March 18, 2006

Celebrate Life

On Saturday March 18, 2006 SEA For Carcinoid hosted “Celebrate Life” a day long event held at the beautiful Descanso Gardens in La Canada/Flintridge California. The theme of this special event focused on living a Positive Life even with a diagnosis of carcinoid.

The first speaker of the day, Jennifer Jones MFT, presented tips and tricks for Living the Positive Life. In her talk she described several techniques to use in dealing with problems and how to choose the method appropriate for you.

The group enjoyed either a narrated tram ride or a walking tour of the beautiful gardens during the 10 o’clock hour. Though it was cold (for California where we are all spoiled) everyone seemed invigorated when they returned to the classroom for the remaining presentations.

Nancy O’Hagan, a metastatic carcinoid patient, founded the Caring for Carcinoid Foundation. She outlined the group’s “3-step research road map to unlock the genetic causes of carcinoid and develop novel, targeted therapies”. The Caring for Carcinoid Foundation designed this research road map based on guidance from their Board of Scientific Advisors. The members of the Board of Scientific Advisors are pioneers in genetically-based research for carcinoid and other cancers, including pancreatic endocrine, lung, and gastrointestinal stromal tumors. Their work has contributed to the launch of several new targeted cancer treatments. The research road map of the Caring for Carcinoid Foundation is based on a multi-disciplinary view of scientific research and successful models of cancer drug discovery. The Foundation has already awarded over $1,000,000.00 in research grants to leading scientists.

Andrew Leiter, M.D. is an internationally recognized authority on how gastrointestinal endocrine cells differentiate. Dr. Andrew Leiter was a refreshingly down to earth speaker and captured the attention of everyone in the room at Descanso Gardens. Although his presentation was highly technical in some respects, Dr. Leiter presented the overall concept in a manner that made it easy for all patients to grasp.

Dr. Leiter shared his background with the audience and then went on to speak of his current interests in the field of medical research. He then went on to detail his lab's current work on gut hormones. One of the 'unexpected' outcomes of this research was to discover that mice, which had been specially bred for his research, went on to develop Carcinoid tumors. Dr. Leiter and his colleagues were fascinated by this outcome and understood the importance of such an event . . . and thanks to the collaboration of the Caring for Carcinoid Foundation with Dr. Leiter, he plans to research how these specially bred mice came to develop Carcinoid tumors. Dr. Leiter spoke about the role genetically altered mice play in his research. This holds promise in the search for the cause and hopefully a cure for the disease.

Two things were very apparent after listening to Dr. Leiter. First, knowing that this research is being carried out by Dr. Leiter and other concerned researchers AND that the "incidental" or even "accidental" finding of the development of carcinoid tumors in these mice raised some 'interest' leaves all of us with a lot of HOPE for the future of carcinoid patients. Second, that the Caring for Carcinoid Foundation’s funding of in-depth research makes it possible to continue this type of research and pursue what might otherwise be considered an incidental and forgotten finding.

After lunch it was the patient’s turn.

“Facing Surgery with a Positive Outlook” - Giovanna Imbesi discussed techniques for preparing for surgery and the use of music and having the doctor read a life affirming,positive statement at the start and end of the procedure. Giovanna provided a number of very helpful suggestions, sharing with us her preparation before surgery (sharing her picture board and blanket and affirmation reading) Her presentation was much appreciated.

“Living Life to Its Fullest – Making Each Day Count” - Nancy Thiege, a carcinoid patient with bone mets, gave a very inspirational talk about the changes she had to make to continue living her life.

Lisa Osowski, MS, RD, oncology dietitian, spoke on dietary issues for carcinoid patients. Lisa has compiled a very thorough presentation on recommendations for carcinoid patients. She also presented a report of Monica Warner’s list of foods that have been noted by some patients to exacerbate the symptoms of the syndrome in those with carcinoid (she noted that as with most things in life it’s not the same with everyone). Lisa advised to keep a list of foods that cause discomfort and try to stay away from them.

The last speaker of the day was Mia Tepper, BA, a representative from Inter Science Institute which has developed a test to monitor the level of octreotide levels in the blood for use in optimizing the therapy. The method was developed with the help of Dr. Eugene Woltering.

At the end of this busy day patients and families had more time to enjoy the beatiful gardens. The whole day was truly a positive experience.

See photos of our March 18 event at Descanso Gardens.