Why do people die from Multiple Myeloma?  Lack Of Awareness??  It Is Complicated!!

PictureThe Creativity of the Myeloma Specialist SAVES LIFE!

I first wrote on this subject in 2012, and I thought it time for an update.  I still feel that many people die sooner than they need to, and still do not understand why there is such a difference between what is and what could be.  The what could be is that many centers have patients who live for an average of 10 years or more, and the average life expectancy  for all multiple myeloma patients is just  4 years based on the most recent National Cancer Institute survival data.  So why the big gap between the two?  Some of the reasons are the following:

1) The miserable Lack of Awareness of Mulitple Myeloma, the symptoms,and the complexity is just sad, and contributes to delayed and incorrect diagnosis.

The NHS or National Heath Service in the United Kingdom has some of the best historic data that exists for Multiple Myeloma.  They did some research and found that only 3% of the general population has ever heard of Multiple Myeloma, and if you talk to most myeloma patients they will tell you the first time they heard of it was at diagnosis.  You have heard of leukemia and lymphoma, which are blood cancers, but not Multiple Myeloma?  This lack of awareness translates into what I call the Multiple Myeloma Catch 22 (A can’t win situation).   With multiple myeloma the time from first symptoms to diagnosis for 25% of patients takes over 306 days to diagnose. The average life expectancy for myeloma patients if not treated  is 279 days.  Because of this lack of awareness by the general public and the general practitioners, this group of 25 percent of patients are “Dead at Diagnosis”.  

If you find yourself in this group of patients, do not delay, and get to a skilled multiple myeloma professional immediately.  You have no time to leave your care in the hands of a local oncologist. You need expert care immediately.

Awareness is so important, we now have a number of initiatives in place to try to get awareness up from the miserable 3% of the population to 90% or more.  This is a huge mountain to climb, but we have Mambo For Myeloma and Songs For Life awareness programs started by myeloma patient advocates.  Please participate in these programs so that we might raise awareness, save life, and raise funds for a cure. 

2) Quality of Care is of Utmost Importance, including Supportive Care

Some early death is understandable. I have seen patients who have been given Decadron as their only care, and I know this is such a substandard treatment.  Then there is the patient who chooses to only do holistic treatment,  or the patient who chooses no treatment, because his faith will heal him.   This was their choice, and I can understand it, but I certainly do not agree with these choices, and unfortunately the outcomes were inevitable.   And one reader commented that it is caused by the lack of health insurance, and I agree that this has an impact.  However, many myeloma patients have access to Medicare, and only 16.3% of the US population does not have health insurance. The differences in the death rate are not 15 or 20%, but 200 to 1000%.   So these cases I believe are not the norm, and account for only a small amount of the difference.  I can only therefore submit to you that this difference must be in the quality of care.

There are a number of people who somehow seem to beat the odds.  Mike Katz, from the IMF(International Myeloma Foundation) is a 20-plus year survivor.  Does the fact that he is aware of all the latest and greatest myeloma discoveries weigh at all in his longevity?  Pretty darn good move Mike!  Or Barb Hammack (who is no longer with us) but survived for 20-plus years and was a member of a myeloma patient to patient forum. Her doctor happens to have gone to school with Dr. Berenson, and Dr. Berenson, a myeloma specialist from LA, has some of the best survival statistics in the world.  Are you starting to get the connection?    

The point here is that there is a big difference between the skills of a myeloma specialist, and that of your local oncologist.  Andrew Shorr of Patient Power had an interview with a Dr. Bensinger( a multiple myeloma specialist) and asked the question about whether patients should seek a second opinion.  His reply “I do think it’s very important that patients with newly diagnosed myeloma consider a second opinion. And the reason is that this is not that common a disease. Despite the increased awareness of the disease in the community and among physicians, this is still a relatively rare disease. There’s only about 17,000 new cases in the US. It’s only one percent of all cancers and only ten percent of all blood cancers. And so it’s a relatively uncommon disease, and I think there’s so much new information out there that even practicing oncologists can’t always keep up with the new information.  In addition, they should be made aware or least the patient should be made aware of possible trials that are available to them. That’s how we’ve made all the progress in the treatment of this disease, is through clinical trials.”  So if this belief exists in the Multiple Myeloma specialist community, then why is there still such a disparity in outcomes?  Sorry folks, I can only speculate. Much of this difference must be because of the leading edge knowledge of the myeloma specialists at these exceptional facilitates, and their focus on supportive care.  They have a great offense(specialists) and defense(supportive care).    

Part of it may be that the disease is just so rare that the dissemination of this information would never reach the light of day if not for organizations like the IMF(International Myeloma Foundation).  How many people know that March is Multiple Myeloma awareness month?  The IMF has been at the forefront of this education process, but unfortunately the National Cancer Institute life expectancy numbers continue to lag those at the best institutions.  So if this life saving information is not reaching the myeloma patient community, how can we improve the awareness? 

In this day of the internet, Facebook and Twitter,  I therefore recommend that each of you send this post to  your Facebook friends and Twitter followers, just to let them know about Multiple Myeloma  and ask them to participate in the Myeloma Awareness Programs (Mambo for Myeloma and Songs For Life).  I will almost guarantee that one of the people you send this to will know someone with a myeloma patient in their circle of contacts who could benefit from this information. Because I have found that “Knowledge is power” and “Ignorance can kill!”  

You will find more information on multiple myeloma if you go to the web site www.myelomasurvival.com or follow me on twitter @grpetersen1.  God bless all who have to be on this journey/ editor@myelomasurvival.com

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