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    Pancreatic cancer, what online resources did you find the most helpful?

    Asked by WhatNextEmails on Tuesday, March 26, 2013

    Pancreatic cancer, what online resources did you find the most helpful?

    We need your help again. We're working to improve our resources page and want to know, What online resources did you find the most helpful? For example, did you google your diagnoses? What cancer sites did you find? Did you look for financial resources, help with prescriptions, help with treatment expenses? Travel expenses, or a treatment center? Give us the run down of the first 48 hrs after you were diagnosed that you spent online. What did you want to know? And did you find it?

    With this information we can develop more resources for our fellow WhatNexters to help them find the help they are looking for, as quickly as possible. Give your tips and resources you found helpful and we may use your information in our articles to help others in the future.

    4 Answers from the Community

    4 answers
    • joyce's Avatar
      joyce

      Pancan--the Pancreatic Cancer Action Network--has reliable information and will provide one-on-one support through an email or a phone call. I've contacted them both ways and always get a response to my questions within 24 hours.

      about 4 years ago
    • joyce's Avatar
      joyce

      Pancan--the Pancreatic Cancer Action Network. They site was recommended by our surgeon as having the most reliable information. They provide one-on-one support by offering resource and information on topics such as treatment, clinical trials, etc. They also support research through fundraising and advocacy.

      I would also recommend Immerman Angels which connects cancer patients and caregivers with an 'angel' who will mentor and support you. They match you with other with similar characteristics, e.g., diagnosis, stage or treatment, relationship if you are a caregiver. Once you are matched you and your angel connect through the Internet, by phone, or however you're most comfortable. It's an international organization.

      about 4 years ago
    • Russ' Avatar
      Russ

      My name is Russ...a 12 year pancreatic cnac er survivor. I googled pancreatic cancer the same day that I found out I had cancer. I always want to know about what I am up against. I wasn't looking for anything in particular, but found a lot of info from Sloan Kettering and a few other hospitals. After my surgery and treatments I began looking at these sites for being a support person for other cancer victims. I rn across an organization called PanCan...pancreatic cancer action network. They are a huge organization out in California. They have a medical advisory board, and are up to date on the latest clinical trials. I myself am a member of PanCan and the group they call Pals which reachout to other pancreatic cancer patients who ar looking to hookup with someone who has been through this now and before. Randy Pausch's wife is a member of the board. Her husband washe professor who wrote the best seller The Last Lecture. Also on the board is Patrick Swayze's wife. Both of these woman are doing everything they can to support PanCan. Over the years Pan Can has lobbied Congress for funding towards the developments and research to find a way for early detection of pancreatic cancer. I believe that the amount of funds allocated to pancreatic cancer is only 2% while it is the deadliest of cancers by % of those who pass away after being detected. They were also successful in getting November to be recognized as Pancreatic Cancer Awareness Month. I believe that one if not both of the woman mentioned above, (Pausch and Swayze), have testified in front of Congress to support pancreatic cancer research.
      I have also given my name to Sloan Kettering, American Cancer Society, (this web site), PanCan, and also when I write my anniversary email of being in remission on November 3, 2000...the date of my suregery. I send it to many friends and family members, and have them give name and email address to anyone they come in contact with who are newly diagnosed with cancer of any type. In addition to those from WhatNext that I communicate with one on one, there are 8 people that I am in touch with on an ongoing basis. Unfortunately I lost a young woman last week which makes this part of support the worst...when you lose someone. But I knew this going in that this was a probability...but it doesn't make it any better.
      I hope I was able to give you what you wanted...if not let me know.

      Best regards,
      Russ

      about 4 years ago
    • FreeBird's Avatar
      FreeBird

      The top websites for basic information, and for starting to research are probably:

      1. The National Cancer Institute-- for standard of care information, and they also have a way you can contact them with questions. This is the government at the National Institutes of Health. http://www.cancer.gov/cancertopics/types/pancreatic

      2. The Pancreatic Cancer Action Network- www.pancan.org has great one-on-one support and can help answer your research questions or maybe put you in touch with doctors in your area who have a good deal of experience with this type of cancer.

      3. The Lustgarten Foundation for pancreatic cancer research - has a very nice information booklet on the basics of pancreatic cancer. They also have a list of helpful links to other websites that may be helpful to you http://www.lustgarten.org/

      4. The American Cancer Society sometimes helps fill in the blanks with questions www.cancer.org

      5. If you've already passed your first try at chemo and it failed, maybe they'll start talking about clinical trials. The government has a searchable database at http://www.clinicaltrials.gov/ The one-on-one support at the Pancreatic Cancer Action Network might be the one to go to to help you navigate through these.

      There are a number of other websites, depending on what you're looking for. Sloan Kettering Memorial Cancer Center in New York has an interesting website that can help to find information regarding alternative medicine that well-meaning people might tell you about. But you could find out a little more about them http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs-botanicals-other-products

      about 4 years ago

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