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Christine,

Thank you for the suggestion. I just sent my letter to the op-ed page of The Inquirer. I'll let you know if it gets published.


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
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Jill, my heart goes out to you. I'm so very sorry.
I hope your email strikes a chord in those people(KISS 108?)


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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Well, below is the text of my second post yesterday on the NY Daily News website. But let me tell you, I ain't going back there. It's like visiting a sewer. I am gobsmacked by some of the posts.

"I hope Michael Douglas and his family know that there are many, many thousands of people around the world who applaud his courage. One thing is absolutely certain - he has saved lives by bringing this issue to the public's attention, if it leads to an increase in vaccination rates for boys and girls.

Stop and think of the service he has done - he didn't have to go public but wants it known that this is a preventable cancer, which can be vaccinated against and which should be screened for.

The majority of women who have been diagnosed with cervical cancer have been exposed to HPV, through sexual intercourse, yet we don't rush to humiliate them.

Let's grow up and leave our adolescence behind and have an adult discussion about this health issue. Get your children vaccinated, and the next time someone makes a joke about Mr Douglas be big enough to say, yes well he's made me stop and think about my own kids health.

I applaud his courage - and thank him for putting himself so uncomfortably in the spotlight."


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Nicely said.


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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Great letters Anita, Jill and Teresa. Thank you for speaking up on our behalf.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Nicely timed and played. I think MD can handle himself, but his children and the abuse they'll deal with was the first thing I thought of, I feel for them. Totally understand why he kept this on the qt, yet just following the breadcrumbs of his past comments indicated this was an HPV 16+ tumor.

It's been my point of view that HPV, like HIV, strikes fear, then stages to "not me" before swiftly moving to late night tv ridicule. As this story morphs, recognize that so much of the commentary comes from ignorance and stupidity-by-choice.


Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
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I have been avidly following the Michael Douglas story in the news for the last few days. Like many of you, I am very pleased that this has raised awareness of oral cancer and the HPV link. I am viewing these stories from the "other side of the pond" and thought you might want to read this article from The Sun - which I find refreshingly truthful, factual and without the sneering, stupid innuendos of many other tabloid newspapers.


http://www.thesun.co.uk/sol/homepag...-oral-sex-cancer-as-Michael-Douglas.html

Great work Brian, and thanks too to Kenswife, Anita and Teresa for all their efforts.


Partner (never smoker, light drinker age 56)
lymph node noticed 7/20/12
DX SSC tonsil 8/8/12, T2 N2a M0 HPV 16 +,
tonsillectomy 8/15/12
neck dissection 9/25/12
IMRT (30) started 11/2/12 First Cisplatin 11/5/12, Second 11/20/12. Finished 12/13/12.
Follow ups - all clear
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Has anyone noted an increase in members? I don't know what it was when the article came out, but yesterday it was 8915, today it's 8921.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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[quote=Brian Hill]This is probably not going to be available until tomorrow afternoon. I did 34 interviews today in the media, on Iive radio in local markets like St. Louis, and had more conversation with journalists than I could count, giving them background information on HPV and oral cancer. I literally started talking at 5 in the morning and did not get off the phone till 6 tonight. Natalie at the office got the callers in a queue, and I started working each one. What a day�. my voice is gone. The media people were all pretty good, some were just looking for a quick factoid, some wanted strong background that took lots of time to get them to understand things, and some wanted just referrals to good doctors to get on their TV shows. LONG day, but a good day for the cause.

As we all saw today, my grandfathers adage that the "masses are asses" still is true. The comments from the general public in most of this are probably why Douglas is backpedaling on his statement about HIS cancer being HPV+, who would have guessed it would have blown up Google and the social media world when he gave one simple interview. Allen who is his gatekeeper put out the release stating that he didn't mean HIS cancer, but this is obviously not what he said when he did the original interview.

I think his entire team is overwhelmed by the public shitstorm this opened up. When I talk about my sex life on TV only my wife cringes and gives me crap, 90 % of the whole world is giving him shit. This is all really too bad. We have a celebrity advocate that was willing to stick his neck out, and what happens. Idiots happen.[/quote]

Has the interview come out yet? I've been side tracked by my husbands immune system crashing; today was the 1st chance I had to start reading the links.

[quote=Brian Hill]By the by OCF is getting slammed with interview request from the media and for backgrounder info in the disease and HPV. The interviews have not stopped since 4 AM. People Magazine, Time CNN, FOX news etc. So we are really getting lots of play from a this. I hope that Michael realizes that he is changing the world and wants to own this, not back up from it.[/quote]

If I'm reading this story Michael Douglas pleased that oral sex story raised public awareness right; he's still denying what he said?

I'm disappointed (but not surprised) that this was not done better. He had a chance to educate people with facts. I've followed him since his diagnosis & feel he could have done much more for oral cancer.

People Magazine Michael Douglas Clarifies Remarks About Cancer and Oral Sex


Aug 09 - 3 ultrasound - 7CT - 13 ENT needle biopsy 1 - 19 MRI - 24 ENT n. biopsy 2 - 31 ENT results - Sept- 2 PET - 9 ENT #2 - 22 Rt rad neck dis; rt tonsil & PEG - Nov 4 33 rads; 3 chemo - Complete treatment 12/24/09 - 2/23/10 PEG out!
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Decent article in today's New York Times. Comments are moderated, fyi, so perhaps better than in some other papers.

http://well.blogs.nytimes.com/2013/06/10/oral-cancer-sneaks-up/


Little Bird, CG to mother, diagnosed March 15, 2013, age 70, non-smoker, non-drinker
BOT, HPV+
Cisplatin and 35 days of radiation, completed June 13, 2013.
Looks like they got it all. (knock on wood)
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