#83411 11-03-2008 01:57 PM | Joined: Nov 2008 Posts: 10 Member | OP  Member
Joined: Nov 2008 Posts: 10 | I am new to this site and have read some of the forums and this looks like a good place to both give and receive support.
I was diagnosed with stage 1 tongue cancer two years ago. In Dec 06 I had a right side tongue resection with some lymph nodes on the right neck renoved. Margins were clean and all tissue removed from the neck was clean.
In Sept 08 I had a recurrence of cancer of the tongue but farther back on the underside of the tongue. A second tongue resection with clean margins was done.
I am now getting ready to undergo radiation therapy and after I have read more postings I will probably have some questions for everyone.
For right now I just wanted to say "Heh". That's how we say hi here in the south.
59 Male 10/06 SCC Stage 1 tongue cancer. 12/06 partial glossectemy right side, removal of lymph nodes. Margins and lymph nodes clean. 09/08 recurrence SCC Stage 1 tongue cancer. 10/08 partial glossectemy right side. Margins clean. Radiation recommended.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Hi Bill, Welcome aboard! This is the best forum to get answers to any all questions. Good luck with your future treatment. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hey to you too Bill-G.. welcome to the best people on the internet and the most knowledgable. You will get about any question answered. Our leader in here is Brian Hill and if he doesn't have an answer for you , he will find it. This is a great plce and I want to wish you all of the best from us yankees LOL
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: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Hi Bill,
Welcome to our boards. Lots of people with lots of different experiences here but all more than willing to share. It's a good place for both information and support. Best of luck.
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Hello Bill and welcome to OCF.
When you get time, please add some info to your signature so its easier to respond to yoru questions.
Sorry to hear about your recurrance. Something that helped me get thru mine was knowing I beat it once, I can do it again.
Your post said you were going to start chemo/rad. Several things to know going into it..... if you are able to eat, do it now and eat like crazy. Dont worry about calories or gaining weight, you dont want to have regrets later. As long as you can eat, get all the spicy stuff in now and steaks, bread, meats, and sandwiches even a soda. Those things will be difficult if not impossible for a while later. Also do stretching exercises to work your jaw, drink everday (dont mean booze). Swallowing is an important function you dont want to have trouble with later.
Feel free to ask any questions that may come up. Also there is a ton of info on the main OCF pages with a good search functin availble there too.
ChristineSCC 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  | | | | | 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 | When will your radiation start and have they discussed chemo options with you?
As Christine said, eat now like you want to gain 150 lbs. Eat all your favorite things. During Tx your taste will go bye bye and so will your saliva so now is the time to stock up on eating memories.
You will find this site to be a valuable asset in your war against th1s cancer.
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: Nov 2008 Posts: 10 Member | | OP Member
Joined: Nov 2008 Posts: 10 | I couldn't make it through the mask fitting. I tried the first day and lasted about 10 minutes. Next day I took valium and couldn't last 1 minute. I completely panicked. The readiologist said he can't do anything for me unless I can keep the mask on. He did not offer any solutions. I am so scared when I put the mask on that I can'stand it. I am thinking about going to a hypnotist or a therapist to overcome this fear but I don't know if that will happen soon enough. Are there any other solutions that people have tried?
I can barely make it through my normal quarterly CAT scans because of the anxiety.
59 Male 10/06 SCC Stage 1 tongue cancer. 12/06 partial glossectemy right side, removal of lymph nodes. Margins and lymph nodes clean. 09/08 recurrence SCC Stage 1 tongue cancer. 10/08 partial glossectemy right side. Margins clean. Radiation recommended.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Bill,
I wish I could help, but anything I could say would involve common sense, and phobias, as we all know, don't respond to common sense, and it sounds like that's what you have. I hope someone else here who had the same problem can help get you through it, because your life depends on it. You absolutely must find a way to conquer this fear in order to conquer the cancer.
I'll be pulling for you. You can do this.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Nov 2008 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 51 | We pumped Linda up with Ativan. Don't know if that will help since you already tried vallium. I have heard others mentioning using music and things like that. Good luck!
P.S. Welcome to the site!!
Last edited by justjan123; 11-06-2008 02:32 PM.
Cg to partner, Stage IV SCC of upper left mandible, met to lymph nodes. Dx 4/1/2008. Inopperable, 3 rounds of chemo followed by 2 rounds of chemo with 33 tx of radiation. Growth started again immediatly following. She crossed over November 30, 2008.
| | | | | 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 | Bill,
First off you must wear the mask or your precisely aimed radiation will not do the job it's designed to do and that is kill the cancer. So you are putting your life at great risk since this cancer is extremely aggressive.
That said, you now must dig as deep as you can within yourself and just do it. You really don't have any option unless, of course, you want to give in to the cancer which will kill you in about a year. It's was not pleasant at first for any of us and granted some have a worse time than others. I will say, like just about anything else, you will become accustomed to it but you have to do once to start to get use to it. Some have gotten meds to help them and I found listening to loud music did the trick for me. Even when I didn't like the song I would count to myself to see how long each position took. If you're like most of us you will have appx 35 treatments with each lasting less than 15 minutes so come on tell yourself "I can do this!!"
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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