Opted Out Of Feeding Tube

My brother has tonsilar squamous cell with left node involvement(1). Started radiation 08/28/07 and has first chemo today. He opted out of getting a feeding tube. Is there anyone else out there who didn't go that route and perhaps could tell me how you managed to keep up with nutrtion and did you use any throat meds to numb pain so you could swallow to eat. The radiaton doctor said they were radiating both sides and that he would lose his salivary glands.  He says after 2 days he already feels throat soreness and glands are swollen in his neck on both sides. I didn't think there was a reaction that quick .

Anyway any info would be greatly appreciated.

Thanks

syoung

 

On 8/31/2007 skeepee wrote:

My brother has tonsilar squamous cell with left node involvement(1). Started radiation 08/28/07 and has first chemo today. He opted out of getting a feeding tube. Is there anyone else out there who didn't go that route and perhaps could tell me how you managed to keep up with nutrtion and did you use any throat meds to numb pain so you could swallow to eat. The radiaton doctor said they were radiating both sides and that he would lose his salivary glands.  He says after 2 days he already feels throat soreness and glands are swollen in his neck on both sides. I didn't think there was a reaction that quick .

Anyway any info would be greatly appreciated.

Thanks

syoung

Hi syoung,

I had cancer of tonsil and the Dr. would not start radiation until I have one inserted.  I still lost 60 lbs.  Better to get one now because there is no way you will be able to keep up nutrition.  I also had stage 4a.  Every case is different.  I still can not eat due to scaring on the throat.  I have the tube inserted 04/05 and I still have it. 

There are some folks who go through treatment without a PEG although I don't know how. I had one for 5 months and, although it seemed scary and unnatural at first, I was extremely glad I had it. I lost 30 lbs and only weighed 155 when I started. I would have lost a lot more without the tube. It's really not that bad and I think the alternative may be worse. Just make sure that if your brother does get one that he keeps swallowing (water, milk, anything...) so that he doesn't lose that function.

Get the PEG as soon as possible! It's no big deal to get, use and it is insurance.  Most folks cannot get by without it and even with it still lose lots of weight.  It is insurance that they can take meds and get nutrition.  PS as radiation goes on and salivary function decreases quickly its better to have the insertion because while you are in good shape -  you cannot drink or eat  for many hours prior to the surgery. And once dry mouth sets in thats a big deal!

 My husband had one put in day 6 of radiation and we are greatful - it saved his life. He just got it removed 8 weeks out of treatment  

Hi syoung,

I had 6-1/2 weeks of radiation to both sides, weekly cisplatin and erbitux, daily ethyol shots (for tonsil cancer with two lymph nodes - I also had a modified radical neck dissection about 3 weeks before radiation).  I was 52 when I was diagnosed, and in very good heath otherwise.

I did not get a PEG and I only lost about 5 lbs.  My RO said I could get one later if needed, but I did OK.

Eating became a big problem quite quickly, so I settled on a simple meal three time a day - it consisted of an egg-beater omelet with cheese and sometimes ham, 2 Boost Plus, and tea with honey.  Just prior to the meal I used the "magic mouthwash", which numbed my throat just a little.  Without this simple meal, it would have been very difficult to get my calories - but I did get them!

After a while, I also started taking a tylenol with codiene mixture which helped with the raw throat.  I also did multiple daily mouth rinses with a salt/baking soda mixture.  Of course I drank a lot of water.

I exercised every day - light weights, floor exercises, and stationary bike.  Nothing too strenuous because I didn't want to burn many calories (since they were so hard to injest).  I also generally took a daily walk with my wife.  I think the exercise helped immensely.

I had other side effects which were treated with various medications.  I took steriods for the last several weeks of treatment (for an erbitux side effect), and they may have helped somewhat with the raw throat.

Everyone is different, however, and it takes a good amount of discipline to get the calories and liquids - there can be no excuses to stop eating.

It was not an easy journey, but for me it was also not horrific.  Finally, I'll give a lot of credit to my wife as my caregiver.  She helped in so many ways I can't even begin to say.

Best wishes,

Chris

I have SCC, unknown primary, stage IV, right lymph node metastisis. I was talked into the PEG by radiology oncologist (and hubby) and it was a good thing. You get use to it, really! And it's so important to get the nutrients in the canned food and to hydrate yourself more than you can drink by mouth. You can also take meds thru the tube. Mine was put in just before starting chemo & rad, and removed 5 mos later. I still lost weight the whole entire time and actually still am-50#'s to date. Eating is possible now, but not much fun and much more difficult due to the dry mouth, constricted throat, the taste bud issue and shrunken stomache. I was able to drink water thruout-so I kept my ability to be able to swallow. I had my dissection 3 1/2 mos after treatments finished, which further damaged my throat-hopefully to eventually improve. But right now I feel GOOD, try hard to eat, and have no detectable malignancy in my head & neck area-so all is good and worth it. Best of luck to you! Gayle   

your brother needs to make sure that when he stops eating food, that he drinks up to 6 to 8 cans of ensure" plus" or generic of the "plus" product per day. (If he cannot drink a minimum of 6 cans of nutrition per day and 10 glasses of water per day, he needs to make funeral arrangements.) If he can get that much down his raw, swollen, infected throat, then he will live......but a feeding tube is like eye glasses for a person who is almost blind It is a medical aid for a person who cannot eat, ONLY LESS PERMANATE OF AN AID AS EYEGLASSES It just makes life bearable, 2 cans of the "plus" is approximate one meal. So if he eats one normal meal a day then he needs to drink 4 cans. If he eats 2 meals a day of normal food then he should drink 2 cans....plus snacks, of another can.

His doctors are getting him fixed up with a feeding tube as we speak. He just finished his 2nd week of rad/1chemo so finally he is listening and not thinking he can do without but thanks for being FRANK!! And i will tell him how many ensure he needs to get down along with the Water.

 

Thanks again

 

On 9/7/2007 skeepee wrote:

His doctors are getting him fixed up with a feeding tube as we speak. He just finished his 2nd week of rad/1chemo so finally he is listening and not thinking he can do without but thanks for being FRANK!! And i will tell him how many ensure he needs to get down along with the Water.

 

Thanks again

 

 

On 9/7/2007 lori5000 wrote:

 

On 9/7/2007 skeepee wrote:

His doctors are getting him fixed up with a feeding tube as we speak. He just finished his 2nd week of rad/1chemo so finally he is listening and not thinking he can do without but thanks for being FRANK!! And i will tell him how many ensure he needs to get down along with the Water.

 

Thanks again

Please read the label on the cans of ensure. There are so many chemicals in that stuff. Please for the best nutrient buy a juice machine and start juicing up veggies and fruits, its 10 better than for him than that ensure. also look in to rice protien. you can make a protien shake that will help build his strength. i found the best rice protien to be by vegan. i know for a fact this stuff works because i was diagnosed with bone cancer and the doctors cant believe i look and feel as good as i do. god bless and take care i hope this information helps