Hello everyone,

My name is Peter and I am from the UK so forgive me if some of the medical terminology I use is a little different to your own.
Diagnosed with cancer of the tongue in July 05 I underwent bi-lateral surgery to the neck and throat and a rebuild of the tongue in late August.
This was promptly followed by five weeks of daily radio-therapy (something I would not wish on anybody!!!)and I have come out the other side with so far my first all clear from the hospital.
I feed mainly through a Peg tube but I am also trying desparately to eat as normally as I can.At the tender age of fifty I find myself reduced to being only able to cope with very limited menu's nearly all of which resemble baby food (ANY SUGGESTIONS PLEASE)
I think its marvelous that you have forums like this and I wish I had found it a lot sooner but if anyone wants to talk, offer or receive advice then please contact me


Good luck to all
kind regards
Peter

Hi Peter,
and welcome to the forum. Soft foods are about it for now. I did a lot of experimenting to determine what I could and couldn't eat - the dogs all got fat. Some here blend regular meals and eat them that way. At this stage it is important to stay hydrated and keep your nutrition up. It is good that you continue to try to take foods orally. Watch out for aspiration though - you can get pnuemonia from that.

I drank a lot of Carnation Instant Breakfast (I hated Boost and Ensure) and Hagan Daz milkshakes then graduated to softfoods like mashed potatoes and gravy, soups, stews, pastas, etc. If you have a nutritionist at your hospital they should be able to give you tips on things to try also.

Here's a link to OCF recommendations http://www.oralcancerfoundation.org/facts/nutrition_during.htm

I am sure you will get lots more tips from others here.

It just takes a whole lot of patience - the healing process is very slow.

Thanks Gary (does this mean I have to get a dog?)
your swift response is much appreciated will check out the link

take care
Peter Haines

Peter, have you tried angel hair pasta with olive oil or light cream sauce? We do lots of "7 Bean soup" which can be mashed down a bit or pureed. Scrambled eggs with melted cheese[or not]Give us an idea of what you can swallow and more suggestins will follow. Amy P.S. our dogs have gained weight also.

Peter --

My husband Barry (who's also a Brit, though we live in USA) was limited to eating soft foods throughout and immediately after treatment. Other than liquid nutritional supplements (various brands), he found he could eat (using plenty of water and taking his time): scrambled eggs, pureed soups (put through blender), cream of wheat cereals and also, several varietes of cereal made for babies to which you add warm milk, soft noodles or pasta in gravy or cream sauce, very soft mashed potatoes, ice cream -- but not ice cold -- he had to microwave to get warmer otherwise he'd gag, mango juice -- diluted at first and then gradually back to full strength (much less acidic than other juices, yoghurt) and also lots of "smoothies" made with nutrient formulas, protein powders and ice cream or yoghurt.

Since you are in the UK, ask about getting Difflam (benzydamine mouth rinse) at local chemist's. It is not available in USA yet, our dental oncologist took part in a clinical trial of this and found it best for reducing severity and duration of radiation mucositis. He bemoaned that it was available "over-the-counter" in 36 countries but not yet in USA. Of course, ask your doctor before using this, as with any non-prescribed medication or supplement!

Back to food -- we noticed that once healing started it proceeded fairly quickly -- and within a few weeks he could deal with soft broiled fish and well-cooked vegetables, and now 4 months' out is eating everything in a normal manner except spicy foods. These are still a no-no. So keep eating and experimenting -- it will get better!

Best luck,
Gail

peter,hang in there my friend and keep experimenting. I am just three weeks removed from having a radical neck dissection, and seven weeks from my last radiation treatment , had 33 as well as 3 rounds of chemo. my only obstacle at this point is my peg tube, I want it removed as soon as possible, I have not used it in about a week. I am trying differnt foods daily to see what works, eggs, soups, pudding, broiled or baked fish, cottage cheese, salads. Right now I am still have some taste and saliva issues and meat does not taste good nor do any legumes(beans)and ketchup is a bit spicy, but I am eating enough to main tain my weight, so the peg tube must go. Just keep trying different things it gets better daily. believe it or not one of the first things I could taste and swallow again was mild salsa without the corn chips, I actually found it refreshing. Hang in there my friend and keep pushing. Best of luck and cheers to the return of a hearty appetite, Lenny

Hello everyone

Thanks for all the advice you have passed my way please keep it coming.

Peter

Hi Peter -

What a tough journey you are on. My husband, Ken, is 5 months out from treatment and has been eating fairly 'normal' food for about a month now. The foods that work best for him have been pasta dishes, any noodles with sauce, salmon & tuna steaks (on the rare side) have gone done very well and some steamed veggies. Ground beef is ok in sauces (i.e. spaghetti) - but he has to steer clear of dry meats (chops, steaks - even chicken breasts). Stick with it - take small bites and take a drink with each bite if you have to. It will get better.
Hang in there!
Carol

Peter-

I'm barely two weeks out of radiation therapy myself and still on the PEG. I'm waiting for my dentist to complete the flouride gel trays for a nightly flouride application to my teeth to prevent cavities before I start swallowing (besides, my throat still hurts).

Somewhere on this forum, I picked up the following book title from Amazon (enter Amazon thru the link on the OCF Forum Home Page):

Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing by Donna L. Weihofen, JoAnne Robbins, and Paula A. Sullivan (Paperback - Jul 19, 2002)

At least one of the authors is a registered dietician and my dietician at the Rad Onc Ctr liked the book --- Can't testify to any of the receipes because I haven't tried any.

Pete

Welcome to The Oral Cancer Foundation Peter.
You won't find a more informative site on oral cancer on the web! There are many members who have traveled the journey your on and survived, you can to!
I also feed myself through the peg. I input 1700 to 2100 calories and protein per day. I inject with the 2 oz. syringe.
I mix 1/2 cup of Carnation Instant Breakfast to two cans of Jevity and mix well. This equals 650 calories. I also mix 400 calories worth of weight Gainer 2200 from GNC in about a cup of warm water. Mix well. I also add 4 oz. of Gatorade which equals about 25 calories. Than flush the peg tube with 2 syringes of water. You don't want to plug up the tube. This is over 1000 calories in one feeding. I have no problems with nausau or throwing up. GNC offers the Weight gainer at 20% off the first week of every month.
I have gained weight fast and feel stronger. I just can't seem to eat that many calories orally.
The peg has been a lifesaver for me. Some go without it and do fine.
You can go to the search engine at the top of the page and gain tons of information on just about anything about oral cancer.
Please keep us posted on how your doing, there will be alot of members pulling for you. It won't be to long and you will be the one helping others. It is a very special site with great people ready to offer advice and support.

My Insurance company pays for all the supplies (Jevity & Syringes)and delivers the stuff to my home.

All My Best, Danny Boy

Hi Danny
Thanks for the message I still use my peg too with the syringe feed like yourself. However I find it a little nauseous and am eager to revert to an oral intake as soon as poss. I know it provides all the goodness and nutrients I need but I just struggle with it. Obviously I will have to stick with it but patience is not one of my virtues! I will definately keep in touch and hope that one day as you suggest it might be me helping someone else this is a great place to meet fellow sufferers and their loved ones I only wish I had found it before my op.

Take care Danny

Peter

Peter - Welcome to the forum. Its good that you are fighting to continue swallowing. Keep it up. Watch your total caloric intake - don't get behind. Make sure you are getting 2500+ calories a day while recovering from tx. Get the closest dietician to help you plan a calorie schedule. Drink more water - or pour it in your tube. Your body needs it even when you aren't thirsty and it really helps recovery.

I fear that you will learn some patience with this disease. Recovery can be very, very slow. Mine took twice as long as I thought it ought. When the swelling has gone down, go get a swallowing study to make sure you aren't aspirating (really important).

Good to have another Brit in the forum. Keep us appraised of your successes and failures. We are with you. Be strong. Tom

Welcome, Peter!

When I was learning how to use my PEG ("Margaret" as my family and I affectionately refer to it), a nurse suggested that if I had nausea or other intestinal distress to try pouring in the liquid and let gravity take over without using the plunger. She said that sometimes the plunger caused more pressure and could instigate the discomfort, especially when pushed too fast (for those of us still working on the patience idea). I found that it takes a little longer to wait for it to go in so I dilute my six cans of Jevity per day with equal amounts of distilled water and it flows in faster and supplies the extra water I need anyway. It still only takes about 5-10 minutes for each feeding, including flushing.

Something to try?

All the best,
Ruth

peter, how are you this evening? I would follow ruth's advice and let gravity do the job instead of using the plunger, I found that I became quite nauseaus when I used the plunger, also remain sitting up for at least 20 minutes after feeding, I found that if I was to lay down right away I would often vomit. Now for a ray of hope my friend, today was my 100th day with my peg tube and thursday of this week I am getting it taken out, listen my friend I am only 7 1/2 weeks from ending radiation (33imrt) and chemo and 4 weeks removed from a radical neck dissection and eating almost normal, not quite as enjoyable and still have some issues with swallowing and taste and the usual saliva problems, however that being said I am trying different things daily, some things work some do not but there is enough to sustain me and keep my weight steady anything to get rid of the dreaded rubber hose affectionatly known as "peg". Hang in there my friend, you are making progress daily.
always lenny

Hi everyone,
special hello's to Tom and Ruth (new messages) I am overwhelmed by all your kind thoughts and encouragement I have my next appointment to check on things at the hospital today will let you know the outcome.
Twice now someone has used the term 'aspirate' it is not used in the UK but is it to take food into the lungs by accident?
Will update my situation asap

Take care everyone
Peter

You have the definition right on. This can happen even without your knowledge. For more than five years I have had chronic lung infections, the most recent one landing me in the hospital with full blown pneumonia. Turns out that without my knowing it, when I drink or eat anything very liquid, my throat does not close off completely and I aspirate some of this into my left lung. There is nothing they can do to stop this, as the physical structures in the back of my mouth are now significantly different from the radiation and surgeries. Dysphagia can be subtle as in my case, or overt as in actually aspirating solids as well with dangerous consequences.

Using gravity to feed through the PEG is definitely the way to go. I didn't discover what a difference that made until I was in the hospital after rad ended--wish I had known during as I was constantly nauseated! The only thing that bothers me about it is how many plastic plungers I have thrown out without even using them! Can they be recycled? I feel like I am HUGELY contributing to nonbiodegradable waste since I've been using my tube......

Hi everyone
Got the o.k from hospital everything so far seems normal but in the words of my surgeon 'I have a size 11 tongue inside a size 10 mouth' which they may have to correct if the swelling does not subside sufficiently. It was a great relief to be given the all clear but very scary sat in the waiting area to be told!!!
Actually found something which was not only tasty satisfying and easy to eat Broccoli cheese and cauliflower bake Yum!! I recommend you try if your at my level of recovery

Regards to you all

Peter

hi peter, iam also from u.k. [middlesbrouh] ive had double mastectomy ,and total laryngectomy in april 2005,you are in the right place here peter it is so informative ,and everyone is one big family ...we have all been along simaler roads and hopfully have helped each other along the way even if it only words of encouragement along the way. this forum has been a crutch for me ...god bless and remain pos;...maz