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CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »CLINICAL TRIALS
Clinical Trials. This section contains references to information on clinical trials related to carcinoid cancer and neuroendocrine tumors. This section may not represent an inclusive list of all clinical trials that are in process or being planned worldwide. To get the most comprehensive results, CONSENSUS STATEMENTS AND GUIDELINES FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAA PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST. The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the UNDERSTANDING THE BIOCHEMICAL MARKERS Chromogranin A is a general marker for neuroendocrine tumors. Serotonin, measured in urine as 5 hydroxyindoleacetic acid (5HIAA), Elevated levels of 5HIAA is correlated with carcinoid syndrome and carcinoid crises. Prolong exposure of the heart valves to high levels of serotonin is associated with complications of the disease.LODGING AND TRAVEL
Joe’s House is an online nationwide lodging resource for cancer patients and their families who must travel away from home for medical treatment. The website lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount. Joe’s House can be reached toll-free at 1-877-563-7468 (1-877
SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMOR Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » LIVER METASTASES OF NEUROENDOCRINE TUMORS; EARLY REDUCTION Abstract BACKGROUND: Neuroendocrine tumours frequently metastasize to the liver. Although generally slowly progressing, hepatic metastases are the major cause of carcinoid syndrome and ultimately lead to liver dysfunction, cardiac insufficiency and finally death. METHODS: A literature review was performed to define the optimal treatment strategy and work-up in patients with neuroendocrineCARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »CLINICAL TRIALS
Clinical Trials. This section contains references to information on clinical trials related to carcinoid cancer and neuroendocrine tumors. This section may not represent an inclusive list of all clinical trials that are in process or being planned worldwide. To get the most comprehensive results, CONSENSUS STATEMENTS AND GUIDELINES FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAA PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST. The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the UNDERSTANDING THE BIOCHEMICAL MARKERS Chromogranin A is a general marker for neuroendocrine tumors. Serotonin, measured in urine as 5 hydroxyindoleacetic acid (5HIAA), Elevated levels of 5HIAA is correlated with carcinoid syndrome and carcinoid crises. Prolong exposure of the heart valves to high levels of serotonin is associated with complications of the disease.LODGING AND TRAVEL
Joe’s House is an online nationwide lodging resource for cancer patients and their families who must travel away from home for medical treatment. The website lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount. Joe’s House can be reached toll-free at 1-877-563-7468 (1-877
SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMOR Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » LIVER METASTASES OF NEUROENDOCRINE TUMORS; EARLY REDUCTION Abstract BACKGROUND: Neuroendocrine tumours frequently metastasize to the liver. Although generally slowly progressing, hepatic metastases are the major cause of carcinoid syndrome and ultimately lead to liver dysfunction, cardiac insufficiency and finally death. METHODS: A literature review was performed to define the optimal treatment strategy and work-up in patients with neuroendocrine CARCINOID-NEUROENDOCRINE TUMOUR SOCIETY–CANADA (CNETS Carcinoid-Neuroendocrine Tumour Society–Canada (CNETS-Canada) CNETS Canada provides support and education for Canadians on all aspects of NeuroEndocrine Tumours (NETs). We help Canadian NET patients seek and obtain personalized diagnostic and therapeutic options. We also advocate on behalf of individual patients and for policies to support CONSENSUS STATEMENTS AND GUIDELINES The publication of the first North American consensus guidelines for NET disease management was a major achievement for the carcinoid/NET community in 2010.. These guidelines include early detection procedures for diagnostic purposes, imaging, histopathology, biochemical evaluation, surgical procedures, and evidence-based treatments emphasizing a multidisciplinary team-based approach to UNDERSTANDING THE BIOCHEMICAL MARKERS Chromogranin A is a general marker for neuroendocrine tumors. Serotonin, measured in urine as 5 hydroxyindoleacetic acid (5HIAA), Elevated levels of 5HIAA is correlated with carcinoid syndrome and carcinoid crises. Prolong exposure of the heart valves to high levels of serotonin is associated with complications of the disease. FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAALODGING AND TRAVEL
Joe’s House is an online nationwide lodging resource for cancer patients and their families who must travel away from home for medical treatment. The website lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount. Joe’s House can be reached toll-free at 1-877-563-7468 (1-877
SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 WHAT HORMONES DO CARCINOID TUMORS SECRETE TO PRODUCE THE In general it can be stated that practically all carcinoid syndrome cases exhibit some increase in at least one of the many endocrine chemical products elaborated by the tumor and producing the syndrome. These include not only blood serotonin and urine 5HIAA but also chromogranin A, Neuron Specific Enolase, Pancreatic Polypeptide, Calcitonin, Substance P, Neurokinin Read more » COPING WITH CARCINOID DIARRHEA Coping with Carcinoid Diarrhea. Valerie Bennett, R.N. Primary Nurse GI Tumor Program. H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida. We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea. CONTINUING MEDICAL EDUCATION (CME) Optimizing Management of Carcinoid Syndrome in Patients with Neuroendocrine Tumors. 03/09/2018 - 03/08/2019 A POSSIBLE CURE FOR NEUROENDOCRINE CANCER: EXCITING UPDATE A Possible Cure for Neuroendocrine Cancer: Exciting Update! June 19, 2013. Back in September 2012 we shared the following: “For $1.6 million (1 million pounds) an oncolytic virus that has the potential to cure neuroendocrine cancer can be named for the donor. At Uppsala University in Sweden researchers are ready to start a clinical trialfor
CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more » CONSENSUS STATEMENTS AND GUIDELINES PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMOR Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAASURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 UNDERSTANDING THE BIOCHEMICAL MARKERS Understanding biochemical markers for neuroendocrine cancer, carcinoid cancer and carcinoid syndrome. DR. EBRAHIM S. DELPASSAND, 2021 LUNCHEON WITH THE EXPERTS Ebrahim S. Delpassand, MD, FACNM Chairman and Medical Director Excel Diagnostics and Nuclear Oncology Center, Houston, Texas Founder, Chairman of the Board, and CEO, RadioMedix, Houston, Texas Ebrahim S. Delpassand, MD, FACNM, Chairman and Medical Director at Excel Diagnostics & Nuclear Oncology Center in Houston, Texas and founder, Chairman of the Board, and CEO of Radiomedix in LIVER METASTASES OF NEUROENDOCRINE TUMORS; EARLY REDUCTION Abstract BACKGROUND: Neuroendocrine tumours frequently metastasize to the liver. Although generally slowly progressing, hepatic metastases are the major cause of carcinoid syndrome and ultimately lead to liver dysfunction, cardiac insufficiency and finally death. METHODS: A literature review was performed to define the optimal treatment strategy and work-up in patients with neuroendocrine LUPUS - CARCINOID CANCER FOUNDATION A chronic inflammatory connective tissue disease marked by skin rashes, joint pain and swelling, inflammation of the kidneys, inflammation of the fibrous tissue surrounding the heart (i.e., the pericardium), as well as other problems. Not all affectedCARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more » CONSENSUS STATEMENTS AND GUIDELINES PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMOR Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAASURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 UNDERSTANDING THE BIOCHEMICAL MARKERS Understanding biochemical markers for neuroendocrine cancer, carcinoid cancer and carcinoid syndrome. DR. EBRAHIM S. DELPASSAND, 2021 LUNCHEON WITH THE EXPERTS Ebrahim S. Delpassand, MD, FACNM Chairman and Medical Director Excel Diagnostics and Nuclear Oncology Center, Houston, Texas Founder, Chairman of the Board, and CEO, RadioMedix, Houston, Texas Ebrahim S. Delpassand, MD, FACNM, Chairman and Medical Director at Excel Diagnostics & Nuclear Oncology Center in Houston, Texas and founder, Chairman of the Board, and CEO of Radiomedix in LIVER METASTASES OF NEUROENDOCRINE TUMORS; EARLY REDUCTION Abstract BACKGROUND: Neuroendocrine tumours frequently metastasize to the liver. Although generally slowly progressing, hepatic metastases are the major cause of carcinoid syndrome and ultimately lead to liver dysfunction, cardiac insufficiency and finally death. METHODS: A literature review was performed to define the optimal treatment strategy and work-up in patients with neuroendocrine LUPUS - CARCINOID CANCER FOUNDATION A chronic inflammatory connective tissue disease marked by skin rashes, joint pain and swelling, inflammation of the kidneys, inflammation of the fibrous tissue surrounding the heart (i.e., the pericardium), as well as other problems. Not all affected CONSENSUS STATEMENTS AND GUIDELINES The publication of the first North American consensus guidelines for NET disease management was a major achievement for the carcinoid/NET community in 2010.. These guidelines include early detection procedures for diagnostic purposes, imaging, histopathology, biochemical evaluation, surgical procedures, and evidence-based treatments emphasizing a multidisciplinary team-based approach toCLINICAL TRIALS
This section contains references to information on clinical trials related to carcinoid cancer and neuroendocrine tumors. This section may not represent an inclusive list of all clinical trials that are in process or being planned worldwide. To get the most comprehensive results, as well as specific results, use different terminology when searching the Clinical Trials Read more » CARCINOID-NEUROENDOCRINE TUMOUR SOCIETY–CANADA (CNETS Canada Website Contact: Jackie Herman, President, CNETS Canada Tel: 844-628-6788 Email Contact: Enrico Mandarino, Executive Manager, CNETS Canada Tel: 844-628-6788 FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAA UNDERSTANDING THE BIOCHEMICAL MARKERS Understanding biochemical markers for neuroendocrine cancer, carcinoid cancer and carcinoid syndrome.SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015LODGING AND TRAVEL
Joe’s House is an online nationwide lodging resource for cancer patients and their families who must travel away from home for medical treatment. The website lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer adiscount.
COPING WITH CARCINOID DIARRHEA Valerie Bennett, R.N. Primary Nurse GI Tumor Program H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea. You know what happens when you put the food Read more » CONTINUING MEDICAL EDUCATION (CME) Optimizing Management of Carcinoid Syndrome in Patients with Neuroendocrine Tumors. 03/09/2018 - 03/08/2019 WHAT HORMONES DO CARCINOID TUMORS SECRETE TO PRODUCE THE In general it can be stated that practically all carcinoid syndrome cases exhibit some increase in at least one of the many endocrine chemical products elaborated by the tumor and producing the syndrome. These include not only blood serotonin and urine 5HIAA but also chromogranin A, Neuron Specific Enolase, Pancreatic Polypeptide, Calcitonin, Substance P, Neurokinin Read more » HOME - CARCINOID CANCER FOUNDATIONABOUTFOR PATIENTSFOR DOCTORSRESOURCESNEWSCONTACT The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »FIND A DOCTOR
Find A Doctor. Nationally and internationally recognized carcinoid and neuroendocrine tumor (NET) specialists are indicated by the word Specialist next to a physician’s listing. Click here to read about how doctors get included on the list. A REVIEW OF CARCINOID CANCER A Review of Carcinoid Cancer. This document was prepared in order to further the Carcinoid Cancer Foundation’s educational goals and inform you about the existence and characteristics of carcinoid cancer. While the information contained herein represents up-to-the-minute information about carcinoid cancer, it is not to be used as a substitute FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAAOUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more » 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMORCARCINOID NEUROENDOCRINE TUMORSYMPTOMS OF CARCINOID TUMORIS A NEUROENDOCRINE TUMOR CANCERNEUROENDOCRINE CARCINOID CANCER STAGE 4IS A CARCINOID TUMOR CANCERNETS CARCINOID CANCER Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more »SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the start of this study and during collection of urine. This fact has been know for over 3 decades. COPING WITH CARCINOID DIARRHEA Coping with Carcinoid Diarrhea. Valerie Bennett, R.N. Primary Nurse GI Tumor Program. H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida. We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea. HOME - CARCINOID CANCER FOUNDATIONABOUTFOR PATIENTSFOR DOCTORSRESOURCESNEWSCONTACT The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »FIND A DOCTOR
Find A Doctor. Nationally and internationally recognized carcinoid and neuroendocrine tumor (NET) specialists are indicated by the word Specialist next to a physician’s listing. Click here to read about how doctors get included on the list. A REVIEW OF CARCINOID CANCER A Review of Carcinoid Cancer. This document was prepared in order to further the Carcinoid Cancer Foundation’s educational goals and inform you about the existence and characteristics of carcinoid cancer. While the information contained herein represents up-to-the-minute information about carcinoid cancer, it is not to be used as a substitute FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAAOUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more » 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMORCARCINOID NEUROENDOCRINE TUMORSYMPTOMS OF CARCINOID TUMORIS A NEUROENDOCRINE TUMOR CANCERNEUROENDOCRINE CARCINOID CANCER STAGE 4IS A CARCINOID TUMOR CANCERNETS CARCINOID CANCER Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more »SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the start of this study and during collection of urine. This fact has been know for over 3 decades. COPING WITH CARCINOID DIARRHEA Coping with Carcinoid Diarrhea. Valerie Bennett, R.N. Primary Nurse GI Tumor Program. H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida. We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea.FOR PATIENTS
Excerpt 18: Experimental — Seize Their Weapons. Excerpt 19: Not Medically Necessary — Use Their Weapons. Excerpt 1: It’s Your Appeal. Excerpt 20: Rational for Denial — Mop up all Resistance. Excerpt 2: What an Appeal Is Not. Excerpt 3: An Appeal Is a Professional-Looking Document. Excerpt 4: A REVIEW OF CARCINOID CANCER A Review of Carcinoid Cancer. This document was prepared in order to further the Carcinoid Cancer Foundation’s educational goals and inform you about the existence and characteristics of carcinoid cancer. While the information contained herein represents up-to-the-minute information about carcinoid cancer, it is not to be used as a substituteCLINICAL TRIALS
Clinical Trials. This section contains references to information on clinical trials related to carcinoid cancer and neuroendocrine tumors. This section may not represent an inclusive list of all clinical trials that are in process or being planned worldwide. To get the most comprehensive results,OUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more » FREQUENTLY ASKED QUESTIONS The 5-year survival rate of a rectal carcinoid depends on the probability of its having metastasized at the time of removal. This in turn is related to the tumor’s size. If less than 1-cm diameter, fewer than 5% will have metastasized and if more than 2 cm in diameter, 75% will have metastasized. CONSENSUS STATEMENTS AND GUIDELINES DOI: 10.2967/jnumed.117.202275. The publication of the first North American consensus guidelines for NET disease management was a major achievement for the carcinoid/NET community in 2010 . These guidelines include early detection procedures for diagnostic purposes, imaging, histopathology, biochemical evaluation, surgical procedures, and ADDITIONAL RESOURCES ABOUT NUTRITION AND DIET: As shown in figure 1, the age at time of diagnosis for carcinoid patients responding to the nutrition survey is between 26 and 81 years of age. The average age is about 52. 62% were females, and 38% males. One of the questions was, what was the year of diagnosis and SCINTIGRAPHIC EVALUATION OF NEUROENDOCRINE TUMORS A second scintigraphic technique for the identification and localization of neuroendocrine tumors is via the administration of In-111-labeled OctreoScan (Mallinckrodt Medical, Inc., St. Louis, MO). The success of scintigraphic imaging with this agent is based upon the physiology of somatostatin receptors. CHROMOGRANIN A (CGA) REFERENCES The following is a collection of reference materials about Chromogranin A. The links in this document are to abstracts, unless noted. Chromogranin A, Neuron Specific Enolase, CEA, and Hydroxyindole Acetic Acid Evaluation in Patients with Neuroendocrine Tumors. Bajetta E, et al. Cancer 1999 Sep 1;86(5):858-65. “There appears to be a direct correlation between tumor burden Read more » WHAT IS AN OCTREOSCAN? What is an OctreoScan? October 17, 2015. An OctreoScan is fairly straightforward. While it cannot give an indication as to tumor size, it can indicate the extent of disease metastasis and show possible loci for tumors which may or may not have been suspected. Essentially what happens is this: about 4 to 24 hours prior to scanning, a Nucleartag
HOME - CARCINOID CANCER FOUNDATIONABOUTFOR PATIENTSFOR DOCTORSRESOURCESNEWSCONTACT The Carcinoid Cancer Foundation's mission is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient advocates.CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »FOR PATIENTS
Wishing happiness to all in our Facebook community who are celebrating June birthdays, anniversaries, and other special occasions. Sending virtual zebra-striped sweets in recognition ofFIND A DOCTOR
Nationally and internationally recognized carcinoid and neuroendocrine tumor (NET) specialists are indicated by the word Specialist next to a physician’s listing. Click here to read about how doctors get included on the list. FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAAOUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more »SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMORCARCINOID NEUROENDOCRINE TUMORSYMPTOMS OF CARCINOID TUMORIS A NEUROENDOCRINE TUMOR CANCERNEUROENDOCRINE CARCINOID CANCER STAGE 4IS A CARCINOID TUMOR CANCERNETS CARCINOID CANCER Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the COPING WITH CARCINOID DIARRHEA Valerie Bennett, R.N. Primary Nurse GI Tumor Program H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea. You know what happens when you put the food Read more » HOME - CARCINOID CANCER FOUNDATIONABOUTFOR PATIENTSFOR DOCTORSRESOURCESNEWSCONTACT The Carcinoid Cancer Foundation's mission is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient advocates.CARCINOID CRISIS
Carcinoid crisis and pseudoanaphylactic reactions: Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome.The crisis may occur suddenly, or it can be associated with stress, Read more »FOR PATIENTS
Wishing happiness to all in our Facebook community who are celebrating June birthdays, anniversaries, and other special occasions. Sending virtual zebra-striped sweets in recognition ofFIND A DOCTOR
Nationally and internationally recognized carcinoid and neuroendocrine tumor (NET) specialists are indicated by the word Specialist next to a physician’s listing. Click here to read about how doctors get included on the list. FINANCIAL ASSISTANCE The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has their own set of guidlines regarding approval for financial assistance. Advanced Accelerator Applications (AAA) has expanded its financial assistance programs for neuroendocrine tumor patients who are treated with Lutathera. For more information about AAAOUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more »SURVIVOR STORIES
Many blogs and personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more. Blogs and Stories Tom Bajoras: Surprised by Beauty On January 2, 2015 14 INSPIRATIONAL CARCINOID AND NEUROENDOCRINE TUMORCARCINOID NEUROENDOCRINE TUMORSYMPTOMS OF CARCINOID TUMORIS A NEUROENDOCRINE TUMOR CANCERNEUROENDOCRINE CARCINOID CANCER STAGE 4IS A CARCINOID TUMOR CANCERNETS CARCINOID CANCER Living with a rare disease is especially challenging on many levels. Carcinoid cancer and neuroendocrine tumor patients are acutely aware of these challenges – including getting a proper diagnosis and finding a physician who specializes in treating these cancers. These are the stories of carcinoid and NET cancer survivors who we find especially inspiring. A Read more » PREPARING FOR THE 24-HOUR URINE 5HIAA TEST PREPARING FOR THE 24-HOUR URINE 5HIAA TEST The old saying, “We are what we eat,” applies when a 24-hour collection for the urine 5HIAA test is being considered. The foods that contain the precursor of 5HIAA should be avoided for at least 24 hours prior to the COPING WITH CARCINOID DIARRHEA Valerie Bennett, R.N. Primary Nurse GI Tumor Program H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida We are going to talk about carcinoid disease and diarrhea. We really need to focus closely on this subject. First part of this is about digestion and diarrhea. You know what happens when you put the food Read more »FOR PATIENTS
Wishing happiness to all in our Facebook community who are celebrating June birthdays, anniversaries, and other special occasions. Sending virtual zebra-striped sweets in recognition of A REVIEW OF CARCINOID CANCER This document was prepared in order to further the Carcinoid Cancer Foundation’s educational goals and inform you about the existence and characteristics of carcinoid cancer. While the information contained herein represents up-to-the-minute information about carcinoid cancer, it is not to be used as a substitute for a visit with your doctor if there is any Read more »CLINICAL TRIALS
This section contains references to information on clinical trials related to carcinoid cancer and neuroendocrine tumors. This section may not represent an inclusive list of all clinical trials that are in process or being planned worldwide. To get the most comprehensive results, as well as specific results, use different terminology when searching the Clinical Trials Read more »OUR FOUNDER
Richard R.P. Warner, MD, Founder and Co-Medical Director of the Carcinoid Cancer Foundation and Retired Director of the Center for Carcinoid and Neuroendocrine Tumors at Mt. Sinai Hospital Dr. Richard R.P. Warner, along with his patients and family members, started the Carcinoid Cancer Foundation in 1968 to perpetuate his research relating to serotonin and carcinoid Read more » FREQUENTLY ASKED QUESTIONS Over 50 cases treated, over 10 years longest survival rate. For more information about pancreatic neuroendocrine tumors and adenocarcinoma we suggest that you visit the Pancreatica.orgwebsite. The familial occurrence of carcinoid is a recognized but exceedingly rare event. CARCINOID TUMORS AND THE CARCINOID SYNDROME: WHAT'S NEW IN Presented by Larry K. Kvols MD Professor of Medicine H. Lee Moffitt Cancer Center & Research Institute Tampa, FL Carcinoid Symposium 2002 Tampa, Florida April 12-13, 2002 Dianne Comstock: Our first speaker of the day is Dr. Larry Kvols who is accompanied by his two wonderful nurses – Valerie Bennett and Nancy Gardner. You will Read more » MEDICAL OPINION: WHEN TO START AND HOW TO TREAT METASTATIC MEDICAL OPINION: When to Start and How to Treat Metastatic Carcinoid by Richard R.P. Warner M.D. Medical Director of The Carcinoid Cancer Foundation Professor of Medicine Mount Sinai School of Medicine, New York, NY Updated 2009 Carcinoids are generally slow growing but they do vary from case to case, and some are more aggressive. The Read more WHAT IS AN OCTREOSCAN? An OctreoScan is fairly straightforward. While it cannot give an indication as to tumor size, it can indicate the extent of disease metastasis and show possible loci for tumors which may or may not have been suspected. Essentially what happens is this: about 4 to 24 hours prior to scanning, a Nuclear tag (about 6 Read more » ADDITIONAL RESOURCES ABOUT NUTRITION AND DIET: Presented by Monica E. Warner, M.S., R.D., C.D.N. Research Coordinator, Carcinoid Cancer Foundation, Inc., New York It is with deep sadness that the Carcinoid Cancer Foundation announced the passing of Monica Warner in August 2009. This 2008 update includes minor changes to the original lecture from year 2000. It includes results from a survey Read more » CHROMOGRANIN A (CGA) REFERENCES The following is a collection of reference materials about Chromogranin A. The links in this document are to abstracts, unless noted. Chromogranin A, Neuron Specific Enolase, CEA, and Hydroxyindole Acetic Acid Evaluation in Patients with Neuroendocrine Tumors. Bajetta E, et al. Cancer 1999 Sep 1;86(5):858-65. “There appears to be a direct correlation between tumor burden Read more »Facebook Twitter
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If you don't SUSPECT IT, you can't DETECT IT!1
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HOW TO STAY POSITIVE WITH CANCER Beth asked the doctor to remove her appendix while having surgery on her gallbladder. She had a feeling something bigger was going on . ..she was right.
Watch all of CCF’s 2020-21 Video Series here: https://www.carcinoid.org/for-patients/videos/ccf-2020-video-series/. LUNCHEON WITH THE EXPERTS CONTINUES What is palliative care and how does it differ from hospice care? Join us to learn more when STEVEN PANTILAT, MD,an
internationally recognized expert in palliative care, is the featured guest for CCF’S FACEBOOK LIVE LUNCHEON WITH THE EXPERTS on THURSDAY, JUNE 3 FROM 12 NOON TO 1 PM, EASTERN TIME. Dr. Pantilat is the Kates-Burnard and Hellman Distinguished Professor in Palliative Care and the inaugural Chief of the DIVISION OF PALLIATIVE MEDICINE at the University of California San Francisco (UCSF). READ MORELATEST NEWS
LISA YEN OF LACNETS RECEIVES THE 2020 MONICA WARNER AWARD Congratulations to Lisa Yen, NP, NBC-HWC, of LACNETS upon being selected as the 2020 Monica Warner Award recipient! The award, established by Novartis Oncology in 2009, is presented annually to “honor a patient, supporter, or caregiver who most embodies the passion, dedication, leadership, and spirit with which the late Monica Warner assisted patients, caregivers, and families affected by NETs.” READ MORE NEUROENDOCRINE TUMOR INFORMATION IN 10 LANGUAGES Did you know that the International Neuroendocrine Tumor Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA. NANETS OFFERS FREE, VIRTUAL NET PATIENT EDUCATION PROGRAMS IN MAY ANDJUNE
The North American Neuroendocrine Tumor Society, NANETS, is offering free, virtual NET Patient Programs in conjunction with their regional medical education conferences. Neuroendocrine tumor patients can participate in interactive programs with experts in the NET field. NANETS Virtual Regional Patient Programs are highly interactive, visually rich learning environments accessible from your computer, tablet, or mobile phone. READ MORE AND REGISTER NET SPECIALIST UPDATES A warm welcome to ROBERT RAMIREZ, DO (pictured left) and HAGEN KENNECKE, MD (pictured right) on their new appointments in Tennessee and Oregon, respectively. READ MORE NJ PROGRAM OFFERING FREE RIDES TO COVID-19 VACCINATION SITES Are you a resident of New Jersey who needs assistance getting to and from a vaccination site? NJ Transit has a new public-private partnership offering New Jersey residents complimentary rides to and from vaccination sites. The “VAXRIDE” program is funded through the generosity of sponsors led by Novartis and provides for approximately 11,000 NJ residents to receive up to two, free round trips to get vaccinated. READ MORE NANETS ISSUES POSITION STATEMENT ON COVID-19 VACCINATION FOR NET ANDNEC PATIENTS
A growing body of evidence suggests that patients with cancer have an increased risk of severe COVID-19 infection and related complications. NANETS, the North American Neuroendocrine Tumor Society, has issued a Position Statement regarding the plan for COVID-19 vaccination for patients with neuroendocrine neoplasms (NENs), including well differentiated neuroendocrine tumors (NETs) and poorly differentiated neuroendocrine carcinomas (NECs). NEN survivors and patients with NENs on observation or undergoing cancer treatment should be offered COVID-19 vaccination as long as any components of the vaccine are not contraindicated. READ MORE FACEBOOK LIVE PROGRAM ON CARCINOID SYNDROME: MANAGING BREAKTHROUGHSYMPTOMS
Are you newly diagnosed with carcinoid syndrome or have been living with the syndrome for many years? The Carcinoid Cancer Foundation presented a Facebook Live program on Carcinoid Syndrome on December 14th featuring neuroendocrine tumor (NET) expert LOWELL ANTHONY, MD, FACP, Chief of the Division of Medical Oncology at the UK Markey Cancer Centerin
Lexington, Kentucky, and NET patient MELANIE BEAN. The live program offered viewers the opportunity to ask questions of Dr. Anthony and Ms. Bean and covered living with carcinoid syndrome and how to manage breakthrough symptoms. If you were not able to join us for the live program, it is now available for viewing on CCF’s Facebook page here, https://www.facebook.com/271774129226/videos/2949405928614542. For anyone who is not on Facebook, it is available for viewing on CCF’s YouTube channel here, https://youtu.be/xSLCXjYEb1s.
This special program is made possible with sponsorship by Sun Pharmaceuticals Industries Inc. PROMISING DEVELOPMENTS IN THE PIPELINE FOR HIGH GRADE NEUROENDOCRINE TUMOR DIAGNOSIS AND TREATMENT “Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to AMAN CHAUHAN, MD, MEDICAL ONCOLOGIST, DIRECTOR OF NET THERANOSTICS, MARKEY CANCER CENTER(NCI
Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated. READ MORE CCF INFOGRAPHIC: 6 QUESTIONS TO ASK YOUR DOCTOR Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer? It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming. You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits. The first visit may be the most challenging, so It’s important to arm yourself with relevant questions. Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor. CLICK HERE TO DOWNLOAD THE INFOGRAPHIC.
CARCINOID SYNDROME WEBSITE The Carcinoid Cancer Foundation’s website WWW.CARCINOIDSYNDROME.ORG is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome. GUIDE TO UNDERSTANDING CARCINOID SYNDROME Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome! How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider? Read more in GUIDE TO UNDERSTANDING CARCINOID SYNDROME, from HEALTH MONITOR and the CARCINOID CANCER FOUNDATION: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf. REACHING THOSE WHO ARE STILL UNDIAGNOSED To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic — COULD YOU HAVE A NEUROENDOCRINE TUMOR— listing common symptoms and misdiagnoses. Please share this broadly in hopes of helping others get the proper diagnosis more quickly. DOWNLOAD THE INFOGRAPHIC HERE.__
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