The Multiple Myeloma “Catch 22”!  What is Wrong with this Picture?

For some myeloma patients they are caught in a CATCH 22.  CATCH 22 is when you are caught in a can’t win situation. There was a Vietnam War movie called CATCH 22.  In order to get out of Vietnam on a medical discharge you had to be insane, but if you tried to show them you  were insane they would not believe you and make you stay.  So what is the Catch 22 for some 25% of myeloma patients.

What is wrong with this Picture?

According to a recent study, it takes an average of 163 days from the first symptoms to diagnosis for myeloma, and 25% of patients take over 306 days to diagnose. 

The average life expectancy for myeloma patients if not treated  is 279 days.

No wonder the UK reports 1 in 5 patients die in the first 2 months, and 1/3 of the patients in the USA are gone by the second years. They basically  are dead at diagnosis!  We must find a way to get the patient awareness up from 3%, and find ways to improve  the General Practitioner’s dismal ability to diagnosis this  disease. The training of the GP must be improved to identity myeloma in a far more timely fashion.  We must find ways to get the word out to the family doctor.   And some of the doctors who take over a year to diagnose patients must be held to account.  

The only bright spot I see in this data is that if you can make it past the first year, you will live on average of 7 to 9 years not the 4 as noted in the most recent National Cancer Institutes SEER database.  Far more if you have a myeloma specialist on your team. The bad thing is that 20% or more of patients died in the first year from a delayed diagnosis.

Without a major Public Service Awareness Campaign our best approach is for EACH of us get this message out to our facebook, twitter or other social media contacts and give it to our family doctors.  Just Click the Twitter and Facebook icons at the end of this post. The United Kingdom’s National Institute of Health  has put out a pamphlet for family doctors, just CLICK HERE.  World renowned myeloma specialist Dr. Edward A. Stadtmauer of the University of Pennsylvania has a web based educational program for general practitioners and it should be required reading  CLICK HERE.  

Good Luck and may God Bless your families Cancer Journey.  For more information on mutiple myeloma go to www.myelomasurvival.com or you can follow me on twitter @grpetersen1.