Previous Thread
Next Thread
Print Thread
Joined: Feb 2010
Posts: 3
JLG Offline OP
Member
OP Offline
Member

Joined: Feb 2010
Posts: 3
HI, It's been 6 years nearly since I finished treatments and aside form having little use of salivory glands I'm hanging in there. While I didn't have surgery I did have concurrent radiation with Cisplatin treatment and its was a tough 2 months and then some. Had PEG for nutrition and only dropped 10 pounds but back to 230 now (I'm 6'5"). Never a smoker and moderate drinker they think that reflux may have caused the cancer. Things remain sore at times in my mouth and swallowing is somewhat altered. Occassional bouts with thrush and ulcerations. But PET scans were clear and my ENT scopes me every 6 months. Anybody have similar experience?

Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
My bet was HPV caused your cancer. See my Signature Line. Recent studies have concluded that with the way you presented yourself at Dx, similar patients tested positive for HPV over 70% of the time.


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.
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
It is so nice to fine a survivor. Makes me believe that I can make it to. I am just 4 weeks out of treatment.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
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
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
My OC was UNIQUE the Drs at Ohio Sate, WVU Hospital and in Wheeling told me. But I have wondered about the reflux too. I wore a monitor home from Pittsburgh and went back the next day for the results. My acid was higher than the meter would read and I had to have a NIssen Fundiplication . This is where they wrap 1/3 of your stomache around your esophagus. I had surgery, both sides of my tongue removed, teeth removed, I had radiation and chemo as well as after rad seed imlants in my tongue. I wonder like you if this refluz cold have caused the OC. Might possibly be asbestosis too which I have,. Congrats on your 6 years.


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

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5