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#72029 03-28-2008 02:05 AM
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Hello all,

Yesterday I completed my last treatment of radiation. I am very excited not to have to go to that everyday now. The gave me a list of instruction of things to do post treatment, one was to begin eating and drinking as soon as I can tolerate it. My mouth is still pretty sore, plus been very sick to my stomach the last few days. I am hoping to start to drink some liquids within the next few days. I was just wondering if anyone had some suggestions on what liquids to try first? Also, if I should try to drink with a straw or by spoonful. I am pretty nervous about throwing up what I take down if I just try to drink it, as I have been spitting mucous for the past couple weeks, and haven't really drank anything by mouth.

Also before I attempt drinking by mouth, I was wondering if there are any restrictions on what I put through my PEG tube. Was hoping to get some extra hydration for the next few days, and was planning on attempting (at room temperature). Some juices, possibly Sprite or Gingerale, and was hoping to get some Gatorade in for the extra electrolytes. Any suggestions would be greatly appreciated.

Thanks in advance!

Paul

Last edited by novalty; 03-28-2008 02:08 AM.

Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
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Paul,

I started out eating cream soups for lunch, like cream of asparagus/broccoli/celery. I also tried to drink my carnation vhc drinks. It was a slow process that took me a month to move up to more solid foods loaded with gravey or sauces. I drank water with every bite because of no saliva. Also, pastas with sauces were easy to eat. I stayed away from soda pop because it had no nutritional value. My suggestion is to try one meal a day with something like a cream soup and pudding, and then later add mashed potatoes or pasta with sauce.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
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Hey Paul

Congrats on being finished with the rad tx.

I would suggest water at first, just to see how you're handling things. While all of us have different reactions partially because of the various locations of our zapping, you may or may not have trouble swallowing. Just take it easy at first, then work your way up the viscosity scale.

Now on to the PEG. I put anything and everything down it that would flow. Gatorade was definitely on my list, as well as V8 and many other water down blended recipes.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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First off Congrats on getting through your treatment..

I agree with whats been said start with water work your way up it can take a good month or more to start to see changes and it will get depressing (thats what we are here for) but it really does get better, i couldnt tolerate drinking from a cup or glass i used a straw at first i had a lot of mouth sores, i was told not to put anything other than the prescribed food and drink into my peg but looks like it's different for everyone. wishing you loads of luck and a speedy recovery..

Debz


Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
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Hi Paul! Congratulations on finishing your treatments! now you can heal...The next few weeks will probably be a little rough. The cumulative effects of the radiation are intense- but once you get over the hump. I had the exact same symptoms you are having.I finihed in May 07 It will take some time for the swelling to go down so be patient. Everyone's healing time is a bit different. Carbonation is just now getting better for me and citrus drinks took some time and still burn a little bit but just slightly.

You can put anything liquid down the peg tube- I htink you coudl put gaterade down there. I put a little bit of carbonated water in or sprit efmr time to time to clear the line. Just make sure you flush the line thoroughly with water. You can put anything you want in. I put in warm herbal teas and honey with lemon. That was my fa-- for somereason- even though I wasn't drinkig it it felt comforting. Herbal tea is my fav. Also I think having some of the real things you used to enjoy preps your body for eating and digesting real food again.

Its going to tak esome time to get off the Peg. AS soo as I was done with radiation at the end of May I wanted the thing out but I had to have it for several months afterwards and gradually transitioned back to liquids (ensure smoothies) and then solids.

I got my Peg out 3 months after the end of radiation. One thing I did that was helpfula nd helped me feel less tied to feedings was to take a can of formla and a syrnge and a cup out with me. If I felt fatigued or hungry I would jst go into any bathroooma nd syringe in food. It helepd me be more on the go and enjoy htings.

Also I've heard that a joey pump is great for feeding at night. Remember that your body is blowing through calroies with healing- so load up. It will help yu to heal up faster.

Hang in there Paul!

miss Kate



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Paul:

Congrats on finishing your treatments!

For liquids what worked for me early post treatment was yoo-hoo, water, chocolate milk, and McDonalds sweet tea. Be careful with sodas, it will probably burn your mouth like crazy. Im 6 months out and still cant drink soda. I couldnt handle a straw and drank right from a cup.

As far as early foods, try creamed soups. It will take a while for your mucous to settle down and your mouth to heal to enable you to eat. Also scrambled eggs, puddings, and yogurt work very well. Dont get discouraged if you try something and it tastes bad, wait a couple weeks and try it again.


Christine
SCC 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
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Hi Paul, I had a very sore and blistered mouth after radiation. The only thing I could tolerate for a couple of months was white tea sweetened with sugar or non-acidic fruit juice (such as peach or pear). Actually tea worked better for me then than it does now. As long as I had problems with that thick mucous, the tea cut through it and I could actually taste the sweet fruit juice--when that went away and I had more problems with dry mouth, I found tea dried out my mouth worse. Once a little more of my tatse came back, chicken or beef broth and creamy soups also worked.

Nelie

Last edited by Nelie; 03-29-2008 04:44 AM.

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"
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Paul,

I drank room temp water and VHC for many many months post Tx. As soon as I was downing 3000+ calories a day I started to feel like eating other foods. I didn't have a Peg but I tried anything and soon found things that "tasted" better than others and were easier to eat. Explore for yourself.


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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Thanks for all the suggestions. Today, my pleghm seems to be a little less than yesterday. My mouth still feels warm, so trying to keep up with the Prevention solution that they RO gave me, as well as the miracle mouthwash. So far I have tried to drink a few things by mouth. Yesterday and today I was able to get down about half a glass of cocoa. Also have found flat room temperature Gingerale is acceptible, but have only had about a dixie cup at a time. Orange Gatorade must have too much citric acid in it as that burned on the tongue, so I stick to just putting that through my peg tube to get the electrolytes. The Gingerale also does a good job of cleaning out the peg tube. Hopefully I'll continue to see more improvement in my mouth as the week progresses. Looking forward to trying some of the other suggestions.

Paul


Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
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Paul,

IMO you are doing great at this juncture so just keep plugging away and just because something burns your mouth or doesn't taste good today don't write that off forever. It took all of 16 months but everything is just about back to pre Tx normal.


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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