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Karen Wyckoff Rein In Sarcoma Fund
A Fund for Sarcoma Cancer Research, Education and Survivor Support

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Karen Wyckoff Rein in Sarcoma Fund (KWRISF)

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Karen Wyckoff Sarcoma Research Fund at the University of Minnesota Cancer Center

Funding Progress Report - December 2005

Based on the Mission of the Karen Wyckoff Rein In Sarcoma Fund , three key areas are supported:

• Sarcoma Cancer Medical research

• Sarcoma education primarily directed to physicians to better detect sarcoma cancers, and

• Support for sarcoma survivors and loved ones.

Sarcoma medical research is supported by the KWRISF primarily through funding of the Karen Wyckoff Sarcoma Research Fund at the University of Minnesota Cancer Center. The Fund is the primary Sarcoma Cancer research fund for the upper Midwest. Four projects were recently approved by the KWRISF Board on Decemeber 1st totalling $60,000, using proceeds from the 2005 Rein in Sarcoma event as well as general contributions this fall to the KWRISF.

1. Genetic epidemiology of osteosarcoma

Feasibility study Phase II (phase I was supported by the Fund in 2004) – The lead researcher noted that through this study, ”"Our hope is that we can uncover the causes of osteosarcoma and one day prevent this devastating disease"

2. Evaluation of PET as a predictor of response to preoperative treatment of soft tissue sarcoma – a Phase II trial

This grant continues Fund's support of the work of Dr. Edward Chenge and co-principal insvestiagtors: Drs Skubitz, Froelich, Manivel, Dusenbrery and Weigel. This study is meet the critcail need to finda surrogate outcome measuremnt for the gold statndard of pateint srurvaiavl. A surrogate would allow and facilitate the more rapid assessmnt of potentail new treatments without perforing lengly and expensivestudies using survival as an endpoint. If sucessful tne rapd, non-invasive, accurate idendtofictaion ofa tumor's response to treatment may have significant advnatages over current practice. Specifcially it would

a) save non-responders from the toxicity of treatments.

b) serve as an endpoint or surrogate for survival and allow more rapid assessment of treatemnt efficancy using new agendts/modalites, as compared to lenghtly studies using overall disease free survival as an endpoint

c) allow more rapid comparisons of the effectvelness of different treatments.

3. Novel treatment of Giant Cell Tumor of Bone Using depot administration of Zoledronic Acid in Polymethylmethacrylate carrier

4. Clinical Assessment, Function and Quality of Life (QOL) of Lower Extremity Bone Tumor Survivors

1. Combined Tumor Database
The goal of this project was to assess the different tumor databases within the different specialty departments of orthopaedic surgical oncology, pediatric oncology and radiation oncology for usage in future research endeavors. The databases were analyzed for content, structure and data abstraction methods. Based upon this analysis, both the orthopaedic bone and soft tissue tumor database and the pediatric database were candidates for merger. Drs. Edward Cheng and Joseph Neglia along with database managers Paul Lender and Joe Downes concluded that maintaining separate but linked databases was optimal and therefore succeeded in establishing a standardized, electronic reporting mechanism, based upon patients' diagnoses (ICD-O format) and age, facilitating the importation and merger of patients into each respective database. This will improve the complete capture of appropriate patients into the databases and the reliability of the data abstracted.

2. Assessing the quality of life using outcomes instruments for soft tissue sarcoma patients
Dr. Raj Nagarajan is undertaking 2 projects with the goals of assessing quality of life and function and determining whether there are specific groups of patients and survivors requiring additional supports. One is an analysis of quality of life and function of 366 adult survivors of pediatric lower extremity bone sarcomas. These survivors have all undergone a lower extremity amputation. He is attempting to see what effect amputation level (above the knee, below the knee, hip disarticulation) has upon quality of life (QOL) and function. The second project under development involves the assessment of QOL and function through a patient questionnaire and comparing the results to a physician's clinical assessment of function. This will be performed through the University of Minnesota Masonic Cancer Center clinic.

3. Assessing the eIF4F protein synthesis pathway in soft tissue tumors as a potential for new drug therapies
The aim of this project, under the direction of Dr. Peter Bitterman, is investigating the protein synthesis cell biology of both fibromatosis and sarcomas in an effort to design new drug treatments. His laboratory has recently shown that hyperproliferative cells have a central component of the protein synthesis machinery (designated ) that is aberrantly activated, imparting cells with a remarkable resistance to chemotherapy. Current efforts are aimed at determining whether or not this is true for both sarcomas and other aggressive tumors such as fibromatosis by using biochemical and microscopic procedures to examine fresh tumor tissue obtained from patients undergoing surgery to remove their tumor.

4. New Research Projects approved by the KWRISF Board in the spring of 2005

• Genetic Epidemiology of Osteosarcoma-Feasibility Study
• Clinical Assessment, Function and Quality of Life of Lower Extremity Bone Tumor Survivors

• Evaluation of FDG-PET Imaging as a Predictor of Response to Preoperative Treatment for Soft Tissue Sarcoma.

Sarcoma Cancer Education for Physicians and the Public

2. Lumps Bumps and Bruises: In 2004 specific education of third year medical students at the University of Minnesota was inaugurated with a special exploration of “Lumps, Bumps and Bruises,” The program coordinated by Dr. Katherine Dusenbery, focused on proper identification of possible sarcoma tumors and lowering the incidents of misdiagnoses of sarcoma cancers that often lead to tragic results.

3. In 2005 funding has been approved by the KWRISF Board to create an Undergraduate Medical Student Sarcoma Education Day at the Medical School.

4. Sarcoma Web Resources – In additionto the resources available across the country (see resource section of this website) the KWRISF is funding the work of Dr. Roby Thompson to create a unique web resource for both the public and though the University of Minnesota Cancer Center. Currently in its “beta” review stage, the new resource should be available to the public shortly. This website will provide links to this new resource as soon as it is available.

5.Rein in Sarcoma – One of the goals of the annual Rein In Sarcoma Event, held on the fourth Monday of July each year since 2001, is to increase awareness of the public of sarcoma cancers for the public. Given the all volunteer nature of the event, Rein In Sarcoma ahs received great media attention and serves as a significant vehicle for public education.

1. Rein in Sarcoma – Rein in Sarcoma as an event is the only opportunity for sarcoma survivors in the upper Midwest to regularly meet, share, learn and receive support from one another. Many sarcoma survivors coming to the Rein In Sarcoma for the first time have never actually met another sarcoma patient before. It has proven to be a very important and uplifting event for all. In 2004 over 5 Sarcoma survivors attended Rein In Sarcoma.