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Yes. I LOVE THE RSS feed of OCF. Now I finally have a much better answer to the constant variants on the question of how did I get base of tongue cancer. Did I smoke? (tobacco did it) Did I drink? (alcohol did it) Was I a slut? (HPV did it). On this board we know none of the above is usually the correct answer even if we experimented with all of the above when young.
It's annoying and sometimes in the haze of pain of treatment even feels accusatory. thanks to OCF's RSS news feed: I have a new answer: didn't ya hear: Burning incense increases risk of cancer. It was when I went to college in the late 60s. See the the October 1, 2008 issue of CANCER, a peer-reviewed journal of the American Cancer Society. Okay, Okay, it specifies upper respiratory tract cancers ( but its definition includes nasal/sinus, tongue, mouth, laryngeal and other cancers) "Given the widespread and sometimes involuntary exposure to smoke of burning incense, these findings carry significant public health implications"
Not that I won't continue to educate people on HPV or smoking but sometimes I just want a more gentle smart ass answer thank "bad luck - could happen to you" (as my user name suggests, I am aiming at becoming charming in 2017.)

Last edited by Charm2017; 08-26-2008 11:19 AM. Reason: hit send too soon

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: May 2007
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You are right, nobody is truly safe from this and I think this is why people want to reduce it to a simple B follows A.
Some people are genetically predisposed while others are more lucky through no virtue of their own.
There are however factors that one can avoid. If you are a heavy smoker and get cancer this is of course still tragic but not exactly a surprise statistically speaking.

M





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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You keep on plugging away and maybe, just maybe you'll reach your goal by 2017. lol


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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It could also just be bad genes. My grandmother has been a smoker forever, and she's 87 without cancer. Her son, my uncle, has been a chronic alcoholic since he was 20--he's 69 now. He would drink in excess of a couple bottles of soju everyday. Never had any cancer. He recently fell down from being so drunk and suffered a concussion and broken hip. We think he's gonna die soon from that.

Who knows.

What we do know is faulty genetics are responsible for higher incidence of certain cancers. Mutations in the BRCA1 and 2 genes have been linked to earlier and much higher rates of breast and ovarian cancer than the general public. You can get tested for this. Another gene, like HNPCC, have shown to greatly increase your risk of colon cancer.

I, on the other hand, will probably get cancer. I believe in the black swan event.

Last edited by MSG; 08-26-2008 07:28 PM.
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A Black Swan Event..... Jeeze do I love it when someone on the board pulls out just the right metaphor for the discussion. The unknowable unknowns......

For those of you that don't get it, the NY Times did a nice piece awhile back http://www.nytimes.com/2007/04/22/b...1078f2b4a98c&ei=5070&oref=slogin


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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You mean I have to stop burning incense too?????

Lol. I am a walking black Swan event I sometimes think. I've been wanting to read that book for a while but with the semester jumping into high gear already, it probably won't be soon.


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"
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PERFECT on so many levels. Brian's link to NYT explicating MSG's Black Swan reference has the quintessential quote on what makes this forum so different: "...If you want to get an idea of a friend's temperament, ethics, and personal elegance, you need to look at him under the tests of severe circumstances, not under the regular rosy glow of daily life. " Plus I now have yet another answer and one which let's me drop an intellectual reference [the theory started with John Stuart Mill in the 1800s] (assuring my friends that I'm truly back)that also has received recent mainstream media popularity [Taleb's book]and has the added bonus of being explainable in pop culture terms ("You know, like in the X-Files")


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
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Geez and I always thought it came from kissing a monkey. Darn and I killed my moonkey!!!


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Soju? What is that?


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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Next time you are in Korea you should try out the effect...... though traditionally made from rice, most major brands supplement or even replace the rice with other starches such as potato, wheat, barley, sweet potato, or tapioca. Soju is clear in color and typically varies in alcohol content from about 20% to about 45% alcohol by volume, with 20% being most common. Its taste is comparable to vodka, though often slightly sweeter due to the added sugar in the manufacturing process. The hangovers are unbelievable.......


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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Yeah sounds like just what I want, an unbelievable hangover. So I guess this is like Sake?


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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AAHHH....warm sake...Not sure about that...Sake never tasted that sweet to me....

My Doctor's told me not to drink...at all....


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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More like kerosine to the uninitiated. Of course I am offering you a 40 year old memory. Those days are way in my past.


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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Gee Brian,

Is there anything that you don't know????


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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When I was working on a theme park in Tokyo, two of the contractors threw a big party for us and, with great ceremony and ritual, cracked open a box of sake. I am not a fan of sake at all, but it was fantastic. Very smooth and easy to drink. Lots of people drank a lot more of it than I did!


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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The question is, is they any mistake I haven't made......


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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Brian

For all the good work you do, I am glad that here is one "mistake" you have not made that I clipped today from a very popular web site for federal employees:

Dave Freeman, the 47-year old author of 100 Things to Do Before You Die forgot to include "wear a helmet around the house", died this week after hitting his head in a fall at his home in California.

Another Black Swan event. In discussing his death, the book's co-author said: The title meant "you should live every day like it would be your last, and there's not that many people who do," Seemed appropriate for this forum, where we all learn that lesson.


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
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