Multiple Myeloma Survival Rates FINALLY Show the Improvement we had hoped and prayed for!!!!!

I must apologize for the tone of my last post about the new data from The National Cancer Institute. They  had updated the SEER data on 4/24/13, and the average life expectancy remained at 4 years, and I had expressed disappointment and understated the most important finding in the data.  That finding was that the first year survival rate had taken a significant leap forward with an improvement of 19% over the previous first year survival rate. 


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 why has the 4 year rate not shown any improvement over the last 3 years.  One of my readers John wrote,

” Very interesting to say the least! I’ve got to believe that the current stats are way behind the actual survival expectancy. Great article Thanks, John”

Daaaa!!!!!  The most recent 4 year survival data is for patients that were newly diagnosed in 2006, and in 2006 the approved first line therapy’s were still pretty inferior to the new novel therapy’s.  For the first 5 months of 2006, there were no novel agents approved for the newly diagnosed multiple myeloma patient.   Thalidomide was the very first novel agent to be approved for first line therapy, and it received approval in May of 2006.  So prior to May of 2006 no one could receive treatment with any novel drugs unless they were getting it via clinical trials or though compassionate use programs obtained mainly at the very best multiple myeloma treatment centers.   Velcade was approved for first line treatment in June of 2008, and Revlimid was approved for use with at least one prior therapy in June of 2006.  So one could argue that the majority of impact of novel agents will not have a full year impact from the new standard first line therapy’s of Rd(Revlimid and dex), CyBord(Cytoxin, Velcade, and dex), or RVd(Revlimid, Velcade, dex),et. al. until 2008 or later.  

The most positive information coming out of the National Cancer Institute 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 is very significant.  One could expect this to reflect an improvement of the life expectancy  from 4 years to close to 5 years for those who were diagnosed with multiple myeloma in 2009.

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. These centers have been using these novel drugs for a long time, either in the clinical trial setting or though compassionate use programs.  Some of the best centers report a first year relative survival rate of between the mid to high 90%’s.   Should the overall first year rate improve to just 90% for all of the hospitals reporting to the National Cancer Institute from the current 81%, we could expect to see another 47% improvement in survival to 7 years or greater.  Now that is good news for the myeloma patient community.  So thanks John for getting me to take another look at the data.  

So the current survival statistics do not yet reflect much of the impact of these new novel agents, or any of the newly approved treatments for relapse and refractory myeloma, such as Kyprolis, and Pomalidomide.

I could never understand why the National Cancer Institute was reporting that 22350 people will be diagnosed in 2013, and the number who are expected to die from multiple myeloma is just 10710 for  2013.  Why the big difference?  The myeloma specialists have been saying there is a cure rate of 10 to 20% now, but could the current rate be much better?  Or could the survival rate have taken great leaps forward in recent years and this is being seen in the numbers as part of this difference. There are other potential reasons, but I would like to hope and pray it is one of those stated above.   

Best Regards and may God Bless your myeloma journey/ Gary Petersen

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