#22792 04-12-2007 05:09 AM | Joined: Apr 2007 Posts: 37 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2007 Posts: 37 | hi i am new to all this i have had mri scan ,pet scan and ct scan my right tonsil removed and three biopsys the found the primary at the base of my tongue just above my voice box , i have just had the mask made and i am about to start 7 weeks of chemo and radition .. i see my surgeon tommorow to discuss the fitting of the peg , slightly panicing about peg insertion , and wondering how the treatment will go but it has been a great help reading other peoples problems . ps i am from england and being treated there hope you wont hold this against me ..bye for now
age 52 heavy drinker and heavy smoker stage 111 squamous cell at base of tongue trying to give them all up ,8 lot of cetuximab and 35 lots of radiation , gave up smoking at the start of treatment. only drink now in moderation
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#22793 04-12-2007 05:45 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | How great that you found this site! And welcome! There are lots of wonderful, compassionate and knowledgeable people here to help with whatever questions you have. There is a wealth of information on this site (starting with the home page) so you can put together whatever questions you have for the doctor. My son did not have a PEG but lots of people here have and if you do a search (from home page) for "PEG" you will get all kinds of encouraging information. Let us know what happens with the doctor tomorrow.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#22794 04-12-2007 06:25 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | Allan,
Welcome to the site, but sorry you had to join our club.
I had a PEG tube during my radiation so if you have questions about the insertion, care, etc. let me know.
Set your mind to fight this and you will be surprised at how you can handle the treatments.
Fight hard and Keep in touch.
Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#22795 04-12-2007 09:22 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Hi Allan,
Welcome, Yes your Peg tube is very important. It will help you keep up with nutrition and fluid intake during treatment. They will show you how to use. Don't worry it's not that bad to have put in.
As far as treatment everyone is different. Some have gone through it with out to much trouble and others all kinds of side effect. I was one that had hard time with the Chemo. The radiation was OK, but there are side effects such as dry mouth, and mouth sores.
Try and just take one day at a time and ask your Doctor any and all questions. Feel free to post here if you can not find an answer by using the search at the top.
Take care
Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#22796 04-12-2007 10:52 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Welcome, Allan. We're here to help. No matter what your question is, I promise that there will be somebody here with the answer. And no question is too small or too large to ask. This is a caring, safe place.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#22797 04-12-2007 12:03 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Welcome Allan,
Sorry you are here, but glad you found this board. As the folks above have indicated ask anything of us and I'm sure you'll get an answer. Just keep in mind the treatment effects all of us differently and it's amazing to see that some folks barely suffered while others had very serious side effects.
Where abouts in England are you from?
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#22798 04-12-2007 12:52 PM | Joined: Feb 2007 Posts: 76 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Feb 2007 Posts: 76 | Hi Alan
This is a wonderful site and will help you though your journey. My husband is only 3 rad treatments from being done. This site has help me to know what to watch for and when to talk with the doctor about things.
Marvin had a peg put in also and it has been a live saver for him. We use it for all of his nutrition right now and even for his daily med.
It took us a few tries to get the timing down of putting in the food but once we figured it out its been easy. The trick was for us not to put it in to fast. Marvin had to go though my putting it in to fast and then it came back up. So slow and easy is the best. Make sure to get enough water, food and rest though this.
We also have a stronger prayer group. If I can help you just let me know. There are alot of people on here with good wisdom on getting though this. You will be in my thoughts and prayers as you start your journey.
Barb
CG for Marvin.
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#22799 04-12-2007 03:01 PM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Hi Allan,
We hate to see you here but as long as you are you might as well settle in and keep this site close to your side. I did not even find it until I was a month out of Tx and only wish I had known about it earlier.
I was close to where you are now just about a year ago, also with base of tongue, right side, Stage III/IV. I also had a PEG installed and even though I rejected the thought I was told that I had no choice if I wanted to be treated at Emory Univ. Hospital in Atlanta. The tube was a royal pain in the "arse" but it didn't take me long to find that it was necessary. Trying to eat by mouth starting around the 3rd or 4th week of treatment was like trying to eat through a garden hose. The biggest problem with it in my case was simply keeping the darned thing taped up to my stomach and chest area. I went through a lot of adhesive tape and eventually pulled all hair off stomach and chest from the tape. My tube was removed almost 8 months ago and I still have what looks like a small navel to go along with my real one. Acutally, it looks like a healed small caliber gunshot wound but and is one of the battle scars I will always have to be a reminder of this horrible disease.
Sit back, relax and be ready to accept whatever they throw at you to attack this monster. It is somewhat of a dark journey and it seems as though it affects everyone differently. The best part is that it's over before you know it!
Check in often and keep us updated on your progress as well as any questions or concerns.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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#22800 04-12-2007 11:04 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Allan from one brit to another
Rob and i live in Grayshott in Hampshire and attend The Royal Surrey Hospital in Guildford and the wonderful St Lukes Cancer Centre that is attached to it.Like me you will find differences in treatment and medication between America and England but feel free to E-mail me if you have any USA/UK questions i might be able to help you with.I sourced all the biotene dry mouth care products on line and got them delivered to the house in 24 hours.My single best buy was aqueos cream for his face and neck which to date has stopped his skin breaking down,and is readily available from any pharmacy for very little money.We also found that the recommended baking soda and salt mouthwashes were better than any commercial product we found.
Rob had his PEG fitted in hospital but only after two weeks when he hadnt eaten for three weeks ,and got so he couldn't drink either.I dont think they fit PEGS in the UK before treatment as they do in the USA unless they know that you will definately be unable to take fluids orally post surgery and of course you are having chemo as well which Robin didn't.Rob didn't remember a thing about having his PEG fitted,and it has been no problem to manage since .
All feeding products and syringes are delivered monthly to the house and are covered by NHS prescriptions,so if you dont have an exemption certificate get a prepayment certificate straight away.You can apply and pay for this online.I got Rob one and it cost
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#22801 04-13-2007 03:05 AM | Joined: Apr 2007 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2007 Posts: 37 | fantastic thanks everyone for your support this is just a quick reply its 1500 hours friday the 13th i am just going to see my cosultant for the next step in the treatment ,hope the 13th is luckey for me bye for now Allan
age 52 heavy drinker and heavy smoker stage 111 squamous cell at base of tongue trying to give them all up ,8 lot of cetuximab and 35 lots of radiation , gave up smoking at the start of treatment. only drink now in moderation
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