Resources on the web
In addition to the support resources listed in on the "Support" and "Patient resources" pages of the "Pancreatic cancer" section of this web site, the web sites listed below might be of interest. Massachusetts residents might be particularly interested in cancer support groups listed on our "Massachusetts support groups" page.
Pancreatica.org
Pancreatica.org offers a wealth of information about pancreatic cancer, as well as hosting the world's largest database of clinical trials against pancreatic cancer.Pancreatic cancer support list
ACOR.org, the Association of Cancer Online Resources, provides a number of support group email lists. The pancreatic cancer list is a deep resource of information on the challenges of the disease. A true community, caregivers on the list remain to help those newly diagnosed long after their battles have ended.Hope & survivors
Read this often. The Median Isn't the Message, by Stephen Jay Gould, is described by Steve Dunn, creator of the Cancer Guide web site, as "the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, 'the statistics don't matter,' and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope."
Survivor profiles: The web site of M.D. Anderson Cancer Center in Houston features a page of profiles of pancreatic cancer survivors. Here's the link. According to the site, information and photos on the page are posted with the permission of each individual and it is not a complete list of all pancreatic cancer survivors at M. D. Anderson.
Patterns of Hope: The Survivor Stories from Pancreatica.org offers compelling interviews with long-term survivors. "They do exist - and often thrive. And their stories are important beacons of hope for others confronting this serious foe."
People Living With Cancer
People Living With Cancer, the patient information website of the American Society of Clinical Oncology (ASCO), is designed to help patients and families make informed health-care decisions.Clinical trials
The Pancreatic Cancer Alliance is underwriting (thanks to your donations) a dedicated clinical trials program UMass (click for active clinical trials in pancreatic cancer at UMass) and to support research through UMass's participation in the international Pancreatic Cancer Research Team
In addition to the excellent database at Pancreatica.org, here are other sources of information on clinical trials for pancreatic cancer.
ClinicalTrials.gov is run by the National Institutes of Health and is intended to "provides regularly updated information about federally and privately supported clinical research in human volunteers."
Centerwatch.com is offered by a Boston publishing company that follows the "clinical trials industry" and claims to have information on "41,000 active industry and government-sponsored clinical trials, as well as new drug therapies in research and those recently approved by the FDA."
Genetic research studies
Jefferson Pancreas Cancer Tumor Registry (JPTR) at Thomas Jefferson University Hospital, Philadelphia, is part of a research study to help define inherited risk factors, environmental exposures, and occupational factors that lead to the development of pancreatic cancer. Participants are asked to complete a questionnaire and may be asked to submit a blood sample. Individuals eligible for enrollment include:
- Patients (treated at any medical institution) with a confirmed diagnosis of pancreatic cancer
- Adults with one first degree relative (parent, sibling, child) with pancreatic cancer
- Spouses of patients (recorded as a control group)
National Familial Pancreas Tumor Registry (NFPTR) at Johns Hopkins University is a research registry that was established at Johns Hopkins University in 1994 by Dr. Ralph Hruban. He started the Registry so that scientists and doctors could learn more about pancreatic tumors, including why they seem to run in some families. Research has shown that approximately 5-10% of all pancreatic cancers are due to a familial tendency. To join the registry the investigators ask that your family complete a brief questionnaire regarding your family's cancer history. In selected cases they will request that a small amount of blood (4 tablespoons) be sent for research studies. If you would like to request a questionnaire to complete and register your family with the NFPTR, please click here.
Pancreatic Cancer Action Network
PanCAN.org is the home to the Pancreatic Cancer Action Network, a patient advocacy organization that serves the pancreatic cancer community. PanCAN has worked to establish November as Pancreatic Cancer Month and offers patient support services via a toll free number and through its website. Here's a link to Massachusetts fund-raising events.Bereavement
Discussion board at Johns Hopkins The bulletin board is specifically focused for those who are dealing with the loss of a loved one. Some messages will be from people facing a loss — others from people who are living with a loss. \Compassionate Friends The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.
Here's a poem, submitted by Pancreatic Cancer Alliance member Dick Sweeney, that was given to him after his daughter was lost to pancreatic cancer.
Foundations
The Lustgarten Foundation was created to advance the scientific and medical research related to the diagnosis, treatment, cure and prevention of pancreatic cancer. The Lustgarten Foundation, in cooperation with Robert Michael Educational Institute, LLC, with support from Eli Lilly and Company, have collaborated to distribute an excellent handbook, Understanding Pancreatic Cancer: A Guide for Patients and Caregivers, for pancreatic cancer patients and their families. It is availablefree, both as download or in book form.
Pancreatic Cancer AllianceHirshberg Foundation for Pancreatic Cancer Research
Lorenzen Foundation (pancreatica.org)
Lustgarten Foundation
National Pancreas Foundation
Pancreatic Cancer Action Network
MD Anderson Fund for Pancreatic Cancer Research
The Michael Rolfe Pancreatic Cancer Foundation
Nathan S. Arenson Fund for Pancreatic Cancer Research
Pancreatic Cancer Awareness
Pancreatic Cancer UK
Patrick Comer Courage Foundation
143mimi.com
Fund A Cure for Pancreatic Cancer