Hi all!

My husband's neck dissection last week went well, and the pathology report was great - he had had (prior to chemo and radiation) a 6cm tumor in one node and at least one other cancerous node, but after chemo and radiation - no positive nodes! They found a tiny spot (4mm) that still had viable cancer in the residual tissue which they removed but overall were THRILLED with his response to the treatment.
That said - this is his second neck dissection, and this one came with a problem we did not have before. Swallowing. After all he has gone through, he finally relented and had a tube put in yesterday. They did do some damage to the spinal accessory nerve, so his tongue goes to one side, and this is what seems to be the issue. Anyone have any experience how long this lasts? Will he be allowed to eat while on the peg tube?

Hi Angie, Sorry that you have to deal with this again. I too have nerve damage (the result of surgery) which renders 1/2 of my tongue non-functional. That part will likely not ever get better.

He over time and perhaps with some swallowing therapy be able to swallow just fine. I would urge you to seek swallowing therapy right away.

Yes he can eat by mouth while using a PEG tube

Angie

As a new PEG booster, not only can your husband eat when he can finally swallow while he has the PEG tube, he can also:
DRINK WINE THRU THE PEG. Doublecheck with your doctors of course, but mine are bemused. they all agree no alcohol this time around in my mouth unlike last time, because of the surgery but directly into the stomach: no problem. That should help a little - I feel almost normal being able to do a "happy hour" again. (although I do limit myself to one syringe a day)
c�harm

Since we're on the topic of the PEG, I have a question.
I've not started radiation as yet, but my chemo mouth makes impossible to eat solid food. It only lasts a few days, but it makes me appreciate what will happen when I go into radiation. Presently only chocolate takes good, and since I've gone through this 3 times, Carnation Instanst and Ensure are getting quite boring. I'm hungry but (1) I don't feel satisfied on a liquid diet and (2) everything doesn't take quite the same, (3) I never feel full.

I'm look for more foods/and food tricks people have used to eat orally during radiation. I don't want to use the PEG for everything. How do you get your nutrition. Potatoes are most carbo. Pumpkin pie and sweet potatoes have a lot of sugar. How does everyone get their protein other than a protein mix?
Any food ideas??????

Thank you
Sandy

Angie,
I had a my bi-lateral neck dissection on Mar 2. I have not been able to swallow right since. I also am having problems chewing, from the swelling (lymphedema). I have spoken to my RO he has ordered speech/swallowing and lymphedema therapy. I hope to start next week. I'm just waiting for a phone call. I go to a H&N support group, the leader is a speech therapist, I am going to copy our email conversation from this weekend. I assume you/he have the same question I did.
Hope it helps

Shannon,
I was just wondering. I know everyone is different, but can you give me the average time it takes to get someone to swallow the right way again. Are we talking weeks or months or years?

Thanks
Amy

It does vary.
Most individuals who end up being able to eat by mouth still say it's not completely "normal".
The earlier you get into treatment, the better and faster your recovery.
I would think maybe 6 months for you.
You can expect many improvements, but then set-backs often occur.
The first 3-6 months post-radiation is the toughest.
The key is staying positive, proactive, and consistent in your therapy and your therapist's recommendations.
I think you're going to do well!!

Bummer, I wanna eat some real food.
Oh well, I will do whatever it takes.

There will be limitations and you'll be able to swallow some textures/consistencies easier than others.
Most complain about the dry mouth.
Youll make quick progress and should be able to swallow "more normal" foods over the next few weeks.
If you heal nicely and don't suffer from excess secretions, mucositis, sores, or infection then the progress will be quicker.
It's usually less about the swallowing function, per se, and more about the side affects of the radiation and how they hinder swallowing.
Just keep that positive attitude of yours!

Sandy, go buy a blender if you don't already have one, and try anything that is tempting. Most if not all meats are out for sure. I found that if it sounds workable, try it. It's about a 70 - 30 proposition but I sure use mine.

Sandy---I ate salads with chicken cut up really small with TONS of dressing. Lots of scrambled eggs. Yogurt. Tuna salad(no bread) with extra mayo. I did not use my PEG, but rather drank the nasty Nutrin(yuk). I always ate some real food--no matter how little---at each meal time.

Nutren is a lot better with some Nestle's Nesquik mixed with it in a glass -- Boosts the calories by 60.

Some easy foods to eat:

soft scrambled eggs with cheese
poached eggs
yogurt
pudding
cheesecake
milkshakes (I used to drink choc/peanutbutter milkshakes daily)
baked beans mashed up like mashed potatoes
mashed potatoes
mashed sweetpotatoes
chicken and stars soup
wonton soup
french onion soup
pancakes w/ real maple syrup or smucker's blueberry syrup
french toast
canned carrots
peas or green beans mashed
glazed carrots
cottage cheese
buttered soft, fresh white bread with jelly
soft serve ice cream
applesauce

To help balance your diet, add to milkshakes, add a scoop of dry carnation instant breakfast

This has been my diet for a long time, seems like forever.

Looks like you covered all of the bases Christine. I think wse should combine our talents and write a cook book. LOL I laugh but am serious

I been eating like this for well over a year and if they ever let me get chompers, I want some good old fashion beef, pork and chicken . Strange how you eat what you have to and ignore the foods you really like.

Great News Angie! Glad to hear the surgery went so well. The swallowing hopefully will get easier with time and rehabilitation. THere are therapists that will be able to identify what the issues are and help him work through them.

Wishing you two all the best!

KATE

Sandy -
A few things that worked for my husband during RT and as things are starting to taste right again:

cream of wheat
oatmeal
cream of mushroom soup - sometimes with some minute rice cooked and stirred in
bread pudding with syrup
all of the above made with whole milk for the calories
also, macaroni soup went over well before the taste buds went

I really have a concern among many other numerous things that go on with this dreaded disease. My husband has had a peg since April 08 and here we are a year later March 09 and he still hasn't taken anything by mouth. We did start therapy for swallowing last year, but then the recurrence ,and our life just came to an abrupt stop---again. The cyberknife treatment did wonders on the tumor in the mouth -- it's gone and the one on his chin is shrinking slowly. I try to give him ice chips just to get his mouth moving, but I think he is just plain afraid and he says that he is not ready and that its even hard for him to swallow a drop of water. How pushy should I be ? God only knows how he suffers and I hate to appear like I don't understand. Any suggestions or help would be greatly appreciated. Thanks. Claudia

Claudia

Can he go back to the therapist again? I have been in a similar position where I was starting to get back on track and then had the operation for ORN and was back to square one, again.

If he is supervised by a therapist, he might have more confidence. I was fortunate after each surgery that my swallowing went smoothly and they encouraged me to swallow while I was still in hospital even after my jaw was reconstructed, I might add half the water ended up down the front of me to begin with.

It might sound crazy but I'm glad no one besides nurses and therapists have seen me dribble water or mushed up food out of my mouth when I first started to swallow again, its humiliating - he might feel the same.

Even if he can try a little water through a straw that would be a breakthrough and probably give him the confidence to have a little more and so on. I think under supervision from the therapist would be the way to go.

It really is the PITS... but it sounds like you are doing an incredible job.

Karen

Claudia - I left you an important PM, would you please read it and give me a call? thanks - Brian

I wish at times I had let that anneurysm be. I just was getting back tyo try some different foods and bam, lose from 184 to 160 and regain the pain and it cuts into my food supply. Sure hoping I regain something soon.

Thanks for the great list Christine. It'll come in handy when I start radiation. I haven't been able to eat scrambled eggs yet. Half of my tongue is paralyzed and all I did was end up with eggs packed between my lips and teeth. That was fun. But I did get down some meatloaf with gravy. I think the gravy was the key. Meat! Yea

Hi everyone, Not to sure how this works so please bear with me. My question is has anyone had difficulty with tube feedings where you had a real adversion to eating this way. My husband had cancer of the jawbone in 1993 Feeding tube ever since around 7 yrs ago he experienced difficulty with diarha and blotting. Unable to swallow at all. was getting aspiration phnuemonia no he is only 91lbs. Is there any help out there its like an eating disorder but not that he thinks he's fat just does not want to eat that way now its become a real problem any longtime survivors were in chicago, Il any input appreciated

Hi Brian,
I hope that maybe you might have some informations that could help me. Do you know of any sources that could help with an adversion to eating with the feeding tube. My husband has had difficulty with this for about 10 yrs. He is cancer free for 15. At first this was a small problem losing a little weight here and there now it is quite serious. No one seems to see what is happening they just keep telling him he needs to eat more. I'm not sure if this is phycological it may have been when it started but now it is physical and not sure where to turn. He has been hospitalized for nutrition problems but they never get to the bottom of it. Now he's 90lbs and I'm scared to death. He was only 43 when diagnosed so it has been a long struggle.Any help would be appreciated. Thanks Patty

Patty:
Hello and welcome to OCF. I know you are new so try to take a few minutes and read some important info under the heading "New Posters". It will make it easier to learn how to navigate this site. Please start a new post so others can respond directly to you.

Ive had a PEG tube while going thru treatments. I had so many problems with being able to get proper nutrition. A few times I was admitted to the hospital for malnutrition and dehydration. Along the way I learned some PEG tube tricks. Since your husband has lost so much weight, he should be taking extra cans of formula to try to gain some weight so he feels better.

First trick is getting the right formula. I went thru several before I got one that I could tolerate. If you dont already have a feeding pump machine, ask the doc and get one. I was not able to use the syringe method or gravity feed way either. I could only use the pump. If he is already using it, turn it way down to 20. Another trick is to water down the solution. Use an extra 3/4 can of water per can of liquid feeding formula.

Keep the speed very low and make sure he is propped up with 2 pillows and run the pump overnight. If possible stick a couple think hardcover books under the top of the bed frame to help give more of an incline. That is very very important to prevent aspiration.

After about a week of the slow pump speed and watered down formula, then increase the speed to 40 and cut the water to 1/2 a can extra. Give that several days and increase the speed again, dont cut the water down too much or he will get sick again.

Hope this works as well for your husband as it did for me.

What I do, based on tips from Christine, is set my food pump up so it's pumping food in while I read in bed and then sleep. I can stuf four cans of Nutren 2.0, 2,000 calories, into the 'Roo bag, set it for a suitable feed rate and then there's no fuss.

I don't have to do anything beyond loading it all up and the cord is long enough to drag the pump to the bathroom should the urge hit me. Actually, it's kind of pleasant to have the pump chugging along in the background.

The big thing is that I don't feel 'tied down' like I do if feeding during the day.

Sandy, I am new to this site but I am not new to the problems we all are sharing with this SCC. I have not eaten solid food in over a year. Everything I have taken in is through my tube, and as of last month I have a new, improved low profile gastrostomy feeding tube. thanks in part to the nurse who inadventently pulled my other tube out while changing my surgical gown.'

My wife has been on the front line, right there with me and is making sure I get the right stuff. If you are not aware of it, Ensure is 30% sugar. Cancer feeds on sugar. Why would they recommend we continue to ingest sugar when we are trying to get rid of the cancer? Here is question you can ask your Dr. Is a patient cured, a customer lost? They do NOT like to be reminded of that.

My wife feeds me all natural, uncooked vegetables and fruits by blending it in a Vita mix. Other blenders lack the strength to do the job right. It is the only blender we have found that is strong enough to liquify what I need. Here is a sample, one days mix. Celery, apple, zucchini, beets, carrots, spinach, protein (Shaklee), extra virgin oil, and flax seed oil. This is then blended with soy milk. After losing 66 lbs at the get go, I am staying steady between 157- 161 I have plenty of energy and sleep well. I am 69 and I still work every day.

I had a spontaneous remission of a return of the cancer in my tongue. From one week, biopsy-positive, CT scan-positive to the next week. Everything gone. The doctor removed a clean portion of my tongue because he had no way of knowing it was gone until the lab report came in two weeks later.

I agree, a cook book is in order but if I wrote it, there would be nothing but raw materials involved. Nothing cooked. Asparagus, colliflour, beets, etc. All can be liquified in my wife's blender. blessings gnoled.blogspot.com

My experience is that you could likely have put the first PEG right back in -- I took mine out a couple of times to clean it when it was really clogged and put it back in -- Hard part was getting the abdominal and stomach wall holes lined up!

Cancer feeds on sugar????? is this a scientific fact?
http://www.caring4cancer.com/go/can...gar-and-cancer-is-there-a-connection.htm http://www.caring4cancer.com/go/can...gar-and-cancer-is-there-a-connection.htm

Nutrition is not just about weight.It is also about getting all the things you need for tissue regeneration,healing,energy and digestive motility in an easy and compact manner.There is little point in maintaining weight if you get vitamin or mineral deficiency,and unless the chemical balance of your blood is correct in terms of salts,heamoglobin,white cell count,potassium ect you are going to be very sick.Ensure ,fortisip,carnation breakfast food etc all contain all the components the body requires and have been formulated to replace a balanced diet when you cannot eat.
Vegeatables are not sugar free (beets!!!) Its the age old story really .if you think that works for you ...great but for the ones not as fortunate as you they are life savers.Implying they are forced on patients for commercial gain is really not helpful to people here.No matter what you need to survive this disease someone is making money from it, thats life.
If attitude was all it took to survive then these boards would not have seen the heartbreak and loss it has since i have been a member it helps for sure but only as part of the overall plan

Cancer does feed on sugar -- That's the fundamental principle of a PET scan -- Inject radioactive sugar, wait 45 minutes or so, and then do the scan, looking for the places where the sugar has gathered.

http://www.pcca.net/PET_scan.htm

I take it you didnt read the link then?

[quote]The concept that sugar feeds cancer is not useful. Sugar feeds every cell in our bodies. Our bodies need glucose, or simple sugar, for energy. Even if you cut every bit of sugar out of your diet, your body will make sugar from other sources, such as protein and fat.
So cancer cells need sugar to grow, just like healthy cells. It helps to remember that there is nothing particular about sugar that �feeds� cancer cells any more than sugar feeds all cells in our body.
[/quote]
My point in answering the post in the first place was the implication that regular recommended feeding products are prescribed for their commercial gain rather than their beneficial properties.I truly feel such remarks are not helpful to the newly diagnosed and the desperate people who come here for help and advice.There are a lot of people who fight cancer by following their own chosen path,and of course this is their choice and their right,and i imagine if i had the disease myself in the face of the failure of conventional treatment i might be tempted to try anything ,but my common sense and my training will always lead me to listen to the science and weigh up the proven facts,and then make a properly informed decision.If brian were to jump in here and shoot me down in flames with a definitive statement that prescribed feeding products are harmful then i will be the first to apologise

A PET scan is not specific for cancer. It finds cells with high metabolism (in the crudest of terms sugar burn) but not cancer. There are lots of things that cause this that have nothing to do with cancer. Infection, inflammation, cell repair from trauma just to name a few that are not caner. Every cell needs blood sugars to exist. All of our cells are burning it all the time. If you do not eat it your body will covert other things to sugars as it is programmed to do everyday. You cannot stop eating sugar and change anything. Your body will just make its own. Please do a search for sugars in this board - this has be discussed and dissected ad nausem, several times. People who believe this do not have a basic understanding of cell biology nor blood sugars.

Cells that are in a state of repair will throw the SUV of a PET scan high and light you up like a xmas tree. Is this cancer? Is it a bad thing? No. Do our surgeries, radiation treatments etc. cause cellular damage that in itself lights up a PET? Yes, if the scan is soon enough after the treatments to have the body's repair process still in effect. It is finding what a PET scan does, high metabolism. Repair. Inflammation. Does cancer also produce elevated SUV's? Yup. Can a PET scan tell the difference between the two? No. But at the end of the day, you are not going to impact any cancer via sugar consumption. That would be assuming that the sugar that you eat stays as sugar. It would also assume that anything else that you eat (carbs, protein, fats, etc.) could/would not be converted by your normal body functions to sugar. Both are wrong assumptions.

gnoled - I find this quote of your particularly distasteful and makes an assumption about doctors that is just not true. "Why would they recommend we continue to ingest sugar when we are trying to get rid of the cancer? Here is question you can ask your Dr. Is a patient cured, a customer lost? They do NOT like to be reminded of that." Your take is that the majority of doctors want to keep us sick for financial gain. Keep this paranoid nonsense off the boards. It helps no one, and is not true of the majority of doctors who have saved many of our lives here on the board, who work for straight salary at CCC's all around the US, are not paid per patient but by the year, regardless if they see one patient, or the usual number which is more than they can handle. It would make an assumption that as a group of tens of thousands of individual practitioners, they conspire as a group to keep us sick for the shear purpose of milking every last cent out of us. Conspiracy theories can be posted on some other board. Not here.

I have a couple of recipes to add to the cook book. LOL

This is the 1st time I have read these posts, Good job Brian. You did that just like a true leader should. Congrats.