Just an observation:

It seems over the past few years the number of users posting regularly in these forums is on the decline.

I really think this bulletin board style forum is superior to most of the other social media type apps for keeping long term threads of useful knowledge more easily searchable or able to be organized.

My brother was just recently diagnosed with small cell lung cancer, extensive stage with bone and liver metastasis and died within three months of diagnosis, and I was lamenting that none of the various resources I could find were as well put together as OCF's forums.

Doing one's "homework" was more challenging I thought.

I ended up joining some facebook user groups for lung cancer, and small cell lung cancer specifically and some reddit groups of the same type.

I've posted a lot of anecdotal, my experience only, type stuff on here for sure, but those other forums have lots of superficial anecdotal experiences and were lacking on substance.

Instead of a static forum post with a static thread, easily found and easily searched, the reddit post or facebook group posts were more a feed type situations where new posts get promoted and get some interaction from those with experience in the group, but then to other users kind of get lost in the noise.

I did join at least on Reddit head and neck group, and I honestly can't recall if I've joined a similar group on Facebook for Oral and/or Head and Neck Cancers.

I do know the Reddit group for oral cancer/ Head and Neck Cancer is very active with new threads and response posts daily or nearly so.

I've been meaning to drop some references to OCF and links to those groups, but am not sure how effective that may be to pointing people to the excellent resources on database of the really good information from the patient perspective gathered here. There simply is unmatched breadth and depth of experiences and here on the OCF forums.

Not sure if the support staff behind the scenes is purely voluntary, or what thoughts the leadership may have regarding kind of proactively informing folks in those other app/media locations of the existence of this very useful resource.

Just kind of tossing it out there for other's thoughts.

R/
CQ

Firstly, my condolences on the loss of your brother Chris CQ! 1000% agree with everything you said! Unfortunately, since OCF's Founder Brian Hill sadly passed this website has really been impacted:( I believe it desperately needs individuals like you to help take up the reins and absolutly promote it's invaluable standing wherever you have an opportunity in the H&N arena!

I quit posting because I never got any responses or and reaction so I ask I was told most of members migrated to Facebook group the information here was priceless and played a big part on my recovery I dont know if Christine is still here or not but she was awesome.

I agree that many OCF members have switched to Facebook groups. I belong to a few and there is generally more activity there than on the OCF forum. For many reasons I prefer the OCF forum over a Facebook group.

Some sad news to report - ChristineB passed away last year. She was a personal friend, a wonderful and kind person, and did a wonderful job welcoming people to the OCF forum. RIP Christine!

I am quite saddened to hear that ChristineB passed. A quick review of the top posters on this site shows her being no 1. A testament to the level of outreach and advocacy she exhibited. We will miss her voice her. Love and blessings to her family and friends.

Hello Susan2992,

Sorry for your personal loss of your friend ChristineB. I have read many, many of her contributions on hear like Brian and Nels and others who were more active way back with similar experiences and things I searched for.

Sorry also to hear you are experiencing a recurrence, I hope the treatment for that comes along well for you.

I did see the Reddit group does hotlink to the Oral Cancer Foundation.

Maybe its mostly because there is a Reddit and Facebook app, and its a few extra formal steps to log on to a web based forum.

There seem to be more "off the cuff" type entries, but at least for the Reddit Head and Neck group, it seems like there are multiple new posts every day.

It does seem as if folks with pretty specific types of tumors and complications get responses from folks with similar situations pretty quick and often several responses.

One example is that two doctors from the Mayo Clinic's Head and Neck Cancer are doing a call in type seminar, Sept 2nd I think it is, free, for anyone to call in and ask questions or just listen to the things other people ask them, one a surgeon I believe and the other an oncologist.

I don't know that they asked anyone to post that anywhere on here.

I guess I could hot link to it in a new post, just passing along information....?

Best wishes,

R/
CQ

Praying for her.