HEARTLAND CARCINOIDS & NETs
Serving Neuroendocrine Cancer Survivors & Caregivers
Heartland Carcinoid/NETs Support Group
2901 Bluegrass Ct.
Columbia, MO 65201
ph: (573) 514-4089
fax: (302) 729-0582
Heartlan
Several studies are in progress to determine any connection between genetics and familial carcinoid and identify any gene(s) that may be a marker for development of carcinoid or neuroendocrine cancers. These are observational studies...one prospective and one retrospective.
Natural History of Familial Carcinoid Tumor - NIH - Observational Study
An Investigation of Small Intestinal Carcinoid Carcinoma in Families - Retrospective Case Studies
Ga68 PET/CT Scans have been found in Europe and Asia to be more sensitive and to show smaller tumors that the scans currently used in the US. The University of Iowa is preparing the clinical trial that may bring this new technology to the US with an FDA approval. Dr. Thomas O'Dorisio is heading the study. Vanderbilt University is also doing a clinical trial of the Ga68 PET/CT scans under the leadership of Dr. Eric Liu. Both these groups are conducting Safety trials for the FDA and participation in the trials is limited severely by the FDA guidelines for these trials. Contact Dr. O'Dorisio or Dr. Liu for more information. Watch for more news of this exciting new development.
Ga68 PET/CT scan for NET diagnosis and monitoring
Drug Eluting Bead Embolization -Beads are used to carry drugs instead of radioactive compounds. Process is the same as SIR-Spheres or Thera-Spheres. The product carried in the beads is different.
Peripheral Hepatic Perfusion (PHP) Therapy - Chemotherapy treatment for the liver where the major blood vessels of the liver are diverted during the chemotherapy allowing for the blood that has the chemotherapy drugs in it to be filtered before returning to the body. After the chemotherapy is completed, the liver is flushed and reattached to the blood vessels. This is being tried in an attempt to cut down the side effects of systemic chemotherapy when the target organ is only the liver.
Auto Liver Transplants - Innovative alternative approach to a liver transplant. The patient's own liver is removed, resected or treated with chemotherapy and returned to the patient's body. This approach is being investigated at the Neuroendocrine Tumor Clinic at LSU/Kenner (see Doctors and Programs) as it is thought to eliminate the wait for a suitable liver donor, rejections problems and more. See Dr. Saju Joseph's presentation at the 2009 Neuroendocrine Tumor Conference in New Orleans: Role Of Liver Transplantation In NETS: Autotransplant Techniques & Implications.
Two Phase Liver Resection - See the Carcinoid Program at the University of Nebraska on our Doctors and Programs page
Black Raspberry Powder shows promise for some patients. Beneficial effects in tumor suppression have been noted in studies conducted by the Ohio State University and Louisiana State University. Click the link above for more information.

For more studies in progress or recruiting see www.clinicaltrials.gov and enter keywords such as: neuroendocrine, islet cell, carcinoid, pancreatic neuroendocrine, paraganglioma, pheochromocytoma, etc.
Natural History of Familial Carcinoid Tumor - NIH - Observational Study
An Investigation of Small Intestinal Carcinoid Carcinoma in Families - Retrospective Case Studies
An Efficacy and Safety Study of Somatuline Depot (Lanreotide) Injection to Treat Carcinoid Syndrome - Phase III
Safety and Efficacy of Pasireotide Long Acting Release vs. Octreotide Long Acting Release in Patients With Metastatic Carcinoid Disease (LAR) - Phase III
Study Investigating MEN1 and SDHD in Familial Carcinoid Tumors - Observational Case Control, Prospective
Study of LX1606 in Subjects With Symptomatic Carcinoid Syndrome Not Managed by Stable-Dose Octreotide Therapy - Phase II (Effective dose study)
Combination Chemotherapy and Bevacizumab in Treating Patients With Advanced Neuroendocrine Tumors - Phase I for carcinoid; Phase II for Islet cell, Lung Cancer, Neoplastic Syndrome, Neuroendocrine Carcinoma of the Skin
Pazopanib in Treating Patients With Advanced Neuroendocrine Cancer - Phase II for Gastrointestinal Carcinoid Tumor, Islet Cell Tumor, Lung Cancer, Multiple Endocrine Neoplasia, Neoplastic Syndrome
Nelfinavir in Treating Patients With Metastatic, Refractory, or Recurrent Solid Tumors - Phase I for Colorectal Cancer, Gastrointestinal Carcinoid Tumor, Head and Neck Cancer, Islet Cell Tumor, Lung Cancer, Metastatic Cancer, Neuroendocrine Carcinoma of the Skin, Ovarian Cancer, Pheochromocytoma, Sarcoma, Unspecified Adult Solid Tumor, Protocol specific.
Irinotecan, Fluorouracil, and Leucovorin in Treating Patients With Advanced Gastrointestinal Cancer - Phase I
Everolimus and Vatalanib in Treating Patients With Advanced Solid Tumors - Phase I
Doxorubicin Beads in Treating Patients With Unresectable Liver Metastases From Neuroendocrine Tumors - Treatment of Patients With Hepatic Neuroendocrine Metastases Using Drug-Eluting Bead Embolization
Safety Study of Seneca Valley Virus in Patients With Solid Tumors With Neuroendocrine Features - Phase I Dose-Escalation Study of Seneca Valley Virus (SVV-001), a Replication-Competent Picornavirus, in Patients With Advanced Solid Tumors With Neuroendocrine Features
Pasireotide in Combination With RAD001 in Patients With Advanced Neuroendocrine Tumors - Phase I - Som 230 & Rad 001
Multicenter Study of IMC-A12 in Combination With Depot Octreotide in Patients With Carcinoid or Islet Cell Cancer - Phase 2, Multicenter, Two Tier Study of IMC-A12 in Combination With Depot Octreotide in Patients With Metastatic, Well or Moderately Differentiated Carcinoid or Islet Cell Carcinoma
Safety Study of Dacarbazine and Bortezomib in Melanoma and Soft Tissue Sarcoma - Phase I Trial of Dacarbazine and Bortezomib in Melanoma and Soft Tissue Sarcoma
Sorafenib in Combination With RAD001 in Patients With Advanced Neuroendocrine Tumors - Phase I Study of Sorafenib in Combination With RAD001 in Patients With Advanced Neuroendocrine Tumors (Neuroendocrine Tumor, Carcinoid Tumor, Pancreatic Neuroendocrine Tumor
Fentanyl Sublingual Spray in Treating Patients With Breakthrough Cancer Pain - Phase III - A Randomized, Double-Blind, Placebo-Controlled Multi-Center Study to Evaluate the Safety and Efficacy of Fentanyl Sublingual Spray (Fentanyl SL Spray) for the Treatment of Breakthrough Cancer Pain
Hepatic Arterial Infusion of Melphalan With Hepatic Perfusion in Treating Patients With Unresectable Liver Cancer - Phase II Study Of Hepatic Arterial Infusion Of Melphalan With Venous Filtration Via Peripheral Hepatic Perfusion (PHP) For Unresectable Primary And Metastatic Cancers Of The Liver
Erlotinib and Cetuximab in Treating Patients With Advanced Gastrointestinal Cancer, Head and Neck Cancer, Non-Small Cell Lung Cancer, or Colorectal Cancer - Phase I/II Clinical and Biological Evaluation of Combined EGFR Blockade With Erlotinib and Cetuximab in Patients With Advanced Cancer (Phase I) or Advanced Colorectal Cancer (Phase II)
Study of Sunitinib Malate Following Hepatic Artery Embolization - Phase II Study of Sunitinib Malate Following Hepatic Artery Embolization for Metastatic Gastrointestinal Neuroendocrine Tumors - Neuroendocrine Tumor, Islet Cell Tumor
Safety and Efficacy Study of In-111 Pentetreotide to Treat Neuroendocrine Tumors - Phase II & III - High Dose Indium-111 Pentetreotide Therapy in Somatostatin Receptor Expressing Neuroendocrine Neoplasms.
For more studies in progress or recruiting see www.clinicaltrials.gov and enter keywords such as: neuroendocrine, islet cell, carcinoid, pancreatic neuroendocrine, paraganglioma, pheochromocytoma
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Copyright 2009 Heartland Carcinoid/NETs Support Group. All rights reserved.
Heartland Carcinoid/NETs Support Group
2901 Bluegrass Ct.
Columbia, MO 65201
ph: (573) 514-4089
fax: (302) 729-0582
Heartlan