Hi Everyone:

My dad was just diagnosed with squamous cell cancer on the base of his tongue. He is elderly but in good overall physical health. He does have some loss of kidney function but the drs are still going to try low dose chemotherapy along with radiation. His dr gave him a 70% chance of recovery and said it it is curable. I should mention it did spread to his lymphnodes. Next week he starts his treatment and he did get a feeding tube in case he cannot eat during treatment. What should I expect? What kind of foods has anyone been able to eat during treatment. Please respond.

The first 1-2 weeks are not really impacting eating. After that you loose most of the taste and things taste like metallic wallpaper. Later on he will probably run into problems with eating orally as most of us have and rely on the PEG tube. Before that soft food, pasta scrambled eggs soups milkshakes etc are working well.
Regarding kidneys and chemo. Cisplatin has a number of side effect and kidney toxicity is one of them. You want to be aware of that, an alternative drug is carboplatin with does not have that problem (to the same extent).

M

Welcome to the board and sorry for the reason you're here. As you will no doubt hear over and again, get your dad to eat everything he can now. All the stuff he loves, shovel it in. After a couple of weeks, he probably will not be able to handle solid food at all. Keep him taking liquids by mouth as much as possible, otherwise the swallowing muscles forget how and he'll need to go to therapy for that. He will also have a very dry mouth. Get some Biotene mouthwash, toothepaste and mdry mouth gel. There will be othwers weighing in with more advice and to answer any other questions you have so ask away and there will be someone to answer. Stay by him and support him as much as you can. Good luck.

Hello and welcome to OCF. I personally have not had a feeding tube so I cannot help with that. Learning from others, I know a lot of people use Carnation VHC. I'm sure plenty of people will see this and give you some good I just wanted to welcome you and let you know there are a lot of people who can help here. I'm always here to listen if you need to vent!!

Welcome to the Board and I'm so sorry about your dad. How old is he (you said elderly). I think the treatment is likely more difficult on older people but there are vast differences in how people cope physically and psychologically. He should be assigned a dietitian as part of his medical team (if not right away, request one) and this person will prescribe a liquid feeding product to be used with the tube. Anything he can eat by mouth for as long as possible is important including drinking water and other liquids. My husband used the tube for extra water to keep him hydrated once his mouth and throat started to hurt.

PEG
Yes, get as much Biotene mouthwash, toothpaste, and they have an extra soft toothbruch that I think is great. USE them 2,3 or 4 times a day. I have one in everyth bathroom so it's convenient, and I have no excuses not to brush or gargle. I was able to use all of them through my chemo treatment which also created mouth sores. (The Mouthwash and Toothpaste you can get in the Giant grocery store).

There is also special denture cream available on the web, if he needs it.

As other posters have mention, get him to eat as much as possible now. Put on the weight as it'll help his stamina throughout the process.

Get a nutritionist (which should be part of the team) or at least the hospital will give you a name of one. There are also very good books you can find on Amazon concerning cancer diets.

In addition to Ensure, Boost, Carnation Instant Breakfast, you can also make smoothies with haalthy ingredients.

Some people have creamed there food, such as spinach and broculi, and were able to put it through the feeding tube. Some mixers work and some don't totaly geat the lumps out.

Keeping you father hydrated (Vitamin water is great), and nurished, and for him to have a great attitude will pull you through this difficulty.

Also, there are some exercises he should do with his tongue and neck to keep them mobile. See if the hospital will refer you to a physical therapist. However, if you want, I can send you my info sheet my dentist gave to me. Just let me know.

Good Luck
Sandy S.

Good Luck
Sandy S.

Boston,

How old is elderly?

Was he tested for HPV?

This was written as responding to a poster with the SCC so keep that in mind:

Being near ideal or even under weight you definitely are a candidate for the Peg Tube and perhaps a Port. Discuss these with your docs ASAP. Until then do eat eat eat and eat like you have never before. Make a list of your top 10 all time favorite foods and do nothing but stuff yourself with them until you can't stand them anymore. If the label reads WARNING HIGH FAT, then pounce on it.

The first couple of weeks will probably be a non event but don't think that's all the rad will do as you will most likely suffer like the rest of us weeks 4 thru 3 weeks post Tx.

During the rad consume at least 2000 calories and 48ozs of water each and every day however you can and that's where the Peg and Port come into play as your mouth will become very sore and swallowing will be difficult and painful. Along that line stay on top of the pain meds. If one combo doesn't work let your docs know and try something else. Along with the pain meds can come the big C for constipation so talk to your docs early on to be prepared for it.

You may loose your taste (about 2 weeks in) and you may develop thick mucous ( about 5 weeks in) and eventually your mouth may go dry (usually post Tx).

Mentally this whole cancer thing will take a tole on you and your family. IMO the mental aspect is at least 50% of our battle so don't let things bother you without talking about them. We are the best sounding board you could possibly have.

Everyone can be different but generally these are the things to watch out for at first.

This site will be like your Guide to Surviving OC Treatment except the guide talks back so read all the pages and ask away about anything that concerns you.

Good luck, I'm sure you will do well.
_____

David had me on the Carnation VHC big time until my ins quit paying for it. I never had a tube either so I am blank on that subject. But yes, go for the food while he can. I just can't put the weight back on umless it's frp, going non stop all day.

Hi:

No, he was not tested for HPV. My dad will be 85 in August. But, you would not believe it if you saw him. Most people think he is about 70. Thanks for the information. Everyone seems so nice and I am so glad I found this support group. I am sure we will chat again soon.

Thanks,
Chris

Hi Chris,
I am also lucky to have an 80 year dad that looks younger physically and also has a younger outlook on life.
He accompanied me to all of my 6 or so day surgeries over the last couple of years. I few times nurses referred to him as my husband. (�We will notify your husband when you have come out of the anaesthetic�)
He of course was pleasantly amused where I was pleasantly insulted
Happy Birthday Sandy S...............
I noticed a cake against your name and saw it is for 27th April�Congratulations.
Gabriele

Hi Chris -

I'm really sorry that your dad has to go through this. This is a wonderful forum....everyone here will answer any question you may have, and they helped me tremendously when my husband was ill.

My husband had a PEG tube inserted prior to beginning treatment, and it was a godsend while he was going through his treatments. For a while, he was eating somewhat normally, but would supplement with a liquid nutrition called Jevity, prescribed by his oncologist. It provided him with fluids, fiber, calories, fats, and vitamins & minerals, and comes in different calorie levels. After beginnning radiation, he eventually had a terrible time eating, drinking, or swallowing pills, so the Jevity became more important. When he could no longer swallow medications, most could be crushed and flushed down the tube with water. It was very easy to keep him hydrated also, which is very important when going through chemotherapy or taking large amounts of painkillers.


All the best to you and your dad!

Judy

EZJim, Medicare/Insurance wouldn't pay for VHC for me either (It's considered a 'drinkable', not a PEG food, but they did pay for Nutren 2.0 (Same company, 500 cal/can, put NesQuick in it to make it drinkable and that adds 60 cal/can!).

Was your dad a tobacco user?

Hi:

No. He never smoked and was not a drinker.

You might want to research HPV and inquire about being tested for it.

Hi:

Do you mean me get tested? Why? What is the connection?

Thanks

THanks for the post Pete.I'll check into that.

No Boston I meant you might want to read up on HPV and then after reading you may want to talk to your dad about the test.

I had what your Dad has. What everyone is saying is correct. One of my biggest problems was and still is that I cant use regular toothpaste. The mint hurts my mouth. I use Oral B Stages toothpaste. It is bubble gum flavored and doesnt cause any pain in the mouth. I think it is for 2 year olds. Good luck with your Father.

One of my biggest problems is I have no teeth LOL and it still burns like heck.gums. tongue and everythig involved, Right Christine?

My husband was lucky that he didn't loose his teeth. They said they were in good shape but he really had to take care of them. He is using the biotine toothpaste right now and a toothbrush that feels like a paint brush. It is gettin harder for him to swallow now going to ask about that tomorrow at our appt. what they can do to help him

Pat_451
I don't know what you mean by 'a toothbrush that feels like a paint brush' but he should be using a very soft tooth brush.

Also please update your signature with your husband's dx and treatment plan. It makes it so much easier to answer your questions.

Take care,
Eileen

It is a very soft toothbrush like the brisles on a paint brush

I've noticed alot of people talking about teeth being removed. Please fill me in on this. What is the situation that will cause this to happen?

Radiation, especially the method that they use to use say 5 years ago, can destroy some of the blood flow to our teeth. Also the damage to our saliva glands leaves us with a dry mouth condition that doesn't bathe the oral cavity like normal.

Also the typical Oral Cancer patient of the past usually presented with bad oral hygiene practices and less than perfect teeth so it was common practice to just yank all the teeth because leaving bad, even sometimes good teeth in a mouth after radiation led to dead or dying teeth years later and then trying to remove them with weakened blood vessels made matters worse.

Then along came IMRT, a radiation that lessened the damage to the oral cavity so the old practice turned into one of lets fix the bad teeth and use fluoride trays and try to save all the teeth they could. Even so we still see some people that come here with the recommendation that all the teeth go and we try to get them to get another opinion just to make sure it's a necessity.

. Bad oral hygiene your butt, I saw my dentist no less than 3 times a year . My teeth were perfect before OC hit. Even my dentist or my exwife could believe I lost them to this stuff. I had mine out because beside the rads and chemo I was also getting rad seed implants. That is one of the reasons to lose them. Last decent food in this mouth was before Jan 17 of 2008 and none since. The imlants do a job on your tongue, It burns all of the time and hurts , and even the soft food and any type of juice , including coffee makes it worse. I hope you keep yours

Jim,

Never said you were the TYPICAL OC patient of olde.....FAR FROM IT. lol

I agree David and will say that big word that people hate to use. LOL I am sorry for not reading it right.