Saturday February 9, 2015, I attended the NCCEA Midwinter Neuroendocrine Conference. NCCEA is the the Neuroendocrine Carcinoid Cancer Education Association which was formed in 2012 to support the Colorado Carcinoid Cancer Support Group (CCCSG) and the Run for Hope 5K As a 501(c)3 tax exempt non-profit organization it allows NCCEA to raise funds to provide educational programs for Neuroendocrine Carcinoid Cancer individuals to help them in the fight to overcome cancer. The conference was held in a wonderful venue called the Wildlife Experience Museum which is part of University of Colorado South Denver.
Jeanne Lambert (carcinoid diagnosed 2004) introduced our moderator. Jeanne and her husband John have been the force behind our conferences and the Run for Hope and the NCCEA. They have announced that they are moving out of those jobs. The Run for Hope has been handed over to a more generic cancer organization and it looks like we will get very little funding from it. See below for an announcement about our midwinter conferences. Jeanne & John Lambert, we will miss your activity in our behalf greatly. Thanks, and we hope to see you at our next regular meeting.
Jeanne also announced that our coordinator for CCCSG, Lesley Compton is moving to Texas. Lesley is the person who recruited me into CCCSG and has worked on it with Jeanne since it started in about 2007. Lesley Compton, we will miss you very much. Good Luck in your move. Lela Selby and Cy Ball (myself) will be co-chairs of the group starting immediately. I am excited about this opportunity and hope that Lela and I can adequately fill Lesley’s shoes.
Our moderator was Dr. Tom Purcell, MD, PhD. Associate Professor, Division of Medical Oncology, University of Colorado. Dr. Purcell is also the Associate Director for Clinical Services of the University of Colorado Cancer Center and Executive Medical Director of Oncology Services at University of Colorado Hospital. He also happens to have been my consultant on treatment of my carcinoid cancer which led to my liver surgery. Yeah, Dr. Tom.
Dr. Purcell gave a short talk emphasizing the importance of exercise for cancer patients and a surprising point that even though Carcinoid is rare by number diagnosed each year, it is the second most prevalent gastrointestinal cancer because we live longer! The number of patients is still orders of magnitude smaller than the most prevalent gastrointestinal cancer so many cancer doctors and centers never or rarely see it.
Dr. Purcell also gave us the big news that University of Colorado Cancer Center will take over sponsoring/organizing our midwinter conference! The next conference is planned for February 6, 2016.
I am not going to try to describe each talk. They were all wonderful! The videos of the talks and pdfs of the powerpoints are here (CCCSG) and I encourage everyone interested in Carcinoid to watch them and/or look at the powerpoints. I will name each speaker and the main new things that I learned. Please remember that I have heard a number of speakers and read a lot about carcinoid before this conference.
J. Philip Boudreaux, MD FACS – Oeschner Medical Center (LSU). Changing Paradigms in Gastrointestinal Neuroendocrine Tumors. Dr. Boudreaux is a very well known part of the NOLA dream team that treats NETS.
His talk was about the surgical techniques used on carcinoid.
New to me was the description of the IRE (Irreversible Electroporation), also known as NanoKnife. This is similar to Radio Frequency Ablation that uses microwaves to “cook” tumors but it uses very high voltage electricity and theoretically causes less collateral damage. Also new to me, MIBG scans which are similar to octreoscans which I have had except that they do not depend on the tumors having octreotide receptors to capture the radioisotope. Instead, the MIBG is absorbed by the cell (if it is MIBG hungry). Although the tumors are not always hungry for this, it is might be an alternative for patients whose tumors do not have octreotide receptors. Also, Oeschner will get GA-68 scan and PRRT treatment this year.
Leigh Anne Burns, Registered Dietitan at LSU Health Sciences Center, Greater New Orleans area. Nutrition Management for Patients Living with Neuroendocrine Tumors. Leigh Anne is well known as the nutrition expert for carcinoid patients on the NOLA dream team.
The new item for me here was that the constipation which alternates with diarrhea for patients like me is usually caused by the removal of the gall bladder.
Christopher Lieu, MD – Assistant Professior, Division of Medical Oncology, University of Colorado School of Medicine. The Past, Present, and Future of NET Treatments.
I liked this talk very much, but as an overview, I had seen most before. Main new thing CT scans for carcinoid tumors should always triple phase. Mine have not always been. In conversation during a break, I asked Dr. Lieu about my bradycardia (from time to time my heart rate slows to as low as 35 bpm). He said that this connection (heart rate/carcinoid) is known but very rare. Maybe I won the lottery again?
Dr. Jeanette Durham, MD MBA – Professor, Radiology-Interventional, University of Colorado Hospital (UCH). Regional Therapy for Metastatic Neuroendocrine Tumors.
New to me: embolization should be used as a treatment after surgery not before (they surprised that mine was in the reverse order). Many doctors (including Dr. Durham) believe that the addition of chemo to embolization is not useful. They perform bland embolization (TAE – Transcatheter Arterial Embolization). I had chemoembolism (TACE – Transcatheter Arterial Chemoembolization).
Dr. Rodney F. Pommier, MD – Surgical Oncology, Oregon Health & Sciences. New Frontiers in Surgery for Neuroendocrine Tumors. Dr. Pommier is a very well known surgeon and researcher and speaker in NETS.
New and amazing things. Dr. Pommier performs the “discovery” or search for intestinal tumors with minimally invasive laparoscopy. If the tumors are found (about a 90% success rate), he will attempt the resection laparoscopically and only open up the patient if necessary.
Dr. Pommier now removes carcinoid tumors from the liver without removing large parts of the liver. He has discovered that he can simply make a cut into the liver to the tumor and “pop” it out (his words). This is unheard of and impossible with any other type of cancer. I know of two other surgeons who have done it but I do not know if they continue to do it. Half my liver was removed with a tennis ball sized tumor in it. The surgery would have been less dangerous if Dr. Pommier’s technique was known.
Dr. Pommier wrote an important paper on the octreotide protocol to prevent carcinoid crisis during surgery. My surgeons and anesthesiologists have used that paper at my insistence to develop a protocol for me. Dr. Pommier has further studied it and now believes that octreotide is not useful to prevent carcinoid crisis. I would caution everyone to stay with the protocols at least until his paper is published and tested by the other experts in the field. As far as I know, all other specialists in the field believe in using those protocols.
Lastly, Dr. Pommier is performing a study which seems to indicate that people with carcinoid syndrome are cognitively impaired (memory at least). His study also indicates that, if the syndrome is stopped by medication or surgery, the impairment goes away. This could be huge. The carcinoid support groups are filled with complaints of memory problems among us (me too). The study is still in progress and not near publication.
As you can see, just my take away from the conference was a lot of valuable info. I really, really encourage all with interest in this disease to watch the videos here: Colorado Carcinoid Cancer Support Group.
My quarterly blood tests are done and they still show stable, no progression.