Hello everyone.......My father finished 35 treatments in May for tonsil cancer and is still unable to eat. He is still in pain and food/drinks have a horrible metallic taste to him. He is forcing down 4 high calorie shakes a day, but is losing weight. He is 71 years old and can't afford to lose anymore. He is determined not to get a feeding tube at this stage of the game.

Is it unusual for him to still be experiencing so much discomfort 3 months post radiation?? We have read about patients being able to eat a few weeks after the treatment, but he is struggling even to get down the shakes and a little broth. He has a doctor's appt. this week, so we will get more info then, but we would like to know if anyone else has had similar experiences. Prayers to everyone and their families...........

It is hard to believe that his doctors allowed a man of his age to go through this without the benefits of a PEG system. He has enough battles to fight without nutrition being one of them, and at that, one so easily to maintain with a PEG. 4 cans of a protein drink a day will not be enough to stop the weight loss. He needs to be in the 1800 to 2000 calorie a day range to MAINTAIN where he is, let alone build himself back. While there may be many factors influencing his recovery. Poor nutrition is definitely one that will hold him, back. Given your description of his time line, I do not find his difficulties unusual. But if he does not get more nutrition he could be compromising other aspects of his immune systems abilities to defend his body, and potentially allow a different type of ailment to take hold of him while he is so weak from the treatments. His doctors need to step in and set this situation straight. Patient

Thanks, Brian for responding. Dad is currently drinking a mix called Scandishake, when mixed with whole milk, contains 600 calories. He has been adding ice cream as well, to boost the calories and taking multi-vitamins. So, this should bring him to about the 2400 cal. a day mark. However, the throat pain makes it so difficult for him to get the shakes down. He has been taking a mix with Malox, lidocaine, and benedryl?? I believe to help the shakes go down, but, it is still so hard for him. Is there anything else that can be added to the shakes to boost their nutrional value and calorie count?? We thought maybe even a Boost or Ensure could be added.

He is an active man, enjoys working in the yard, fishing, etc. He still has the energy to do a few of the things he enjoys. But the pain is really holding him back. We were just curious if others were still feeling the effects after 3 months post radiation and dealing with eating issues. Thanks again for your response!!

Remember that calories, while important, do not equal nutrition. The addition of whey or soy based protein powders, as well as amino acids in powder form would help. Check the labels of the shakes for total vitamin, protein, etc. content, and add from there. Of course natural ingredients such as vegetable juices and blended fruits (not citric) also might round things out. Don't forget just plain water. People who don't like to swallow frequently don't get enough, and this can cause serious side effects.

Three months post radiation treatment is definitely a short period and of course side effects last for a much longer period in general. Like what Brian has said, I doubt if your dad's doctor is doing the right job. Even though I have never had a PEG tube inserted, my oncologist advised strongly on getting me one when I lost 10 lbs. My experience was not as bad as your dad's as I could still take milk and ice-cream with 'endurable' pain. So no more waiting. Address the eating problem asap!

Karen stage 4 tonsil cancer diagnosed in 9/091.

Hi 8Dawn, I had the "tube" for 2 months post radiation, and probably should have kept it for another month or two. It hurt to swallow and everything, including water, tasted horrible.
I also couldn't make the swallowing muscles work right. The pain went away after about 1 month, the taste turned from horrible to no taste (an improvement actually), and the swallowing started working again after 2 months. I am alot younger than your father, so i probably healed a little faster. Also the "tube" kept me going during treatment, so I recovered faster.
You need to work this out with his doctor to keep an eye on his conditon.
I wish doctors would make everyone get a PEG, and if they don't need it, fine. But it would be there just in case.
O-O

Many thanks again to everyone! Dad had a follow up today with his doctor at the rad clinic. He was surprised that dad is not yet eating, but stated that everyone recovers differently. We did find out that alot of the pain he is experiencing is due to his lower denture. It appears to be irritating the gum area back by where his wisdom teeth were and this is probably causing alot of the pain. He was prescribed 2 different meds to help get the area healed and was instructed not to wear the lower set of his dentures.
Also, he is starting a new protein powder to be added to his 4 shakes a day. The doctor feels that when this mouth irritation is healed, he should be able to start eating again. He is getting some saliva back, as well, which is encouraging.
The doctor didn't seem too concerned with his weight loss. He wants him to continue his 4 shakes and also get a ProSure down. And continue his water intake. My dad goes no where without his trusty bottle of water!!! So hopefully soon, the mouth and throat pain will diminish and he can start on some real foods!!

Dawn,

Please have your father check into a PEG tube. I would never have made it without one. After 3 weeks of radiation I went 7 months without eating, my tongue and throat were so swollen that I could swallow only small sips of water. I can now eat solid food but it takes a long time to eat a small amount but it's real food. My tongue is still very sensitive to spicy foods. With a PEG tube and 9 cans of Ensuer Plus a day I was able to put on 15 pounds.

Dawn,
I'm with everyone else on this, go with the PEG tube. My Mom is 71 and didn't want the tube either, but the doctors talked her into it and she had hers placed last week. Three days ago she told me she is grateful that she had it done. The doctors told us that it is the best way to help ensure against drastic weight loss while getting the nurtition necessary to heal. In fact, one oncologist told us he could remember only one patient who went through a series of radiation therapy without getting a tube. He said it's simply not worth doing without it. Best wishes to you and your Dad.

Thanks to everyone who responded lately! Dad is still in rough shape. We thought it was the denture causing the severe pain, but that's not it. He had a head scan a week or so ago and we have yet to hear the results from that. His ear, nose and throat doc feels that a saliva gland in the rear of his mouth is draining, thus causing the pain. His rad doctor says it could be a pinched nerve!! His head and neck specialist said at last month's check up that the radiation continues to work on your body for 4 - 6 months after the treatments end, thus causing the throat pain. Everyone has their own opinion as to what could be the pain source! He has started on pain meds, finally, but they caused severe constipation. He dealt with that for a week and a half, then had diahrea for 3 days and lost about 6 more pounds..........which he CANNOT afford to do. I am hoping and praying that at his next visit to the Head and Neck specialist at The James Center at Ohio State says no more fooling around with the weight gain shakes, it's time for a feeding tube. Will he still be able to drink a shake or 2 a day with the tubes?? I know he will need to continue his fluid intake with the tube. Also, when and if they decide to put in the tube, is it an out patient procedure?? Is it very painful?

Many thanks to all of you for all your great advice and support. It is so hard to watch your loved one's go thru this. It is great to have a sounding board to participate in. Love and prayers to all of you and your families!!!!!!

Hello, Dawn. To answer your questions about the PEG, yes it is an outpatient procedure, not more than a about 90 minutes from check-in to walk out for me, and no, a little soreness for a day or so but no need for pain meds in my case. And yes, he can take anything by mouth he is able to while he has the tube. For a whole lot of information, settle back and do a search of this forum for PEG tube. You will find hours of reading, as this has been discussed a lot (understatement). You appear to be doing a wonderful job as your dad's advocate, Dawn. Stay strong, and let us know how both of you are doing.

hey Dawn,

a fine advocate like you is one of the best helps we cancer folks have... you are really appreciated.

my peg tube was a short proceedure but i needed to spend the night in the hospital. the following day, urine needed to be functioning for me to get out... morphine was used to reduce pain while i was in the hospital...

however i'd like to say that for me the proceedure was relatively painless and the overnight was not that big a deal.

i used the peg for about 18 months after my rad/chemo treatment started...eating again has been a slow steady processes back to regular food. i've been very surprised by the healing time but thankful that the improvement continues.
i am a big advocate of pegs for folks who need them.

best wishes,
cu,
larryb