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#48141 05-16-2007 03:57 AM
Joined: Apr 2007
Posts: 37
Allan Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Apr 2007
Posts: 37
Hi i am close to half way through my 6 weeks of rad and chemo i have had a peg fitted which i was crippled with pain for ten days till they loosened it then they found it was infected ,am i the lucky one , anyway i have nearly finished my third week and i am trying to not use the peg till i have to but my mouth and throat are getting worse each day i can still eat porridge and soup but both are difficult has anyone out there any tips to make it easier or any suggestions of food that will go down easy , hopefully Allan frown


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
#48142 05-16-2007 06:13 AM
Joined: Feb 2007
Posts: 77
ccw Offline
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Joined: Feb 2007
Posts: 77
Hi Allan,

I used a codiene-tylenol syrup several times per day, which helped my throat in general (prescribed by my RO).

Just prior to eating, I took a teaspoon of mouthwash (I swished it around my mouth then swallowed it) made from several ingredients that my dentist prescribed for me. The mouthwash anesthetized my mouth and throat for maybe 5 minutes or so which helped me eat (I was only eating 3 meals per day, each meal consisting of egg-beaters, which are cholesterol free eggs, and drinking Boost Plus).

I was also taking steriods at the time (for counteracting Erbitux pimples), which may have also helped (just a pet theory of mine).

That got me through without a PEG.

Best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
#48143 05-16-2007 10:28 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Hi Allan
glad to see your post,i have been wondering how it was going.Using a mouth numbing mouthwash prior to eating is very helful,as for the food,i invested in a blender.I made meals that were free from spices,salt ,onions and pepper,then blended them altogether with gravy.As Robs mouth got worse i thinned the consistency.A great backup was a pan of soup that i made with chicken carcass and vegetables and then sieved and blitzed.Failing that thin milk puddings,yoghurt,mousse and ice cream and as a final resort i bought jars of baby food.

Glad you have got so far without having to use the peg,but dont hold out once eating becomes to painful the PEGS not so bad.

Love Lizin the Uk


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.
#48144 05-17-2007 07:22 AM
Joined: May 2007
Posts: 621
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 621
Hi Allan

I had many of the same problems and thoughts with my PEG. I finally had to give up eating and go exclusively with tube feeding for the last 4 weeks of IMRT treatments and for another 6 weeks after they were over. I was doing 9 cans of Glucerna a day and was able to hold my weight fairly constant throughout. I was told the secret was Protein, Protein, Protein....

I was never hungry, so do not be afraid to go for it. It made a real difference for me.

Good luck !!!

KC


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
#48145 05-17-2007 08:47 AM
Joined: May 2007
Posts: 27
Contributing Member (25+ posts)
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Posts: 27
My husband has completed 14 IMRT's and 1 round of chemo. He is still eating everything except for very dry foods. It takes him longer but, he is not in any increased pain other than mild discomfort from mouth sores yet.
For pain, he takes one Vicodin in the am and one in the pm. He doesn't like the miracle mouthwash so uses the Caphasol and he really likes this!! It is wonderful! He also uses the Biotene moisturizing gel sometimes. We use a humidifier in the bedroom so that the air is very moist and he rests really well at night.

He hasn't used the PEG yet, was really uncomfortable for about 2 weeks after it was put in, too. The nice thing about having it is that it's there for when he will need it. His weight is still good, in fact he gained back the weight he lost from the tonsillectomy. Has gained 4 lbs. since beginning the radiation and chemo. I spend a lot of time preparing meals that are really appetizing (as his taste buds are about gone) and texturized so that he can chew and swallow without it taking forever. I just called him at work and he is having a taco salad. Go figure!

Pam


Caregiver of husband, age 57, non-smoker, DX: 4/07 w/undifferentiaed SCC, TX IMRT X37 @ 200, Chemo Cisplatin, 5FU X2. TREATMENTS COMPLETED ON 6/20/07!!

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