| | 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 | I've personalized my google news to trace any news stories on "base of tongue cancer". So while I got the following report, the lamestream media including the Washington Post are not mentioning his base of tongue cancer which spread to his lung and instead are reporting that he died of lung cancer. It's frustrating, just like all the news stories about "throat cancer" for actor MD, instead of the accurate base of tongue cancer. Here's an accurate obituary.[quote]Penthouse magazine founder Bob Guccione has died aged 79 at Plano Speciality Hospital, Dallas, after a long running battle with cancer.He developed cancer on his tongue and in a n interview with New York Magazine he said, �My cancer was only a tiny tumor about the size of an almond at the base of my tongue.�
�The cure is probably every bit as bad as the disease. It�s affected my ability to swallow . . . the mobility of my tongue . . . it makes it very difficult for me to talk. I hope your machine understands me.�
The disease claimed his life last night.[/quote]
Charm
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Naturally, the OCF news feed got this story correct. My google reader had a lagtime and I posted this before I saw the OCF news feed which also mentioned the New Yorker interview,
Once again OCF sets the lamestream media straight. People need to know just how deadly this disease can be and unfortunately currently "news" has to be related to a celebrity nowadays. That's why you see all these stars testifying at Congressional hearings about health issues and diseases, because the newspapers won't cover many health story without some celebrity angle.
Charm
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I would not call a tumor the size of an almond tiny.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Charm,
Wow, thanks for posting this. I just read Guccione's obit yesterday in my local paper and it, too, claimed he died from lung cancer. What a disservice to everyone out there! And what a missed opportunity in the fight against OC. Thankfully we can get the straight scoop from OCF.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | It is a pretty common concern in the science community that even the SEER database numbers for oral cancer deaths are underreported (as if they were not bad enough) because the data is collected from death certificates. How many oral cancers kill you in your mouth? Few. George Harrison's cause of death is listed as brain cancer.... where did it start? Oropharyngeal, to the lungs to the brain.
That the media gets it wrong is little surprise, given the superficiality of reporting these days and the speed with which stories must be produced. If they can't get oral cancer right.... what else can't you trust from the talking heads in the media?
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Who's next? Heff?!? God no!!! Of course I only read them for the articles, honest 
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | And with that smiley face Eric we believe you...not 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | 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 | My wife gives me a Playboy subscription every year on Valentine's Day. The pictures have always been more classy than Penthouse's and the articles & interviews are indeed worth reading. I was tempted to say that I read it for the Gahan Wilson cartoons. (The October issue had a two page -8 cartoon spread.) [For the non Playboy readers,Gahan Wilson's cartoons are macabre masterpieces and totally unlike the regular playboy soft core cartoons.] But I don't have to lie and my wife even cuts out some of the pictures to adorn her handmade Valentine cards. I'm a lucky guy
Charm
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: Nov 2010 Posts: 36 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 36 | Now there is a gal who knows how to make her man happy! (wink)
55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I always enjoyed Asa Baber's articles...he was a favorite of mine.
I had to stop my subscription...too many pics of Hef's party's...it became boring.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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