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Inspirational Stories

Virginia

CML Survivor

Claremont, CA

I have been living with chronic myelogenous leukemia (CML) since August 6, 1997. The way I see it, I’m alive today because of The Leukemia & Lymphoma Society (LLS). The pill I take each day that keeps my leukemia in remission exists today much because of research grants awarded to Brian Druker, M.D., PhD., of Oregon Health & Science University.

I went in for my annual physical that day in 1997 and when the blood work came back, my doctor called to inform me I had leukemia. That was my introduction to the world of oncology waiting rooms, survival statistics, grueling treatments and painful diagnostic tests. My life changed forever.

My pill, Gleevec, didn’t exist when I was first diagnosed, so I entered the world of Interferon and Ara-C treatment. I learned to inject myself with these two drugs, suffered debilitating side effects, endured life-threatening infections and blood transfusions, and learned to live my life one step at a time. I watched my hair swirl down the drain in the shower, coped with bone crushing fatigue, lost 38 pounds, dealt with spiking fevers as high as 105 degrees, and somehow ignored that I had only three years or so to live. Every day was a challenge.

Then the miracle happened. A clinical trial opened up for a new oral medication for CML just as my doctor was pulling me off the horrific treatment I had been subjected to for the previous year. I was admitted to the trial as Patient 15 at UCLA. The rest is history.

Gleevec was a major milestone and breakthrough in cancer treatment -- not just CML treatment -- all cancer treatment. It proved the theory that cancer cells can be targeted by a drug that kills them and leaves the good cells alone. The paradigm shifted to looking for cancer cell targets and then finding compounds to eradicate them. A decade after Gleevec got the go-ahead from the FDA (the fastest approval in the agency's history), there are scores of target drugs on the market to treat various forms of cancer. And while there were only around 30,000 CML survivors at any given time around the world before Gleevec, there are now hundreds of thousands of us living with CML. Yes, a miracle.

I became a volunteer for LLS when I learned that the grants for the research that saved my life were awarded to Dr. Druker by LLS over several years and that they had faith in this young scientist’s innovative ideas when other more traditional funders of research did not. I have run many marathons and fundraised for LLS since 2000 in the hopes that I can help bring about more miracles for more people like myself and improve the lives of those facing the challenges of living with cancer., I serve as mission captain for my Team In Training marathon team. My husband and I have raised over $370,000 since we began volunteering.

I also fervently support and volunteer for the LLS advocacy program because I want to help our nation’s leaders see that there is a growing population of people who must be in treatment with these prohibitively expensive drugs for the rest of their lives and that they desperately need help. I believe that no one should be forced to choose between eating and staying alive, and nowadays that’s what it comes down to for many people. I am honored to do what I can through being an advocate for patients and helping to see that laws are passed and regulations are in place to ensure patients have timely access to the care they need.

So, in my 18th year of surviving a disease I was told would kill me in three years, every day I wake up grateful to be alive and eager to “be the change I want to see in the world”!

Virginia