Can someone tell me the difference between smoldering and asymptomatic myeloma?
yours Vicki
Forums
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Asymptomatic myeloma vs. smoldering myeloma?
Smoldering Myeloma = Asymptomatic Myeloma = Indolent Myeloma. At least, as far as I have ever read definition-wise.
Last edited by Multibilly on Sun Aug 24, 2014 10:49 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: Asymptomatic myeloma vs. smoldering myeloma?
I really wish someone could comment on this subject. If one has no symptoms, is it still smoldering, or could it be full blown multiple myeloma? It seems to be one of the $64,000 questions.
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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: Asymptomatic myeloma vs. smoldering myeloma?
Hi all, did you read this article:
"Multiple Myeloma Molecular Subtypes Are Already Present In MGUS And Smoldering Myeloma Patients," The Myeloma Beacon, February 19, 2014.
It seems that smoldering myeloma has been studied in regards to gene profiling. It seems to be tricky to know when and if SMM progresses to multiple myeloma. Not all patients do progress.
But what strikes me is how sophisticated the testing now can be, compared to only a few years previously. Whereas 'standard of care' only calls for skeletal survey X-rays, now many patients are getting MRIs for various reasons (such as for bone damage and fractures), and one's genome may be sequenced! So in my mind of course one's disease could be tracked from an earlier time than it was able to be tracked in previous times.
I doubt that helps to resolve any questions, but I do see it as a change in the capability of medical science to detect early stages of myeloma.
"Multiple Myeloma Molecular Subtypes Are Already Present In MGUS And Smoldering Myeloma Patients," The Myeloma Beacon, February 19, 2014.
It seems that smoldering myeloma has been studied in regards to gene profiling. It seems to be tricky to know when and if SMM progresses to multiple myeloma. Not all patients do progress.
But what strikes me is how sophisticated the testing now can be, compared to only a few years previously. Whereas 'standard of care' only calls for skeletal survey X-rays, now many patients are getting MRIs for various reasons (such as for bone damage and fractures), and one's genome may be sequenced! So in my mind of course one's disease could be tracked from an earlier time than it was able to be tracked in previous times.
I doubt that helps to resolve any questions, but I do see it as a change in the capability of medical science to detect early stages of myeloma.
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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: Asymptomatic myeloma vs. smoldering myeloma?
Multibilly is correct that asymptomatic multiple myeloma and smoldering myeloma are the same thing when you are referring to disease in a patient who has not yet progressed to multiple myeloma.
Indolent multiple myeloma is not quite the same thing, apparently, as smoldering myeloma or asymptomatic multiple myeloma. Dr. Rajkumar of the Mayo Clinic explained this in a posting here in the Beacon forum a few years ago:
"The term indolent myeloma is not recommended to be used. In the past it referred to patients with myeloma who had mild end organ damage. But we consider these patients as [having multiple] myeloma and treat them now."
Based on the widely accepted diagnostic criteria established by the International Myeloma Working Group (IMWG), you must be symptomatic to be classified as having multiple myeloma. In this case, however, "symptomatic" means something very specific. You have to have either elevated calcium levels, renal (kidney) damage, anemia, or bone lesions (the so-called CRAB criteria).
Now, it's possible to have one or more of these "symptoms", and to meet the other criteria for having multiple myeloma, and not necessarily "feel" like you have any symptoms. That is, you may feel that you're "asymptomatic". However, if you have any of the CRAB criteria, you are symptomatic - and therefore do have multiple myeloma - according to the diagnostic criteria.
The important thing to realize is that, even if you feel like you don't have any symptoms, if you've met the criteria for being diagnosed with multiple myeloma, it means that the disease is, in fact, doing damage to your body -- and most likely will continue to do so.
So you shouldn't feel that you're safe, and the disease isn't serious, if you've been diagnosed with multiple myeloma but don't currently actually feel like you have any symptoms.
The IMWG definitions of MGUS, smoldering myeloma, and multiple myeloma are described in this article,
Kyle and Rajkumar, "Criteria for diagnosis, staging, risk stratification and response assessment of multiple myeloma," Leukemia. Jan 2009; 23(1): 3–9,
and are also summarized in this table in the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627786/table/T2/
In addition, the definitions are nicely summarized in the "diagnostic criteria" section of the Wikipedia article about multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Indolent multiple myeloma is not quite the same thing, apparently, as smoldering myeloma or asymptomatic multiple myeloma. Dr. Rajkumar of the Mayo Clinic explained this in a posting here in the Beacon forum a few years ago:
"The term indolent myeloma is not recommended to be used. In the past it referred to patients with myeloma who had mild end organ damage. But we consider these patients as [having multiple] myeloma and treat them now."
Based on the widely accepted diagnostic criteria established by the International Myeloma Working Group (IMWG), you must be symptomatic to be classified as having multiple myeloma. In this case, however, "symptomatic" means something very specific. You have to have either elevated calcium levels, renal (kidney) damage, anemia, or bone lesions (the so-called CRAB criteria).
Now, it's possible to have one or more of these "symptoms", and to meet the other criteria for having multiple myeloma, and not necessarily "feel" like you have any symptoms. That is, you may feel that you're "asymptomatic". However, if you have any of the CRAB criteria, you are symptomatic - and therefore do have multiple myeloma - according to the diagnostic criteria.
The important thing to realize is that, even if you feel like you don't have any symptoms, if you've met the criteria for being diagnosed with multiple myeloma, it means that the disease is, in fact, doing damage to your body -- and most likely will continue to do so.
So you shouldn't feel that you're safe, and the disease isn't serious, if you've been diagnosed with multiple myeloma but don't currently actually feel like you have any symptoms.
The IMWG definitions of MGUS, smoldering myeloma, and multiple myeloma are described in this article,
Kyle and Rajkumar, "Criteria for diagnosis, staging, risk stratification and response assessment of multiple myeloma," Leukemia. Jan 2009; 23(1): 3–9,
and are also summarized in this table in the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627786/table/T2/
In addition, the definitions are nicely summarized in the "diagnostic criteria" section of the Wikipedia article about multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Asymptomatic myeloma vs. smoldering myeloma?
Boris,
Thanks for the clarification, including the definition of indolent myeloma ("indolent myeloma" is indeed a term I only tend to see in older articles on multiple myeloma, so I stand corrected).
Thanks for the clarification, including the definition of indolent myeloma ("indolent myeloma" is indeed a term I only tend to see in older articles on multiple myeloma, so I stand corrected).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Asymptomatic myeloma vs. smoldering myeloma?
Wow! The more I ask the more confused I get.
So here I am post SCT with no CRAB indicators, and never had any as far as I am aware. I am asymptomatic but do have chromosomal abnormalities which place me with high risk myeloma and my M-spike went down little after SCT. Which appears to clarify the high risk status and being refractory.
So by clinical definition I am / was smoldering pre-SCT. My only noticeable symptoms were repeated infections pneumonia, shingles, and pesky 24hr bugs. It seems from many posts this is common due to compromised immune system. So why is this not in the CRABcriteria? Curious.
Thanks for your replies Boris, Multi, and Nancy.
So I'm thinking I might belong to the indolent category. Ah well, we all have to belong to something. Lol
Take care all,
Vic
So here I am post SCT with no CRAB indicators, and never had any as far as I am aware. I am asymptomatic but do have chromosomal abnormalities which place me with high risk myeloma and my M-spike went down little after SCT. Which appears to clarify the high risk status and being refractory.
So by clinical definition I am / was smoldering pre-SCT. My only noticeable symptoms were repeated infections pneumonia, shingles, and pesky 24hr bugs. It seems from many posts this is common due to compromised immune system. So why is this not in the CRABcriteria? Curious.
Thanks for your replies Boris, Multi, and Nancy.
So I'm thinking I might belong to the indolent category. Ah well, we all have to belong to something. Lol
Take care all,
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Asymptomatic myeloma vs. smoldering myeloma?
Hi Vicki,
I was thinking you might add something along the lines of what you just wrote, but I didn't want to address it in my first response, as it already was quite long.
To the best of my knowledge, a physician would never apply a diagnosis of "smoldering myeloma" to a patient who has been previously diagnosed with multiple myeloma and has been treated for the multiple myeloma. Diagnoses of "smoldering myeloma" and "asymptomatic multiple myeloma" are only applied to people who have disease that has never progressed to multiple myeloma.
You may hear descriptions such as "smoldering-like disease" or "MGUS-like disease". But I don't think a physician would ever say to a patient "Now that your multiple myeloma has been treated, and given your test results, you now have smoldering myeloma."
Rather, the physician might say "Your disease is now in a smoldering-like state, given your bone marrow plasma cell percentage, your M-spike, and your lack of CRAB-symptoms."
Hope this clarifies things a bit.
I was thinking you might add something along the lines of what you just wrote, but I didn't want to address it in my first response, as it already was quite long.
To the best of my knowledge, a physician would never apply a diagnosis of "smoldering myeloma" to a patient who has been previously diagnosed with multiple myeloma and has been treated for the multiple myeloma. Diagnoses of "smoldering myeloma" and "asymptomatic multiple myeloma" are only applied to people who have disease that has never progressed to multiple myeloma.
You may hear descriptions such as "smoldering-like disease" or "MGUS-like disease". But I don't think a physician would ever say to a patient "Now that your multiple myeloma has been treated, and given your test results, you now have smoldering myeloma."
Rather, the physician might say "Your disease is now in a smoldering-like state, given your bone marrow plasma cell percentage, your M-spike, and your lack of CRAB-symptoms."
Hope this clarifies things a bit.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Asymptomatic myeloma vs. smoldering myeloma?
G'day Boris,
Thanks again for your reply. I am not trying to downgrade my diagnosis by any means. I have accepted my disease. I am just trying to understand the definitions and symptoms etc. As been said a thousand times, everyone is different as far as symptoms etc. are concerned.
Believe me I am grateful that I have been diagnosed so early in my disease, which hopefully gives me a better chance at longevity, because I don't have any major long-term damage. Hopefully early intervention will slow that down.
Also allow me to state that I am not questioning my treating doctors ... just trying to understand. At this point in time, I believe they have done well by me.
Thanks again,
Vicki
P.S I had not heard of smoldering or MGUS until I got on this site. So it was never used as a diagnosis for me.
Thanks again for your reply. I am not trying to downgrade my diagnosis by any means. I have accepted my disease. I am just trying to understand the definitions and symptoms etc. As been said a thousand times, everyone is different as far as symptoms etc. are concerned.
Believe me I am grateful that I have been diagnosed so early in my disease, which hopefully gives me a better chance at longevity, because I don't have any major long-term damage. Hopefully early intervention will slow that down.
Also allow me to state that I am not questioning my treating doctors ... just trying to understand. At this point in time, I believe they have done well by me.
Thanks again,
Vicki
P.S I had not heard of smoldering or MGUS until I got on this site. So it was never used as a diagnosis for me.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Asymptomatic myeloma vs. smoldering myeloma?
Vicki,
So, also be clear that several notable multiple myeloma specialists utilize the unofficial "CRAB-I" definition as a criteria to initiate treatment, where "I" = increasingly serious infections. It sounds like you might have met "I" prior to your treatment.
There is also a lot of debate going on right now about redefining the criteria for when to initiate treatment (i.e. expanding the definition beyond just CRAB). As an example, I could see how a person with an 85% plasma cell burden and high risk cytogenetics and deteriorating markers (but with no CRAB) might warrant treatment (note that I'm completely making up this example).
See point #1 by Dr. Rajkumar in the link below:
"Highlights Of The 2014 International Myeloma Working Group Annual Summit," The Myeloma Beacon, June 26, 2014 (column by Dr. Rajkumar).
Also, my understanding of disease classification is the same as Boris' (one of the doctors on the Beacon recently commented on this subject, but I'm not sure where the reference is). That is, a treated multiple myeloma patient doesn't get officially re-categorized into a smoldering state, even if all CRAB symptoms have been eliminated.
Lastly, it was my bad to bring up the "indolent myeloma" category (and I also got the definition wrong). The medical community is truly trying to drop that outdated term, so we should also avoid using it.
So, also be clear that several notable multiple myeloma specialists utilize the unofficial "CRAB-I" definition as a criteria to initiate treatment, where "I" = increasingly serious infections. It sounds like you might have met "I" prior to your treatment.
There is also a lot of debate going on right now about redefining the criteria for when to initiate treatment (i.e. expanding the definition beyond just CRAB). As an example, I could see how a person with an 85% plasma cell burden and high risk cytogenetics and deteriorating markers (but with no CRAB) might warrant treatment (note that I'm completely making up this example).
See point #1 by Dr. Rajkumar in the link below:
"Highlights Of The 2014 International Myeloma Working Group Annual Summit," The Myeloma Beacon, June 26, 2014 (column by Dr. Rajkumar).
Also, my understanding of disease classification is the same as Boris' (one of the doctors on the Beacon recently commented on this subject, but I'm not sure where the reference is). That is, a treated multiple myeloma patient doesn't get officially re-categorized into a smoldering state, even if all CRAB symptoms have been eliminated.
Lastly, it was my bad to bring up the "indolent myeloma" category (and I also got the definition wrong). The medical community is truly trying to drop that outdated term, so we should also avoid using it.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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