Living with an Uncommon Cancer: A Carcinoid Patient’s Story

(BPT) - Ten years ago, Hollywood actress and producer Christina Simpkins was going about her regular activities – eating a healthy diet, writing, making films and practicing yoga. Then, Christina started experiencing symptoms that were nagging at first but soon became severe – including digestive problems, abdominal cramping, bone and muscle pain, unexplained weight loss and flushing (deep reddening of the head and neck).

The flushing was the most troubling of Christina’s symptoms as it was associated with rapid heart rate and drastic shifts in blood pressure, causing her to collapse on several occasions. Doctors told her the cause was probably hormonal, psychological (“panic attacks”) or even stress-related. After being misdiagnosed with irritable bowel syndrome, Christina took to searching online, which consistently returned terms like “neuroendocrine cancer” and “carcinoid syndrome.” Since neuroendocrine tumors are rare, she spoke to several doctors before finding one who agreed to order the necessary tests. As unsettling as it was, a liver biopsy confirmed the truth – Christina had a type of cancer called metastatic carcinoid.

Neuroendocrine tumors (NET), also known as carcinoid cancer, are a specific type rare type of cancer that can produce chemicals in the body called hormones. Carcinoid tumors are a subgroup of NET that typically arise in the gastrointestinal tract, and can spread to the liver and bones. Carcinoid syndrome is the set of symptoms that can occur with carcinoid tumors that produce hormones, and is associated with advanced or metastatic disease. With carcinoid syndrome, patients initially experience vague yet painful abdominal symptoms that become more pronounced as the tumor grows or spreads to other parts of the body. Flushing and diarrhea are the most common symptoms of carcinoid syndrome.

“The symptoms were very difficult for me, but it was the flushing that was the most troublesome,” said Christina. “That’s why it’s so important to me to tell my story and help spread the word about carcinoid cancer – to help other people who may be living with this rare disease. Perhaps hearing my story will make a difference, let them know that they aren’t alone, and that there is help.”

Since carcinoid tumors affect only two per 100,000 people worldwide, most doctors do not encounter them on a regular basis, and it is not uncommon for patients to be misdiagnosed. In fact, NET are generally slow growing and can be silent, with many people not showing symptoms for years. There is a treatment available called Sandostatin^® LAR Depot (octreotide acetate for injectable suspension), which can help reduce the flushing and severe diarrhea associated with carcinoid syndrome.

“With my very first injection of Sandostatin Immediate Release, I felt relief of certain symptoms. It was truly the first time in years where I felt a positive omen – that I was starting on the right path forward with my disease,” said Christina. “I have some nausea and fatigue with the Sandostatin, but I would take the fatigue over the flushing episodes any day! And it might sound strange, but I actually look forward to the monthly visits with my nurse for my Sandostatin LAR Depot injection. It gives me an opportunity to check in with her, share what’s been going on with me and ask questions. Knowledge, after all, is power.”

Christina knows firsthand that living with carcinoid syndrome is not easy and that her results may not be typical. But adhering to scheduled doctor visits helps her manage her flushing, enabling her to go about her daily activities. She also connects with other carcinoid cancer patients, volunteers for newly diagnosed patients and finds that sharing experiences with others allows her to feel less isolated.

“Some days are simply better than others, but I have wonderful support from my medical team, my friends and family and my partner, who knows when I am not well and reminds me to ‘take a knee and know it will pass,’” added Christina. “Being a carcinoid survivor is all about respecting my “new normal” and maintaining balance.”

Improved awareness of carcinoid cancer is crucial for a timely diagnosis since the symptoms are common to many other gastrointestinal disorders, such as irritable bowel syndrome or colitis. The average patient is diagnosed after five to seven years. Christina's 10-year journey has compelled her to lend her voice and help raise awareness about this disease for Worldwide NET Cancer Awareness Day (WNCAD), which takes place every year on November 10th."

For more information, please visit www.Sandostatin.com.

IMPORTANT SAFETY INFORMATION

Warnings and precautions:

• Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.

Before taking Sandostatin LAR Depot:

• Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemicagents, beta-blockers and bromocriptine.

Common side effects:

• Most patients experience side effects at some time. Some common side effects you may
• experience include:
• Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence
• Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness

Other information:

• Patients with carcinoids tumors and VIPomas shouldadhere closely to their scheduled
• return visits for reinjection in order to minimize exacerbation of symptoms. Patients with
• acromegaly should adhere to their return visit schedule to help assure steady control of
• GH and IGF-1 levels.

Please see enclosed full Prescribing Information.

Please see the full Prescribing Information.