Pancreatic cancer is the 4th leading cause of cancer death in the United States, but receives the least research funding of the major cancers.
Updated:
March 2, 2008
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 Online Cancer Resources, provides a number of support group email lists. The pancreatic cancer list — managed by Mary Zapor and Kathryn Abernathy — 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
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."
VeritasMedicine.com is a commercial site that offers a free search and notification service of upcoming trials. Registration is necessary to use the service.
Lustgarten Foundation
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 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
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.
Please send in recommendations
for additional links
This is a preliminary and incomplete list, but should provide a useful starting point in your search for more information. Please email suggestions for additional links to
Hope@PancreaticAlliance.org. Here's a link to a search for "pancreatic cancer" on the
Google search engine.
Get involved!
If interested in learning more or helping on a committee, please email us at
Hope@PancreaticAlliance.org