Joannie was officially diagnosed with Philadelphia Positive Chronic Myelogenous Leukemia – CML.  She was told she had 2 – 4 years to live and was too old for a bone marrow transplant.  She had no siblings for a possible bone marrow match anyway.  So now “The Beast” was discovered, awake and roaring.  Their lives had changed forever.

Jerry, stayed by her side every day then each night at home, he researched leukemia, anatomy and physiology of blood, WBC, RBC, platelets and everything in between.  He searched for cures, treatments, prognosis, experts of all sorts, trials, any word of hope for our future together.  The information he found in 2001, was not very encouraging and confirmed a short life expectancy, there was no cure.  What a blow! 

After 2 ½ very painful and interesting days her extreme white blood count had been reduced to only 4 times normal.

Life was becoming better by the hour.  Her oncologist and hematologist surprised her by saying,

“If you have to have cancer, this is the one to have.”  

What?  

Her new oncologist then introduced her to a new drug, the first of its kind.   It had just been approved by the FDA 3 months before and accepted on the insurance formulary less than 2 weeks before.
This miracle targeted drug would extend Joannie’s life daily.  Her new prognosis:  Unknown on this drug, with such a short history, but it looked promising.  
 

Since then and every day for the rest of her life, she takes her required dose of a medication called a TKI.  It saves her life and challenges her still.  Daily, Joannie manages side effects, juggles her dosage, gets blood tests and visits her team of doctors regularly as required for monitoring.  Her PCR results still fluctuate but remain 0.005% and even though she is comfortable with these results she would love to be undetectable and eligible for treatment discontinuation (TFR).  

With those small inconveniences, she receives the blessing of LIFE itself. How could she not pay-it-forward?  But what about all those unanswered questions?  Surely, other newly diagnosed patients had questions about this rare cancer and this new treatment for CML? 

On November 8, 2003, a dear CML friend and Joannie co-founded what would become “CML Busters” a CML specific family support group, with the support of outside organizations.

Their first meeting brought 16 confused, scared, CMLers and their family members.  It was discovered each one had similar stories, many questions and all were taking the same targeted medication.

We traveled around the table each sharing a story of a journey to diagnosis and the unique challenges each was experiencing.  This model of peer to peer sharing proved to be the cement that holds this group together to this day.  As it turned out these newly diagnosed patients were part of the “first-generation guinea pigs” after the drug trials.  

Several of the CMLers took part in the risky drug trials held 2-3 years earlier.  Each one of these CML warriors is a TKI pioneer hero.  

For 16 years, each month, (197 months to date) CML Busters Facebook Support Group meets face to face with newly diagnosed CML patients, or long-standing members still in need of hints for living better with CML or just in need of a hug. The knowledgeable and experienced members hear each new story, share challenges or transitions, discuss and offer personal CML experiences.  

Their goal is to satisfy the important mission of empowering, educating, advocating, comforting, offering an understanding heart and giving hope.  

Each newly diagnosed person arrives in fear and uncertainty and leaves our meeting empowered to LIVE their new life with hope, better equipped to manage their disease and feel they are in control of their lives again!  CML Buster Support Group has grown to over 325 patients and their families.   On the second Monday of every month each warrior has their opportunity to pay it forward to the next generation of CML warriors.

Joannie has recently celebrated her 18th year after diagnosis!  She wishes she could say she was “undetectable” but “The Beast” still dwells within and raises its ugly head to remind her of its threatening presence.  Thank goodness for innovative new treatments because …
 

Instead of roaring, for now, "The Beast" is just snoring.