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Patient and Family Support and Resources

Finding and receiving the best possible care for cancer is only part of the struggle for patients and families. Coping with the side effects and emotional and financial consequences are just as important.

For a discussion of coping with side effects of treatment go here and here. Also see the NCI section on coping and resources. ASCO has a section on coping and survivorship. The American Cancer Society has a section coping, after treatment, and support.

Other links to support and resources here, here, here.

Also read the section on nutrition, psychosocial needs, research trials, alternative medicine, hospice, pain management, attitude and cancer

A list of good cancer patient networking sites from CNN is noted below:

1. Patientslikeme.com

Holt, Subaiya, and others say this site is one of the leaders in the field. They give it kudos for creating large communities and offering tools for patients to compare symptoms, effective drug dosages and side effects.

2. Medhelp.org

One strength of this Web site is that physicians who are experts in their areas moderate many of the forums. Doctors and patients work together to create "wikis," or documents that can be edited by any user. "This is one of the few sites I know of where patients and the experts are all part of one community," Subaiya says.

3. Dailystrength.org

On this Web site, you can use online tools to set goals, send "hugs" to other patients, and vote on the effectiveness of treatments. "It's not just about support," Subaiya says. "You can go on and see what percent of the time has a certain drug worked for people like you."

4. Organizedwisdom.com

Surveys show most people get their medical information simply by putting a term into a search engine such as Google. While that can be useful, it can also bring up information of questionable accuracy and value. On organizedwisdom.com, physicians and lay experts create "wisdom cards" tailored to thousands of search terms, giving readers a vetted version of health information.

5. ACOR.org

The Association of Cancer-Online Resources, where Weiss found Kossove, is home to 159 mailing lists for people whose lives have been touched by cancer as well as information on cancer treatment options, lists of clinical trials and other support resources. Founded in 1996 by Gilles Frydman, who'd watched his wife battle cancer, the Listservs have been used by more than half a million people to share advice and affirmation about fighting cancer.