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.
[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 B, Federman 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 X, Sobel ME, Yang J, Merino MJ. Ann Diagn Pathol. 2000 Jun;4(3):135-42.
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.....
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.
Federal Tax I.D.: EIN 86-0818253