis. Obviously, it will be helpful to get some opinions and insights from the doctors at Dana Farber.
Which part of the guidelines changed your diagnosis?
Best of luck to you.
Re: New multiple myeloma diagnosis guidelines
If these new guidelines had been in effect in 2008, I would have been diagnosed with active myeloma instead of smoldering. I might have avoided developing a pathologic fracture of my left arm by starting treatment sooner. Instead, I started treatment after the fracture because I was then labeled as active myeloma.
Oh, well. I am doing well now and hope to continue to do well with the treatment that I am receiving.
Nancy in Phila
Oh, well. I am doing well now and hope to continue to do well with the treatment that I am receiving.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: New multiple myeloma diagnosis guidelines
Nancy,
Your case highlights a very important point. I am sorry to hear that you suffered from a pathologic fracture prior to initiation of therapy for your myeloma.
The changes that have been proposed in the new criteria for initiation of therapy are based predominantly on research work conducted after 2008.
We sincerely hope that, going forward, these changes in the definition of active myeloma are able to prevent unfortunate events like the one you experienced, and that we continue to learn from our patients everyday.
I wish you all the best.
Prashant Kapoor
Your case highlights a very important point. I am sorry to hear that you suffered from a pathologic fracture prior to initiation of therapy for your myeloma.
The changes that have been proposed in the new criteria for initiation of therapy are based predominantly on research work conducted after 2008.
We sincerely hope that, going forward, these changes in the definition of active myeloma are able to prevent unfortunate events like the one you experienced, and that we continue to learn from our patients everyday.
I wish you all the best.
Prashant Kapoor
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: New multiple myeloma diagnosis guidelines
Cheryl, it is the free light chain ratio (mine is over 800 with my involved free light chain over 1000). I am being told that first line treatment standard at Dana Farber is Revlimid / Velcade / dexamethasone.
When I was just smoldering, I was anxious to "do" something, but now that there is something that will need to be done I am anxious about doing something ...
When I was just smoldering, I was anxious to "do" something, but now that there is something that will need to be done I am anxious about doing something ...
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heatherlib - Name: heather
- Who do you know with myeloma?: self
- When were you/they diagnosed?: may 2014
- Age at diagnosis: 52
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