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#142910 11-14-2011 03:00 PM
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vv58 Offline OP
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I am a 52 y/o male. I am a former smoker. I quit in 1993. I drank a few times a week. I didn�t think that I was a heavy drinker. I exercised 4-5 times a week. Bicycle, jogging weights.

On June 1, 2011 I was driving from my home in PA to FL for a vacation. I was rubbing my face trying to shake off the fatigue and I noticed a small lump on my neck. I immediately thought it was trouble. I called my family doc when I got home the following week. He said he didn�t know what it was and referred me to a surgeon. I went to see the surgeon who told me it was a lymph node but he told me I should see an ENT to check it out. I went to see an ENT who took a needle biopsy on the first visit and put a tube into my nose and down my throat to look around. He said everything looked normal. Four days later I came out of a meeting and I had a message on my cell phone from the ENT. I called back and he told me I had cancer in the lymph node but it was not the origin of the cancer. He had me get a PET scan and did a procedure where they went down my throat while I was under anesthesia and took a number of biopsies.

The PET scan showed three lymph nodes involved and he discovered a small spot on the base of my tongue which turned out to be the primary tumor. The pathologist did a test and determined that the tumor was not HPV related. They initially thought it was because I quit smoking 18 year prior to the diagnosis and I was otherwise healthy. The ENT referred me to a radiology oncologist and a medical oncologist to give me concurrent chemo (cisplatin) and radiation. The radiation was 5 days a week for seven weeks. The chemo was going to be once every three weeks, but after the first dose they cut back the dose and gave it to me once a week. The large dose was going to permanently damage my hearing.

They recommended and I received a port to get the chemo, and a PEG tube. I waited until I was 3 weeks into the radiation to get the PEG tube. I started using it the next day. I had a bad case of thrush. The thrush cleared up but I kept using the Peg tube until three weeks after I was done the radiation. Between the pain and the nausea it was easier to just use the PEG tube.

I started the treatment on 8/8/2011 and finished on 9/26/2011. It made me sick, tired and beat me up. I had pain in my mouth and throat but I got through it. I lost 30lbs. I have since gained a few back and I am starting to get some strength back. I am not so tired all the time. Eating food helps.

I am now waiting to get a follow up PET scan and another look down my throat in December. The lump went away. The lump was the only way I knew anything was wrong. I felt perfectly fine before I received the diagnosis. Now I am on the mend and waiting to see what happens next.

Vince


scc bot stage IV diagnosed July 2011 - 52 y/o
concurrent cisplatin and rad started 8/8/11 finished 9/26/11
Peg in 8/26/11 out 11/14/11
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Hi Vince,

Welcome To OCF. You'll find the information and support on this forum valuable.

Question for you have you had a CT Scan? I have read on here CT Scans are better than PET Scans. I had one PET/CT Scan at the beginning now I have only CT Scans. Did you get treated at a Cancer Center?

It sounds like you're doing well. Your Dr.'s didn't waste any time which is great.

Take care and I hope all goes well for you.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Hi Vince, welcome to OCF! Im sorry you have gone thru so much. Oral cancer is not easy to go thru. Glad to hear you are doing so well with your recovery.

Im in the Allentown area. There are several of us on the forum from this area. Just over the weekend, I met another OCF member who lives nearby.

Best wishes with your continued recovery and upcoming scans.


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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Hi Vince, congratulations on getting through the treatment! It's very gruelling.

My brother was mucked around by doctors for months after he queried whether he had oral cancer, before it was determined, so I think your doctors sound very on the ball.

This forum is a fantastic resource so you've finally found the right place to help you with a whole range of issues, not the least being emotional support.
Good luck with your scans and best wishes to you.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Hi there - welcome! I think everyone here would agree rads sucks but you weathered it and have done well. A lot of the BOT cancers here are HPV related - I'm an oral tongue cancer fighter... I too am non HPV related but I also don't and never have smoke or drink. While a lot of time it's a contributing factor - it's not always! Take care and good luck on your scan - also pets are notorious for false positives - though if you havent had surgery I might be less of an issue.Take care!


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
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Welcome, Vince.
I wish you the best with your healing and follow up diagnostics. Once we've been diagnosed and treated, waiting can be one of the hardest things to endure. I find this forum so helpful. We understand what an ordeal oral cancer is and you'll find lots of knowledge, experience, and support here.
Be well,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Vince,

Classic presentation, classic treatment and classic reaction. A study has concluded that with basically your presentation you had a 70.3% chance that your cancer cells would have tested positive for HPV so I am a tad surprised that you didn't. Your recovery can take every bit of 2 years so please be patient. I am 5 plus years from the end of my Tx and all is good.


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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vv58 Offline OP
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I am being treated at a Cancer Center affiliated with Fox Chase. I haven�t had a CT scan but I did have an MRI with contrast the ENT was looking at when he was talking to me.

The ENT took the biopsy on the first visit. I was grateful to get it done ASAP even though the needle in the neck was no fun. It was picked up fast and I got into treatment right away. This is the treatment I was looking for. Now I�m just waiting for the results and worrying about something popping up later.

Thank you for all your support.

Vince


scc bot stage IV diagnosed July 2011 - 52 y/o
concurrent cisplatin and rad started 8/8/11 finished 9/26/11
Peg in 8/26/11 out 11/14/11
Joined: Jun 2009
Posts: 440
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Welcome Vince!

Glad you are done with treatment, now off to recovering and clear scans!!!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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vv58 Offline OP
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My PET scan yesterday came out clear. Sweeeet.
My new friend is this adema/fluid in my neck and chin. I can deal with lymphadema, dry mouth and lack of taste as long as I have a clear scan.


scc bot stage IV diagnosed July 2011 - 52 y/o
concurrent cisplatin and rad started 8/8/11 finished 9/26/11
Peg in 8/26/11 out 11/14/11
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