Hi everybody,

My mom finished her last radiation session on Friday so now its time for her to start on the long road to recovery. She is not going to be very patient with this. I told her that for every week of radiation it takes at least a month to get back to somewhat normal and she really didn't like that at all....but she doesn't complain. The only thing that is really bugging her is the mucusy saliva that she is constantly choking on. It is making her sick so that she ends up throwing up. Shes barely getting her Boost Plus down at this point so the throwing up is not helping her. Is there really nothing she can do but wait for it to go away. Any suggestions would be helpful. People have mentioned a steroid? If so what is it called? Or do you just recommend that she wait it out?

Thank you,
Danielle

Hi Danielle,
My doctors had me take a cough syrup every day to control the thick stuff. It did help some. It was Guaffinisan (sp??). It also helped to drink a ton of water and to sleep with my head propped up. In time it will resolve.
Glad to hear that your mom is done..........pretty soon she'll be offering advice to everyone else on here!
Minnie

Danielle...

Keeping her head elevated should help. I think I mentioned that I slept in my recliner. That really helped alot. I also took a cough medicine. I took Robitussen, the expectorant formula.

I finished treatment a little over a week ago and the saliva is reduced to a few times a day rather than gagging and choking every hour or so.

I had the same problems where I was coughing so bad I'd lose food in the mornings. So before I got up I changed the routine to allow a coughing session.

First I'd clear my mouth as best possible using tissues, kept the cool air humidifier on & played my video game while resting @ an incline. Strangely the video games Columns & Tetris kept me focused on something else entirely that I relaxed enough to keep from that gaggy hard cough from happening. Once I felt ready & cough free I'd eat...er, inject my Osmolite breakfast. Hope this helps, good-luck!

Thank you for all the suggestions. She is having a difficult time with all of this mostly because like everybody says the process of healing is very, very slow. She would hope to see a little progress everyday but that just isn't happening yet. Its been a week today since her final treatment and she still hardly has a voice and the mucus has not subsided at all. She is still using a couple pain patches and is barely getting 1 or 2 cans of Boost Plus down a day down. Needless to say she has dropped quite a bit of weight. But she is strong going on walks on the beach daily and trying to get somewhat back to her normal life. She hasn't come to my house yet because like Karen and Gary said she probably wouldn't feel up to it yet. The last week of radiation was the most damaging as far as setting her back. She was pretty good until that last week.

I will keep you all posted on her progress and have her post something when she comes to my house next week. Thanks again for all your support getting her through this extremely difficult process!
Danielle

Danielle,
My last week of radiation was also the worst. I had a reaction to the medicine they gave me for the nausea. Tell her to hang in there, it WILL get better!

Minnie,

She says she feels like she is dieing and I swear she thinks she will not get better. I think this is the depression that you all talked about. I wish she could talk to somebody who has been through it to let her know that it does get better. I keep telling her what everbody says but coming from me a perfectly healthy person it doesn't mean much right now. My sister and I just keep telling her to hang in there but we are not the ones who have gone through everything that you all have. I feel so bad for her. I just want my mom back to somewhat normal so we can get on with our lives......

Hey Danielle,
My hubby was not able to take in half the BoostPlus they put him on, so we talked to the Nutritionist and found out there are many different kinds of nutrients to use that have many more calories a can...Dan is on Nutren 2.0 which has 500 calories a can...check and see if there is a change she could make there to take in less liquid but also take in more calories at the same time. It has helped Dan alot. He received two extra weeks of radiation which that alone almost killed him. He had his last rad on Monday and has had a very hard week. We were told he might feel a little worse before starting to feel any better, and that is exactly how it has been this week. Looking forward to also feeling better soon in the future. Dan hasn't been able to talk for a month now so it gets pretty lonely!!

Hang in there...make sure you have a great support system and your mom also. God gives me strength just about the time I think I cannot bear to see my husband suffer anymore.

Take care,
Debbie

Debbie,

I will definately pass the advice on about the other high calorie drinks. You'll have to keep me posted on Dan's progress from the radiation since they finished up right around the same time. I think my mom(Barbara)is dealing with the same thing (it getting worse before it gets better.) Thats probably one of the most frustrating parts. You'd think once it was over there would at least be a little progress daily. It almost seems like her voice gets more hoarse by the day and since she has no PEG tube everything she eats she has to swallow which isn't the easiest thing if you take a look in her mouth.

She is very close with the priest at her church (my grandfather was the priest there before he passed away)and it helps her a lot to talk to her a few times a week. I can't imagine how it would be if she couldn't talk at all. When she got her first surgery last April she had a traik for about 5 days and it made her crazy that she couldn't talk then.

I'm sure things will start looking better in the next few weeks and we can share stories then. Right now is just a very difficult time....

Danielle

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