Overview of
The Stella Demarco Neuroblastoma Program

Because of our Generous Supporters, ICAN patients involved in
The Stella Demarco Neuroblastoma Program
have access to the following information services:

  • A review and analysis of the patient's pathology report relating to staging according to INSS (International Neuroblastoma Staging System) and INRSS (International Neuroblastoma Risk Group Staging System)1 2 3; a review of the symptoms prior to presentation, diagnostic tests and criteria (laboratory findings, imaging studies)4 5 6; a review of the patient’s medical history as well as the main prognostic factors (stage, age, histologic category, biochemical, and genetic markers)7 8 9.
  • Referrals, at the patient's request, to medical oncologists, radiation oncologists, surgical oncologists, radiologists, interventional radiologists, anesthesiologists, and additional specialists relevant to the patient's ongoing care.
  • Referrals to support groups that may be of assistance in handling the emotional impact that cancer has on the patient and the patient's family.
  • Referrals to pediatric neuroblastoma-specific organizations that may be of assistance in addressing insurance issues or employment termination issues (because of diagnosis or disclosure of metastatic disease).
  • Review of the nature/amelioration of specific side effects from chemotherapy (such as nausea and neuropathy) as well as from other treatment modalities.
  • Discussion of the interaction of diet with cancer chemotherapy drugs based on recent studies.
  • Delineation of the symptoms about which the pediatric neuroblastoma cancer patient should alert his/her oncologist.
  • Discussion of relevant pediatric neuroblastoma imaging technology.
  • Discussion of pain management issues and treatment options that can be addressed with the patient's medical team.
  • Explanation of the recommendations given or not given by the patient's oncology team; assistance in answering the patient's questions which remain either after or between appointments with the medical team.
  • Review of the relevant radiotherapy/interventional radiology options which the patient, in turn, may discuss with his/her medical team.
  • Discussion of the relevance of the patient's specific immunohistochemistry and cytogenetic results to available clinical trials so that the patient may explore all options with her medical team.
  • Analysis of relevant pediatric neuroblastoma cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.
  • Review of relevant pediatric neuroblastoma cancer-specific drugs in the anticancer pipeline. Review of all relevant and complementary and alternative medicine ("CAM") avenues.
  • Review of the merits of filing a "Single Patient IND for Compassionate or Emergency Use" for a specific experimental cancer drug, if relevant to the patient's situation.
  • Exploration of options that might reduce travel costs for the patient as well as ICAN supporters who have volunteered to host a clinical trials patient in a particular city.

To know more about NCCN cancers in Portuguese (only Breast Cancer, Colon Cancer, Lung Cancer and Rectal Cancer) http://demo.nccn.org/international/international_adaptations.aspx


1 Castleberry, RP, JJ Shuster, and EI Smith. "The Pediatric Oncology Group Experience with the International Staging System Criteria for Neuroblastoma. Member Institutions of the Pediatric Oncology Group." Journal of Clinical Oncology 12.11 (1994): 2378-1381.

2 Cohn, S. L., A. D.J. Pearson, W. B. London, T. Monclair, P. F. Ambros, G. M. Brodeur, A. Faldum, B. Hero, T. Iehara, D. Machin, V. Mosseri, T. Simon, A. Garaventa, V. Castel, and K. K. Matthay. "The International Neuroblastoma Risk Group (INRG) Classification System: An INRG Task Force Report." Journal of Clinical Oncology 27.2 (2009): 289-97.

3 Monclair, T., G. M. Brodeur, P. F. Ambros, H. J. Brisse, G. Cecchetto, K. Holmes, M. Kaneko, W. B. London, K. K. Matthay, J. G. Nuchtern, D. Von Schweinitz, T. Simon, S. L. Cohn, and A. D.J. Pearson. "The International Neuroblastoma Risk Group (INRG) Staging System: An INRG Task Force Report." Journal of Clinical Oncology 27.2 (2009): 298-303.

4 Mueller, Wolfgang P., Eva Coppenrath, and Thomas Pfluger. "Nuclear Medicine and Multimodality Imaging of Pediatric Neuroblastoma." Pediatric Radiology (2012): n. pag. Springer Link. 14 Nov. 2012. Web.

5 Brodeur GM, Pritchard J, Berthold F, et al: Revisions of the international criteria for neuroblastoma diagnosis, staging and response to treatment. J Clin Oncol 11:1466-1477, 1993

6 Cohen, M.D. "International Criteria for Neuroblastoma Diagnosis, Staging, and Response to Treatment." Journal of Clinical Oncology 12.9 (1994): 1991-993.

7 Kumar, Vinay, Abul K. Abbas, and Nelson Fausto. Robbins Y Cotran Patología Estructural Y Funcional. España: Elsevier, 2005.

8 Cangemi, G., G. Reggiardo, S. Barco, L. Barbagallo, M. Conte, P. D'Angelo, M. Bianchi, C. Favre, B. Galleni, G. Melioli, R. Haupt, A. Garaventa, and MV Corrias. "Prognostic Value of Ferritin, Neuron-specific Enolase, Lactate Dehydrogenase, and Urinary and Plasmatic Catecholamine Metabolites in Children with Neuroblastoma." Oncotargets and Therapy (2012): n. pag. 30 Nov. 2012.

9 Stigliani, S., S. Coco, S. Moretti, A. Oberthuer, M. Fischer, J. Theissen, F. Gallo, A. Garavent, F. Berthold., S. Bonassi, GP Tonini, and P. Scaruffi. "High Genomic Instability Predicts Survival in Metastatic High-risk Neuroblastoma." Neoplasia 14.9 (2012): 823-32.

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The Stella Demarco Neuroblastoma Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

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ICAN is currently working on The Stella Demarco Neuroblastoma Program. We are working to put together a Family and Friends Advisory Council for the The Stella Demarco Neuroblastoma Program. If interested, please email us at Stella.Demarco.Program@askican.org.

If you would like to become involved as a donor and supporter or a member of our Cancer Research Literature team as a Research Team Leader (medical school students, physicians, nurses, and post-docs only please), you may reach us at Stella.Demarco.Program@askican.org.


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