Hey, sorry i haven't been on in a while; I've been so exhausted. Post treatment so far is kicking my ass! Was really bad physically and mentally over 4th of July. Right now I am a week 1/2 post radiation chemo. radiation ended June 28th/ last chemo doe was June 30th. They said it will be tough for 2-4 weeks post treatment.

Have new question? Right the tough part is getting sleep, but it seems that I have constant secretions; not necessarily thick but constant. I know I'm not swallowing like normal right now such as frequency; so I have constant spit..using a spit cup and wash cloths to wipe mouth. But the trick getting sleep and drool/spit build up. I have noticed that when I was using the pain meds it dried my mouth and allowed me to fall asleep eventually for a hour or two. Should I try benadryl? Also, what about the liquid mucinex? Thanks!

Charles

Charles,

For many the few weeks post Tx are the worst part of "treatment" and from the sound of it with you being 1 1/2 weeks post you are actually doing great, relatively speaking of course! lol

The "wet mouth" you are experiencing now will unfortunately give way to "dry mouth" and depending upon the damage you experienced during radiation you will slowly recover over the next few years. I recovered to appx 90+% and it took me 2 years to get there and it hasn't changed since then and I'm coming up on 4 years. This wet phase doesn't last long, few weeks or so, so I just grinned and bared it. I walked around with a small styro cup in my pocket and spit in it constantly. I would often wake up and barely make it to the bathroom to spit up the mass that had accumulated in my mouth, and often times this would trigger a gag reflex and I would throw up just for good measure. Uck times 10.

Liquid mucinex is the best for what you are describing. Watch carefully, this excessive salivia will probably turn into dry mouth. At least thats how it went for me when I was about 1 month post tx. The fatigue will improve steadily. After about 2 or 3 weeks you will start to feel a little better. Its a long process that can take up to 2 years til you completely recover.

Congrats on finishing and best wishes with your continued recovery.

Carol had so much excessive saliva there was a plastic coffee can in the bedroom, living room and car. She also bought stock in paper towels. She tried the mucinex, didn't care for it, the saliva seemed to have gotten worse after using. Old sheets, pillow cases with daily washing was routine. She managed to get an hour's sleep in between the spitting. Now the saliva is almost gone, except for the occasional need to spit (couple times a day) and dry mouth has taken over. Waking up at all hours drinking water. What a cycle! A water bottle and Kleenex is part of the "leaving the house" arsenal now.

Linda

my doctor prescribed a portable suction machine that i kept by my beside. i used it frequently when i was going through the post TX hyper-salivation phase. my insurance company paid for it and the hospital delivered it right to our home and picked it back up when i no longer needed it.

My 7 weeks of radiation and Chemo ended June 9th. Like you I had excessive amounts of Saliva- I couldn't sleep in Bed- I slept in the recliner getting 2-3 hours of sleep at a time. I keep kleenex and or paper towels to spit into. I ended up in the hospital with fever and mouth sores 1 1/2 weeks after my treatment ended. bringing the pain to a level I had yet to experience.
The hospital was my rock bottom. Things have been improving steadily since. July 2nd was the first time I have slept in my bed. July 8th I had a scrambled egg for breakfast- It took some work to get it down, but tasted good. July 8th I had a small plate of fettuccine alfredo. Things are finally improving. I still need the kleenex, but Nights are much better

Charles, my experience was similar to yours and the others'. It's tough to go through it, even tougher to convince yourself that it's just a phase. But it is. For me Benadryl made me very slightly sleepy and helped a tiny bit with itching when I was on heavy doses of oxycodone. You might give it a shot and see how it works for you. I never tried mucinex so can't comment.

Unquestionably the month or so following radiation is as tough or tougher than the treatment itself.

Hang in there buddy!
D2

Hey Everyone, I have not posted in a long while. I finished treatment May 11th and have been continuing to do really well although I did not escape w/o some lingering "issues". Two weeks after I finished treatment, the dry mouth reared it's ugly head. This was after enduring the hyper salivation during treatment that would wake me up at night choking and coughing. I now have xylitol gum and a water bottle in my hand 24/7. Hoping that eventually the dry mouth will subside some. I have hated to post with such benign issues as I know so many here have suffered so much more than I have during this ordeal. I am scheduled for my first PET/CT August 11th. I have been scoped by my RO and my ENT. Both said they were thrilled and saw NED except for some very minimal swelling of my esophagus. They were amazed that I actually gained weight during treatment and I am now on a walking regimen to lose weight. I realize how lucky I was to have found it so early and that the larynx is much easier to endure treatment b/c my mouth was not affected by treatment. I am almost 5 months w/o smoking now after 40+ years. Not easy but the walking helps. My ENT says if I never smoke again, there is a good chance I may not have a recurrence which is what I am hoping for. I admire so many on this forum for what they have endured and how they continue to help others. The internet is a wonderful communication venue.

I am over four month's post treatment. Thing's are getting so much better, I was even blueberry picking today with my water bottle of course. Severe dry mouth plagues me, eating is steadily improving, I keep trying something different daily. Today chili with a half a bun worked, smoothies are great & I even managed a slice of pizza this week. There is a light at the end of the tunnel & I am happy to say I even sleep through the night now. I get the odd setback but they are few & far between. The only major negative issue that bother's me the most is my lack of appetite. I miss being hungry. I have to time my meals as
I would forget to eat otherwise. I hope it comes back in time.
Other than that life is good!

So good to hear this hopeful news. I will begin my treatment Tues and am not looking forward to it, but am glad things have improved for you.