Multiple Myeloma - Survival Rate Statistics by Hospital
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Improve your own Multiple Myeloma Life Expectancy -  Exercise (30 minutes a day keeps the Myeloma at Bay)!!!

5/21/2013

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Pat Killingsworth has just completed a three part series that Danny Parker authored on the benefits of exercise on myeloma life expectancy, survival rate, and the probability of relapse.   I have found little data myself on the impacts of survival for blood and bone diseases like multiple myeloma, but Danny has gotten down into the nitty gritty of the impact of exercise on the biology of multiple myeloma.  You can read the entire series if you click on the following links:  PART1, PART2, & PART3.

When I was going through my stem cell transplants, they were very insistent on making sure that we had at least 30 minutes of exercise every day.   And as any person who has gone through the SCT process, you really do not want to do much of anything, but obviously as noted by Danny and Pat, there are benefits from exercise that are extremely important to the patients long term survival. 

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Do you know who this is on the left??  Because if you have multiple myeloma you are on average 69 years old and know that this is Jack LaLanne who was considered "The Godfather of fitness".  Jack died at age 96, well past the 46 year expected life expectancy for a male born in 1914.  Few of us will look like this, but the benefits of exercise does not require that you do any more than 30 minutes of exercise a day.

The majority of data on life expectancy, survival rates, and a reduction in the probability of relapse come from studies of the far more common forms of cancer.  And as could be expected, the rarer the disease the less data that is available.  I think that the data that Danny and Pat provide explains the biology of exercises benefits, and as a result we can hope that the experience from the studied cancers can transfer to multiple myeloma.  

So what do some of the studies for other cancers show.  Some of the more robust studies come in the area of breast cancer, and colon cancer.  You can do your own research on these cancers, however, I will provide a few examples.  

Dr. Meyerhardt, of the Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, is one of the country's leading researchers on the impact of lifestyle factors on cancer outcomes. He stressed that regular non-strenuous exercise can significantly improve survival in people recovering from colorectal cancer. Colorectal cancer recurrence or death was reduced by 49% in the people who regularly exercised. 

In 2005, Harvard researchers found that simply walking on a regular basis helped breast cancer patients. The study focused on about 3,000 women diagnosed with breast cancer who are part of the Nurses’ Health Study. Those who regularly walked three to five hours a week (or got comparable exercise) were 50% less likely to have a recurrence of their cancer than women who exercised less than an hour per week.

So, IF, and it is a big IF, we myeloma patients can obtain similar benefits  from exercise, then it is time for all of us to get moving, join a gym, walk, ride a bike, and any other activity that your physical limitations will allow.  Because a 50% benefit is a remarkable improvement to obtain without much cost or effort at all.  

And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

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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Multiple Myeloma Support Groups SAVE LIFE and improve life expectancy - None in your area!  You can now join the Cure Panel on line Support Group !   

5/14/2013

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I have written in the past that one of the best things your could do is to become your own best advocate, and that knowledge is Power and can SAVE LIFE for the multiple myeloma patient.   Support Group membership is one of the key ways to obtain this knowledge, and I wrote a blog post called,  Multiple Myeloma Support Group Members DO have a longer Life Expectancy and Improved Survival Rate! But is it the chicken and the egg?  In my research for this article I had found that the Support Group leaders reported a life expectancy 2.2 times greater than that reported by the National Cancer Institute.  But there is one huge caveat, and that is that support groups are not always available in your area, or you do now live in an area with a patient population that can support a group.  What do you do?  Travel 200 miles to a meeting?  Well now you can join an on line support group that has it's very first meeting on May 15th at 6:00 pm EST.  You can still sign up for this support group meeting if you just email Priya Menon of Cure Talk at her email address:  [email protected] .  So you can be anywhere in the world and you can be a member of an outstanding support Group.  Pat Killingsworth, author and advocate, has been all over the United States giving presentations at support groups, and has assembled what he believes is an exceptional leadership group for these meetings.  


You can read all about this on line support group in more detail if you just CLICK HERE!  A short bio for each of the Support Group Meeting Leaders is below for your convenience.


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PAT KILLINGSWORTH

Myeloma Beacon columnist and blogger, Pat was diagnosed with multiple myeloma in April 2007 at age 51. Pat is an author of four myeloma books Pat’s books include, Living with Multiple Myeloma, Stem Cell Transplants-A Patient’s Perspective, and New Multiple Myeloma Therapies, and Financial Aid for Myeloma Patients and Caregivers. To book your copy of Pat's latest book, click here. Pat also maintains two blogs, Living with Multiple Myeloma and Help with Cancer.


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SANDY HIRSCH

Sandy Hirsch of Charlotte, NC was diagnosed with Multiple Myeloma in August of 2009. Sandy and her husband, David, started a myeloma support group in 2010, the first in Charlotte.


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SUE VANDUYN


Caregiver Sue VanDuyn has been married to Harold for almost 24 years. Harold was diagnosed three years ago with MM, had a stem cell transplant in September, 2010, and has been in stringent CR ever since the transplant. With the help of the Int’l Myeloma Foundation, Sue and Harold started a myeloma support group for the West Michigan area in June, 2011. Sue volunteers for the International Myeloma Foundation (IMF) as a caregiver advocate and travels to Dallas, Texas each July to assist the IMF at their annual Support Group Summit.


Hope you enjoy this meeting, and learn a lot.  As always 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


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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


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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

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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




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

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