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#116470 - 05/10/10 12:12 PM Re: need to stop losing weight [Re: MikeC]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8255
Loc: Gulfport, Florida
It's not to late to have your cancer cells tested for HPV. You don't mention a tobacco history but by your description you so far fit the HPV+ profile.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#116472 - 05/10/10 01:20 PM Re: need to stop losing weight [Re: davidcpa]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 50
Loc: DFW
I smoked a pack and half a day, but quit ~15 years ago. Drank beer. My Oncologist said both were risk factors (as you guys know) but that he could not call either 'the cause' in my case. He said I didn't drink enough or smoke enough to pin the cause on either.
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116500 - 05/10/10 08:47 PM Re: need to stop losing weight [Re: MikeC]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8255
Loc: Gulfport, Florida
Get tested for HPV.

He's also not qualified to tell you that your smoking/drinking habits of the past didn't have anything to do with your cancer either. Even if you test positive for HPV your smoking/drinking history may well have played a role in your cancer and may well play a role in your response to Tx.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#116516 - 05/11/10 02:46 AM Re: need to stop losing weight [Re: davidcpa]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4646
Loc: Laguna Niguel, CA
Kinda academic at this point as to what the cause was. There are tests to explore this in the research world, but what difference would it make? My experience is that doctors seldom tell their patients that their lifestyle choices when they were younger brought them to the disease. It serves no good, even if it is fact. The patients end up beating themselves up needlessly for the choices earlier in their lives, and at this stage of things, what good does that do? One more frustration, One more, emotional burden to bear. It is easier just to say "I cannot say with certainty why this disease is in your life.... let's concentrate on making you well."

For me, I lost track of all the bad lifestyle and other choices I made in my younger years. We are all architects in some way (for the most part) of our own situations in life. I can't undo the past, I can only deal with the present, and only wonder about the future.
_________________________
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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#116526 - 05/11/10 12:33 PM Re: need to stop losing weight [Re: Brian Hill]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8255
Loc: Gulfport, Florida
Well I must respectively disagree with the statement "what difference does it make" because to me it made a difference. I avoided tobacco my entire adult life; I drank only casually; I always ate whatever "people" said I should and I avoided what they said not to eat and I exercised and tried to maintain a very healthy lifestyle. So this was my choice and I didn't want to hear that I had cancer caused by tobacco and alcohol and I hated when my doctors including Moffitt said "what difference does it make, you have the cancer and we're going to treat you the same way."

So I underwent my Tx and then searched and searched and finally found a link to HPV and then had to persuade Moffitt to send my slides to Johns Hopkins where they tested positive for HPV. Since then I have been on a mission, as all of you painfully know, to elevate the knowledge of HPV in this world.

My quest worked for me so if there are people out there just like me then you don't have to be satisfied with "what difference does it make." If it does make a difference to you then maybe you can make a difference. Looking back I have gotten articles written about me and my HPV; appeared on TV; appeared on radio; testified at the Florida House; testified before the CDC; talk to 100's of OC patients and caregivers every year; teach a yearly class at Moffitt; responsible for Moffitt now testing all HPV likely patients and perhaps influencing my RO to start his HPV study. Look at Brian, he was so touched by OC that he gave up his other life and started a foundation that is second to none in our cancer and that most other foundations could learn a lot from.

OK off my box.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#116548 - 05/11/10 05:30 PM Re: need to stop losing weight [Re: walknlite]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 50
Loc: DFW
I didn't mean to get you two guys going at one another... :-)

I will asked my Dr about HPV. But, I am post treatment now, so I am not sure what difference the information will make.

Also - what do you mean my Dr isn't qualified to tell me the source of my cancer?

I was treated at the Cancer Center at Baylor in Dallas. I know Anderson in Houston gets all the press, but I was very impressed by my entire team of Docs at Baylor. I'll name'em if anyone needs a reference there.
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116549 - 05/11/10 05:52 PM Re: need to stop losing weight [Re: MikeC]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 481
Loc: NW Ohio
Hey, everybody, I never smoked in my life, was a very casual drinker, and I was also tested for HPV when I had my surgery. The test was negative, so I have no idea why I got it! My surgeon told me that there is a percentage of women around my age who get it, but don't fit any of the patterns. He said that it could likely be a virus of some sort, one that they haven't even discovered yet.
_________________________
Female, nonsmoker, 68, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive surgery which will involve lifestyle changes.

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#116560 - 05/11/10 09:47 PM Re: need to stop losing weight [Re: zengalib]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8255
Loc: Gulfport, Florida
Four years ago when I was Dx'ed almost everyone was tobacco related. When I found out I was HPV+ it seemed like we started to see more and more come to the site that way. Then about 2 years ago we began to see a few much younger people come here who were non smokers but their cancer was in the forward part of the tongue and they tested negative for HPV so now it seems we have 3 groups, 1. HPV+, 2. Tobacco related HPV- and 3. Non tobacco related HPV-. HPV+ SCC has proven to be easier to kill and therefore less chance of recurrence while both HPV- types are typically the opposite.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#116562 - 05/11/10 10:23 PM Re: need to stop losing weight [Re: davidcpa]
MikeC Offline
Supporting Member (50+ posts)

Registered: 05/08/10
Posts: 50
Loc: DFW
So I want to be HPV positive??
_________________________
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.

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#116564 - 05/11/10 10:49 PM Re: need to stop losing weight [Re: MikeC]
Elianne Offline
"OCF Canuck"
Senior Member (100+ posts)

Registered: 03/13/10
Posts: 126
Loc: Canada
I can only tell you what Gordon's surgeon said upon diagnosis:
"if you have to have oral cancer, this (HPV-related) is the one to have."
OK, he has a lousy bedside manner, but knows his stuff. HPV apparently
responds better to treatment than OC caused by smoking and/or drinking.
Anne
_________________________
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.

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