I posted this on another tread, but I do believe that it applies hear as well. I do believe that we may be in a position where some myeloma specialists already are providing treatment that is in effect CURE. First how do we define CURE? What total death rate would be considered cure? Using the death rate as a measure, how might we define cure? If I were to have a go at it, I would say that it might be if the average myeloma patient lives as long or longer than the average American of the same age. So if you were at the age of the average myeloma patient or 70 years of age, you would want to live another 16 years to 86, as calculated by the Social Security actuarial death rate tables. One another tread they discuss the death rate for the Arkansas Total Therapy 2 protocol. The table of deaths for the UAMS TT2 multiple myeloma protocol that is being discussed there is for 12 years and is as follows:
Myeloma-related mortality - 163/668
Mortality causes unknown - 89/668
Treatment-related mortality - 51/668
Total deaths - 303/668 = 45.3%
Therefore the death rate for TT2 for this 12 year period is 45.3% of the patients, however if you are just an average run of the mill American at age 70 (which is the average age of a myeloma patient) the death rate is 45.0% based on these same actuarial tables. So no matter how you slice the total deaths into this or that bucket, the total number of deaths are at the definition of CURE as I defined it above. What is crazy about this is that TT3 has better results and probably shows a survival for patients greater than that for the average American. One other interesting point is that this kind of performance is being reported in other myeloma specialists data. Dr. Berenson's is close to this cure definition, and I believe there will be many more that will show similar results in the future. I believe there is more reason for HOPE now than there ever has been.
Best Regards/Gary Petersen
grpetersen1
Forums
Re: Life Expectancy
Ronald that is a great question! I have looked on the internet for this number and have been unable to find it, however if anyone can find it please let me know what it is, and I can make an age adjustment for any difference. As I thought of your question, I had a epiphany, and did a little analysis on some of the Clinical Trials that did show the average age. One major ground breaking trial had an average age of 58. The 5 year Social Security death rate at 58 is 4.7% whereas that for a 70 year old is 12.9%. This 8.2% difference is significant, and puts a bias in the study data for all clinical trials with younger patients. Other studies show that younger people with multiple myeloma live much longer then older myeloma patients, who might also have co-morbidities. The recent study by the UK's national health service link: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/myeloma/survival/#age
The graph shows that people who are between 50 and 59 years of age are 1.9 times more likely to survive than people who are between the ages of 70 and 79. The is far more significant the the impact of the difference of 8.2% as noted above.
This could mean that most clinical trials with patients who are younger than 60 are statistically flawed to the point of being close to irrelevant, unless they are age adjusted! Wow Ronald, did you just open up a can of worms! Best Regards/Gary
The graph shows that people who are between 50 and 59 years of age are 1.9 times more likely to survive than people who are between the ages of 70 and 79. The is far more significant the the impact of the difference of 8.2% as noted above.
This could mean that most clinical trials with patients who are younger than 60 are statistically flawed to the point of being close to irrelevant, unless they are age adjusted! Wow Ronald, did you just open up a can of worms! Best Regards/Gary
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GaryP
Re: Life Expectancy
Thanks Gary for posting the link from the UK Cancer Care. One thing that I read into it is that the statistics stop thus far in 2009. Also the survival graphs continue to improve, and where I live, some of the newer drugs, novel agents, have only been available since 2008. So of course I hope to read that in the next instalment of these graphs, the numbers of years of survival would still be improving.
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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: Life Expectancy
Hi there I don't usually read these site or entry in to these forums but I would like to say by now you would have had your shear of treatment and getting to no your way around it,, I was diagnosed 2001 at the age of 33 and as you can work out coming up to 45 , I've had lots and lots of treatment and at present on none , my doctor told me at the start if I make it past two years give up smoking 11year later I still smoke what I'm trying to say is its good you want to no as much as you can about myeloma but try and not let it take over all your time enjoy life and all the best with your fight
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Lamborghini
Re: Life Expectancy
My dad was diagnoised with amyloidosis with multiple myeloma back in July 2012; he started the treatment in August. They began with Chemo treating the Amyloidosis 1st. His health is going downhill FAST. He was an alcoholic for 10 year VERY HEAVY and was in his 2nd year of soberity June of 2012. He gets treatment from the VA in Dallas. Jan of 2013 he will go to San Antonio to begin his stem cell transplant (in which I think he is going to die through this process). I dont think his body will be able to handel the treatment. So far (in Dallas) he still has all of his hair, he has lost a LOT of weight and gets dizzy when he tries to walk. He will be 61 in April IF he lives that long. I keep trying to seek answers but i can't seem to come to terms with this disease(s) and how to figure out how long he might live.
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Amanda Dunning
Re: Life Expectancy
Hi Amanda, Of course I couldn't know exactly how you Dad's health is, but he wouldn't be given a stem cell transplant unless he passed certain health tests (heart, lung, blood). If you were not comfortable with this or if there were some genetic markers that showed that this wasn't in his best interest, you could get a second opinion, couldn't you? Best of luck to you, and try not to get too discouraged. The fact that he is in sobriety now is a good sign! He is lucky to have a nice daughter helping him.
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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: Life Expectancy
My mom was diagnosed with multiple myeloma and lived for 8 years following her diagnosis. I know some people who lived longer, and others I know have lived only half as long as that. Mom was 70 at diagnosis and she never lost all her hair. She received radiation weekly and chemo sporadically. She was always weak and lethargic afterwards and typically sleep all day for the next day and a half.
Like others have said, prognosis and life expectancy depend on so many variables, like age, your general health, diet, other medical conditions you have, any other medications you’re taking, how long you had it before your diagnosis, etc. So, it's not fair to state a specific life-expectancy. I see that science and medicine have improved greatly over the years so as time goes on, patients and their families have reason to be more hopeful than in the past.
William
Like others have said, prognosis and life expectancy depend on so many variables, like age, your general health, diet, other medical conditions you have, any other medications you’re taking, how long you had it before your diagnosis, etc. So, it's not fair to state a specific life-expectancy. I see that science and medicine have improved greatly over the years so as time goes on, patients and their families have reason to be more hopeful than in the past.
William
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willboywonder - Name: William Saunders
- Who do you know with myeloma?: Mother (deceased)
- When were you/they diagnosed?: 2004
- Age at diagnosis: 70
Re: Life Expectancy
Lamborghini wrote:
> Hi there I don't usually read these site or entry in to these forums but I
> would like to say by now you would have had your shear of treatment and
> getting to no your way around it,, I was diagnosed 2001 at the age of 33
> and as you can work out coming up to 45 , I've had lots and lots of
> treatment and at present on none , my doctor told me at the start if I
> make it past two years give up smoking 11year later I still smoke what I'm
> trying to say is its good you want to no as much as you can about myeloma
> but try and not let it take over all your time enjoy life and all the best
> with your fight
I agree with you. Enjoy life. Every day at 1pm I have a jack n coke along with a cigar. I don't let multiple myeloma run my life.
> Hi there I don't usually read these site or entry in to these forums but I
> would like to say by now you would have had your shear of treatment and
> getting to no your way around it,, I was diagnosed 2001 at the age of 33
> and as you can work out coming up to 45 , I've had lots and lots of
> treatment and at present on none , my doctor told me at the start if I
> make it past two years give up smoking 11year later I still smoke what I'm
> trying to say is its good you want to no as much as you can about myeloma
> but try and not let it take over all your time enjoy life and all the best
> with your fight
I agree with you. Enjoy life. Every day at 1pm I have a jack n coke along with a cigar. I don't let multiple myeloma run my life.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Life Expectancy
Hi Coop223, I like your style! I am partial to microbrewed beer. My doctor never told me no. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49