| | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Andrew, That's what the tube is there for. Just keep trying to swallow as much as you can for as long as you can--but if it's not enough to give you all your nutrition, then use the tube. Remember to give yourself extra hydration through the tube too--you need lots during radiation.
Hang in there!
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | 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 | Everyone is different so don't worry about anything other than trying to get plenty of rest, stay on top of your meds, and ingest at least 2000 calories of "food" and 48ozs of water each and every day. You do these things and it will be over before you know it.
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: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Andrew . . . you are not alone. My mouth was so blistered after 10 treatments that I had to take a few days off of tx. My RO cut back on the rads and we put in a stomach tube as no way I could eat or swallow anything except small amount of water and that hurt. Got better then went through another bad period in week 4 -once again had to take a few days off. RO told me after last treatment that he was really worried I would not make it through to the end but they find a way by making adjustments, looking for the right pain meds, etc. ( magic mouth wash, morphine patch, oxicodine ) or skipping a few days to let you heal. Good luck to you.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I don't know if it was the rads or the Erbitux, but I started hurting some in week 2. It's gonna hurt but gradually improve over time. Like they say, Everything Takes Time no matter what it is. Well at least I say it but I believe in telling it like it is after going thru it. These people told me what to expect and it was appreciated much knowing what I would go thru.
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: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Andrew,
I had burns inside my mouth within the first week, and on my face and neck by treatment 10. I wish I could tell you it wasn't that bad, but I'd be lying. I had a really tough time with radiation. I did not have to go to the tube for feeding ( I had one post surgery, and I was determined not to have another), but it was tough going for several weeks. I would have to literally gargle with liquid morphine before trying to swallow anything for quite a while. I lived on Resource 2.0 for nearly 3 months while the burns healed...the key here is that I LIVED through that miserable period, and you will too. It isn't easy, but you'll get through it
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Jun 2008 Posts: 4 Member | | Member
Joined: Jun 2008 Posts: 4 | My Mom is going thru alot of pain in her mouth now. Just on the skin under her bottom lip. It is like she has a million canker sores. Is there anything that she can put on it that will help with the pain? Right now she is using "Oasis" to help with the dryness and odor.
She is also vomitting more now too. Sometimes it is from the food from her peg tube and sometimes it is mucus.
| | | | | 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 | Amy,
It's best to start your own post. If you don't know how, just ask. That way your question will be the main focus of discussion.
When did she start the radiation? I remember you saying they were/are doing 2 a days?
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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