| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | That is for sure cookey. I never missed a day without doing everything for my self including the day after I awaoke from the coma I was put into that lasted 4 days longer than it was supposed to. I was discharged the next day and we were having a major snowstorm.This was on March 8 2008. My daughter drove me to my hose where I got my van and drove 50 mile to her house to spend a few days > About 2 hours after we got to her house, I got my bags and drove back to my house. I was fine until I tried to carry my bags up the steps . LOL that was my 1st trouble.
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
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Rads started today. I am tired but I believe it is because I stayed up all night worrying about potential recurrences, job and other things. I went to the gym after and did the tread mill, pool, hot tub, sauna then 30 minutes of Korean Massage around my neck dissectomy. So I am going to the show as of now.
I am driving an hour and one half to get there then back. Rads are Scheduled for 6 weeks with I think 45-50 gy in rear of mouth and 60 70 towards front. 60 -70 is scaring me. I'm being Tomo'd. On the third week I have prepped by asking for hospitality room.
Might as well say it, I fear not having let them take my teeth. The concensous by everyone was to leave them, but notw I am worried, Nothing lasts forever.
Last edited by hisnibs; 08-03-2009 08:19 PM.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | hisnibs (where'd that name come from!): with my boyfriend, fatigue started almost immediately, along with nasty altered taste and nausea. Others don't have those effects for quite some time. An hour and a half is a looooong drive; yikes! Why would they have wanted to take out your teeth? The location of the cancer?
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | mgmichael, they take them because rads can rot them and cause infection. I had to let them take mine and had perfect teeth until OC started to work on them.
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
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | hisnibs - Are fluoride trays an option for you? That is one way you can address the teeth issue when you have to have radiation. I am in the middle of my radiation treatment (three weeks complete, three to go) and have been doing fluoride trays since a week before treatment started. My prosthodontist says I'll have to do them for the rest of my life (!) but that it may be the best assurance that I can keep my teeth despite the radiation effects.
Ask about it.
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I imagine that you will "only" be getting a combined 70 to 72 gys in total.
I hope you have someone who can drive you towards the last few weeks. You will probably get to the point that you are a danger to others to be driving especially that distance.
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: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | Well since you guys been asking......here I am! lol, and thank you for the birthday wishes! Of course last year I was in Key West drinking Irish Car Bombs this year I was sipping on VHC! Wow what a difference a year makes! So I am in the middle of my 5th week! I have been eating the same things for the past 5 days now. I switch between cream of wheat, oatmeal and yogurt and in between I drink 3-5 VHC's! As of today I weigh 189 and am still driving myself to and from 45 mins! Thursday I will start my "boost" for the last 8 treatment! I have to say the past 5 days have been pretty rough.....no more tennis or golf that has been replaced by naps! lol, they gave me liquid morphine which turned out to do absolutely nothing except make me super hot and itch! So now I am back on the perks! I take about 4 every 24 hours! I use the magic mouthwash but I just cannot take the numbing feeling, makes me gag and drool! So I have been dipping a qtip in the mouthwash and numbing only the sores....lol, which is pretty much my whole mouth anyways! So I look back maybe I would have taken the PEG, I know I am not done but what a Chore it is to make sure that I am getting enough water and calories down a day! Everytime I eat or drink I get mad because it definitely takes effort! All in all today has been a pretty good day for me, when I start feeling crummy I slam a VHC rinse my mouth and take a nap! That usually helps but then of course when you wake up from sleeping your throat feels like the sahara desert! I am on the home stretch and will keep you all posted from here on out! I am sure I could bitch about a couple more things but you already know what they are...lol! Thanks again for your support and good luck! Oh yea....def make that trip!!!!!
30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | With that name Jim you should be driving yourself LOL. I did then and still do everything myself.My total driving time is about 1 hr 20 minutes.
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
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Yeah got the trays, thanks. If anyone out there has sensitivity issues with the gel I started using an SF 1.1% GEL from Cypress Pharaceuticals.
The others caused excruciating discomfort. Even though I never had sensitivity problems until after surgery and roxicet pain killer.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Only? You have a way of making me feel like it could be worse..... 
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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