I am a little surprised that she did this without a PEG tube (although I have to admit I did it without a PEG tube). I couldn't stand either Boost or Ensure (they would make me gag) and used Carnation Instant Breakfast instead. I was sick quite a bit in the post Tx phase. I tried decongestants and steroids to cut the mucositis with varying degrees of success. A mild salt water rinse may help but it could burn if she has blisters in the mouth. My mucositis went away at about 4 or so weeks. In early post Tx, progress is measured in 3 week increments.

Dear Danielle,

My husband did very well physically during his cycles of chemo and rad, but blistered completely through his throat the night after the last treatment. It was pretty bad. He couldn't do much more than rinse his mouth with salt-water a couple times a day for about a week.

He lost 50 pounds total (even after having a PEG tube inserted, that he refused to use), but the thing that kept me from losing him altogether was a recipe that I read in a diet book during one of the amnifostine treatments.

I know many here have heard this recipe before, and I hope it deserves repeating. Our radiologist still includes copies of this in all her new patient files.

If your mother enjoys milkshakes, she will LOVE this one.

2 cups ice cream
1 cup whole milk
1/2 cup half-and-half
1 package instant breakfast
1 tablespoon malted milk
2 tablespoons Ovaltine

Blend well.

This shake provides 1300 calories per serving.

I hope this helps.

God Bless,
Mandi

Gary,

I too am surprised after reading everything here that she did not get a PEG tube. I often question her ENT because he seems to do things so differently than than the normal. He is a very caring doctor who makes his patients feel like they are his friends. With her first surgery (2/3 of her tongue and part of the soft palate)back in April 03 she had a traik and that was horrible and a feeding tube in her nose when she was in the hospital. My mom is not a huge woman who can afford to loose a ton of weight. She started at 5'8 175 lbs back in April and after the first sugery she lost about 20 pounds. When she could eat again she opted to gain about 15 of 20 pounds that she lost again because she said if she ever has to go through the surgery again she would not have a feeding tube. She hated that thing more than the traik. So when she had her surgery in December she did not get the feeding tube. When she could eat again before radiation she ate everything fattening that she could. She probably weighed about 165-170 when she started radiation. She is now at about 139 lbs which is still not too bad and she is able to eat scrambled eggs and cottage cheese and ice cream etc already so thats a relief. I keep telling her if she doesn't eat they will make her have a PEG tube. She hates the Boost Plus so much it makes her gag too.

Thank you Mandy for that receipe. I'm going to the grovery store tonight to pick up all the ingredients. My mom is climbing the walls with borebdom at home so she is coming to spend the week with me starting tommorrow. I am sooooo excited. We haven't spent much quality time together so this will be so great for me and her and my sister (who will be here to help with the baby).

Her voice is still pretty much gone but she is starting to feel a little better and the mucus is beginning to subside. What a relief that things are on there way to her "New Normal"
and life can get back on track. Oddly enough I am not obsessing as much as I was when she was getting the radiation. I still think about it about 20 or so times a day but it is not the only thing on my mind anymore. Posting on this board has helped me a lot because my husband is the type of person who just constantly tells me my mom will be fine and he cannot understand why I am so concerned for her. He isn't very deep when it comes to stuff like this.

You all are wonderful. I especially appreciate all the help you have been Minnie. You are an incredibly sweet caring woman who has so much to offer on this website.

Danielle

I am no doctor but I can't understand why your Mother didn't have a PEG tube through her stomach?
It's almost painless and much easier than one going down her nose!!! I used mine for over 7 months with no problems. She has to input enough calories, proteins, and liquid during this healing time. It's one hell of a impact on your body to go through oral cancer treatment.

This morning I got up at 11:30am !!!!!! This from a guy who has been up at the crack of dawn for many years!!! After being active for several days it catches up to you.

Please wish your Mom the best from me and I'm sure Mandi's recipe will be terrific. Please keep us posted.

Dan

Hello all,

Danielle, in spite of all the comments suggesting that she should have had a PEG tube, I'll be contrary.

PEG tubes are NOT required for all!

They can produce negative side effects themselves. Lastly, there is a significant benefit to using the swallowing equipment we are born with. Reliance on a tube for feeding can be a little too easy.

Don't loose sleep wondering if her doctor missed this one. If he is watching her closely, the amount of weight loss she experienced is likely within a safe range.

The good news is she should notice improvement (in little increments) in the next week or two.

I have to agree with Mark also. I am 5'6" and lost over 60 lbs. I am now pretty stable at a nice svelte 139 lbs - a healthy weight for my height. I attribute eating normal foods a lot faster with forgoing the PEG tube. My medical team was split. Half told me I was going "against medical advice" by not having one and the other half thought I could get by without one. They did freak a little when I got past the 20 lb. limit. I fooled the radiation oncologist - I think that she thought I was developing cachexia (wasting).

I had trouble talking for a while in the post Tx but I am singing in a band again so it will eventually get better.

Dan, this time I must stand on the side of Mark and Gary about the feeding tube issue. I lost 15 pounds without a tube but I managed to gain back all of if within 6 months. We should not blame the doctors for not inserting the tube because I am sure they should be monitoring a patient's eating and nutrition problem closely. From what I have read in Danielle's posts, I feel that her mom is able to eat although with difficulty. Having a PEG tube may sound easy and painless, but it is not a natural way of eating. It may induce some hard feeling on a patient too. There can be some complications if the PEG tube is used for a long time. I don't mean to stand against using one but I do believe that if it is a must, the doctor will make the suggestion or even turn it into an order.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Danielle,
I'm glad we can all help you. This board and it's wonderful members has gotten me through some rough, scary times.
I am just a few years older then you and I can only imagine how I would feel if my mother had to go through what I went through. I thank God a few times a day that this happened to me rather then my mother or one of my children. Being a former nurse I'm a better caregiver then a patient BUT, this is the one time that I am grateful that I am the patient rather then one of my family members.
I hope your mom is starting to see some small progress! Seeing the baby and getting out of the house will do her good. After my surgery but before radiation I went stir crazy, had to get out of the house as all anyone wanted to do was sit there and WATCH me in case I needed anything, lol. Sooooooo, I told my mother that I was going to the grocery store...........BY MYSELF!! The whole house went over the edge for a bit but I got my way. Should have seen the people in that grocery store. I had a chin twice the size of Jay Leno, I still couldn't stand completely up straight, my neck looked like someone had tried to cut my throat, and my leg where they took the bone was still in this boot thing that caused me to walk at a snails pace. But, I walked from produce all the way through frozen foods and felt like a new woman (nothing like "our" grocery store to make us feel like ourselves!).
So, I have a feeling that after your mom spends a week or so at your house that you will report to us that she feels better. I sure will be praying for that.
Take Care,
Minnie

Minnie,

You are soooo funny. Well my mom arrived at my house yesterday. She looks beautiful (although she is skinnier than I've ever seen her not too skinny though just like she's ready to put on a bikini). Her face looks fine just a tiny bit red and her neck still has a couple of those ouzzing red rashes but she looks sooooo good to me. Her voice is coming back! And great news she ate Clam Chowder, Macaroni and Cheese and a frozen yogurt. She is getting her appetite back and she can actually taste (the first bite anyway). He mucus is subsiding and she only got up about 3 times to spit out the yucky stuff last night. What a relief. She seems a little sad. She is scared going through the "What if's?" and she read somewhere that radiation has a 50% chance of stopping another recurrance. I told her never use numbers and I'm going to have her read a few of the posts on the board to see what types of things she will start to experience. Her tongue has been bleeding a little. She thinks she might be biting it when she coughs. There is a pretty big sore at the end of her tongue. She has an appointment with her oncologist on Friday so she will get it checked out then.

I'm sooo happy things are looking better. I just have to keep her and my sister thinking postitive. I will post again with an update.

Thanks again for everything. You are all in my prayers!
Danielle