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#116566 - 05/12/10 12:15 AM Re: need to stop losing weight [Re: Elianne]
Patcey1 Offline
Supporting Member (50+ posts)

Registered: 09/28/09
Posts: 63
Loc: New Jersey
None of my doctors have ever mentioned HPV. How do I find out? I'm scheduled for surgery thursday; do I ask then?
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011

#116588 - 05/12/10 04:32 AM Re: need to stop losing weight [Re: Patcey1]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
They can test a sample taken at the time of the surgery, it is not expensive, and is a common test. If they are not capable of doing the testing it can be sent to an outside lab like the one a Johns Hopkins, and they will do it for them.

By the by, no one got my respected friend David and I going again, a search of the boards will find that we have this argument as a matter of routine about every 6 months when it comes up. I suspect that even as a science based thinker, I am less pragmatic about this than David. As long as this thing is in my review mirror, I just don't care. I don't think about it anymore than why I was a survivor in Vietnam when other better people didn't make it, nor why I survived helicopter and plane crashes that others did not. Dwelling on those things or the cause of my disease (I know, but not because I went looking) I find little purpose in, and for the most part I try to stay focused on my future. When I am an old man reflecting on the past, (hell I'm already and old man, but I mean sitting on the park bench feeding pigeons) perhaps I'll reflect on the fortunes and misfortunes of the various cards I've been dealt, how I played them, the choices that I made, the randomness of some of it, and the why of it all. For now I am too busy, to be exploring something that the answer to, will not change my behaviors or life. It does make me a bit more interesting to TV crews, when I talk about my sex life and HPV though.... It's a useful tool in my life as an advocate for the cause. But that is an application of the information that most would not have a use for.
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.

#116593 - 05/12/10 12:35 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: 8311
Loc: Gulfport, Florida
Well unlike our esteemed leader I was almost killed once in my life and I wanted to find out what was trying to do that. Maybe if I had led a James Bond life I would be more cavalier about it to. lol

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.

#116608 - 05/12/10 05:51 PM Re: need to stop losing weight [Re: Elianne]
Pete D Offline
Patient Advocate (1000+ posts)

Registered: 11/19/05
Posts: 1128
Loc: Washington
I'm going to chime in here once on David and the HPV issue.

My original viewpoint was the same as Brian's, but I have also come to see that for David it has made a big deal. Here he was going along doing all the right things when WHAM! that piano dropped out of the sky and ruined his life, also ruining his bragging rights in process. By finding out that HPV is a likely source, he is reinforced by his life styles AND he can get the word out, pointing to his own case as an example. I can certainly see that it makes a difference for him for coping with OC.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.

#116610 - 05/12/10 07:33 PM Re: need to stop losing weight [Re: Pete D]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Now if only I could find an article or research linking HPV and PEGs, we could combine both the OCF hot buttons. 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

Passed away 4-29-13

#116612 - 05/12/10 07:50 PM Re: need to stop losing weight [Re: Charm2017]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
LOL - good one! grin
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

#116632 - 05/13/10 02:34 AM Re: need to stop losing weight [Re: slim]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Personally, I think dealing with the IRS as David does, is much more dangerous than many things that I have gotten myself into (or my government has gotten me into, James Bond indeed...).

I do have a natural curiosity, and I think that David has a good point, and that is if you can figure out how you almost got hit by a Mac truck by walking against the light, sorting that out in your mind is a very useful thing, which will keep you from making the same mistake twice. With opportunistic viruses, I don't think I can do anything different now that I know of, and like a piece of lead flying around in the air in the middle of a firefight, there is a certain randomness to viruses, be they HPV or the flu, that we have no control over, and cannot avoid exposure to. I would have to remain celibate to avoid it, and in my book, that just ain't gonna be.

As much as OCF tries to inform the public about HPV16 and the consequences of getting it, the truth is that the CDC thinks that about 80% of the whole US population will have some form of HPV in their lifetimes. We do not have any idea how many will get #16 vs. the other 129 versions, but we do know that the vast majority of people that get it, will have it cleared by their own immune systems, and it will be of no consequence to them. That being said, it is impossible to know today, given our understanding of our own genetics, how to determine who is in the group with an immune system that will recognize it, and who is not.

Given that, the ONLY thing that you have control over is getting screened for oral cancer every year. Maybe you are one of the lucky ones that has a perfect, robust immune system, maybe like David and I, you do not. We can't know or control that until it is too late. So OCF's mission is to drive people to annual opportunistic screenings, and we tell them about HPV because we want them to understand they cannot control this (like they could other risk factors like tobacco) and catching it early, is your best chance of staying on this side of the grass.

I do not find anything wrong with David wanting to know. I only comment on this occasionally, (as long as the treatment protocols stay the same) to make sure that it all stays in perspective. (Please note that on today's posting by David about PEG's I bit my tongue and offered no comment about continuing to swallow things if you have one. Indicating I am capable of restraint occasionally.)

I often used to wonder what attracted me to my first wife, who in our divorce, really cleaned my clock financially and in other ways. I finally figured it out, but after the fact, it was nothing more than an interesting observation on how my hormones were raging and how little control I had over them or my emotions. I still got my clock cleaned.... And figuring it out didn't put any money back in my account.

I would also like to say for as much as David and I like to snipe at each other in good faith and jest, I also agree that his passion for it is a good thing. It has turned him into a passionate advocate, something our disease does not have enough of, and we are lucky to have his passion on our side.
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.

#117232 - 05/27/10 05:39 PM Re: need to stop losing weight [Re: Brian Hill]
airkitty Offline
Supporting Member (50+ posts)

Registered: 06/30/09
Posts: 70
Loc: Charleston,SC
I thought this thread was about food. Focus, focus.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth

#117535 - 06/07/10 01:18 AM Re: need to stop losing weight [Re: airkitty]
EmilyE Offline
Senior Member (100+ posts)

Registered: 06/06/10
Posts: 111
Loc: NC
My Mom has lost about 120 lbs..she was a bigger lady to begin with. Now shes down to 157. Ive never ever seen her this small and Im 25 years old. I wonder what happens to ppl that start out at a normal weight. Would you just waste away?
I know the cans of 'food' she supplements with are higher in calories than most but it still doesnt help
my mom, age 59.

12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven

#118356 - 06/22/10 07:43 PM Re: need to stop losing weight [Re: EmilyE]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
I think I lost a total of 110. I too was big to begin with and have never been this small. I love it. I also wonder how peopl that ae normal weight or underweight survive this horrific disease.
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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