My father was diagnosed May 2008 with squamous cell carcinoma (tumor in his cheek). He underwent radiation therapy. Post treatment evaluation indicated that surgery was required. Suregery was performed January 2009. The total weight loss in this timeframe has been 45 lbs. He is just under 130 lbs. He can barely open his mouth (jaw stiffness), cannot brush his teet, can only manage to drink ensure and very FEW foods (bit of egg, tapioca, poached fish). His tongue is very painful and his taste sensations are extreme (too stong, not there at all or are strange). He is mentally so beaten down. The doctors don't seem to give a clear picture of best case scenarios and worst case scenarios so he can be optimistic or at least deal with the worst case in terms of eating. I am hoping that someone can tell me if they had a similar experience and if so, how long did it go on for? I cannot seem to find much information on line. I know he is worried about the cancer coming back but right now, I think that not being able to eat and having no idea when he will be able to, is just wearing him out. Any advice?? I am just so worried (and a 6 hour flight away).

hi nan
sorry to hear about your father,as for difficulty eating this is something we have all experienced and it does get you down because you either have no tate buds so therefore no desire to eat or a constant disgusting taste that makes everything taste bad.he is drinking ensure which is good as i could not tolerate anything and had an n.g tube for months but now i have a peg tube fitted in my stomach and i have my feed overnight whilst sleeping and this maintains my weight.does he have a dietician?they can usually advise patients on the best nutrician for them.as for how long it goes on for varies i myself finished treatment in april 2007 and it is only in the last few weeks that i have been managing to eat something 3 times a day.i have some savoury taste buds but no sweet taste buds.the main thing is that he is eating something no matter how small as it is easy to lose the swallowing reflex plus it is good that he is drinking ensure.it is frustrating nan for the patient and the carer not being able to eat but he is not doing too badly compared to some in the eating stakes.read through the posts on food in the forum as there are some recipe's there that may help him these are recipes that people on here have put on to help others.good luck to your dad and please keep us informed of his progress.take care love shirl xxx

Hi! Nan,
I had a similar problem with SCC and prior to having my RT/Chemo I asked to have a PEG Tube fitted as I had been told that eating will be a problem, the registrar delayed having the PEG fitted and i was having trouble eating anything. Finally they fitted a PEG and it was then that I was able to maintain my weight and even though it was at times very upsetting with having to eat through a tube whilst everbody else was eating normally.
Yes there will be times when you could scream but with the help of this Forum most of your queries will be replied too, and you and your father will have first hand experience in the treatment of this horrid disease.
"Stay Styrong"
Trev

Hi Nan
i imagine that as he is so far out from treatment he won't get a peg tube now,but there is a food available in america that will enable him to get maximum calories in least amount of fluid.Carnation VHC breakfast food is a liquid which contains over 500 calories in a can.I think the best way to source it is google Carnation VHC and then click on find your nearest supplier.I think you may be able to get this through your medical insurance but you need to check that out.
Is he doing jaw stretching exersises.If not ask your doctor to refer him to a physical therapist,and maybe read up about a Therobyte which will help to stretch his jaw.You should find information of post treatment nutrition on the main home page of the forum.

love liz

Hi Nan,

I have cancer at base of tongue & had radiation and Erbitux, no surgery. I finished rad treatment mid-july, 2008. I am still unable to eat anything and all nourishment is from my feeding tube. I completely understand your father feeling depressed about not eating since I really thought that I would be back to eating by now.

I know this isn't very encouraging, but I just wanted to let you and your father know that there are others like him here on this forum, and wish him the very best. Try to stay optimistic though, it really helps in keeping one going!

Take care, Cricket

I am truly amazed at how quickly everyone responded and how supportive you all are. It is incredibly helpful to know there are others with experience to share and provide insight that the doctors and others can't always do. I am completely new to the blog world so apologies if I am not getting it right. Anyway, the advice on the jaw stetcher and the alternative liquid food is great. Also, thanks to Cricket for your honesty about how long your recovery is. You are right about staying optimistic but this is becoming harder for him. He won't join a support group so I thought I would try the online variety and encourage him to go on himself. Again, thank you all for such quick responses. I will post again once I speak to him again. And my best wishes to you all in your own situations. Love Nan

Hi Nan

You said that your dad can't brush his teeth. I'd like to give you a suggestion that worked for me after I had tongue surgery: on the right (i. e., intact) side of my mouth, I used a regular sized, soft bristled toothbrush. On the left side of my mouth (surgery side) I used a child-sized toothbrush. It seemed to work really well.

My cancer was on my tongue, not on my cheek like your dad's. My doctors installed (for lack of a better word) a naso-gastric tube that I used for several weeks. When it was removed, I had to work my way back up through liquids to solids gradually. I drank a lot of Boost, and ate a lot of baby food for the first few weeks. I also made hot cereals which I thinned and cooled with soy milk.

I hope everything turns out well for your dad.

Julia

Dear Julia- Your suggestion to have my Dad try a child's size toothbrush is a good one. His problem is with not being able to open wide enough to angle one in but that was a regular size one so the kids one might work. As for the hot cereals, it is another one that he can do...cream of wheat works ok with alot of milk. He did have a feeding tube after surgery but it was removed before he came home after they assessed his ability to swallow. Unfortunately, it is his tongue that seems to be very sensitive. Seems like this could still be the effects of radiation and not surgery per se. Cricket and Shirl also expressed how long the return to eating can be. I see he is not alone and is within "the norm" in some way. Frustrating but reassuring to some degree as well. Thanks for your feedback and kind words. Nan

Hello there.I really do feel for your dad.I had tongue cancer and a very bad reaction to my radiotherapy back in Nov 2007.I could not eat,relying only in ensure drinks to keep me going as I did not mant a peg.Everything was too hot,spicy,salty for me.Everything burnt my tongue and I really did think I'd never eat again.Well its now March 2009 and I am slowly beginning to eat again....I know it seems a long time but I can actually eat again...a little bit.They never tell you this when you have radiotherapy as to how hard it is too eat. I can actually eat toast,with crusts cut off,sausage sandwiches,even had a bit of cottage pie on Friday. Its like being a child and learning to eat again.Some things are still out of bounds but I keep trying something new every week to see if I can start eating it.Its very very frustrating,some days are better than others but it is so lovely when you try something and you are able to eat it again that it does make you smile.I know this won't really help but its just to tell your dad that it does EVENTUALLY get better and just try not to get down with it. I had a babys toothbrush for months and used the therabite to increase my mouth opening.Again its frustrating but it does get better.I'm now on an adult toothbrush but still can't eat a banana as I can't open my mouth wide enough.Its wietd how we take things for granted like just being able to eat fruit but cancer does radically change your life but at least we are here!

Thanks for posting Sammy and I am glad to hear that you have conquered toast and sausage sandwiches! Actually, it is good to hear from people who have been through what my Dad is going through and knowing that you have come around to being able to eat regular food again. Even if it has taken so very long and may not be like it was before. I am sorry that all of you who have responded have had to endure this difficult time. I see how hard it is for my Dad and hate to think other people deal with this daily as well. I keep trying to be supportive and positive, recognizing that any progress is a step forward and encouraging him to try new things. Over the weekend my sister bought him some almond flavored dessert tofu. I'll let you know if this worked for him. I have suggested that my mom make soups, blenderize them, and pour them through a coffee filter or paper towel to get rid of the bits which seem to cause him pain. I'll pass on any of his successes in hopes it might help someone else. He is still battling the depression but my brother will go for a visit soon and I hope that the spring weather will brighten his spirits. Again, thanks to all of you for your support. It is really helpful to me. I'll keep you posted on his progress. Thinking about all of you in the meantime. Cheers, Nan

Hello Nan
I take my hat off to you and your family in the efforts you're putting in to helping your Dad. I remember when Trevor was in the same position post treatment. Although he had a PEG for a while, we still had to proceed to getting him onto a normal diet. You will find yourself trying anything and everything to see if your Dad can eat something and then it's frustrating when he may only have a taste and you both realise that food isn't suitable ~ yet. You feel helpless because you can't make it better and at this point, the carer is the one responsible for getting the 'patient' back on track. Depression can come knocking on the door of the carer too so tell your Mum to keep her eye out!
No profound words of wisdom in this post, but I just want you to be aware that this is a very trying/worrying/frustrating/sad time for the carer as he/she is carrying a very big load. Everything is focused on the trials (of which there are many) of the 'patient', that it's easy to overlook the needs of others.
Take care and good luck to you and yours.
Deborah

Hi Nan, \i had mouth and neck Cancer and part tongue removed and difficulty opening my mouth and even now 7 years down the lin I get really bad absyess and sore gums due to my teeth rotting.
I only use mouth wash the best I can and my eating is very erratic and I try to get bthings to eat but not always possible.
My taste buds go from sweet, acidy to salty to no tatse and it drives me mad when i cook something looking forward to it and its just too sweet or salty to eat.
Its a hit and miss.
My gums stilsosore my Maxfax Dentist cannor touch them even with very soft gloves on so often have to leave my dentures out and this makes me more looking an old man and thats depressing.
I cannot eat anything without thaking OUT the dentures no room and then only with a Teaspoon at atime which is dam embarasssing

Paul

Thank you Paul for sharing your experience. My heart goes out to you and I hope that things eventually improve for you. Thanks also to Deborah for sharing the caregiver's side of the story. My mom has been very good at trying different foods and yet it is hard not to get frustrated with the high failure rate. Both of them are tired of it. However, some good news to report...he ventured to try steamed mussels and was able to swallow 16 tiny ones in a cream sauce. They are rather slithery so easy to get down. Also, I found VHC carnation drink is available from Amazon.com. It is not available in Canada where my Dad lives but my brother can take some up next week. I like that it is a lactose free product and 520 per cup. I hope he can drink it. I will keep you posted and look forward to hearing more from you all. Love Nan

Hi Nan
Great to hear your positive news.
I remember when Trevor first ate food after his treatment. The treatment finished about mid-September and his sister turned 60 on 3 December. It was a very busy party and Trevor was lost among everyone which was great because he had the opportunity to try everything that took his fancy (and dispose of anything that didn't work) and lo and behold he was able to get things down the hatch although his taste buds were pretty much out of kilter. Now he has SOME taste but that waxes and wanes so each time he eats something it's somewhat of a surprise as to how it will be.
Maybe your Mum and Dad could go out for a smorgasborg meal. After Trevor's initial success at the party, I was rapt. It was great to have a wide selection of foods, each of which didn't have to be prepared separately for one in meal size portions so there isn't the waste and your parents will get an idea of various foods that might work. It's worth a try. You never know your luck!
Cheers from Down Under
Deborah