Multiple Myeloma - Survival Rate Statistics by Hospital
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Multiple Myeloma Survival Rates FINALLY Show the Improvement we had hoped and prayed for!!!!!

5/6/2013

9 Comments

 
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. 
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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 [email protected]


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


9 Comments
john
5/6/2013 01:02:01 pm

Gary
Glad I could be of assistance! I'm confident that these numbers will really start moving in the right direction,and hopefully at a fast pace.
Thanks
John

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Gary Petersen link
5/7/2013 10:19:03 am

John, Thanks for the heads up! It am glad I was able to take another look at the data and find the REAL positive.

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Brad welch
5/14/2013 06:21:41 am

I feel lik eI have been looking at information overload. My wife has MM looking to start treatment in a couple weeks although there was a differnce of opinion at Cleveland Clinic related to starting treatment. Where to go for treatment is not clear and not easy to identify the right place. lates is I am looking at Dr. Anaisse at U of C but he does not have data posted or just go to Wisconsin because of potential cure. aaaaaargh SO is there a more concise site to view that shows options, data etc so one can make a decision. thanks

Gary Petersen link
5/14/2013 07:14:15 am

Brad, so sorry to hear about your struggles with the treatment choices. If you go to www.myelomasurvival.com you can find the most recent and best survival rate statistics by hospital that I have found. Sorry for its limitations, but doctors are not that forthright with their survival statistics. Cleveland Clinic does provide their statistic, however Dr. Anaissee of University of Cincinnati does not. Also Dr. Anaissee was the Director, MIRT Division of Cancer Supportive Care at the University of Arkansas for Medical Sciences for years and was not a myeloma specialist prior to his appointment to U of C. If you look at the information on my site, the three great choices who publish their statistics are Dr. Barlogie, UAMS, Dr. Berenson IMBCR, and Dr. Hari of the Medical College of Wisconsin. There is also a list of myeloma specialists that have passed my test for a Multiple Myeloma Specialist at: http://www.myelomasurvival.com/myeloma-specialists-listing.html
Good luck and may God bless your families myeloma journey

Pat link
5/20/2013 01:49:03 am

Hey Gary! May I be blunt? What's the old expression, "You're missing the forest while watching the trees?" or something like that. Yes, the outdated SEER data is both frustrating and puzzling. But lagging novel therapy availability isn't the only thing holding these stats back. 7-14 year survival? WRONG! For hand picked UAMS patients, sure. Low risk patients in their 50's and 60's. Yes. But high risk patients still 3-4 years. And I think you forget the most important factor holding these stats back: 70 percent of myeloma patients are 70 years old or older! So an 81 year old patient with congestive heart failure is diagnosed in July, has a heart attack and dies in December. They lived 6 months. Doesn't this drag the stats down for all? You tolerated intensive TT chemo because you were relatively young and strong. A 78 year old diabetic with high blood pressure? They're going to live 7-14 years? Until these stats are broken down by age and risk, number isn't going to jump-up quickly, is it? Keep up the great work!

Reply
Gary Petersen link
5/20/2013 02:46:22 am

Pat, I was kind of hoping that I was seeing the trees and the forest, and the valley and the river, and the dear and the antelope playing. However, you do make a good point, and that point is that age creates an upper limit for survival. The average age of a myeloma patient is 69 or 70 depending on where you look, but if we use 70 then 50% or the patients are older than 70 by definition. The life expectancy for a person at age 70 is about 15 years. So you could expect to live to age 85 if your are the average American. This would be the effective upper limit.

So this would mean that at 4 years we still have a long way to go before we hit the upper limit. You are right about the high risk group however, because no one has unlocked that puzzle as yet.

I do hope that we can expect the rate of improvement to accelerate with more years of widespead use of the new novel agents by the home town oncologist, and not just the multiple myeloma specialist. We can hope and pray can't we? So 14 years is probably out of the question, without a cure. Pat, thanks for helping me to keep it real. Hope your "Pain in the A.." is getting better. Upand walking in two days after a hip replacement, you a Superman, oh and a flasher. Best Regards/Gary

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Andrew
9/17/2013 10:12:51 am

A relative who was diagnosed about 9 years ago is now in his early 50s.

He lives across the country but I always see him posting online about new treatments and participating in new trials. I guess he would be qualified as low-risk?

Is 14 still the upper limit for someone like him? Is the possibility of a cure increased/ing for him?

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Gary Petersen link
9/17/2013 10:32:21 am

Andrew, Usually the longer a patient live, the long he will live. I do not know why this is the case but can surmise that it is because their type of MM responds well to therapy. And I know of a few patients who are out 20+ years. Also, some people have myeloma, but it is called smoldering and do now become active for a long time.
In addition, the younger you are at diagnosis the long your life expectancy. At 41 which was your relatives diagnosis, he would live 2 times longer than the average patient who is 70. If you thumb through the blog posts you can find both of my posts which discusses all of these points. Their is no upper limit, and he just may die of old age!

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Hilary
3/1/2019 09:22:11 am

I’m curious about survival rates. I’m high risk 60years old diagnosed a year ago. The survival rates are for people in active therapy? I went thru chemo, which drove the mm down and stem cell that didn’t work. I’m in a trial at duke right now. I’m thinking of getting a second opinion even though I have one of the best doctors. It’s really confusing for me.

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