“When the doctor informed me that I had chronic myeloid leukemia and had five years to live, I told him that there were only a few things I needed to see, really needed to be alive for,” said Susan, a 62-year-old mother of two from Buffalo, NY. “I said, ‘I need to see my daughter graduate from college, both of my children get married and I need to see grandchildren. These are the only things I ask that you keep me alive for—for as long as it takes.’”
Almost 10 years after receiving the most shocking news of her life, Susan has lived to see all of these things, including the birth of her first grandchild a few months ago. It hasn’t been an easy journey, but it is one that Susan has embraced with the strength and fortitude that has earned admiration from fellow patients and her healthcare provider team.
Susan’s journey began with a diagnosis of overactive bone marrow, which prompted her body to produce too many red blood cells. Her physician initiated a treatment regiment to manage the issue. Almost two years into therapy, Susan’s health continued to decline and her doctor diagnosed her with CML.
CML is a cancer of the blood that is caused by a genetic defect that occurs when genetic material from two of the body’s chromosomes (9 and 22) swap places. Also known as the Philadelphia chromosome, CML accounts for 15-20 percent of all adult leukemias. The disease typically progresses through three phases. Patients tend to be diagnosed in chronic phase and progress through the accelerated phase to the potentially fatal blast phase. CML occurs in 1-2 instances per 100,000 people.
The day Susan was diagnosed, she began interferon therapy. “The nurse came in with the shot of interferon and told me that I could either learn how to administer treatment myself, or travel to the hospital everyday for my shot. At that point, God took over and I did it—I actually gave myself the injection; from that day on, whatever treatment I’ve been on, I’ve been able to administer it myself.”
Susan continued interferon therapy, gradually adding chemotherapy to the mix. Two treatments into the interferon/chemotherapy combination, Susan became violently ill. “My first summer with CML was horrible. I don’t think I got off of the couch. I was really sick and it was very, very scary for me and my family.”
In November 1999, Susan had a grand mal seizure, which she suspects was due to the high combination doses of interferon and chemotherapy injections. For six months, she was sidelined as her disease worsened.
In June 2000, several of Susan’s family members underwent bone marrow testing to determine whether they were a match for a bone marrow transplant, something her physician, Dr. Meir Wetzler of Roswell Medical Center, was hopeful could stop the progression of CML and lead to a healthier life for Susan. Unfortunately, no one in Susan’s family was a positive match and Dr. Wetzler placed Susan on the national and worldwide transplant registration lists. Over the course of several months, Susan and Dr. Wetzler followed up on several potential donor leads but were unable to find a perfect match.
In May 2001, Susan began taking Gleevec (iminitab), which had just been approved by the FDA. For almost a year, Susan responded well to the Gleevec treatment, when suddenly her body stopped responding to treatment. Susan struggled to retain her optimism as Dr. Wetzler worked to enroll Susan in clinical trials for investigational CML treatments. In 2002, with her symptoms worsening, Susan entered a clinical trial for AMN 107. This therapy was later approved by the FDA and is now marketed under the commercial name Tasigna.
A few months into the clinical trial, Susan’s CML went into remission and her health improved considerably. She began to enjoy life again and was hopeful that she’d live to see the important milestones she outlined at the beginning of her disease journey. Approximately 16 months after beginning the Tasigna clinical trial, Susan’s body once again stopped responding to therapy. Susan was tested for resistance. Her tests came back positive for the T315I genetic mutation, which renders tyrosine kinase inhibitor (TKI) therapies such as Gleevec and Tasigna useless in patients with the mutation.
Susan’s health rapidly deteriorated as she progressed through the three stages of CML—chronic, accelerated and blast. Dr. Wetzler continued to search for clinical trials for which Susan would be eligible as he simultaneously worked with her to manage symptoms of the disease.
In February 2007, Susan once again found hope in the form of a clinical trial for Omacetaxine, sponsored by ChemGenex. When Susan began the clinical trial, she was very sick, but hopeful that she would respond—and continue to do well—on Omacetaxine.
By December 2007, Susan’s CML was in full remission and she was once again hopeful that she would live to celebrate joyful milestones with her family.
Omacetaxine is a small molecule treatment that specifically targets the T315I genetic mutation. It is currently being evaluated in two clinical trials: a phase 2 trial for CML patients who have failed multiple TKI therapies, and a phase 2 trial for acute myelogenous leukemia (AML) patients.
Today, more than 15 months after she entered the Omacetaxine trial, Susan continues to do well on therapy and her CML remains in remission. She currently gives herself two injections of Omacetaxine for six days, and repeats the treatment regiment ever 28 days. Susan also sees her treatment team at Roswell regularly, a team she refers to as her second family.
“I was fortunate to find ChemGenex,” said Susan. “Clinical trials can be scary, but I don’t like to think of myself as a guinea pig. I’m a pioneer and helping to pave the way for other people.”
Susan is hopeful her story can help to instill hope in other CML patients. She is involved in the Buffalo chapter of the Leukemia & Lymphoma Society. Through the LLS, she talks with newly diagnosed CML patients who have many questions about what it’s like to live with the disease; Susan also helps her peers understand what types of questions they need to ask their healthcare providers and how they can be their own advocate and find strength in their experience.
“A lot of people can’t be their own advocates and feel like there is no one to help them. I’m not only a voice for myself, I’m also a voice for them and I’m passionate about helping others,” said Susan. “I haven’t met too many people with my disease who aren’t really strong, fighting people!” she exclaims. “I’m amazed when I take a moment to think about who God gives CML to and how they deal with it. Every day is a blessing and I try to make the most of it now that I’m able to.”
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