- Diagnosed at age 52
- Treated with surgery nine times (5 requiring intubation/anesthesia)
- Limb perfusion at MD Anderson, Houston, Texas
- High-dose interferon
- Life-saving treatment on a clinical research study - ipilimumab (MDX-010)
Kathy Sparks had a mole on the back of her left forearm. “I hate going to the doctor, unless it’s really, really necessary,” she says. “It looked like a simple blood blister, but when it never went away, I went to a dermatologist in Issaquah. At the time it was removed, I saw that it was black and hard.”
Kathy grew up on the white sandy beaches of Florida, so she wasn’t all that surprised to find out her mole wasn’t a blister, but it “floored her” in December 2005 when she learned it was malignant melanoma.
“As a nurse, I knew this didn’t look good and I rushed to conclusions,” Kathy says. She became very depressed, suicidal in fact. Her melanoma biopsy showed ulceration, meaning it had broken through the overlaying skin so the outermost covering of skin was gone, and had a high mitotic rate, meaning it was reproducing fast and had likely spread.
A nursing friend told her about Seattle Cancer Care Alliance and Dr. John Thompson, a widely respected medical oncologist and co-director of the SCCA Melanoma Clinic.
Kathy had her mole removed, (called a wide resection), at University of Washington Medical Center, a parent institution of SCCA. She then began to pay attention to her energy level—what drained her and what “nurtured” her. “I was determined to not let this cancer, or anything else, determine my happiness,” she says.
A year later, her cancer returned and progressed to her lymph nodes. “There were only 40 melanoma cells on one node,” Kathy says, “but it meant I needed to take more drastic action. My surgeon (Dr. David Byrd) referred me to MD Anderson for lymph resection (removal of all the lymph nodes) under the arm, and a limb perfusion, which required my arm to be placed on by-pass while high doses of chemotherapy were administered.” There are only a few places in the world where this procedure is done.
However, the cancer returned again in six months and kept returning despite high-dose interferon treatments. Interferon is a protein produced by the immune system in response to an infection. The hope was that by receiving interferon by injection, it would either attack the cancer cells or help Kathy’s immune system attack the cancer cells. What it really did was “knock her for a loop,” she says. She received 29 out of 30 treatments and ended up being admitted to the hospital for an infection—a side effect of the treatment. She developed painful arthritis and “brain fog” symptoms. The interferon had no effect on her melanoma, which spread to her chest wall and jumped to her right breast.
“Melanoma is a very insidious disease,” Kathy says. “Repeated sunburns in my youth probably damaged my DNA and programmed the melanoma to show up in my 50s. Then my immune system didn’t recognize the melanoma as foreign and it went unheeded. I needed to find a way to tweak my DNA.”
In the spring of 2009, when her melanoma became stage IV, Kathy was told there weren’t any other treatment options available. She was given about a year to live, unless some treatment could be found. Her best hope would be to get into a clinical research study.
“I decided to get a second opinion,” Kathy says. She loved SCCA and wanted to stay within the system, so she consulted with Dr. Kim Margolin, another medical oncologist at SCCA who is very active in melanoma treatment research.
“Dr. Margolin tried hard to match me with a study, but it seemed I just didn’t qualify for most of them,” Kathy says. “I either had too much prior treatment, not enough, or the wrong type. My husband John and I were more concerned about my quality of life at that point, rather than quantity. We wanted a relatively healthy time for a few last trips to visit family and our good friends.”
Finally, Dr. Margolin was able to match Kathy with a clinical trial in the fall of 2009 that had minimal side effects and an 18 percent success rate, which is very high for most melanoma trials. “Dr. Margolin encouraged me to participate,” Kathy says.
Kathy enrolled in the trial and received treatment with ipilimumab (MDX-010). To her amazement, her tumors responded and shrank. No new tumors have been identified either. She is in the 18 percent success category and considered to be in partial remission.
“I’m now on a maintenance schedule, receiving the drug intravenously once every 12 weeks, indefinitely,” Kathy says.
Ipilimumab was approved by the FDA in March 2011. Kathy’s only side effects have been a rash with itching that requires sedating medication. Some patients in the study have experienced symptoms of colitis.
“The cancer had spread via the lymph and blood,” Kathy says, “so it could be anywhere. All the tumors so far – I believe there were 9 – were large enough to show up on CT. They are relatively small now, except for the one in my neck. It was about the size of an olive, but now, it is difficult to even palpate.”
Kathy gets CT scans before every treatment to monitor her tumors. In 2010 she will speak at the annual Melanoma Symposium in Seattle as a Stage 4 melanoma survivor.
“2009 was pretty dismal,” she says. “Hope for my survival was bleak. But 2010 is a lot different. Just knowing that hope came from out of nowhere is a huge experience for me! There are so many new drugs on the horizon right now. I believe having hope is essential to our survival.”
Thankfully, Kathy’s arthritis and brain fog symptoms seem to be going away, too.
“I have been so impressed by the Seattle Cancer Care Alliance team,” Kathy says. “Without them, I’m not sure I would still be alive.”