Multiple Myeloma - Survival Rate Statistics by Hospital
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Multiple Myeloma Life Expectancy Remains Stagnant for the Third Straight Year -  What the #@&% ???????  But I do see some light!

5/1/2013

12 Comments

 
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??   
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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.  

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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




12 Comments
John W
5/1/2013 03:35:41 am

Gary
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

Reply
Gary Petersen link
5/1/2013 03:42:34 am

Thanks John, I hope and pray that you are right,

Reply
Rich P
5/21/2013 07:05:03 am

I'm guessing, sadly, that most people do not get second opinions and seek out the best qualified doctors, so the treatments they receive are not the latest.

Reply
Gary Petersen link
5/22/2013 06:05:19 am

Rick, you make an excellent point. A lot of people may just go to their local hematologist or oncologist, and trust their opinions even though they may not see but one or two patients with myeloma in their lifetime. Sad but maybe true!

Reply
mark partington link
6/11/2013 04:17:20 pm

thank you gary~
this well writen piece helped clarify the 5yr. - 15-20 year discrepancy..

where does the proverbial 'countdown' begin for us?-I figured approx 5-8yrs slowly honeycombing my l. pelvis-(the femur went thru socket into pelivs-shattering it.-I've had 2 sct 's- doing o.k....although the numbers/igg protiens/m-spike-'remission followed by more number games....seems to me a rabbit hole that is somewhat a source of ?illusion/disillusion.
I guess I shouldnt wander here-but stick with-"when does one flip the hour glass" again; great article.
statistically yours,
mark_p

Reply
Gary Petersen link
6/15/2013 02:33:25 am

Mark, the next comment was meant for you and not Pat. Sorry for my mistake. Gary

Reply
Gary Petersen link
6/12/2013 06:39:52 am

Pat, Ouch!!!! Sound like you have gone through a lot on your myeloma journey, but now with Kryposlis, Doxil, Pomalyst,, and all the new drugs under development you just may have to "flip that hour glass" a few more times. I also wrote a followup to this article and you can read it at:
http://www.myelomasurvival.com/1/post/2013/05/multiple-myeloma-survival-rates-finally-show-the-improvement-we-had-hoped-and-prayed-for.html

Reply
margaret Singleton
9/17/2013 04:04:15 pm

still trying to wrap my mind around what i read ,been going through the journey since 2007 stim cell in 2008 treatments every year since just a lil weary in journey ,but just cant stop trusting God on what i need to do next ,doctor want me to think about another stem cell transplant just don;t know yet? sincerely trusting GOD

Reply
Gary Petersen link
9/18/2013 06:11:01 am

Margaret, you certainly putting your trust in the right place! So remember to make sure you have a skilled multiple myeloma specialist on your team and that they treat many MM patient, and if not get a second opinion. I believe God put me in contact with doctors that saved my life. A list of myeloma professionals is at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html

May God Bless your myeloma journey/Gary

Reply
les clemente ....
2/1/2014 06:40:57 am

..2005 stage 3....thalidomide dex ..then double stem cell...7 yrs complete remission...2013 relapse started Velcade controlled m.spike....2014 started10 mg revlimed going for complete remission ...was55 when diagnosed now 65.....hoping 8 more yrs

Reply
Marion herndon
9/28/2014 12:05:11 pm

Stage 3 multiple myeloma. Did revlemid? , thalidomide, stem cell transplant. Staying active regret there is not a support group in area.
Any way to start a group in area ????

Reply
Gary Petersen link
9/28/2014 10:05:07 pm

Marion, the IMF(International Myeloma Foundation) will help you to start up a program for your area. A web post explaining this is at the link: http://myeloma.org/ArticlePage.action?articleId=488
Also Pat Killingswork and Cure Talk provide an on line monthly support group and you can sign up for it by emailing [email protected]. Good luck and may God Bless your Myeloma Journey. Gary

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    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

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