#43123 03-31-2004 07:40 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Hey everybody!! I start rad & chemo monday 4/5. Reading evreyone's posts about radiation damage makes me nervous, but I'm going to get through this & beat it with the very best of you!! I'm back to eating evrything I can get my hands on. Can actually drink coffee or milk without clearing my throat the last couple of days, yay!! Some things still get hung up & make me cough, but being able to eat again has done so much for my attitude. I've actually put on a few pounds! It's amazing how the body adapts to so much change, ie:2/3rds of tongue gone! I am ready, so bring it on!! I hope I can stay this positive for a while & everyone else too. My heart goes out to all who have been touched by this disease. It certainly has changed me. I hope I can find a path through this that will lead me to a full life!
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#43124 03-31-2004 08:24 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Erik,
Sounds like you are ready to go to war!!! Good for you. As you know it won't be easy, but it can be done. There are a bunch of people here that will try and help you as you progress through your treatments.
Just ask and we'll try to answer.
Take care,
Dinah | | |
#43125 03-31-2004 09:04 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Go For It Full On.. I await new round of biopies and surgery I NEED YOUR ATTITUDE to get through... Good Luck
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#43126 03-31-2004 01:29 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Erik,
My prayers are with you. My husband is three weeks post 8 weeks of chemo/rad treatments. He made it and so can you! If your tongue is getting radiated, I would highly recommend a PEG tube. Dan has not been able to get anything through his mouth for 2 months now. He is regaining strength and feeling better just recently. Take care and have a great support system in place...it helped us tremendously!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43127 03-31-2004 01:52 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Hello Erik
You have such a positive attitude and from my experience I believe that it makes for a positive outcome. Try to laugh when you can, that also helps others around you as well as yourself.
I am wishing you well for your treatment.
from Helen, with love
RHTonsil SCC Stage IV tx completed May 03
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#43128 03-31-2004 03:05 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Hi Debbie! I had peg installed before surgery & is already well used, believe me. Right now we're experimenting with other types of peg food that will agree with my system better. Isosource 1.5 just sits there & won't digest. I've got to have 7-8 cans a day so something has to work better. Might have been the oxycodone, but regular food seems to work just fine. I'll keep trying. Been off the narcotics for a while, so we'll see. Anybody read Lance Armstrong's "It's Not About The Bike"? I'm not much of a cyclist, but a couple of friends insisted I read it & I'm glad I did!!! Very inspirational!! Another inspiration was a dermitologist friend that chewed my butt when i was pissin' in my soup about my problems & he reminded me of all I still had to be grateful for, such as, I can walk, hell I can run, see, think, speak at least well enough I don't have to write on a note pad, full control of my bladder, colon, wonderful family, great life overall!!! Man, I could go on & on & on & on. Glass half full? Glass half empty? Which one is it? This disease simplifies things.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#43129 03-31-2004 03:21 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Keep up the positive attitude Erik. You will do well. There may be some bumps in the road but you can ask about anything on this forum. Someone seems to always have an answer.
Best of luck on your treatent!!!
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#43130 03-31-2004 05:13 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Very good Erik!
In the book "cancer: the 50 essential things to do" the author mentions that if you can get out of bed then you are way better off than many. I say 7/8's full (at least)
Carry on!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#43131 04-01-2004 05:11 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Erik,
Dan was supposed to use 8 cans of BoostPlus in his tube, and that was way too much to take in. I got some info from a friend and asked about any other nutrition and we were changed to Nutren 2.0 which has 500 calories a can, so between 4 to 5 sustains him. Also, the Boost was covered by our insurance, but the Nutren is...go figure. Just wanted to let you know there are many options out there, but we were not told about them until we specifically asked. Keep up the great attitude, and my husband read Lance's book while going thru chemo/rad and thought it was also inspirational. I need to get reading it!
Take care,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43132 04-01-2004 12:50 PM | Joined: Feb 2004 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 45 | Hi Erik...
Glad you are doing well. If you have aby questions about Virginia Mason just email me. MY CT from last week was clean so that's 10 mos. cancer free! Keep your good strong attitude, it really does help.
Khaja
Khaja
SCC Base of Tongue Stage IV. Diagnosed 12/02
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