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#107955 11-30-2009 10:19 AM
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Markus Offline OP
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Maybe I am running in open doors but check this out!

See also reference to OCF, HPV link and screening.....

http://www.cnn.com/2009/HEALTH/11/30/oral.cancer.women/index.html


M

Last edited by Markus; 11-30-2009 10:24 AM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I am a little surprised that they found the HPV in her cheek cancer. I am also a tad surprised that she has the bad side effects she still has. I am also surprised that her doctor was quoted as saying "It's something we are very much aware of and look for, ESPECIALLY IN WOMEN (emphasis added)," he said.

On the positive side OFC got some good mention.


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.
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Markus Offline OP
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Well, the main thing we can hope for that awareness for oral cancer is raised. I also think that it is important to make it clear, that you do not have to be a 60 year old male chain smoking alcoholic to get this. Also the benefit of checkups and early detection was made.
RE HPV: Just last week I talked to the Director of the National Institute for Biological Standards and Control (UK) re oral cancer and HPV and HE though HPV was only involved in a minor portion of oral cancer occurrences... David I was thinking of you then, if your ears were ringing.
(for what is is worth I emailed him some info)

M




Last edited by Markus; 11-30-2009 04:15 PM. Reason: word duplication...

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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David

Perhaps the fact that this prothodontist practices in Bethsada MD, home of NIH may account for his familiarity with HPV and his vigilance in examining women patients. I also noted that CNN and other MSM really like quotes about HPV links to Oral SEX. Consider spicing up your gardasil presentation to legislators with a warning that if they don't vaccinate boys & girls, they may put at risk losing what appears to a favorite legislative (even documented presidential) pastime wink


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

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My cousin just emailed me this link today. David, you posted on the thread about CNN wanting woman in the PA, DE and VA area. You had offered to wear stilettos..lol I never heard anything about that and I asked again. Have you heard anything? This is interesting. It doesn't seem to me that they activly look for HPV in the medical community. I've begged borrowed and stole to get tested for it and I still don't really know anything. I did join and study they are doing and Fox Chase Cancer Center which is where I go but I have not heard anything yet.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Well I tried to post to the story making the same points that David did, while also applauding CNN's decision to run an important story that raises awareness. But the moderator has chosen not to let it be posted. Perhaps this is because I was critical of the doc, who clearly doesn't know how to screen properly given his description of it all. Bottom line, awareness was raised by a well watched and read organization for our disease, the HPV connection was hit, and OCF got a link in their story. It was a good day all the way around. We can't expect them all to be home runs, but this was a base hit for sure.


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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This is the article that I was contacted about. The reporter has kept everyone who offered their contact information on file. He said he wants to pass it on when he is contacted for follow ups. He went with the woman in the article because she was located right there in DC near his office. He said he is anticipating a few follow up articles, hopefully someone from the OCF forum will get to be heard!


Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
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David,

You raise an interesting point and I'm curious if you or Brian have any further comment on this. I have never heard of any HPV+ lesion any place other than BOT, tonsils or oropharynx.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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There are no absolutes in cancer. 1 in 1000?


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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Markus,

My ears were ringing but that was probably due to the Cisplatin. lol

Jerry,

One of the problems with HPV has always been and unfortunately still is, is that HPV's PROVEN connection to H & N cancers still remains unknown to many physicians and on top of that many are reluctant to test for it EVEN where the primary is in the Oropharynx region where it has been documented that more than 70% of the time it's HPV+. Certainly if all H & N cancers (at least those without a recent tobacco use history) had been tested for HPV since say 5 years ago, I bet we would know a lot more about HPV than we do today.


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.

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