Overview of 
The Loryn Simone Melanoma Patient Advocacy Program 

Because of our Generous Supporters, ICAN patients involved in
The Loryn Simone Melanoma Patient Advocacy Program
have access to the following information services:

  • A complete review of the patient’s medical history and risk factors (UV rays, skin phototype, family history, sunburns, moles) 1 2; a review of symptoms and signs prior to presentation (ABCD rule) 3; a review of diagnostic criteria and complementary tests (dermatoscopy, biopsy, ultrasound,PET/CT) 4 5 6; a review and analysis of the patient’s pathology report relating to AJCC classification with TNM staging ("Tumor Node Metastasis") 7 8 based on the latest guidelines and changes, as well as prognostic factors (sentinel node, Breslow index, Clark level, mitotic index, tumor location, pattern of growth, histological type, age and sex) 9.
  • Referrals, at the patient contact'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 melanoma cancer-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 and cancer chemotherapy drugs based on recent studies.
  • Delineation of the symptoms about which the patient should alert his/her oncologist.
  • Discussion of relevant 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 physicians; 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 contact, 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 his/her medical team.
  • Analysis of relevant clinical trials options as well as the nature and purpose of clinical trials using ICAN-Search™.
  • Review of relevant melanoma cancer-specific drugs in the anticancer pipeline.
  • Review of ipilimumab (Bristol Myers Squibb'sYervoy), a monoclonal antibody that binds to CTLA-4 and vemurafenib (Roche/Genentech's Zelboraf) which blocks mutated BRAFV600, as single agents and in combination in the Phase I/II clinical trial led by Sloan-Kettering's Jedd Wolchok, MD, Dana-Farber Cancer Institute's Stephen Hodi, MD and UCLA's Antonio Ribas, MD.
  • 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 contact, such as Corporate Angels Network, as well as ICAN supporters who have volunteered to host a clinical trials patient in a particular city.
  • Analysis of relevant melanoma cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.

[1] Cutaneous malignant melanoma, sun exposure, and sunscreen use: epidemiological evidence. Bastuji-Garin S, Diepgen TL. Br J Dermatol. 2002 Apr;146 Suppl 61:24-30

[2] Skin checks. Sinclair R. Aust Fam Physician. 2012 Jul;41(7):464-9.

[3] Melanoma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Dummer R, Hauschild A, Guggenheim M, Jost L, Pentheroudakis G; ESMO Guidelines Working Group. Ann Oncol. 2010 May;21 Suppl 5:v194-7.

[4] Imaging in cutaneous melanoma. Ho Shon IA, Chung DK, Saw RP, Thompson JF. Nucl Med Commun. 2008 Oct;29(10):847-76.

[5] Diagnostic techniques for primary cutaneous melanoma. Lien MH, Sondak VK. G Ital Dermatol Venereol. 2009 Apr;144(2):187-94.

[6] Dermatoscopy for melanoma and pigmented lesions. Rao BK, Ahn CS. Dermatol Clin. 2012 Jul;30(3):413-34.

[7] Malignant melanoma. Ortega Candil A, Rodríguez Rey C, Carreras Delgado JL. ISRN Dermatol. 2012;2012:308279. Epub 2012 December 4.

[8] Histopathological diagnostics of malignant melanoma in accordance with the recent AJCC classification 2009: Review of the literature and recommendations for general practice. Garbe C, Eigentler TK, Bauer J, Blödorn-Schlicht N, Fend F, Hantschke M, Kurschat P, Kutzner H, Metze D, Pressler H, Reusch M, Röcken M, Stadler R, Tronnier M, Yazdi A, Metzler G. J Dtsch Dermatol Ges. 2011 Sep;9(9):690-9.

[9] Role of Nuclear Medicine in the Management of Cutaneous Malignant Melanoma. Belhocine TZ, Scott AM, Even-Sapir E, Urbain JL, Essner R. Journal of Nuclear Medicine. 2006;47(6):957–967.

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The Loryn Simone Melanoma Patient Advocacy Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

For more information about this special program, please click on.....

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ICAN is currently working on The Loryn Simone Melanoma Patient Advocacy Program. We are working to put together a Family and Friends Advisory Council for the The Loryn Simone Melanoma Patient Advocacy Program. If interested, please email us at LorynSimoneProgram@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 LorynSimoneProgram@askican.org.


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