Noteworthy


         


What's new?

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FOR NEWS FOR MEDICAL PROFESSIONALS CLICK HERE

Especially for Patients

  • New Clinical Trial:Natural History of Familial Carcinoid Tumor
  • NEW: MNYCSG NEWSLETTER --- A MUST READ !!!
    The latest Metro New York Carcinoid Support Group Newsletter is now available.
    This newsletter is the May 2008 edition. 
    This issue has information about CCF's 11th annual patient symposium  held on April 13 in NYC,  and the Pennsylvania Carcinoid
    Cancer Advocacy Network
    (PCCAN), in cooperation with the Carcinoid CancerAwareness Network, Inc (CCAN) held their patient conference on Saturday, April 26t ..........., and much more.
    To contact the author of this fabulous newsletter click on the following link (Jim Weiveris) For past newsletter and other relevant information visit the MNYSG website at http://www.carcinoid.us
  • Diaper Under the Desk
    Advise for carcinoid/nets with the syndrome
    Source:; Google/
  • THE MERRILL FAMILY HELD THEIR THIRD FUNDRAISING EVENT The B3 Affair, San Diego, CA  ON MARCH 7, 2008
    in memory of Lois Merrill to further the CCF and carcinoid community's goals to increase  AWARENESS, EDUCATE PATIENTS AND MEDICAL PROFESSIONALS, AND SUPPORT RESEARCH,............. with the ultimate goal of finding a cure.
    THIS EVENT BROUGHT IN $ 28'000 .


    B3Logo

    Special thanks to Angela Merrill, her family, and friends.

  • THE DEVEREAUX AND MURPHY FAMILIES HELD THEIR SECOND The Zebra Ball, Chicago, IL   ON FEBRUARY 9 IN HONOR OF PATRICIA MURPHY WHICH BROUGHT IN $ 40,000.

    .ZB

    View pictures and slide show from this amazing fundraising affair
    THUMBNAILS
    http://www.flickr.com/photos/mewarner/sets/72157603899028791/


    SLIDE SHOW:
    http://www.flickr.com/photos/mewarner/sets/72157603899028791/show/

    A heartfelt thank you to all who participated and continue to support all our goals. AWARENESS, EDUCATION, RESEARCH , HOPE AND A LONG GOOD QUALITY LIFE.......WITH A CURE DOWN THE ROAD.
  • NEW: Video recordings from The Carcinoid Cancer Awareness (CCAN) 3 rd annual  patient conference November 11, 2007, is now available online. Access and view them from their website. http://www.carcinoidawareness.org/
    (for more videos and lecture transcripts since year 2000, please see our Lectures page)

  • NEW Support Groups
    DVCCzebraBIt's All About The Stripes
    Delaware Valley Carcinoid & NET Connection (Philly Connection) A new group supporting carcinoid and neuroendocrine tumor patients and their advocates with the opportunity to join others to gather information and share experiences.This group serves the Delaware Valley which encompasses Philly and the five surrounding counties, Northern Delaware, and southwestern NJ.(New Jersey communities nearby Philadelphia are welcome and encouraged to attend.)
    For meeting schedule and location visit their website http://www.phillycarcinoid.org/
    For more information contact Suzi F. Garber (Founder, patient and advocate) at info@phillycarcinoid.org
  • NEW Colorado Carcinoid Cancer Support Group A support/advocacy group started in 2008 to share experiences and information, to network, to educate health care providers, and  spread public awareness of carcinoid/NETs. For more information contact::
    Lesley Stabinsky Compton PhD
    ronnierc1@msn.com
  • Conference Video Recordings
    Carcinoid NeuroEndocrine Patient and Physician Annual Conference
    September 27-29, 2007 Norfolk, VA
    To view the conference recordings, Click here
    NOTE:These videos are best viewed with ADOBE FLASH PLAYER.
    If you are unable to view pictures of the lecturers(from high speed broadband connection) make sure that you use Adobe Flash Player (to download click here )and that Real Player is disabled.

    (for more videos and lecture transcripts since year 2000, please see our Lectures page)
  • Novartis Oncology launch of a new online program for people with carcinoid cancer.  
    This new program, Carcinoid Link, provides enrollees with a series of customized E-mails and online support resources to educate them about metastatic carcinoid cancer.  Immediately upon enrollment, participants will also receive an article about the importance of biochemical marker monitoring, including excerpts from an in-depth interview with carcinoid specialist Dr. Larry Kvols.
    Please click on the link below to learn more about Carcinoid Link and how to sign up online.  Please feel free to forward this link to all of your members so they can benefit from the program as well.   www.CarcinoidLink.com/learnmore
  • From the Medical Director of CCF
    LETTER OF MEDICAL NEED AND EXPLANATION FOR UNUSUAL BLOOD TESTS BEING USED ROUTINELY

    Note: The test for Octreotide ( Sandostatin) blood levels is still considered experimental by most insurance companies and may therefore pay for it.
    For more information regarding this test contact InterScience Institute
  • NEW CLINICAL TRIALfor neuroendocrine patients:
    Location and Contact Information Please refer to this study by ClinicalTrials.gov identifier  NCT00501540
    United States, Wisconsin       
    University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, Madison,  Wisconsin,  53792,  United States;
     Recruiting Cancer Connect  800-622-8922 
    Kelly Richie  608-263-7283 
    Kyle D Holen, MD,  Principal Investigator


    Study chairs or principal investigators:
    Kyle D Holen, MD,  Principal Investigator,  University of Wisconsin Paul P. Carbone Comprehensive Cancer Center   
    Herbert Chen, MD,  Study Chair,  University of Wisconsin Paul P. Carbone Comprehensive Cancer Center
    For more information
    Click here
  • Read this fascinating description by a patient who has undergone the LU-177 isotope treatment in Australia.
    Eric's carcinoid journey and experience with LU-177 treatment


    Also visit Eric's home page for more information about Eric.
  • "US Pet Scan" Progress Notes July 2007
    Letter from
    Stanley J. Goldsmith, MD
    Director of Nuclear Medicine
    Professor of Radiology and Medicine
    New York Presbyterian Hospital-Well Cornell Medical Center
    New York, NY
    Progress Notes February 26, 2006:
    The first of its kind in North America, the 11C-5-HTP-PET scan also known to the carcinoid community as the PET SCAN PROJECT (not to be confused with the standard FDG PET scan) is now in clinical trials since December 2005. We are happy to announce that the scan IS WORKING and the first results from the ongoing trials was presented at the Carcinoid Cancer Foundation's patient symposium on April 2 at Mount Sinai Hospital in New York City.

    Due to the generosity of hundreds of members of the carcinoid community from coast to coast, with a matching grant from The Carcinoid Cancer Foundation, a new 11C-5-HTP-PET scan will be available for the first time in the United States. A total of $30,000 enabled Shankar Vallabhajosula, Ph.D., chief of radiochemistry at Cornell University's Weill Medical College, Citigroup Biomedical Imaging Center (CBIC), to officially begin a research project entitled Synthesis of [11C] 5-Hydroxy Tryptophan (HTP)in December 2004 (See for more information).


For Medical Professionals
New Peer Review Articles

  • Long-term survival after pancreatoduodenectomy for pancreatic adenocarcinoma: is cure possible? (Abstract)

    Schnelldorfer T, Ware AL, Sarr MG, Smyrk TC, Zhang L, Qin R, Gullerud RE, Donohue JH, Nagorney DM, Farnell MB.

    Ann Surg.
    2008 Mar;247(3):456-62Division of Gastroenterologic and General Surgery; Mayo Clinic, Rochester, MN 55905, USA.

    CONCLUSION: Pancreatoduodenectomy for adenocarcinoma in the head of pancreas can provide long-term survival in a subset of patients, particularly in the absence of lymph node metastasis. One of 8 patients can achieve 10-year survival with a potential for cure.
    PMID: 18376190 [PubMed - indexed for MEDLINE]

  • NEW Early and Late Results of Valvular Surgery for Carcinoid Heart Disease
    Javier G. Castillo, Farzan Filsoufi, Parwis B. Rahmanian, Anelechi Anyanwu, Jerome S. Zacks, Richard R.P. Warner, David H. Adam
    Journal of the American College of Cardiology
    Volume 51, Issue 15, 15 April 2008, Pages 1507-1509
    Pages 1507-1509
    Full Text
  • NEW  Bronchopulmonary Carcinoid: Phenotype and Long-term Outcome in a Single-Institution Series of Italian Patients (Full Text PDF)
    Massimo Rugge, Matteo Fassan, Roberto Clemente4, Giovanna Rizzardi,
    Luciano Giacomelli, Gianmaria Pennelli, Claudia Mescoli1, Daniela Segat, and Federico Rea
    Clinical Cancer Research 14, 149-154, January 1,
    2008. doi: 10.1158/1078-0432.CCR-07-1631
  • NEW
    The European Neuroendocrine Tumor Society  ENETS held their
    FIFTH annual conference in Paris
    on March 6-8 2008 in Paris.
    The program  included the following topics; Test TNM cases; modeling MEN X; minimal requirements for work-up and diagnosis; pitfalls in NET diagnosis and treatment; and, inherited tumors
    The Paris meeting included two abstract sessions, one for basic science, the other for clinical research. Please continue to visit the ENETS website for more information.
  • NEW
    ENETS Consensus Guidelines for the Diagnosis and Treatment of Neuroendocrine Gastrointestinal Tumors
    Part 2 - Midgut and Hindgut Tumors
    Published in Neuroendocrinology Special Issue: 2008, Vol. 87, No. 1
    Editor(s):  de Herder, W.W. (Rotterdam);   O'Toole, D. (Dublin);   Rindi, G. (Parma);   Wiedenmann, B. (Berlin) Click on each Editors name and get additional neuroendocrine related articles.

    Readers will be able to find answers to debated questions for specific tumors, such as the diagnostic procedure for midgut classic carcinoids, follow-up for appendix carcinoids, or the algorithm for liver metastasis treatment of patients with extrahepatic spread from gut neuroendocrine carcinomas.

    Table of Content
    For full text articles contact CCF at   carcinoid@optonline.net

  • Population-based study of islet cell carcinoma (Full Text)
    Online full text
    Yao JC, Eisner MP, Leary C, Dagohoy C, Phan A, Rashid A, Hassan M, Evans DB. Department of Gastrointestinal Medical Oncology, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, Texas 77030, USA. jyao@mdanderson.org
    Ann Surg Oncol. 2007 Dec;14(12):3492-500. Epub 2007 Sep 26.

    CONCLUSION: Patients with malignant pancreatic neuroendocrine tumors commonly present with advanced disease. Although, curative resection is not frequent, survival benefit may be obtainable with aggressive surgical management even in the face of metastatic disease.


    Note: Acknowledgments Supported by gifts from Raymond Sackler, the J. Stuart Foundation, and the Carcinoid Cancer Foundation.
  • Bronchopulmonary Carcinoid: Phenotype and Long-term Outcome in a Single-Institution Series of Italian Patients
    Massimo Rugge1,4,5, Matteo Fassan1, Roberto Clemente4, Giovanna Rizzardi2, Luciano Giacomelli5, Gianmaria Pennelli1,4, Claudia Mescoli1, Daniela Segat3 and Federico Rea2
    Clinical Cancer Research 14, 149-154, January 1, 2008. doi: 10.1158/1078-0432.CCR-07-1631

    Requests for reprints: Massimo Rugge, Cattedra di Anatomia Patologica, Università degli Studi di Padova, Istituto Oncologico Veneto-IRCCS, Via Aristide Gabelli, 61, 35121 Padua, Italy. Phone: 39-0498-272-252; E-mail: massimo.rugge@unipd.it .

    Purpose: The histologic distinction between low-grade typical and intermediate-grade atypical bronchopulmonary carcinoids basically lies on cellular differentiation, mitotic activity, and presence of "neoplastic" necrosis; at single patient level, however, none of these features enables a reliable prediction of the clinicopathologic outcome.

    Conclusions: Mib1 and Bcl2 significantly discriminate between recurrent versus nonrecurrent tumors, producing a biologically plausible, diagnostically suitable immunohistochemical pattern.

  • Neuroendocrine Tumor Cell Growth Inhibition by ZM336372 through alterations in multiple signaling pathways
    (Surgery 2007;142:959-64.)
    Kunnimalaiyaan M, Ndiaye M, Chen H. Endocrine Surgery Research Laboratories, Section of Endocrine Surgery, Department of Surgery, Madison, Wisconsin, USA. kunni@surgery.wisc.edu

    BACKGROUND: We have shown previously that activation of the Raf-1/mitogen-activated protein kinase (MEK)/extracellular signal-regulated kinase (ERK)1/2 signaling pathway by ZM336372 inhibits carcinoid cells growth. In the present study, we further characterize the molecular details of the growth inhibition by the signaling-based compound ZM336372 in neuroendocrine neoplasms (NENs). METHODS: NEN cells were treated with ZM336372 (20 to 100 mumol/L) or carrier (DMSO). Western Blot was used to determine the activation of the Raf-1/MEK/ERK, other pathways activation, and cellular bioactive hormone production.

    CONCLUSION: This is the first description of a novel compound ZM336372 that regulates multiple pathways in NEN cells.
  • Neuroendocrine Tumors
    RADIOEMBOLIZATION FOR NEUROENDOCRINE HEPATIC METASTASES
    (Abstract)

    Andrew S. Kennedy; Richard Warner, Patrick McNeillie,

    William A. Dezarnl, Doug Coldwell, Charles Nutting , Dennis

    Carter , Ravi Murthy, Steven Rose, David Liu, Carroll

    Overton, Riad Salem

    Cancer Investigation, 25(S 1):55-56,2007

    ISSN: 0735-7907 print/ 1532-4192 online


  • Surgery in malignant pancreatic neuroendocrine tumors.(Full text)
    Abstract
    J Surg Oncol. 2007 Oct 1;96(5):397-403
    Nguyen SQ, Angel LP, Divino CM, Schluender S, Warner RR.
    Department of Surgery, Division of General Surgery, The Mount Sinai School of Medicine, New York, New York 10029-6574, USA. scott.nguyen@mountsinai.org
    BACKGROUND: Because of their rarity and indolent nature, optimal management of malignant pancreatic neuroendocrine tumors remains controversial. The purpose of this study is to review a series of patients with these tumors and investigate the role of surgery in the treatment. METHODS: A retrospective study of 73 patients (ages 24-86 years; 36 women) undergoing treatment at a tertiary academic medical center was performed. Patient demographics, diagnostic tests, operations, pathologic findings, adjuvant treatments, and survival were reviewed. RESULTS: Seventy-four percent of patients had advanced disease with hepatic metastases and 30% had functional tumors. Fifty-seven percent of the patients underwent pancreatic resections. Two 60-day mortalities occurred and the postoperative complication rate was 27%. Overall 5-year survival rate was 44%. There was no difference in survival between patients with functional and nonfunctional tumors. Patients undergoing resection, even in metastatic disease, had better survival than patients who had no resection (60% vs. 30%, P = 0.025). Recurrence occurred in 20% of patients who underwent a curative resection.
    CONCLUSION: Patients with malignant pancreatic neuroendocrine tumors commonly present with advanced disease. Although, curative resection is not frequent, survival benefit may be obtainable with aggressive surgical management even in the face of metastatic disease.
  • Chemoembolization and Bland Embolization of
    Neuroendocrine Tumor Metastases to the Liver
    (Full text)
    J Vasc Interv Radiol. 2007 Jul;18(7):847-55
    Ruutiainen AT, Soulen MC, Tuite CM, Clark TW, Mondschein JI, Stavropoulos SW, Trerotola SO.
    Division of Interventional Radiology, University of Pennsylvania, 1 Silverstein, Philadelphia, PA 19104, USA.
    (Abstract)
    CONCLUSIONS: Chemoembolization was not associated with a higher degree of toxicity than bland embolization. Chemoembolization demonstrated trends toward improvement in TTP, symptom control, and survival. Based on these results, a multicenter prospective randomized trial is warranted
  • ENETS held its 4th Annual Conference in Barcelona, Spain, 15-17 March 2007. The conference covered topics such as the application of the ENETS Guidelines to clinical practice; rare hereditary diseases and endocrine tumors; NET imaging and surgery; and new therapies and clinical trials. A summary of this conference can be viewed in their latest NEWS LETTER.
    ENETS 2007 Consensus Guidelines for the Management pf Patients with Digestive Neuroendocrine tumors. Part1 Stomach, Duodenum and Pancreas
    For access to full text of these guidelines please contact CCF at carcinoid@carcinoid.org . Please specify which article you are interested in
  • Recommendations for radioembolization of hepatic malignancies using Yttrium-90 microsphere brachytherapy.
    A consensus panel report from the radioembolization brachytherapy oncology consortium
    Int. J. Radiation Oncology Biol. Phys., Vol. 68, No. 1, pp. 13–23, 2007
    Full Text
    PURPOSE: To standardize the indications, techniques, multimodality treatment approaches, and dosimetry to be used for yttrium-90 (Y90) microsphere hepatic brachytherapy.
    METHODS AND MATERIALS: Members of the Radioembolization Brachytherapy Oncology Consortium met as an independent group of experts in interventional radiology, radiation oncology, nuclear medicine, medical oncology, and surgical oncology to identify areas of consensus and controversy and to issue clinical guidelines for Y90 microsphere brachytherapy.therapies.
    CONCLUSIONS: Yttrium-90 microsphere therapy is a complex procedure that requires multidisciplinary management for safety and success. Practitioners and cooperative groups are encouraged to use these guidelines to formulate their treatment and dose-reporting policies.

  • Tumor Suppressor Role of Notch-1 Signaling in Neuroendocrine Tumors
    (full text)
    Muthusamy Kunnimalayaan, Herbert Chen
    Endocrine Surgery Research Laboratories, Department of Surgery, The University of Wisconsin, and the University of Wisconsin Comprehensive Cancer Center, Madison, Wisconsin, USA
    The Oncologist 2007;12:535/542

    ABSTRACT
    A growing body of literature is demonstrating that Notch signaling is a more complex process than originally thought. Contradictory findings of notch-1 acting as an oncogene or a tumor suppressor revealed that its role is very specific to the cellular context. In this review we focus on the tumor suppressor role of Notch-1 signaling in neuroendocrine tumors (NETs) such as carcinoid and medullary thyroid cancers. NETs secrete various bioactive hormones that can cause debilitating symptoms. Surgery is the only potential curative treatment for the patients with NETs. Notch-1 signaling is absent in these tumors and activation of Notch-1 significantly reduces tumor growth in vitro. Therefore, identification of compound(s) that activate the Notch-1 pathway in NETs could be a potential strategy to treat patients with NETs.
  • An aggressive approach leads to long-term survival in patients with pancreatic endocrine tumors (Abstract) for full text Click here
    Fendrich V, Langer P, Celik I, Bartsch DK, Zielke A, Ramaswamy A,
    Rothmund M
    Department of Surgery, Philipps-University Marburg, Marburg, Germany. fendrich@med.uni-marburg.de
    Ann Surg. 2006 Dec;244(6):845-51; discussion 852-3.
    OBJECTIVE: To evaluate the outcome of reoperations in patients with duodenopancreatic neuroendocrine tumors (PETs) in a tertiary referral center.
    CONCLUSIONS: We show that an aggressive surgical approach leads to long-term survival in patients with malignant PETs. Although long-term cure can only be achieved in a proportion of patients with malignant PETs, significant long-term palliation can be achieved.
  •  Management of Goblet Cell Carcinoid (Full text)
    Journal of Surgical Oncology
    Volume 94, Issue 5, Date: 1 October 2006, Pages: 396-402
    John C. Byrn, Ju-Lin Wang, Celia M. Divino, Scott Q. Nguyen, Richard R.P. Warner

    Background and Objectives: Goblet cell carcinoid, a rare tumor of intermediate malignant potential, is known to account for a significant minority of appendiceal neoplasms. Sixteen new cases of gastrointestinal goblet cell carcinoid were reviewed to describe their presentation, treatment, and outcome.
    Conclusions: Goblet cell carcinoid is a rare malignant tumor largely affecting the appendix. In patients presenting with appendicitis, our series does not support the recommendation of right hemicolectomy based on pathologic diagnosis alone and surgical intervention must be customized to the individual patient.
  • Liver metastases of neuroendocrine tumors; early reduction of tumour load lead to improved life expectancy.(for full text Click here) (Technical)
    Liesbeth M Veenendaal1, Inne HM Borel Rinkes1, Cornelis JM Lips2 and Richard van Hillegersberg*1 Netherlands.
    Published: 26 June 2006 World Journal of Surgical Oncology 2006, 4:35
    Review
    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.
    Conclusions: Treatment for patients with neuroendocrine hepatic metastases must be tailored for each individual patient. When local ablative therapies are used early in the course of the disease, the occurrence of carcinoid syndrome with end stage hepatic disease can be postponed or prevented.
  • Human Tumor Assay
    Editor
    Larry Weisenthal, MD, Phd
    What is Cell culture drug resistance testing (CCDRT) ?
    Also known as "chemotherapy sensitivity and resistance assays" or ("CSRAs")

    This journal describes the CCDRT and its use to identify the best forms of chemotherapy for cancer patients on an individual basis.


Last Modified: Friday, 09-May-2008 14:46:34 EDT