Overview of 
The Claire Nelson Brain Tumor Program 

Because of our Generous Supporters, ICAN brain patients involved in
The Claire Nelson Brain Tumor Program
have access to the following information services:

  • A complete review of symptoms prior to presentation (headaches, seizures, motor deficits, visual/hearing/speech deficits, imbalance, personality/behavioral changes, unexplained nausea and vomiting) [1][2]; as well as a review of the patient's medical history, current condition, and comorbid factors.
  • A complete review and analysis of the patient's biopsy based on the latest guidelines of the WHO (Grade IV/VI astrocytoma) [3] [4] [5], as well as the surgical pathology report [6].
  • A comprehensive review of the latest reports about molecular profiling (p53 mutations, p16/CDKNZA, 19q) [7] [8]and methylation status (RAR? and MGMT genes, GATA6 and CASP8 ) [9] [10]
  • A review about imaging complementary diagnostic tests (CT, PET scan, MRI) [11] with regard to glioblastoma multiforme (Brain Cancer); as well as any prognostic factors (age, treatment, performance score, and localization, methylation status of MGMT, GATA6 and CASP8 genes) [12] [13].
  • 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 brain cancer patient should alert his/her oncologist.
  • Discussion of relevant brain 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 brain cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.
  • Review of relevant brain 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.

[1] Robbins Y Cotran Patología Estructural Y Funcional. Kumar, Vinay, Abul K. Abbas, and Nelson Fausto. España: Elsevier, 2005. 
[2] Malignant glioma: genetics and biology of a grave matter. Maher EAFurnari FBBachoo RMRowitch DHLouis DNCavenee WKDePinho RA. Genes Dev. 2001 Jun 1;15(11):1311-33. 
[3] Glioblastoma Multiforme with Subcutaneous Metastases, Case Report and Literature Review. Liemei Guo, M.D.,1 Yongming Qiu, M.D., Ph.D.,1 Jianwei Ge, M.D.,1 and Dongxue Zhou, M.D. J Korean Neurosurg Soc. 2012 November; 52(5): 484-487. 
[4] Established and emerging variants of glioblastoma multiforme: review of morphological and molecular features. Karsy MGelbman MShah PBalumbu OMoy FArslan EFolia Neuropathol. 2012;50(4):301-21. 
[5] The 2007 WHO Classification of Tumours of the Central Nervous System. David N. LouisHiroko OhgakiOtmar D. WiestlerWebster K. CaveneePeter C. BurgerAnne JouvetBernd W. Scheithauer, and Paul Kleihues. Acta Neuropathol. 2007 August; 114(2): 97-109. Published online 2007 July 6 
[6] Extent of resection in patients with glioblastoma: limiting factors, perception of resectability, and effect on survival. Orringer DLau DKhatri SZamora-Berridi GJZhang KWu CChaudhary NSagher OJ Neurosurg. 2012 Nov;117(5):851-9. Epub 2012 September 
[7] Molecular pathways in the formation of gliomas. Von Deimling ALouis DNWiestler ODGlia. 1995 Nov;15(3):328-38. 
[8] Genetic alterations associated with glioma progression. Kleihues PLübbe JWatanabe Kvon Ammon KOhgaki HVerh Dtsch Ges Pathol. 1994;78:43-7. 
[9] The Definition of Primary and Secondary Glioblastoma. Ohgaki HKleihues PClin Cancer Res. 2012 December 3. [Epub ahead of print]
[10] High Incidence of MGMT and RAR? Promoter Methylation in Primary Glioblastomas: Association with Histopathological Characteristics, Inflammatory Mediators and Clinical Outcome. Christina PiperiMarios S ThemistocleousGeorge A PapavassiliouElena FarmakiGeorgia LevidouPenelope KorkolopoulouChristos Adamopoulos, and Athanasios G Papavassiliou. Mol Med. 2010 Jan-Feb; 16(1-2): 1-9. Published online 2009 October 12. 
[11] Multimodal magnetic resonance imaging in the diagnosis and therapeutical follow-up of brain tumors. Housni ABoujraf SNeurosciences (Riyadh). 2013 Jan;18(1):3-10. 
[12] Primary human glioblastomas - prognostic value of clinical and histopathological parameters. Habberstad AHLind-Landström TSundstrøm STorp SHClin Neuropathol. 2012 Sep-Oct;31(5):361-8. 
[13] MGMT, GATA6, CD81, DR4, and CASP8 gene promoter methylation in glioblastoma. Daina SkiriutePaulina Vaitkiene,Viktoras SaferisVirginija AsmonieneKestutis SkauminasVytenis Pranas Deltuva and Arimantas Tamasauskas1 BMC Cancer. 2012; 12: 218. Published online 2012 June 6.

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The Claire Nelson Brain Tumor 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 Claire Nelson Brain Tumor Program. We are working to put together a Family and Friends Advisory Council for the The Claire Nelson Brain Tumor Program. If interested, please email us at ClaireNelsonProgram@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 ClaireNelsonProgram@askican.org.


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