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Does stage 1 multiple myeloma = smoldering myeloma?
Can someone please tell me the difference between smoldering multiple myeloma & stage 1 multiple myeloma. Is it the same thing? Thanks in advance.
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Does stage 1 multiple myeloma = smoldering myeloma?
There have been some people who have posted here in the forum indicating that their doctors (who were not myeloma specialists) have told them that stage 1 multiple myeloma and smoldering myeloma are basically the same thing. But I've never understood how someone could think that.
The distinction between smoldering myeloma and multiple myeloma is pretty clear. To be diagnosed with multiple myeloma, regardless of what stage it might be, you have to have at least one of the classic "CRAB" symptoms -- elevated Calcium levels, reduced Renal (kidney) function, Anemia, or Bone damage.
On the other hand, to be diagnosed with smoldering myeloma, you cannot have ANY of those symptoms.
So you really can't be both. Either you have smoldering myeloma, or you have multiple myeloma.
If you've been diagnosed with multiple myeloma, then there are two systems that have been used to determine what stage you are: the older Durie-Salmon system, and the more commonly used ISS system. They are explained in the Wikipedia article on multiple myeloma here:
http://en.wikipedia.org/wiki/Multiple_myeloma#Staging
The key thing is, though, that a doctor shouldn't be using the staging criteria for multiple myeloma for someone unless that person actually meets the diagnostic criteria for having multiple myeloma instead of smoldering myeloma. Those diagnostic criteria, recall, are also in the Wikipedia article:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Maybe I'm missing something and someone else can explain how you can have both smoldering myeloma and stage 1 (symptomatic) multiple myeloma. But I don't see it and can't explain why someone would say it's the case.
The distinction between smoldering myeloma and multiple myeloma is pretty clear. To be diagnosed with multiple myeloma, regardless of what stage it might be, you have to have at least one of the classic "CRAB" symptoms -- elevated Calcium levels, reduced Renal (kidney) function, Anemia, or Bone damage.
On the other hand, to be diagnosed with smoldering myeloma, you cannot have ANY of those symptoms.
So you really can't be both. Either you have smoldering myeloma, or you have multiple myeloma.
If you've been diagnosed with multiple myeloma, then there are two systems that have been used to determine what stage you are: the older Durie-Salmon system, and the more commonly used ISS system. They are explained in the Wikipedia article on multiple myeloma here:
http://en.wikipedia.org/wiki/Multiple_myeloma#Staging
The key thing is, though, that a doctor shouldn't be using the staging criteria for multiple myeloma for someone unless that person actually meets the diagnostic criteria for having multiple myeloma instead of smoldering myeloma. Those diagnostic criteria, recall, are also in the Wikipedia article:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Maybe I'm missing something and someone else can explain how you can have both smoldering myeloma and stage 1 (symptomatic) multiple myeloma. But I don't see it and can't explain why someone would say it's the case.
Re: Does stage 1 multiple myeloma = smoldering myeloma?
Lillyput189,
As Cheryl suggests, this depends on the staging system used and the vocabulary gets confusing.
Using the updated ISS staging system, stage 1 does not equal smoldering multiple myeloma since a patient must meet criteria for symptomatic multiple myeloma to be staged by the ISS.
On the other hand, if your doctor is using the Durie-Salmon staging system, it is possible to have Durie-Salmon stage I disease that is asymptomatic/smoldering.
The biggest distinction is whether or not you require therapy, which is determined by whether or not your disease is causing "end-organ" damage, typically defined by the CRAB criteria (high calcium levels, kidney problems, anemia/low red blood cell count, or bone disease). Yet, as our testing improves and we can predict who will become symptomatic better, these definitions will be changing ... stay tuned.
As Cheryl suggests, this depends on the staging system used and the vocabulary gets confusing.
Using the updated ISS staging system, stage 1 does not equal smoldering multiple myeloma since a patient must meet criteria for symptomatic multiple myeloma to be staged by the ISS.
On the other hand, if your doctor is using the Durie-Salmon staging system, it is possible to have Durie-Salmon stage I disease that is asymptomatic/smoldering.
The biggest distinction is whether or not you require therapy, which is determined by whether or not your disease is causing "end-organ" damage, typically defined by the CRAB criteria (high calcium levels, kidney problems, anemia/low red blood cell count, or bone disease). Yet, as our testing improves and we can predict who will become symptomatic better, these definitions will be changing ... stay tuned.
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Does stage 1 multiple myeloma = smoldering myeloma?
As Dr Landau pointed out in her July 3, 2014 posting, the most important distinction is whether your disease requires treatment. Under the old guidelines, smoldering myeloma was not considered to need treatment. Dr Landau concluded by saying, "these definitions will be changing." Indeed, subsequent to her posting, the IMWG issued new guidelines saying that *some* patients with smoldering myeloma should be treated, and they gave specific criteria. See this Beacon article from October 14:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Whether an insurance company will pay for treatment is an entirely separate matter. Whereas those decisions are generally made on the basis of diagnosis codes, providers are likely to submit the code that enables them to get paid for whatever treatment they have decided is appropriate.
While it is a good idea to pay attention to billing records and make sure that the diagnosis codes used are not unreasonable, this is no substitute for reading your actual medical record and discussing with doctors the reasoning that led to their decisions about your treatment.
Best wishes,
Larry
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Whether an insurance company will pay for treatment is an entirely separate matter. Whereas those decisions are generally made on the basis of diagnosis codes, providers are likely to submit the code that enables them to get paid for whatever treatment they have decided is appropriate.
While it is a good idea to pay attention to billing records and make sure that the diagnosis codes used are not unreasonable, this is no substitute for reading your actual medical record and discussing with doctors the reasoning that led to their decisions about your treatment.
Best wishes,
Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
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