Hello Lorie,

What a tough, slow healing process your husband has had.

My cancer was on my tongue - had 1/2 my tongue removed in September and finished radiation about 5 weeks ago. I definitely had an easiler recovery, but I did have trouble with that thick saliva gunk, making sleep very hard.

I had a prescription cough syrup - guafensin (robitussin) with codiene that helped. Also the hydrocone/lortab I had for pain enabled me to sleep more than 2 hours at a time. I had to sleep in an almost sitting position with 3-4 pillows propped under my head and shoulders. Also kept (still do) a very large glass of water or water bottle next to the bed. I used a humidifer for moist air.

During the day warm drinks help to thin the thick saliva. I quickly went back to coffee (compared to other food & drink), also herbal teas, thin soups or just warm water. I didn't like drinking Ensure because it would make the mucus thicker. I liked soymilk, it was thinner than regular milk or Ensure. Recently, I added Ensure (chocolate or butter pecan flavor) to my coffee which made a nice treat and thinned the Ensure making it easier to drink.

Yogurt, soy milk and ensure was about all I could handle at the end of radiation when my tongue and throat were burning. The yogurt may help with thrush because of the yogurt cultures. I had/have to avoid most acidic/citrus/tomato. Also spice and pepper are hard. I have to drink at least 4 large cups of water per meal to swallow food, I also have physical troubles swallowing due to losing have my tongue. I kept an open can of chicken or beef broth around to add to foods - like meat or vegetables, potatoes, etc to help make it easier to swallow.

I hope some of this helps, i'm getting a little sleepy and not sure if I'm making any sense. I'll try to add more tips if I think of them.
Hang in there,
michelle

ps
Another vote in support of anti-depressants (I take a selective seratonin reuptake inhibitor called celexa and have found that it keeps me upbeat, and I see a therapist)

Thanks again for everyone's wonderful "handy-hints" and loads of inspiration and support!

Some things are improving slightly...the AllegraD Don's primary physician prescribed is actually helping the post-nasal drip but of course is making the dry mouth worse. Don says he may try to take it only at night like you suggested. It hasn't really helped the ear pain and we plan on seeing the ENT for this just in case it is damage from the radiation and not just a side-effect from the post nasal drip. The top of the tongue was getting better, until the radiation oncologist examined him and stuck his fingers all around...now it is hurting more again, but we at least know what caused that. Don says it seems the under-side of his tongue is healing faster than the top, but given the news the GI specialist told us today that will not really matter.

Don had a barium swallow x-ray yesterday and today we saw the GI specialist about his problem swallowing. Well, again good news and bad news. Good news was it didn't seem too bad. Bad news- there is slight tightening of the esophagus and it appears that he is aspirating the fluids he is drinking into his lung. So, he told Don not to drink thin liquids like water. He said ok for the Carnation instant breakfast and he wants him to try shakes, but we told him the only problem with that is that it sticks to the "gunk" in the back of his throat...boy, the fun never ends. The GI specialist is going to get the insurance to approve a scope test of Don's escophigus and is referring him to a speach therapist so that we can learn what foods are safe for Don to try. He is also referring him to the ENT to check the area of the tonsil (where the tumor was removed) where he thinks the problem is that is causing the aspiration and difficulties swallowing.

Needless to say Don's spirits are low again, but on the bright side he is getting a little mad at everything now. He is going to go golfing on Sunday with "the boys" to let out this pent up anxiety. I am proud of him for this. At least the hernia is healing well and he can now move around and drive and isn't stuck in the house as much.

We will be seeing his primary care physician Monday and I will be asking about anti-depression meds for him. I went to my doctor Wednesday and now I'm on Lexapro.

Again thanks for all your support and words of encouragement.

Lorie

Hi Lorie,
I know just how Don feels. I was pretty angry for a while also. I also went through a bout of depression. It's pretty tough to subject your body to this kind of beating and not have some (really) bad days. I don't know how my wife put up with me sometimes.

By all means get the earache checked out but they are pretty common post rad. My doctors weren't surprised. They checked it out on the MRI - said it was a common radiation side effect. I had some fluid buildup in the mastoid area for several months - at times it interfered with my hearing. Then one day it just went away and that part of recovery returned to normal. I bumped up my pain meds to deal with it. I haven't had any earaches or hearing issues since. If the decongestants are making a big difference I would stay with them - if not, the dry mouth being intensified is a factor to consider. Post nasal drip would more likely give you a sore throat.

A lot of the swallowing problems are from lack of saliva and also texturing of the muscles in the neck from the radiation (of course the thick mucos is of absolutely no help). It should improve over time. And on aspirating fluids - it is never a good thing but it also comes with the territory and it will also get better, like everything else, very slowly. There were times I thought I would NEVER stop gagging/choking on food or water. Tell Don to use a straw when drinking liquids - that helped me a lot. Eating and drinking was a real chore sometimes - ALMOST made me wish I had gotten a PEG tube.

You can easily water a milkshake down by adding more milk. I also used to add a scoop or 2 of nestles Quik into the Instant Breakfact for 100+ more calories.

When I was feeling really sorry for myself, early in recovery, I went to a funeral for a friend who died from pancreatic cancer. I had to drag myself there I was so weak. He was Dx'd the same month I was. I realized it could have been much worse. They have a saying in AA "I felt bad because I had no shoes, then I met a man with no feet". It's all about keeping a healthy perspective. It's good that Don's getting out of the house with the guys -I am sure that you can use the break too...

Hi All-

I know it has been a while since I last posted, life has been hectic...but I'm sure you are all aware of what that is like. We have used all your wonderful handy hints...thank you very much. Don- my husband- had a barium swallow test about 3 weeks ago and we discovered that he was apirating his fluids into his lungs. With that they scheduled more tests and one of the doctors scared us when he stated that if they discovered nerve damage that the feeding tube could be in for life. Needless to say we were a bit depressed. However 4 days ago he decided to try to eat again...and guess what...it worked. He can now eat spaghetti with lots of sauce and mashed potatoes & gravy. Soup is a good thing and he is actually having fun trying new things...even if some things are still far out of reach. Though it has been over 5 months post treatment and we never thought it would take this long to eat his first meal but better late then never.

He still has an ear infection and it is possible that he'll have to have a tube put in to help with the fluid build up...but the ENT believes the antibiotics will handle the problem. Don is still frustrated with the inability to hear but the eating thing has lifted his spirits.

Don has to do exercises for his jaw because it is getting very stiff...but the dentist noticed that he is able to open his mouth a lot more than he could 1 month ago.

So, for anyone who is discouraged, as we were, just remember the story about the turtle and the hare. Things may seem slower but patience is something we have had to learn through this entire experience. I know we still have a long way to go, we are definitely slow learners in this field.

Thanks again for all your words of encouragement...you are all GREAT!!!

Lorie
_______________________________________
husband diagnosed with tonsil cancer 8-7-03/stage III/35 IMR/6 chemo

That is REALLY good news, Lorie and I am very, very happy for both of you. Thanks so much for posting. It always great to hear about progress and improvement.

Lorie,
I had my esophagus dilated approximately 3 times due to a stricture or blockage that occurred following radiation. It was a simple procedure and was successful and I no longer have any problems getting food down the esophagus...once I can swallow it. My swallowing is another story! Anyway, have no fear if an endoscopy or esophageal dilation is required.

Danny G.

First time for this, so bear with me. My father was diagnosed with squamous cell cancer of tonsil and also extended to his tongue. Was experiencing trouble eating, which caused the doctor's visit initially. Due to the size and position of tumor, surgery was not an option. July of 2003, feeding tube was inserted and also a port was put in to help with chemo. Had 37 radiation treatments with lo dose chemo at same time. Finished radiation Nov 2003. Heavy chemo began shortly after. Finished chemo in Jan of 2004. Still cannot eat or swallow anything by mouth (it's been over 6 months already). Experiences dry mouth quite often. Constantly tries to cough up phlem (?), not sure what it is. Can't seem to get it out. Fighting depression. Complains of earache and pain in jaw quite often. Oncologist has him on diludid and hydrocodone for pain. Doesn't seem to be enough. Trys to eat a little. He thinks it goes down, but he will cough, and whatever he has eaten, returns. Just found this website today, hoping someone has been thru this, and can tell me its normal. We still have to do post treatment PET scan. Seeing Oncologist tonite- hopefully things will get better.


Thanks,
Vickie M

Hi Vicky,
I had earaches after my radiation treatments but the pain was not something I needed any type of pain medication for. I also had aching in my jaw. I have a feeling I am younger then your father so was able to handle the pain better. He is still only a few months from finishing treatment and it takes a long time to see a lot of improvement.
I would keep at the doctor about the fact that he is still in pain and where the pain is. He shouldn't have to suffer.
Take care,
Minnie

Hi Vicky,

Welcome to the site. Sorry to hear about your Dad, but most of what you are describing is not unusual.

Please take a minute and do two things.

Start a new thread so other members can find this message. I'd hate to see it get lost, there are some very knowledgeable people here that can offer advise.

Also, please read other messages on the board and the main body of this site. They are both have great search engines and will help you in learning information. Just the FAQ questions are helpful.

Again welcome and we are glad you found this site. Knowing as much as posiible is important.

Take care,
Dinah

Dinah,
How are you doing? I haven't chatted with you in quite a while and would like to hear from you. Feel free to email me at [email protected] and tell me how things are going.

Danny G.