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Joined: May 2013
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Sturt1 Offline OP
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Well we just had our first CT scan post treatment --- and today we were given the great news that it was all clear ! I can breathe again ! Was some opacity in one lung but apparently it was there pre treatment and told it is unchanged. We were told we will follow up with monthly visits and scopes but will not have another scan until next August...I guess was a little surprised at that. sound normal? We vacationed last week ( much needed getaway for both of us ) and I got 9 pounds on him - was very excited about that. ( not so excited to learn I gained almost the same - lol) they have scheduled an ultrasound of his gallbladder as his bilirubin has been slightly up the last two visits, and he has had some vague pain in abdomen. Hoping all ok? Re dentist - we were never given any guidelines- do we continue to visit every six months or more often? Wanted to share our news, and of course I always have questions ! Thanks !


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
Joined: Mar 2013
Posts: 421
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Congrats on the NED! That's great news. Hopefully everything is good with the gallbladder.

My dentist recommended a general cleaning (no more deep cleanings) 3 times a year with an exam and fluoride treatment. I use a fluoride rinse twice a day (Listerine children's rinse - the blue stuff) as opposed to trays. My team was good with that schedule.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Congrats on the great news!!!

Continue to see your dentist every 6 months for regular check ups.


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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Congratulations! There is no consensus when a routine scan should be done post treatment, other than for any suspicions. In fact, the NCCN guidelines for the post treatment scan is recommended 3-6 months, but only for certain H&N cancers, like oropharyngeal, a few others, but only for T3 and T4 disease, and not others. This is just a guideline, and my experience at several hospitals was a scan at 3 months post treatment, and a scan every 6 months thereafter, but I never made it to that point before I had a recurrence, until yesterday. ENT's have a guideline from their professional otolaryngology society, once every 1-3 months the first year, progressing a month further apart each year, up to five years, but have visited them much sooner depending on my medical need. A recent report says the palpable is just as good in detecting cancer as a scan, but I read otherwise, that a PET scan is much better in detecting cancer than a physical exam by a certain percentage, which I forget, but was quite high, and can detect cancers as small as 5mm.

As far as dentists, I would want to visit more than once a year, probably every three months. Radiation does damage directly to the teeth, gums, as well as by the dry mouth causing demineralization of the teeth, cavities. Mine were fine post treatment in 2011, for a while, but then started to get the white spots, demineralization, and now need all my teeth removed. Some dentists do remineralization of the teeth, but I didn't do that nor did I use a dental tray or prescription fluoride, even though I knew were available.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Great news!!


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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"OCF Canuck"
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Yeah,.. After two clear scans I'm told no more... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: May 2013
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Sturt1 Offline OP
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Posts: 42
Thanks everyone-wanted to share the good news. Also wanted to thank each and everyone of you for your input and feedback , and allowing me to pick your brain through this journey. You were a big support to me -( still are), and even though I'm a nurse with some oncology background, it's a whole different animal when your dealing with your own family member! Besides I know where to go for the best input and suggestions- it's to the people that have actually walked down the paths themselves- and you have helped me survive this nightmare when I had my doubts either one of us would! A million thanks. Will do our best to give back. Hugs


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED

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