The National Cancer Institute has updated the SEER data as of 4/24/13, and the average life expectancy remained at just 4 years. It has now been three years that the average life expectancy has remained the same, or in other words the 4 year survival rate is 50%. This continues to astound me, in that I would think that the standard therapy's using the new novel drugs has been available for years, yet we have seen no improvement. What the heck is going on?
There is not one multiple myeloma specialist that I know of that does not quote their current life expectancy in the range of 7 to 15 years. So how can this still be the case??
There is not one multiple myeloma specialist that I know of that does not quote their current life expectancy in the range of 7 to 15 years. So how can this still be the case??
I can only surmise that most patients are getting care or their direction for care from other than a multiple myeloma specialist, or that many specialists really don't know what their survival performance truly is(something I have found during my research, poor data processing, or just not a clinical priority), or they are quoting current clinical trial data which generally has a younger and healthier patient and is usually using the newest standards of care, or,or, or ..... But in reality I am a little confused by the large gap between what is currently being quoted by myeloma specialists and what is reported by the National Cancer Institute.
There is a little light even in the graph of 4 year survival. It is not the last three years but the three year prior to that where life expectancy improved by 13.2%. But this is not the quantum leaps that we have expected to see given the constant 7 to 15 year references.
There is a little light even in the graph of 4 year survival. It is not the last three years but the three year prior to that where life expectancy improved by 13.2%. But this is not the quantum leaps that we have expected to see given the constant 7 to 15 year references.
I think the most positive information coming out of these numbers is for the recent one year survival rate statistics. If you look at this graph, there is a full 19% improvement between the last two years of data. It is a 4.4% percentage point reduction of the death rate from 23.4% to 19%. There was little improvement in the prior 8 years, so this leap forward could be very significant.
One thing I have found is that the best myeloma centers have a far better 1 year survival rate than the average center which provides data to the National Cancer Institute. Some of the best centers report 1 year relative survival of between the mid to high 90%'s. And as I had reported before, the survival rate improves with each year that your live. You can see that analysis if you just CLICK HERE. So, I would hope and pray that the 4 year survival for patients who were diagnosed in 2009 will also show a 19% improvement over the recent 4 year survival rate. Maybe, the entire health care system is just slow in digesting the newest and most effective myeloma treatments, and as a result the ones that are receiving the best care, or second opinions from a myeloma expert are just too small a component of the total myeloma patient population to make a dent in the numbers. This will not change until these best methods spread through osmosis throughout the health care system. What I don't understand is that Dr. Ravi Vij, Dr. Mazumder, and Dr. Hofmeister will provide a second opinion for $250 or less on the web site https://2nd.md/disease/multiplemyeloma and it is my understanding that this is not being utilized much if any by the myeloma patient community. Like I often say, if you do not have a myeloma speicallist in your local area, SAVE YOURSELF, and get a second opinion from one any way you can.
The real LIGHT from this data is that the 1 year survival rate has FINALLY made a large one year leap, and this bodes well for next years National Cancer Institutes one and two year myeloma survival data, and for all survival data in future years. At least I hope and pray for us all that it does, and that this years 19% improvement is not a data anomaly.
Best Regards and may God Bless your myeloma journey/ Gary Petersen [email protected]
P.S. - I did a followup to this post and you can read it if you CLICK HERE.
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
One thing I have found is that the best myeloma centers have a far better 1 year survival rate than the average center which provides data to the National Cancer Institute. Some of the best centers report 1 year relative survival of between the mid to high 90%'s. And as I had reported before, the survival rate improves with each year that your live. You can see that analysis if you just CLICK HERE. So, I would hope and pray that the 4 year survival for patients who were diagnosed in 2009 will also show a 19% improvement over the recent 4 year survival rate. Maybe, the entire health care system is just slow in digesting the newest and most effective myeloma treatments, and as a result the ones that are receiving the best care, or second opinions from a myeloma expert are just too small a component of the total myeloma patient population to make a dent in the numbers. This will not change until these best methods spread through osmosis throughout the health care system. What I don't understand is that Dr. Ravi Vij, Dr. Mazumder, and Dr. Hofmeister will provide a second opinion for $250 or less on the web site https://2nd.md/disease/multiplemyeloma and it is my understanding that this is not being utilized much if any by the myeloma patient community. Like I often say, if you do not have a myeloma speicallist in your local area, SAVE YOURSELF, and get a second opinion from one any way you can.
The real LIGHT from this data is that the 1 year survival rate has FINALLY made a large one year leap, and this bodes well for next years National Cancer Institutes one and two year myeloma survival data, and for all survival data in future years. At least I hope and pray for us all that it does, and that this years 19% improvement is not a data anomaly.
Best Regards and may God Bless your myeloma journey/ Gary Petersen [email protected]
P.S. - I did a followup to this post and you can read it if you CLICK HERE.
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
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