Philadelphia, Surrounding Counties, Delaware and Southern New Jersey
THE PHILLY CONNECTION
| A bridge to resources, support, education and the medical community for carcinoid and other neuroendocrine tumor (NET)patients and their advocates. |
What is Carcinoid? |
This rare cancer is usually a slow-growing neuroendocrine with tumors that can produce hormones that cause misleading symptoms such as flushing, wheezing, diarrhea, or abdominal pain. | |
| How is it diagnosed? |
People with carcinoid are often misdiagnosed as having menopause, rosacea, irritable bowel syndrome, Crohn's disease, acid reflux, or asthma. Often, a combination of a few simple blood and urine tests can accurately diagnose the disease, e.g., the 5-HIAA 24 hour urine test and the Chromogranin-A blood test. |
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| How is this cancer treated? |
There are a number of treatments available to patients and research into new drugs is ongoing. No one treatment regimen can manage all patients at all stages of the disease. Experts in the field agree that a combined (multi-disciplinary) approach is best - surgery, radiological intervention, biotherapies, clinical trials, chemotherapy, targeted therapies, and anti-tumor and anti-angiogenic agents are some of treatment options. |
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| Is there a cure? |
Carcinoid can be cured if caught very early with surgical removal of the tumor, but most times it is diagnosed much later in the disease process. Your donations will help fund valuable ongoing research to find a cure. |
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January 20, 2008 was a bitter cold day, one of those days in which 'mature' adults navigate the sidewalks gingerly.
Our kick-off meeting was held at an upscale dance studio in historic Head House Square in Philadelphia's Society Hill. In keeping with our mission to educate the Carcinoid/NET patient in the Delaware Valley and create awareness in the medical community and community at large, Nancy Gardner was our guest speaker. Nancy, who worked alongside Dr. Larry Kvols at the H. Lee Moffitt Cancer Center in Tampa Florida is currently on the faculty at the College of Nursing at Rutgers University and continues with her Carcinoid research having received a grant last year from the Neuroendocrine Research Foundation for the pilot study "Familial carcinoid tumors of the small intestine." Nancy also serves on the Novartis faculty as an "Expert" and "Key Opinion Leader" for Sandostatin. Maryann and Bob Wahmann of the Carcinoid Awareness Network traveled from New York to support our effort, and Teresa Lanza from the Pennsylvania Carcinoid Cancer Awareness Network, our sister group, also braved the cold. DVCC founding group members Deb Kilmartin and Shirley Jelinek helped the effort by spreading the word in their communities. And, we'd like to thank the twenty or so people that participated; some were curious - old-timers- others, newly-diagnosed looking for direction, answers, support and empathy.
Our kick-off meeting was held at an upscale dance studio in historic Head House Square in Philadelphia's Society Hill. In keeping with our mission to educate the Carcinoid/NET patient in the Delaware Valley and create awareness in the medical community and community at large, Nancy Gardner was our guest speaker. Nancy, who worked alongside Dr. Larry Kvols at the H. Lee Moffitt Cancer Center in Tampa Florida is currently on the faculty at the College of Nursing at Rutgers University and continues with her Carcinoid research having received a grant last year from the Neuroendocrine Research Foundation for the pilot study "Familial carcinoid tumors of the small intestine." Nancy also serves on the Novartis faculty as an "Expert" and "Key Opinion Leader" for Sandostatin. Maryann and Bob Wahmann of the Carcinoid Awareness Network traveled from New York to support our effort, and Teresa Lanza from the Pennsylvania Carcinoid Cancer Awareness Network, our sister group, also braved the cold. DVCC founding group members Deb Kilmartin and Shirley Jelinek helped the effort by spreading the word in their communities. And, we'd like to thank the twenty or so people that participated; some were curious - old-timers- others, newly-diagnosed looking for direction, answers, support and empathy.
In the medical community, the term "zebra" is universally understood as a reference to an orphan, or rare disease or condition, Carcinoid and other NETs being one of them. Physicians are taught the core tenet of medical diagnosis - to assume that the simplest explanation is usually the best, i.e., it is generally more productive to look for common rather than exotic causes for disease, hence the phrase "If you hear hoofbeats, think horses, not zebras."
Hence, the zebra is the icon for Carcinoid Cancer.
This site is dedicated in perpetuity to our friend and inspiration, Deb Kilmartin.
