Hello all, I have seen that there has been a lot of discussion regarding feeding and nutrition on these boards, but I just wanted to ask a few more questions.
We are really lost over here. My father was diagnosed with Stage III hypopharyngeal cancer in June. He underwent 10 weeks of chemo(once a week) and radiation (once a day) treatment. His last treatment was 5 weeks ago. In the past 5 weeks, he has lost about 20lb (a LOT for my father, he is about 125lbs now) and has a tremendous amount of nausea. He has a PEG tube since the beginning of treatment. However, we dont have a nutritionist (insurance wont cover), so we are really on our own in trying to figure out what to do for him. For the last 3 weeks, he has only been able to get, at the most, 3 cans of ensure in him a day. Mostly, he can only keep down 1/2 to 1 can a day. He violently vomits once a day, and it has been really painful for him. We have tried anti-nausea meds Compazine and Phenergan and they dont seem to help. He is developing a huge adversion to Ensure, so now we are trying to give him different foods, like soup and other protein drinks, but he still gets sick. Plus, they do not have the calorie punch that Ensure and the others have. Any suggestions on how to help him would be wonderful. He is so down and depressed, it is taking everything we have to convince him to even try to eat, I think he is so sick of being nauseated. He is just like a walking skeleton now and we are just so worried. Plus, he has to undergo his biopsy in four days and he is so depressed and sick right now that he is saying that if they tell him that he still needs to undergo more treatment, he wont do it b/c he cant go through this again. I need help to try and make him start to see a light at the end of the tunnel.
Thanks so much for listening.

Cherie

I am not sure why your doctors have not been able to control the nausea, and I think this is something that you should pursue with others besides them, perhaps a gastroenterologist. But from my own experience with a PEG, I found that the rate of drip determined whether or not it would make me nauseous. After cutting my 2 cans of Ensure with a third of plain water I would set my drip so that the time for the bag to empty was about 90 minutes. It was imperative that I was sitting upright while using the system as well. If I did not do both of these things

Cherie,

If your father is not getting enough fluids, he is probably dehydrated which can cause many problems. Test his skin by pinching it - if it doesn't become level with the rest of the skin, he is dehydrated. This is easily corrected by having IV fluids daily.

People underestimate the problems of dehydration -the major ones I saw in my mother were muscle weakness and "fuzzy" thinking. It's an imbalance in the electrolytes of the blood - things like potassium, calcium, sodium and magnesium. My mother spent 5 days in the hospital with the same symptoms as your dad.

Please make sure your father's medical oncologist is aware of his condition - and make him investigate. It took a few phone calls to my mother's doctor and two trips to the ER before it was resolved.

Cynthia

Thank you both for your replies. We feed him currently using and open 60cc syringe attached to the PEG tube, no bag. So, he kinda gets a lot of fluids at once. After reading some of the comments yesterday, we starting feeding him 2 oz an hour and he did not get sick at all yesterday. So maybe that will help him. I will talk to his GI tomorrow about getting him a bag to attached to the PEG, so maybe we can control the rate of feeding a little better. I am worried about dehydration, but we are making him drink adequate amounts of water, so hopefully he is ok. I am worried about his electrolyte level though.
Thanks again for your help and for helping us get through this four day weekend.
Cherie

You will never get enough food in him with a syringe. I can't imagine what your doctors were thinking. He needs about 9 cans of Ensure daily to just maintain, and you'll never do that with a syringe. The bag drip is adjustable so that it can go as slow or fast as you want, plus give you the volume of food that he needs. Please check into this as soon as possible, it sounds like no one on your doctors end of things orginally got you the right equiment or taught you how to use it. They dropped the ball on you here.

Brian,
Yah, the drs are pretty horrible here, we have been fighting with them since day one, but they are the only ones that are close by that our insurance covered. They implanted the PEG tube about 5 days before he started treatment, the GI tried to get him a nutritionist, our insurance denied it, so they sent us home and told us to feed him 6 cans a day of Ensure plus when he couldnt eat. We feed him through the 60cc syringe, slowing filling it up and giving him 2 cans at one sitting three times a day (this was before he started to become nauseated). It makes sense that he would get sick since we are filling his stomach up so quickly with fluid, but that is what we were told to do (and what the nurses did to him when he was in the hospital). This whole experience has been a nightmare, with no one communicating with us about anything and none of the drs communicating with each other. The radiation doctor never talks the the chemo doctor about treatment, the status of his health or blood count, anything. We learned that after about two weeks and became the people that had to relay all the information. It is totally horrible. I would love to take him somewhere else but our hands are tied. I just hope this is all over with soon, after three severe burnings, four severe infections and two bouts of dehydration, I dont think he can go through this again.
Thanks again for the help, you dont know how much we need any information we can get.
Cherie

sorry to hear about all of the yucky stuff your father has been through. i have a peg tube and pour my boost through a 60 cc syringe. this is referred to as a bollus feeding, and not many patients can handle it. you need to tell the doctors that your father is having difficulties with it. after my surgery, they weren't sure if i could handle the bollus feeding method, but i was lucky.

to help with your father's electrolyte levels pick up some pedialyte. i used it when i was really sick from chemo and it helped me to stay out of the hospital. my doctor's were pretty impressed. you can pour some down the peg tube and it helps. i used to mix mine with some gatorade.

hope this helps. i'll keep your family in my prayers.

Cherie...... Like Nettypoho I also did the bolus feeding with a syringe. In fact, I was quite surprised to hear that there even was another method or PEG tube. I was able to "eat" two cans of Jevity three times a day and then I'd add another can three times a day at different intervals--I viewed the additional three cans as snack food--LOL My goal each day was nine cans of Jevity. I don't recall ever getting sick from a bolus feeding and I used to push that food in quite quickly because I didn't like taking the time to eat--an entire feeding would take mabye 10 minutes TOPS. What I do remember is not being able to stay hydrated and ending up in the ER getting additional fluids. Finally, a nurse sat me down and explained exactly how much liquid I needed to be taking in on a daily basis. Once I had that figured out I began to feel better and never ended up back in the ER for extra liquid. I sure wish I would have thought of the Pedialyte and Gatorade idea though.

Hopefully as time passes the feedings become a bit easier for your Dad---make sure he takes in a lot of liquid during the day also. Sincerely, Donna

I really recommend getting some feeding bags. The home delivery service dropped so many off at my house that now, whenever I order my liquid food, I specify that they do not bring any more bags. My feedings usually take almost one hour...some of the bags can empty as quickly as one half hour, but I find that if the liquid goes in too quickly, I feel bad. One day I was at my girlfriend's and remembered to bring everything but the drip bag and did inject two cans with the syringe. I actually did not feel badly that time and my girlfriend thought that it was a great new discovery. Howevery, I still prefer the bags. Using the syringe was a little sloppy and just seemed to quick...but it is good alternative if I only have 10 minutes.
Best of luck with the feedings.
I have been finished with radiation treatments for 3 months now and really cannot wait to get rid of the PEG. I have been able to only get down a few bites of soup or strained baby fruit thus far, however. My goal is the first of the year.

Danny G.