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by
Bruce Shriver
Here’s what’s in the Odds and Ends Column this month
MedFetch is a web-based program that automatically searches PubMed for you. Every week MedFetch searches PubMed using previously entered search terms. It keeps track of the results of the searches and retrieves up to twenty new citations, eliminating duplicates. The search is performed weekly or monthly until you delete the search. The searches are known as Automated Medline Queries (AMQs).
Access to Investigational Drugs: Questions and AnswersThe National Cancer Institute (NCI) provides a webpage of useful information about investigational drugs. According to the NCI, an investigational drug is “one that is under study but does not have permission from the U.S. Food and Drug Administration (FDA) to be legally marketed and sold in the United States”. Note the “Related Resources” at the bottom of the webpage.
Multi-Drug Interaction Checker This WebMD Medscape website, which you may have to register to access the website if you have not already registered for it, allows you to check for drug-drug interactions for treatment regimens with two or more drugs. Interactions related to a single drug, can be found by clicking here.
American Brain Tumor Association’s Pen Pal Program Many people benefit from participating in an on-line support group. Some of the postings result in threads of conversation about a specific topic that last several days while other postings provide a single instance of information, such as a pointer to a webpage describing a new clinical trial, research result, or a story of courage and hope. Questions are posted and people who have had to deal with the issues at hand tell of their experiences. The American Brain Tumor Association (ABTA) has two “pen pal” programs that complements the type of communications that on-line support groups offer. Here’s a brief statement about their “pen pal” programs, “Making connections with others who are facing similar situations can be an important way to share information and gain support. Linking with others to share experiences can provide insight into your diagnosis, lighten your burden and help you to feel less alone in your journey. Our two “Pen Pal” programs, Connections and Bridges, offer a way for you to be connected with others for mutual support and help in coping. The connection is one-on-one, though not face-to-face, like traditional support groups, but can be a great additional source of support.” The ABTA pen pal programs are available to patients, family members or friends, to the newly diagnosed or long term survivors. ABTA asks those interested in participating in the program complete a form. ABTA states, “…you can answer as much or as little as you feel comfortable doing. Just keep in mind that the more information we have, the better the match will be. Also, please understand that if you are too specific in your request, it may take a bit longer.” Finally, “Once the two participants are connected, you can communicate through letters, email, or by phone.” Please send me a note if you know of any sarcoma groups that offer similar programs.
The 1st annual Lindsay’s Legacy 5K Run to benefit Childhood Cancer Research takes place on November 12, 2005 in Tonawanda, NY. This scenic run will take the participants along a beautiful and historic stretch of the Niagara River between Buffalo and Niagara Falls, NY, through a park often visited by the young woman whose memory is honored by this race. Lindsay’s Legacy is named after Lindsay MacIver, who at age 21 lost her battle with alveolar rhabdomyosarcoma. Lindsay had undergone extensive chemotherapy and radiation treatments at Buffalo’s Roswell Park Cancer Institute in addition to major surgery at Women and Children’s Hospital of Buffalo. At the time of diagnosis in March 2002, Lindsay’s cancer was already at stage IV, but her determination to beat “rhabdo” carried her almost two and one-half years. Her never-ending smile, bravery, and optimism were an inspiration to all medical staff, social workers, family and friends. Rhabdomyosarcoma is a rare soft tissue sarcoma characterized by tumors that develop from muscle or fibrous tissue and can grow in any part of the body. Funds raised will be donated to the "Rhabdomyosarcoma Research Laboratory" of Dr. Frederic Barr at the University of Pennsylvania School of Medicine and also to Carly's Club, Roswell Park Cancer Institute's official pediatric fundraising division. Click here to view race information and more about Lindsay’s Legacy.
Third Annual Pediatric Integrative Medicine Conference The conference brochure states, the conference “brings together international visionaries to share their knowledge about clinical, educational and research practices in integrative pediatrics. Featuring academic leaders such as Kathi Kemper, Wayne Jonas and Timothy Culbert, PIMC III is the product of collaboration between pediatric integrative medicine programs and centers across the U.S. and Canada. A half-day of pre-conference workshops and two days of state-of-the-art interactive panel discussions will allow faculty and participants to share the most current evidence-based methods for the practice of integrative pediatrics. We will also display, for the first time, poster sessions highlighting the most exciting, up-to-date research in pediatric integrative medicine.” The meeting takes place New York Academy of Medicine, October 21-23, 2005.
According to this Discovery Health Channel webpage, “Misinformation is infectious. And when it comes to the causes of cancer, there is no exception. From cell phones to grilled meats to bug spray, the myths surrounding the causes of the disease seem to be everywhere. These myths are enough to drive anyone to the brink of paranoia. So what's real and what's myth? The Discovery Health Channel and Prevention Magazine, in conjunction with the American Cancer Society, polled 1,000 adults to uncover the most common myths surrounding cancer. We've taken the 10 most popular misconceptions and asked Dr. Ted Gansler, director of medical content at the American Cancer Society, to lay out the facts. Find out where they originated and if there is any truth behind them.” Visit this webpage, to read the myths and Dr. Gansler’s analysis of them.
Although the Nova series “Cancer Warrior,” was initially broadcast over four years ago, it still is extremely interesting and informative. The program follows the incredible career of Dr. Judah Folkman. By 2001, Folkman and his colleagues at Children's Hospital in Boston have spent over 30 years searching for ways to curb cancer by cutting off blood flow to tumors. Click on the above link to view various sections of the series. NOVA’s original description of the program states, “Treating cancer with traditional chemotherapy usually involves strong poisons that kill normal cells as well as cancer cells, often causing debilitating side effects. In this NOVA, meet one researcher who has developed a drug that, if successful, could profoundly change the way cancer is treated. The program:
A Cancer Retreat in Canada for Young Adults RealTime Cancer (RTC) has a goal of providing “inspiration, non-medical information and support to young Canadian Cancer Patient Supporters and all young Canadians.” On September 2-5th, Realtime Cancer will be hosting a Cancer Retreat for young adults at The Rock! (St. John's, Newfoundland and Labrador). Here is a brief description of the retreat from RTC’s website: “Cancer is different when you are young. If you're "lucky" enough to be treated in the Children's Hospital you still have stuff to deal with like fertility, friends and physical and emotional challenges that are different than at any other age. And as a young patient in the adult hospital you're bunking with 50, 60, 70 year olds who have very different things on their mind. RealTime Cancer (RTC) is here because we know cancer is different when you're young and our first retreat will bring together young survivors from across Canada to share stories, the laughs and the cries, learn from each other, and create bonds that will last forever. RTC is working with Dr. Rob Rutledge of the Skills for Healing Retreats, to offer a different kind of cancer retreat. One focused on the specific challenges of being young and dealing with cancer. The retreat participants will be facing, or have faced a cancer diagnosis during adolescence or early adulthood, and will have lots to share and learn from each other. The retreat is hosted by Dr. Rob Rutledge, with meditation and relaxation techniques taught by Tim Walker. Find out more about the Skills for Healing Retreats. The weekend will include things like meditation, mindfulness training, art therapy, activities to get to know yourself and others, and the amazing company of other people that will truly "get" you.”
According to the FDA’s Genomics at FDA website, “Pharmacogenomics allows us to identify sources of an individual’s profile of drug response and predict the best possible treatment option for this individual. The use of genomic information, accelerated by the sequencing of the human genome and the advent of new tools and technologies, has opened new possibilities in drug discovery and development. Consequently, regulatory science and regulations need to be set in place appropriately.” There are a number of interesting presentations that are downloadable (click here). Among the most recent ones are: Pharmacogenomics and Biomarkers: Current role in drug development [PDF]; Personalized Medicine: What Is It? How Will It Affect Health Care? [PDF]; Translation of Pharmacogenomics and Pharmacogenetics: A Regulatory Perspective [PDF]; Pharmacogenomics, Personalized Medicine and the Role of FDA [PDF]; Application of a Cross-Platform RNA Standard for Assessing Microarray Data Comparability [HTML]; Pharmacogenomics: Experience with Voluntary Submissions and Regulatory Development [PDF]; and Toxicogenomic Data Submissions: Regulatory Considerations [PDF].
The national, non-profit Patient Advocate Foundation (PAF) “serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.” PAF was featured in the July 2005 issue of Ladies Home Journal. Among its other programs PAF has a “Scholarships for Survivors” program and a “Patient Congress”. PAF also a number of useful, free publications that can be downloaded from its website.
Model for a Donated Sick Leave Program Here is a very interesting press release from Barry Sugarman's The Cure Our Children Foundation. I urge anyone who is caring for a chronically ill child, wife, husband, or other family member or friend, to read the press release and the report which describes a Model for a Donated Sick Leave Program. I found it informative and useful. "The Cure Our Children Foundation, a nonprofit charitable foundation dedicated to children, announced today the availability of its research article indicating that for little or no cost to private employers, an excellent employee benefit may be given to those parents that have children with cancer or other life-threatening diseases. As a result of these findings, The Cure Our Children Foundation also announced today the availability of a National Model Donated Sick Leave Program designed to assist parents and caregivers of children undergoing treatment for cancer and other life-threatening diseases. Donated Sick Leave Programs permit employees of a company to donate one or more days of sick leave or vacation time to a fellow employee who must take off extended time to care for an ill child or family member. Employers then transfer the paid time to the affected employee so the employee may be paid during time taken off work caring for their ill child; all with little or no cost to their employer. Working together with a California Employment Attorney, the foundation has developed a National Model Donated Sick Leave Program along with all the forms needed to easily allow widespread adoption of the program by private industry. The Cure Our Children Foundation identifies important under-researched children's issues and devotes extensive resources to educate and guide parents, professionals, government and the public. The foundation receives thousands of website visits every month. The results of the research are provided as a free public service, and are supported by donations to the foundation. The foundation has a number of other research projects underway that will benefit families."
The American Society of Clinical Oncology has put together a list of precautions and tips, Cancer and the Summer Months, for dealing with issues during the summer months for cancer patients such as sun exposure, heat and dehydration, and exercise.
V2N4 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.
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