Hello,
I'm new to your OCF Forum. Thanks for making this available to all!

My mom just reached out for help for info for a loved one starting radiation & chemo on 3/30/15. Here are her questions:

1. Do you have any link to support group?
2. Get her in contact with people who have had treatment, radiation and chemo.

Any and all advice welcome!

Thank you!

The Oral Cancer Foundation (OCF) is an online support group full of oral cancer patients and caregivers.

The patient or caregiver would need to ask at the treatment facility what other support is available at that location.

There are local chapters throughout the country for SPOHNC, Support For People With Oral and Head and Neck Cancer, that meet monthly. There is one in Detroit at the Henry Ford Hospital that meets the 1st Wednesday, every month, 4-6pm.

https://www.spohnc.org/local_chapters.php

Face to face support groups in many cancers including H&N were around before we put this forum up in 2001. Online forums for this kind of thing were unheard of. Having attended one of those mentioned (UCLA), I found that I had issues almost daily, questions I needed answered...but by then I was far away from my treatment team, (Huston) in a protracted recovery with tons of things still going wrong. Still on opioid drugs, still on a PEG, and still emotional screwed up in spades. Meeting once a month with people who were like me still mostly in treatment or a couple very fresh out of it, I decided wasn't as helpful as I thought it might be though I liked the camaraderie of seeing someone in person. That's when OCF started this forum, because I never felt that once a month was going to be enough, and that only 10 or less people at most of the meetings were going to offer me the insights that I sought. The nurse that monitored it wasn't allowed to give out medical advice to patients who were not hers, and that was an additional issue.

So OCF bought this software which has now helped over 11,000 registered users, and hundreds of thousands of lurkers that come but do not post. If someone can be taught to use a computer (age can be a disqualifying issue sometimes as they are less computer conversant than others) this is a place where they will find carefully vetted information, emotional support, and yes even love from people thousands of miles away. I think she should try it, since the format has stood the test of time.

Make certain to direct her here! This is the most medically factual and knowledgeable online forum I have found focused on oral cancer. There is both wonderful medical and emotional support here.

American Cancer Society has a head and neck forum. It is also very good and active; it is stronger for those seeking emotional support but there are plenty folks who have been through it all too.

Check with the local groups of cancer support organizations.

As Brian points out, online forums are far better at communicating with a greater number of people in a more timely manner. Since she has not started treatment, really try to get her to join online groups and get some PC support if she needs help navigating around the forums.

Good luck