Leonard, have you tried using the Waterpik? My husband used to say it was the best purchase I had made for his treatment.

Leonard,

Sounds like you could use a good dose of hope.

3 years and 3 months ago, I was in the same place you are. I got a peg tube with 1 week of rads left. I reached the point I could no longer get anything down orally. Every day was a struggle, every hour was a struggle. 1 week after rads, whenever I had the energy, I hobbled into the kitchen to push liquid food into my peg tube. Knowing that it was probably that I would throw it up. Let me tell you if felt like razor blades coming up. Then, knowing I had to try it all over again.

My weight was down 30 lbs off my 150 lbs frame. I stopped talking completely. It got so bad the doctors forced me onto a feed pump system. I started using it week two. By the third week I noticed is stopped getting worse. It did not get better, but finally stopped getting worse. That was huge.

By week 4 I got off the feed pump and I was able to go back to manual feeling the peg tube. Week 5 I made an appointment to see a speech therapist. She did the swallow test. Hurt like hell. That was really the first swallow I had in 4 weeks. However, the Tech said "you have some leakage but it time to start relearning to eat. Over the next 3 weeks, she made me eat with electrical pads on my next that showed the muscle strain. My goal was to swallow hard enough to reach 50 units. I started around 20 but by week 3 I got up to 50. Still hurt but I was eating food. By week 7 I wanted the peg tube out. Once I started eating things were getting better.

Fast forward 2 months and I was able to eliminate the liquid supplements.

You are now entering the toughest faze. But things will get better. Focus only on getting through the next feeding. It suck, I know, been there. Feeding turn into days, days turn into weeks. I promise you by week 4 things will start to turn, And that is "HUGE".

I am now 3 years out, and I am sure you would not know what I went through.

Don't worry about tomorrow, just get through the next feeding.
Good luck

Thank you again to everyone. I am still swallowing liquids. It takes time but I am getting it down. Yesterday I went back to the hospital they gave me IV fluids due to dehydration. Going back Monday to get checked again.

Hi. You can't really judge from old threads because people might have had more than one round of treatment. I'm sure your mucous stage will be of shorter duration. I'm no expert but maybe better pain meds will reduce the discomfort from thick mucous. In my experience discomfort can be as bad as pain and some pain meds (for me Oxycodone) reduce the sensation of discomfort. Just an idea. Remember, you are going through an acute stage ... it won't last forever.

Best wishes.

Thought I would add an update, now 12 days post radiation. The disgusting mucous is still in my mouth. I went back to the hospital on Monday to get checked out, no fluids needed. Weight has stayed pretty much steady overall down 20lbs would not mind dropping another 5. (yes I know this is not a weight loss program) I am not in allot of pain. Just this awful mucous.

Hi Leonard,

You are in the toughest part of the journey but won't be long before things stabilize and you'll slowly start feeling better. I was with you on the "free" weight loss program. I had planned to try to hold my target but lost an additional 5 or so before things stabilized. It is tough to keep eating but no matter what keep fluids going. I slipped once and ended up in ER needing some IV fluids.

Mucous is variable - some get none, some get a lot. I did not get it that bad so not much advice on that front.

Hang in there; brighter days ahead soon!

Don

Hi Leonard,
Just wanted to say that my mucous stopped suddenly three weeks after treatment. I was desperate for relief. Even had a hospital suction machine it was so bad. Someone else had posted it took them three weeks for improvement and I held on to that. It happened. I know no two people are the same. Have hope. Now I have a dry mouth which isnt the best but its way better than that mucous which was actually saliva the doctor said.

Hi Karen,

you are the second person that said it stopped after three weeks and said dry mouth quickly followed. I can not wait, I am so looking for some relief from this. I have no significant pain other than the muscle tightening which I do the jaw stretch exercise to work out. This damn mucous keeps me up at night, I sleep best sitting in a chair. I also asked about the suction machine more than once, they have not offered it. Was going to purchase my own and they said I need a prescription. I go back to the hospital to get checked again on Friday, I will ask again although if I follow the same path I may have one more week of being absolutely miserable.

One question I have not asked, once the mucous stopped how was eating real food afterwards. I have not had solid food in over a month.

Leonard, when dry mouth sets in, you may find that swallowing gets a bit difficult because there's not enough saliva to lubricate the food and help move it to the back of the throat. You may have to eat food that is moist with lots of sauce, of have a glass of liquid on the table. Some people have a bit of food followed by a sip of water. Have small mouthfuls at the beginning until you are sure you don't have any problems with swallowing. You may also find that some food now taste different. You will eventually figure it all out. Good luck.

Gloria

Regarding the waterpik, how did he use it, how did it help ? I have a small one I use battery powered to clean between my teeth. When the mucous is in the roof of your mouth and down your throat it seems impossible to get rid of it. This week I was so frustrated I place the house with the sprayer in my mouth. It actually cleared things out a little but caused pain because of the muscle tightening. It seems the water pic stream would be too narrow and too much pressure.