Hi all,

I am almost 2 weeks post treatment. I am just starting to see a little improvement. My big challange are calorie intake, water intake, and thick nasty saliva.

I also have a little flap problem. A little water and saliva sneaks down the wrong hole. This causes me to cough more than I should. This also makes it hard to drink liquids more than a spoon full at a time.

Today I have a swallow therapy doc appt. It is a new program where they get involved early. She was sick of seeing people one year out with full blown problems with little hope for improvement.

It still hurts to drink but it does feel like it is getting better.

I am 100% on the peg but I think my swollow doc is going to make me eat something today and give me lots of home work.

No taste yet but I really miss food.

May I ask what you mean by a flap problem? I don't see where you had any reconstruction done in your signature. I ask because my husband will be having free flap reconstruction next week. Just want to be prepared if there could be problems.

Bette, as Reg has had a laryngectomy aspirating/fluid going down the wrong hole will not be an issue for him. I know it's best to be prepared but luckily this is one issue you don't have worry about.
Thinking of you,
Tammy

You are correct I did not have any surgery. Epiglotis is the flap. It just allows a little liquid down the wrong pipe when I drink.

HD - know where you're coming from. I can remember furious bouts of coughing when tiny bits of water and such would go down the wrong pipe. And I doubtless had it easier than you since I went without a PEG and so was forcing myself to drink Ensure and water for months. I'm glad you're going to a swallow specialist. They are very helpful and will give you exercises to help strengthen your muscles and retrain them.

Keep us posted on your progress.

I did have the same problem about water going down the wrong pipe. I did have improvement after I hacked up some gross phlegm and it looked like some type of skin/rubbery thing. My ENT said the throat is sheding the dead skin.
After about 5 week post it seemed I could drink and eat somewhat.

Let me know what the swallow therapist says and what the therapy is.

Some members find drinking liquids that are thicker are easier for them to swallow. You definitely should have a swallow study done to be sure you can safely drink. You do not want fluids going into your lungs, it can cause aspiration. Ask the swallowing therapist about a thickening agent that is easily found in drug stores if that would be helpful in your situation.

Good luck!!!

I remeber where all I could to was keep the fluid down. Radiation was so bad that I went into the hopistal a couple of times to have iv treatment for dehydration. After treatment it took about two weeks then I was able to keep chicken broth down. After a month I was able to eat tomatoes, but they still caused blisters. It was another 6 months before that stopped. I am 11 years out and I have extream pleasure when it is mexican night, I can taste that. My son is my tester or else others will have to much spice when I test. That is the fun part when he is not around, and I see their faces.

Hi all

4 weeks 2 day post treatment update. I am now taking all cals by mouth. I am done with the peg. I hope to have it removed this week. Swallow doc was well worth it. I am eating a lot of different things: hot dog, meat loaf, hamburger patty, hard boiled eggs and mayo, cooked veggies anything but dough products.

The only pressing issues is sore throat. It reaaly hurts when I sneeze. I also can only taste salt. Mentally I am really tired of being sick and tired. I really want to taste something.

I also can't open my mouth reaaly wide at all. I am stretching everyday but it doesn't seem to get any better.

When will this lingering sore throat go away?

See the MO tomorrow should be last blood work. It has been good the past two weeks. I see the ENT the 20th. He is going to scope me ouch!. I am sick of giving blood.

Life has really improved over the past two weeks. But I still have a way to go. To all the rest of you BOT'er, hang on, things do get better. I don't think I could not have made it without the peg or extra fluids during "the tough 4 weeks". Last two in treatment and the first two post. Don't try to be a hero, if your not getting your cals in, get the peg. Also it took 6 days to get. So don't wait to long.

Radiation continues to work just as long as treatment lasted, 6 weeks, so things are still going on in there to kill the cancer. Healing takes longer, and everyone is different. Just continues maintaining your oral care, pain medications, adequate nutrition, and prescribed exercises, and it will come along, maybe not like before, but better than 4 weeks post treatment. I could not eat by mouth until 14 weeks. See you speech and swallow therapist about the trismus, which can interfere with oral care, eating, and speech, and may be more noticeable 3-6 months post treatment due to muscle fibrosis, so exercises everyday like you are doing have to be performed. They have adjustable gauges opening contraptions that can help with the mouth opening, but forget name.

Argh. Called yesterday to have the PEG pulled they said Jan 7. Granted the thing probably saved my life but I still hate the thing. I have not fed with it in 8 days. It's got to go.

They said they were booked with emergency cancer patient, Vac and holidays. I told them great, I am an emergency cancer patient on Vac thru the holidays. They did not find that funny.

Saw the ENT yesterday. He scoped me and said everything looks great. I even gained 3 lbs.

Anyway, Today is 5 weeks since last rad. Life is good. The only issue are sore throat while swallowing, dry mouth, very limited taste, and this hose coming out of my belly. I even resumed my hockey dad duties.

What a huge difference a few weeks make! You have certainly improved significantly! Congrats

Good luck with the tube removal! You will feel like a new person when you are finally free from that thing.

Happy Holidays!!!

Sounds like you are recovering well. Keep up the good work!

Woot - bye bye tube... Soon!