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#50008 01-26-2006 06:45 AM
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A couple of months ago in my email clipping service, which I have look for things that say oral cancer, etc., I saw an article by a group call AIM, that is a pretty conservative truth in media organization, about Clinton and the whole oral sex thing. (The clipping service caught the word oral and sent this article to me, it's not something that I generally would clip articles on


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.
#50009 01-26-2006 07:47 AM
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LOL!! Well at least he quoted you accurately. And probably got out some good information about HPV and oral cancer to people who'd have no clue otherwise.

I think it would be great if Bill became a spokesperson for OCF but let's hope Monica doesn't volunteer........ :p


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#50010 01-26-2006 09:20 AM
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OK Brian, I am with Nelie, please don't let Monica volunteer. But the first thought I had was (don't take this wrong, I do not wish this on anyone) wouldn't it be ironic if Clinton had this disease. It certainly would take the funny out of the entire event.

I love the way you write and I sent a note to Mr. Kincaid myself. So that you might see how much shoe leather I can actually stuff in my own mouth I am copying the note below.


Mr Kincaid,

At the risk that this might become something you choose to publish I am going to choose my words very carefully.

You need to understand something important that you did not address in your article and that is the guilt factor. You see the ramifications of private interactions with your spouse can lead to the discovery that your spouse is dying from a disease that you might just have given him. While what we do in our private lives is our own business it has been devastating to read the studies that have been conducted involving the effect of HPV and it correlation to oral cancer.

My husband just reached one year as a survivor. The statistics of this disease are frightening and harsh. While your article was making light of a very serious problem, someone


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#50011 01-26-2006 10:56 AM
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Brian
Sounds like you opened your mouth wide enough to put your foot in it...
Still maybe we all need to talk more openly about things, but this has got to be a grey area, it is easier to blame smoking than to dig deep into the sexual habits of cancer sufferers, ( or with Clinton, Cigars and his oral sexual habits)
So now we need people to say that they never have smoked, drunk alcohol or had oral sex, then to say shit how did we get cancer?
I understand that cervical cancer is non existent in Nuns who never have had sex?
Perhaps the writers of lurid paperbacks should read your article and then maybe the heroes of the stories would portray a different attitude to casual and unprotected sex..
Right that should have opened a can of worms...
Look forward to all your comments
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#50012 01-26-2006 12:21 PM
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Helen, I guess my only comment at this point, is that we do not know all the mechanisms by which someone might contract HPV, though clearly sexual contact of all types, and if we are going to be completely graphic and candid here, that includes, conventional, oral and anal that are well demonstrated. HPV's impact on cancers may even extend outside of the world of the contact areas, and there is very preliminary evidence finding it in cancers in other areas of the body. Merck in their vacine program is also looking at the anal cancer world and of course besides hetrosexuals, that includes the homosexual male community. HPV is a problem of significance the degree of which is still being discovered.


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.
#50013 01-26-2006 01:01 PM
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Ok let's have this discussion. It seems that more and more we are discovering that sex is bad for us. So maybe it is time for us to quit hiding behing the cloak of uncomfortableness and just step out and speak the truth.

No one likes talking about cancer either and we know where that can lead.

I am a firm believer that if we were more open about things as a community of people then we would be further along in many situations than we are now.

Bravo Brian and Helen.

I had HPV for 12 years before I had my hysterectomy in Nov. 2004. Stupidly I put off getting it properly checked for 8 years after the first abnormal smear came back. Truly stupid thing to do I admit. But, had I known that there was a connection between HPV and cancer, and the fact that I already knew that HPV is most often sexually transmitted, traditional, oral, or otherwise, then I would have refrained for the protection of my partner.

Now, that being said there is a strong possibility that I would be single right now as well but hey, you know how men are.

My point is that my ignorance might have created this situation and I can make sure that others are aware and armed to prevent!

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#50014 01-26-2006 01:04 PM
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Oh I forgot. I got the following reply:

You're right. I wasn't intending to make light of anything. I think it is deadly serious. But it will take a celebrity - and I think Clinton may be the one -- to make it an issue. Thanks for writing.

So I guess we should start writing letter to Bill about becoming a spokesperson??

I guess if you are gonna have a famous face why not a former Pres???

Brian, if you approve I will write an email to that address that Mr. Kincaid had in his article.???

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#50015 01-26-2006 07:01 PM
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Anyone can do as they wish. I think that even though Bill talked about the Monica thing in his book, he wants to put this issue and very unpleasant time behind him. He's an articulate and smart guy. He's definately charismatic, at least to one half the American population ( as polarized as we are right now) and even half is more people than we are reaching as things stand. But do I seriously think he would want to continue this dialog..... not a chance. The man has regrets, I heard him talk about Rowanda as probably the greatest of his presidency. He's owned up to his mistakes, but I believe that he would like this in his rearview mirror... and in spite of all the good it would do in the world, I, in his shoes, would probably feel the same way. But you could write him, there is no down side to that. He may be way more humble and wanting to do something for the record that might set a wrong right than I give him credit for, you just never know. In our case, getting celebs to do things is pretty much "shots on a goal" ...any hockey fans will get that.


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.
#50016 01-26-2006 07:30 PM
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I wouldn't want to say that sex is bad for us. It is a beautiful thing, a mechanism for sharing intimacy as well as the more basic satisfaction of our natural physical instincts. Truth be known, it's a dangerous world out there, and as I have said many times before, you could just as easily get smacked by a truck tomorrow as have a recurrence, or develop an HPV related malignancy for instance. When it comes to sexually transmitted disease, I am certainly no authority, though as a child of the free love 60's, I was far from celibate. Really far


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.
#50017 01-27-2006 04:15 AM
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Because he knows I am interested in HPV cancers, Brian sent me an abstract of an article on finding HPV-18 associated with some breast cancers in Australian women -- the authors felt the women may have transferred the virus from their genital region to their breasts via their own hands. So sex per se is not needed. These are ubiquitous viruses, and while most people appear to be able to "shed" them -- my gynecologist said that a percentage of women who had HPV+ pre-cancerous lesions, when they went to have cryosurgery (or similar) to remove the lesions, the doctors found the lesions had disappeared -- not all people's immune systems can. Also there can be a long lag time between infection and development of any cancer -- Dr. Gillison told us 15-20 years is not impossible, which really complicates things. Not worth worrying about the when and who...

Gillison has done a study which relates HPV+ or HPV- HNC to various "life-style" factors, which includes sexual practices but also, things like drinking, oral hygiene, etc. which also seem to enter into the equation. That paper is in preparation.

Barry has decided to enter a trial this spring for a new therapeutic HPV-16 vaccine -- that is, one to be given to those who already have HPV+ oral cancer (and have been treated conventionally). This is just a stage 1 trial looking at response to dose, so obviously it is going to be many years before this will be available clinically, if it is found to work and not cause serious problems. (A stage 1 trial started earlier with same vaccine, on cervical cancer patients, found no side effects but too soon for data on effectiveness).

Hopefully the future, for many HNC patients, will be brighter...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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