Overview of 
The Julia Ann Harmon
ASPS/Sarcoma Patient Advocacy Program 

Because of our Generous Supporters, ICAN patients involved in
The Julia Ann Harmon ASPS/Sarcoma Patient Advocacy Program
have access to the following information services:

  • A review of the patient's medical history, current condition and risk factors for metastasis, and a complete review of symptoms prior to presentation (according to the location of the primary site) 1 2 3; diagnostic criteria (histomorphologic features, inmunohistochemical findings and chromosomal translocation) 4 5 6 and other complementary diagnostic tests (imaging studies) 7 8, a review and analysis of patient's pathology report relating to TNMG staging ("Tumor Node Metastasis Grade"), as well as prognostic factors 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 alveolar soft part sarcoma 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 alveolar soft part sarcoma cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.
  • Review of relevant alveolar soft part sarcoma 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 contact, such as Corporate Angels Network, as well as ICAN supporters who have volunteered to host a clinical trials patient in a particular city.

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[1] Alveolar soft part sarcoma. Zarrin-Khameh N, Kaye KS. Arch Pathol Lab Med. 2007 Mar;131(3):488-91.

[2] Alveolar soft-part sarcoma: a review and update. Folpe AL, Deyrup AT. J Clin Pathol. 2006 Nov;59(11):1127-32.

[3] Alveolar soft part sarcomas: molecular pathogenesis and implications for novel targeted therapies. Mitton BFederman N. Sarcoma 2012;2012:428789. Epub 2012 April 8.

[4] Alveolar soft part sarcoma: clinical, histopathological, molecular, and ultrastructural aspects. Khanna P, Paidas CN, Gilbert-Barness E. Fetal Pediatr Pathol. 2008;27(1):31-40

[5] Alveolar soft part sarcoma: clinicopathological findings in a series of 11 cases. Daigeler A, Kuhnen C, Hauser J, Goertz O, Tilkorn D, Steinstraesser L, Steinau HU, Lehnhardt M, World J Surg Oncol.  2008 Jul 1;6:71.

[6] Gene expression profiling of alveolar soft-part sarcoma (ASPS). Stockwin LH, Vistica DT, Kenney S, Schrump DS, Butcher DO, Raffeld M, Shoemaker RH, BMC Cancer.  2009 Jan 15;9:22.

[7] Ultrasonographic and MR findings of alveolar soft part sarcoma. Lai YC, Chiou HJ, Wu HT, Chou YH, Wang HK, Chen PC. J Chin Med Assoc. 2009 Jun;72(6):336-9

[8] MRI of alveolar soft-part sarcoma Chen YD, Hsieh MS, Yao MS, Lin YH, Chan WP. Comput Med Imaging Graph. 2006 Dec;30(8):479-82. Epub 2006 Oct 23.

[9] Alveolar soft part sarcoma: the role of prognostic markers. Sanjuan XSobel MEYang JMerino MJ. Ann Diagn Pathol. 2000 Jun;4(3):135-42.

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The Julia Ann Harmon ASPS/Sarcoma 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 Julia Ann Harmon ASPS/Sarcoma Patient Advocacy Program. We are working to put together a Family and Friends Advisory Council for the The Julia Ann Harmon ASPS/Sarcoma Patient Advocacy Program. If interested, please email us at Julia.Harmon.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 Julia.Harmon.Program@askican.org.


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