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Definition of Period for Survival Rates
Just diagnosed this month with Level 1 symptomatic multiple myeloma. When one reads about median survival times, when does the clock for that period begin? Is it measured from the time when one is diagnosed or from the time when one begins a treatment regimen?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Definition of Period for Survival Rates
I believe it is based on time of diagnosis. Please don't put too much stock into time estimates that you read. The statistics are out of date with the new treatments, and there are just so many variables. Many people on this site were diagnosed 10 years ago.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Definition of Period for Survival Rates
Hi, I asked the same question of my oncologist last visit. I had severe gout start about 4 years ago....out of no where. Medication assisted with that.
Severe blood noses started 3 years ago...ambulance( embarrassed big time) and doctors put it down to the stress of teaching.
Diagnosed in 2011 with multiple myeloma after tumour on sternum proved too much to bear and caused bone damage.
I asked could we look way back to the gout as a sign of multiple myeloma and then the blood noses as a "second stage".
A few blank looks confirmed how little is known about the roots of multiple myeloma, and how long I,d had it.
I think about the same issue...how long have I had it and what's next?
Severe blood noses started 3 years ago...ambulance( embarrassed big time) and doctors put it down to the stress of teaching.
Diagnosed in 2011 with multiple myeloma after tumour on sternum proved too much to bear and caused bone damage.
I asked could we look way back to the gout as a sign of multiple myeloma and then the blood noses as a "second stage".
A few blank looks confirmed how little is known about the roots of multiple myeloma, and how long I,d had it.
I think about the same issue...how long have I had it and what's next?
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Alex
Re: Definition of Period for Survival Rates
rum&ting wrote:
> I believe it is based on time of diagnosis. Please don't put too much stock
> into time estimates that you read. The statistics are out of date with the
> new treatments, and there are just so many variables. Many people on this
> site were diagnosed 10 years ago.
Yep, totally get these points and that the prognosis is much better these days. Thx
> I believe it is based on time of diagnosis. Please don't put too much stock
> into time estimates that you read. The statistics are out of date with the
> new treatments, and there are just so many variables. Many people on this
> site were diagnosed 10 years ago.
Yep, totally get these points and that the prognosis is much better these days. Thx
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Definition of Period for Survival Rates
Overall survival typically is measured from diagnosis, primarily because this is the first conclusive evidence of the disease and there is no way to actually look into the past and see when the disease first started. Some people will have had the disease longer, some shorter, when diagnosed. In the case of Alex above, he suspects it may have been as much as 3-4 years before being diagnosed. In my case, I think it was at least 6-9 months, probably more.
Statistically speaking though, how long you actually had the disease prior to being diagnosed is effectively absorbed in the median overall survival because generally speaking, those that had the disease longer before being diagnosed will tend to lower median, while those that are diagnosed sooner will tend to extend the median (ignoring the variety of genetic factors, health, age and other factors that affect overall survival). If everyone is measured from diagnosis, it all just gets averaged in.
As others have indicated though, you should not get too wrapped up in mean overall survival rates. In addition to not necessarily reflecting the most recent data, they also don't provide much use beyond saying half the people don't make it that long and half the people make it longer. You don't get an indication of how much less, or how much longer. And there are so many factors, such as those I listed above, that can influence which side of the median you end up on.
One of my recent columns discussed this, you may find it interesting to read:
https://myelomabeacon.org/headline/2012/08/16/me-vs-mm-prognosis/
Statistically speaking though, how long you actually had the disease prior to being diagnosed is effectively absorbed in the median overall survival because generally speaking, those that had the disease longer before being diagnosed will tend to lower median, while those that are diagnosed sooner will tend to extend the median (ignoring the variety of genetic factors, health, age and other factors that affect overall survival). If everyone is measured from diagnosis, it all just gets averaged in.
As others have indicated though, you should not get too wrapped up in mean overall survival rates. In addition to not necessarily reflecting the most recent data, they also don't provide much use beyond saying half the people don't make it that long and half the people make it longer. You don't get an indication of how much less, or how much longer. And there are so many factors, such as those I listed above, that can influence which side of the median you end up on.
One of my recent columns discussed this, you may find it interesting to read:
https://myelomabeacon.org/headline/2012/08/16/me-vs-mm-prognosis/
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
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