I must ask this basic question. As we all have read, there are predicted survival time periods documented for multiple myeloma. If someone is found to be in the MGUS stage, when does the time periods begin? Does it begin when a stage is assessed or when treatment begins? Just askin'.
I was told that I was in the MGUS in May 2009. I started Chemo in Oct 2012. And my Onc and I are planning a SCT within the next month. .
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David Rainwater - Name: David Rainwater
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 60
Re: Diagnosis of multiple myeloma
I asked the same question earlier. The thread below may help. You will read the following sage advice many times on this forum...ignore the stats...they are dated and don't reflect current reality of novel drug therapy. Took me about a month to really embrace the notion that we are all on a new frontier and the old stats floating about the web and various journals are pretty damn meaningless.
https://myelomabeacon.org/forum/definition-of-period-for-survival-rates-t1436.html
https://myelomabeacon.org/forum/definition-of-period-for-survival-rates-t1436.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diagnosis of multiple myeloma
Hi David, I think that your time of diagnosis would be when you start to keep track of how long you have had myeloma. Coming into it from the MGUS state, you would have a clear idea of when your myeloma started in your system. Lots of us don't know that, since we were diagnosed when the disease had already made inroads on us!
You really can't know the start date in that case. I wouldn't worry too much about 'predicted' survival times, since they are just averages and not meant to apply to a specific patient. There is a lot of uncertainly involved in the situations of MGUS, SMM and Myeloma, and that is a problem to come to terms with also!
You really can't know the start date in that case. I wouldn't worry too much about 'predicted' survival times, since they are just averages and not meant to apply to a specific patient. There is a lot of uncertainly involved in the situations of MGUS, SMM and Myeloma, and that is a problem to come to terms with also!
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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: Diagnosis of multiple myeloma
Hello David,
The "clock" starts at the time you are diagnosed with SYMPTOMATIC myeloma. As others have commented though...you are not a statistic, you are not a number. We have statistics and numbers that give the treating doctor and patient a rough guess at how things will go. Bur our ability to predict the future just isnt that great. Our crystal balls are very cloudy. It is true that the treatment for myeloma (and hopefully the outcome) is changing rapidly.
I hope you beat all of the number and stats !
The "clock" starts at the time you are diagnosed with SYMPTOMATIC myeloma. As others have commented though...you are not a statistic, you are not a number. We have statistics and numbers that give the treating doctor and patient a rough guess at how things will go. Bur our ability to predict the future just isnt that great. Our crystal balls are very cloudy. It is true that the treatment for myeloma (and hopefully the outcome) is changing rapidly.
I hope you beat all of the number and stats !
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
4 posts
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