Living with CML Newsletter: Joannie Clements

Joannie lives with her husband Jerry in Costa Mesa, CA on the Pacific Coast of the USA.  She has 3 children, 5 grandchildren and 5 great grandchildren.
She is retired and has been an avid CML patient advocate for over 18 years.  She founded a CML Family Support Group in 2003, which continues to operate today.  In 2019, she and her husband established the “CML Buster Foundation”, a non-profit organization which will expand their mission and provide CML patients and their families tools for empowerment to improve their quality of life in the USA.  She functions as COB and CEO.
Joannie’s journey began on December 28, 2001, at the age of 59.  A blood test revealed a severely elevated white blood count of 357,000, a spleen the size of a football, a 26-pound weight loss and dropping fast!  Immediately admitted to the cancer floor in the hospital, she was dying, scared and confused. 
On the first few days of her 10-day stay, there would be a lot to process for her husband, her family and herself.  Jerry, her husband, held her hand through 2 bone marrow biopsies, hourly blood tests, and watched as the nurses and doctors hooked her up to blood transfusions and multiple IVs filled with wonderful liquids full of mystery potions and hopefully magic.  
9 – 2001 Before CML diagnosis
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.”  


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.  
Oh my God! … she felt she was the lucky one!!!  Imagine that!  A drug that might extend her life beyond 4 years!  Not a cure but hope rushed in and lifted spirits!  Now, would this new drug work on her and if so, for how long?   No matter how long it took or how difficult the journey, she decided that she would fight The Beast!   He wanted to take Joannie’s life, but she was a formidable opponent and The Beast would have to fight her for it with the help of her new weapon – (imatinib mesylate)!  

There was so much information to process in just a short amount of time.  There were so many heightened emotions with which to deal.  Continuous communication with friends and family members all over the U.S. some in Europe, with updates and status, was important and time-consuming. What about a second opinion?  What about the future?  What about the garage she had to clean out!  She had so many questions yet to be answered.
Placed on a drug that was designed to control her specific rare kind of Leukemia – CML, she kept in mind that this drug had only been invented 2 years earlier.  Neither longevity nor long term efficacy was yet known.  In trials, it had been proven to be about 80% effective in controlling CML with fewer and more manageable side effects than alternative chemotherapy.  She and Jerry would see about that.  Today there are at least 4 other treatment options available.

At first, she experienced many side effects.  She said that she had them all at one time or another except liver compromise.  Because this new innovative drug was her only option, she plowed through each side effect one challenge at a time.  For the first 4 years, she would experience 6-8 concurrently and allergic reactions to the drug. After several years her body accepted this lifegiving infiltrator.  Today only 3-4 side effects remain.  
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? 

Inspiring CML patients 

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.  
Gail, Bahija and Joannie: Friends for life
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
CML Buster Strong
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