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Joined: Oct 2013
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n74tg Offline OP
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2013
Posts: 34
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
Thank you Tony, very informative.


discovered a golf ball in my neck St.Paddy's day 2010.
Dx stage 4a left tonsil ca may 2010 at 50
non smoker, moderate beer drinker
HPV-16 pos.
tosillectomy
9 weeks Cisplatin
35 rads
nov.2010 PET NED
2011 2x PET NED
2012 2x PET Ned
3/13 Pet NED
SEptember 2013 Pet uh-OH.questionable and anxious
follow up pet, yup, its back.
mets to sub clavivular and mediasteinum nodes
biopsy positive scc.
trying to figure out next step
my imaginary friends think I am crazy.
Joined: Nov 2013
Posts: 34
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 34
Here is some food for thought. In regards to HPV-16. I know everybody is different and other factors probably apply but I haven't read anywhere what the incubation period from time of infection to symptoms present is. Don't know if anybody really knows yet. I do know this; since at least the mid nineties, my left tonsil has constantly ached and was at least double in size as the right one.( I looked often cause it always bothered me) I had it checked out many a time. I wouldn't seek out medical for just this. If I was at the docs office for something else or I had access to a nurse at my job, I would ask them to take a look. They never seemed particularly alarmed but told me often if it bothered me to have them removed. My right tonsil never, ever gave me grief. Only my left. Low and behold 15-20 years later SCC of left tonsil. Anybody else similar?


discovered a golf ball in my neck St.Paddy's day 2010.
Dx stage 4a left tonsil ca may 2010 at 50
non smoker, moderate beer drinker
HPV-16 pos.
tosillectomy
9 weeks Cisplatin
35 rads
nov.2010 PET NED
2011 2x PET NED
2012 2x PET Ned
3/13 Pet NED
SEptember 2013 Pet uh-OH.questionable and anxious
follow up pet, yup, its back.
mets to sub clavivular and mediasteinum nodes
biopsy positive scc.
trying to figure out next step
my imaginary friends think I am crazy.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Great article, Tony! Dr Maura Gillison has worked with OCF for many years. OCF has helped to fund her research projects for years. Im not sure exactly how long she has been affiliated with OCF and Brian but its been a long time.

Tom, from the article about Maura Gillison, I found this....And most people who develop an HPV infection do not get oropharyngeal cancer: about 90% of those who become infected orally clear the infection within two years. No one is sure why. That may be a start to getting your question answered. I often wonder if some patients with medical problems that target certain areas of their bodies that the disease takes hold of the weakest place on their body???? Just wondering.

At this time there has been alot learned about HPV but there is still much more unknown. Thru research like this more will be discovered.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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