| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Do you ever read some news article or new study about our lives as Cancer survivors that makes you want to scream? I often do so it was really great last month to see Brian Hill's droll commentary on a Jan online article "Many Head and Neck Cancer Survivors Face Eating Problems�, ,Part of dealing with this cancer is accepting reality. So instead of yet another futile post to get those of you who have not signed up for the OCF news feed to do so, I'm just going to repost Brian comments. It's just too good to languish in the comment section of the OCF newsreader where far too many of you just won't see it. [quote]Brian Hill Says: January 18th, 2012 at 11:44 am I wonder who paid for this bit of research to be done. ANYONE working in the H&N community, or who has been a patient could tell you this. I�m really not sure what interventions to improve quality of life can be done for people that have lost their tongue, have had their swallowing mechanisms altered anatomically or damaged by radiation causing dysphagia, or who would not be depressed after the whole process including some living with mild to terrible esthetic issues. This article states the obvious, yet offers no clue as to what might be done to improve QOL for oral cancer patients. Really doctors? What does this contain that is not self evident? [/quote] Here is the link to the OCF news article OCF news -Jan 18 Seriously, sign up now for the OCF news feed You won't regret it Brian does not comment on every article but when he does: WOW charm
Last edited by Charm2017; 02-16-2012 07:30 AM. Reason: url glitch
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Signed up! I agree with you my friend, thanks for posting this!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | well it appears someone is reading them�. I only comment on the articles that stick in my throat for the most part. When you go to the news page you can click on the link on the upper right that says comments, they are mostly from me. Unfortunately the vast majority of them from outsiders have to be taken down because they are just spamming our news site with junk or porn or worse. Real comments from real people take a few days to appear as we have to purge all the junk out, and find them before they can go live. I had hoped that they would be a place where interesting dialog or debate might take place, but they just attract spammers. So having them go immediately live, is unfortunately out of the question. http://oralcancernews.org/wp/girls-only-vaccine-could-be-best-weapon-against-HPV/#comment-916
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | I'm probably being dense, but how do I create a WordPress login so I can comment in the news section?
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Since the end of the year we have been short a person at OCF, so we turned off the ability to comment, it was taking too long to clean out the junk. But if you would like to, please send it to [email protected] or to me here as a PM and we will put it up for you. We likely will turn the feature back on again in another month.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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