Regarding the standard statistics for risk of progression from smoldering multiple myeloma to active (symptomatic) multiple myeloma (10% each year for the first 5 years after diagnosis, following by 3%, etc), does anybody know how these statistics take into account how many years a person already had smoldering myeloma in the past?
For example, one person could have been diagnosed with smoldering myeloma after 10 years with this condition, while another may have had the disease for only a year before diagnosis.
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Anna721 - Name: Anna
- Who do you know with myeloma?: I
- When were you/they diagnosed?: Nov, 2017
- Age at diagnosis: 40
Re: Progression risk & time smoldering prior to diagnosis
Hi Anna,
How would anybody know if they had smoldering myeloma for any specific period of time before their diagnosis, whether it be 1, 5, 10 or 20 years?
How would anybody know if they had smoldering myeloma for any specific period of time before their diagnosis, whether it be 1, 5, 10 or 20 years?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Progression risk & time smoldering prior to diagnosis
Hello Anna,
In addition to the issue Multibilly raises, I wanted to mention that, for reasons discussed at length in the forum thread "Risk of progression in smoldering multiple myeloma," which Multibilly started four years ago, the "standard" progression rates for smoldering myeloma are misleading.
Instead of the usual 10%, 3%, and 1% rates of progression that you're accustomed to seeing, it probably is better to think in terms of 13%, 7%, and 4%. This is because the usual 10-3-1 statistics, which come from a study done by Mayo Clinic researchers, do not mean what people usually think they mean.
There are one or two additional caveats related to the "standard" progression statistics that are important and are discussed in the thread I mentioned above.
There also is a post in that thread that I made that specifically addresses the question you've raised. My post was sparked by this question:
Here is how I responded:
If you're interested in reading more on this general topic, you can check out this link to forum discussions related to the risk of progression from smoldering to active multiple myeloma.
Take care,
Boris.
In addition to the issue Multibilly raises, I wanted to mention that, for reasons discussed at length in the forum thread "Risk of progression in smoldering multiple myeloma," which Multibilly started four years ago, the "standard" progression rates for smoldering myeloma are misleading.
Instead of the usual 10%, 3%, and 1% rates of progression that you're accustomed to seeing, it probably is better to think in terms of 13%, 7%, and 4%. This is because the usual 10-3-1 statistics, which come from a study done by Mayo Clinic researchers, do not mean what people usually think they mean.
There are one or two additional caveats related to the "standard" progression statistics that are important and are discussed in the thread I mentioned above.
There also is a post in that thread that I made that specifically addresses the question you've raised. My post was sparked by this question:
"Don't we have to factor in lead-time bias? Some people with smoldering multiple myeloma were diagnosed very early by "accident", so they may take longer to progress on paper, but yet may still progress at some point. If another person was smoldering (undetected) for X years before diagnosis, they may appear to progress sooner, but both people still "sparked" at the same time."
Here is how I responded:
"I don't think there is any lead-time bias to the estimates. [It] is absolutely correct that people are diagnosed with smoldering myeloma at different points in the disease's progression. But that was true for the patients included in the sample of 276 Mayo Clinic smoldering myeloma patients used to create the graph Multibilly included in his posting."
If you're interested in reading more on this general topic, you can check out this link to forum discussions related to the risk of progression from smoldering to active multiple myeloma.
Take care,
Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Progression risk & time smoldering prior to diagnosis
Thanks guys, it make sense.
Seems to me that the "average" mentioned in many multiple myeloma analyses are with very high variance so its a bit hard to conclude.
Multibilly, as for your comment, one can't know for sure but in some cases can estimate based on past blood work. Looking at my blood work analysis done since 2002, I had quiet steady total protein estimate at 7.5 and at one point it jumped to range of 8.3-8.8 and kept at this range till now
Seems to me that the "average" mentioned in many multiple myeloma analyses are with very high variance so its a bit hard to conclude.
Multibilly, as for your comment, one can't know for sure but in some cases can estimate based on past blood work. Looking at my blood work analysis done since 2002, I had quiet steady total protein estimate at 7.5 and at one point it jumped to range of 8.3-8.8 and kept at this range till now
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Anna721 - Name: Anna
- Who do you know with myeloma?: I
- When were you/they diagnosed?: Nov, 2017
- Age at diagnosis: 40
Re: Progression risk & time smoldering prior to diagnosis
Hi Anna,
Right. But how would you know if your earlier lab results may have possibly represented smoldering myeloma versus MGUS without the benefit of having SPEP results or bone marrow plasma cell counts in hand? And then how would you know for sure that your elevated protein count was the result of a monoclonal gammopathy versus something else such as dehydration? Those are the kinds of uncertainties that the researchers would have to grapple with if they were to try take into account possible lead times.
Now having said that, if you think that it is likely that you've had either an M-spike greater than 3 g/dL (30 g/l) or a bone marrow plasma cell percentage greater than 10 % for a number of years prior to your diagnosis, I would take comfort in believing that you are further along on the smoldering curve and therefore less likely to progress in the future.
Right. But how would you know if your earlier lab results may have possibly represented smoldering myeloma versus MGUS without the benefit of having SPEP results or bone marrow plasma cell counts in hand? And then how would you know for sure that your elevated protein count was the result of a monoclonal gammopathy versus something else such as dehydration? Those are the kinds of uncertainties that the researchers would have to grapple with if they were to try take into account possible lead times.
Now having said that, if you think that it is likely that you've had either an M-spike greater than 3 g/dL (30 g/l) or a bone marrow plasma cell percentage greater than 10 % for a number of years prior to your diagnosis, I would take comfort in believing that you are further along on the smoldering curve and therefore less likely to progress in the future.
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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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