Multiple Myeloma - Survival Rate Statistics by Hospital
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Cancer Specialists SAVE LIFE -  The Evidence Continues to Mount!

1/26/2014

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When it comes to incurable cancers like multiple myeloma, or any metastasized (Stage 4) cancers, a specialist in that cancer continues to show survival rates and life expectancy 2 to 5 times better than the national averages.  A recent blog post by Pat Killingsworth has the heading "It makes a difference how and where myeloma patients are treated".  In the post Pat has found additional evidence that a cancer specialist's survival rates outperform the national averages.  He writes:

Fellow Floridian and myeloma survivor, Gary Petersen, hosts a website, MyelomaSurvival.com.  On it, Gary stresses how important it is to be treated somewhere that specializes in multiple myeloma.  In a feature article that ran on MedPage Today after ASH last month, myeloma specialist, Dr. Noopur Raji, agrees:

“What it really tells me is that some of [survival may have] to do with access to drugs and access to therapies,” she said. Access to the latest treatments is more likely at academic centers, she noted.

The clinical implication for patients is that “if you have a center which focuses on this disease, go to that site,” she said.


Dr. Raji  is a myeloma specialist and was discussing a recent study by Mayo Clinic which had studied almost 28,000 patients newly diagnosed in 1998 through 2000 and observed the following findings:

For instance, more than 10% of patients treated at academic centers lived longer than 10 years, compared with about 5% treated at community cancer centers.

Similarly, more than 20% of those who had a stem cell transplant as part of initial therapy lived more than a decade, compared with about 5% of those who did not.



You are therefore 2 times more likely to survive 10 years if you are treated at an academic institution.   And if you look at the specialists listed on this site most are from academic institutions.  So it could just be another chicken or the egg, or both, question.  You can read Pat's entire article if your CLICK HERE.  In the article, Dr. Raji also goes into more detail into the surprising advantage of early stem cell transplant, over later or no transplant.  

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There is an excellent read by Sharon Begley of Newsweek that makes the same conclusion for all cancers.  The headline reads: "Why a Top Cancer Center Could Save Your Life."  She comes up with some nice comparisons and hard data, but also finds that survival results are very hard to come by.  You almost have to be Sherlock Holmes to find published information.  She states:  "In trying to find the oncologist or cancer center with the best track record on, say, stage IV bladder cancer, even the savviest patient quickly hits a wall: with a few exceptions, cancer centers treat these "outcomes" data like state secrets."  To read this excellent article CLICK HERE.

But the fact remains if you find a specialist for your incurable or stage 4 cancer, you can survive for as much as  2 to 5 times longer than if you were not treated by a specialist.  However, as Sharon states, many curable cancers or 80% of cases have not metastasized and can be treated successfully at a community oncologist. 

I have worked with many myeloma specialists who have gone out of their way to provide their survival information for myelomasurvival.com, and these doctors are my heroes and are helping to prove that survival performance measurement can SAVE LIFE.  In addition, I had recently helped two friends who had asked me if there were specialist listings for colon cancer and breast cancer, both of which are very common cancers.  And there was nothing that I could find, however I could do a search with the heading "Stage 4 Colon Cancer survival rates" and find that some information by hospital is available.   You can find a few doctors and hospitals that have survival rates 2 to 5 times greater than the national averages for both stage 4 breast and colon cancer.  I have a blog post on how to find a myeloma specialist, and the same search methods can be used for any stage 4 cancer.  You can read this post if you CLICK HERE.   

Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


 

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Mirror Mirror on the Wall Who has the Best Allo Survival of Them All?

1/20/2014

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I will give you 10 guesses. It is the Blood and Marrow Transplant Program at Northside Hospital in Atlanta, Georgia. They qualify this as non related matching donor transplants, which  is a very difficult kind of transplant.  It is quite the surprise to see it is not one of the famous nationally known hospitals that one might think would be the best.  I am always on the lookout for survival statistics for multiple myeloma, and as anybody knows who has looked for hard data by hospital, it is difficult to come by.  So in my search I came across an article published by the Northside Hospital which identified their allogeneic transplant program as the best in the nation for 1st year survival. The  one hundred day and  the 1 year survival statistics are very important measures of success for an allogeneic transplant program.  One very important point of note is that the vast majority of this data is for other blood cancers and lymphoma, and only a very small percentage is for multiple myeloma.  The allo continues to be a rare procedure for myeloma patients. One of the reasons for this low usage is the high occurrence of Graft vs. Host Disease where the bodies own immune system turns against the donor stem cells and creates some nasty side effects.  However, a breakthrough clinical trial using Velcade during the allo transplant has shown great results in mitigating Graft vs. Host.  Pat Killingsworth is doing a multiple part blog post on a patient going through this trial and you can read the first post by CLICKING HERE, and view all parts by going to http://multiplemyelomablog.com/   Dr. Hari of the Medical College of Wisconsin was recent interviewed on the mPatient.org Radio Program about their allo program.  Dr. Hari's results are some of the best in the United States with a 74% first year survival, and you can hear this program if you CLICK HERE. 

You can read the newsletter by Northside Hospital if you CLICK HERE. Two very interesting graphs compare Northside's data against other programs in its region of the country and against the best known national programs.  The graphs are noted below:


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On the first graph the Northside hospital data has a death rate of 21%, whereas the last one on the graph for Southeastern Transplant Centers has a death rate of  48%, so you are 2.3 times more likely to survive 1 year under the care of the doctors at Northside Hospital.  And if you look at the second graph you are also 2.2 times more likely to survive one year at NSH than at the nationally known Emory or Johns Hopkins facilities.  Of the 152 allo transplants at Northside, only 5 were myeloma patients, and of these 5, 4 were alive at one year.  This is 80%, or equal to their overall number of 79%, however 5 transplants is just too small a sample to be statistically significant. This is just 3% of total allo transplants at Northside for myeloma patients, and this is fairly representative of what you will find for a national average.

You can find data for all of the Allogeneic programs that report data to the National Marrow Donor Program (NMDP) if you CLICK HERE.  It will show a listing by state, and you just click on the name and review all of their data by disease type. 

Now, what is the take away from these findings.  First, if you are a cancer patient who can benefit from an allo (mainly leukemia and lymphoma) the data is there for you to choose a location that is at least 2 times more likely to keep you alive for the first year. All of the locations listed on the NMDP site has this data and should be able to tell you, and if they do not you can now find it yourself. Unfortunately,  these same locations also have similar data for survival for the auto transplant, but have as yet chosen not to make this public. However they do have access to this information and should be able to provide it to you.  If they do not give it to you, they are either unaware of its existence, or just are afraid to provide their below average performance to their patients.  What should be happening is locations that are not performing to the highest standard for allos should be finding out what the Northside Hospitals of the world are doing that make them the best of the best and duplicate it in their practice.  

I think what the NMDP is doing for the allo is a game changer, and very brave of all the membership hospitals that has chosen to participate, however it should be expanded to include the auto transplant, and ultimately for all cancers.  This is the vision that Dr. Hofmeister has for myeloma and would be expandable to all cancers with the Ohio Myeloma Initiative. You can read about this if you CLICK HERE.  Consumer Reports is also looking to provide survival performance by center for all cancers, and this is a potential game changer as well.

The fact that I continue to see progress in the area of survival outcome based performance by facility bodes well for future improvements in cancer life expectancy. Like a very insightful  mentor of mine once stated: "You can not improve that which you do not measure". This is no different for cancer treatment, and finally it looks like we are moving in that direction.  

Good luck and may God Bless your Cancer Journey.   For more information on 
multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


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Improved Multiple Myeloma Life Expectancy in FIVE IMPORTANT STEPS

1/9/2014

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Sometimes I wonder if there should be a quick start multiple myeloma handbook.  No one really gives you a guide as to how to tackle this monumental task that has just turned your life upside down.  

First off you go to a doctor for a broken bone, bone pain, constant and reoccurring illness, anemia, or the many other symptoms that are an offshoot of your myleoma.  This doctor will find you have high calcium in your blood, kidney dysfunction, bone lesions, high blood protein levels or some other marker that will result in having you see an oncologist.  The oncologist does a bone marrow biopsy and maybe a light chain test and confirms multiple myeloma.  This is where many people make their first mistake and leave their treatment in the hands of the oncologist who identified their disease.  They may recommend a treatment plan, but this is where a myeloma patient needs to follow the five important steps to improved myeloma survival.

This is where the 5 steps to your successful myeloma journey begins.  

1)  Become your own best advocate and educate yourself about this disease. 
Given that there isn't a consensus about how to treat this disease, patients must unfortunately educate themselves about their treatment options.  For a summary of how to do this CLICK HERE!

2)  Choose a MULTIPLE MYELOMA SPECIALIST to lead your treatment plan. This is a MUST HAVE.  Myeloma specialists show a survival rate 2 to 4 times greater than the national average. There is a continuum of treatment philosophies to choose, and they go from "Less is Best" to "More is Cure".   A list of multiple myeloma specialists can be found if you CLICK HERE!  

3)  Find out if you have high risk or low risk disease.  This is done by either a FISH test or a 70 gene array.  Low risk patients (85% of patients) have a disease that is easier to treat, and high risk (15% of patients) has half the life expectancy of the low risk type.  It would therefore require a facility well versed in high risk myeloma, and also one that is heavily into clinical trials.  Clinical trials often focus on high risk disease, and you will be more likely to get into these trials if the facility you are treated at participates.  You can find out more about high risk disease if you CLICK HERE.

4)  People with myeloma seldom die from myeloma but rather from complications from myeloma.  Pneumonia, infection, anemia, and internal bleeding are just some of these complications.  Therefore, a treatment center that has a focus on supportive care is crucial to your survival.  For more information on this subject CLICK HERE.

5) Continue your myeloma education by becoming a member of an  IMF or LLS Support group.  Support group members learn more about this disease, and knowledge is life.  Anecdotal evidence suggests a longer life expectancy from active membership in a support group. For more information on this CLICK HERE.

For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1 


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    Author

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

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