I am about 5 weeks post treatment. I had IMRT x 35 and Chemo (Cisplatin) x 3. One thing I haven't seen discussed much on the board is speech problems. My tongue is so sore and swollen still that I can just barely speak in a manner that anybody can understand me. When I do try to speak, I can just barely pronunciate the words, and I have trouble drooling when I try to talk. Is this normal? I've heard of people losing their voice but I haven't seen people discuss having difficulty with speech due to sores and/or swollen tongue and mucous from radiation.

The other sort of related thing I'm still experiencing is the mucous problem at night. I've read that most seem to have problems with lots of mucous. Mine has improved but I still have tremendous difficulty sleeping! I wake up every half hour to hour with a big puddle of mucous drool on my pillow!! I get up, spit out what I can, find a dry spot on my pillow and try to sleep again, but within an hour I'm back up with it again. Is this normal? Everybody else seems to discuss having the opposite problem - being too dry!! Granted it has gotten a bit better but I'm suprised to still be waking up so often with this problem at night. Here again I haven't seen anybody discuss problems with it at night so I'm wondering if any of you experienced this problem of drooling mucous in your sleep, waking you up frequently. Any input appreciated on either this or the speech issue....thanks!

Hi Steve,

I had problems with speach for a long time. it grtadully has subsided. my tongue did not work the way it used to. I am now 1.5 years out and I still am hoarse at times. I think time is the answer. Also, keep trying onthe speach. the swelling of your tonmgue shuold gradually subside.

I did not have the experience with the mucus though. Several of my contemopraries had machines they used to suck the mucus. Did not talk to them aboutr sleep though.

Steve

Steve J, I am sorry I did not see your post sooner. I have the answer to the sleeping problem!

Take some clean gauze and wind it up to about the size of your little finger. Put one on each side of your mouth, in the "gutters." Sleep with your head slightly elevated. The gauze will soak up a tremendous amount of the gunk. Even at my worst, I would be able to sleep for 5 or 6 hours.

As far as wiping your mouth out, Puffs brand tissues seem to be the softest and strongest. Not the kind with aloe, just the regular variety.

This will end, you know. For me, it stopped very suddenly, followed by a couple of very weak false starts. I am four years out from TX, and some of the details are getting a bit fuzzy, but I will NEVER forget that awful mucous. it seems to be a final indignity when one is finally finished with TX, to be saddled with that.

One more thing. Cover the pillow with a folded bath towel. This soaks up better and is easier to wash.

Hey Steve,

I had that mucus/drool problem going on after radiation too. It goes away. You're only 5 weeks out. It takes a few months actually. I remember putting tissue under my cheek. Eventually it does stop.

Speech-wise it was really tough for a few months too. I ended up having surgery and having 3/4 of my tongue removed, and I am still more understandable now then I was a month after radiation. It'll get better for sure - it seems an enternity while it's happening but ya just have to wait it out.

Hey, Steve- the way John's Doc has explained it to us is that once your mouth is "invaded" [by radiation, surgery, tumor, etc.} your salivary glands will fight like hell to get back to normalcy. It sounds like yours are doing just that! This is a normal reaction. I can't address your speech problems because John has had most of his tongue removed, so he is in a different place. Please try to pace your recovery one day at a time. That will help. Amy

Steve-
I "slept" in a recliner for a couple of months because the mucous was so thick during treatment. And used a machine to suck it out of the mouth. Finally graduated to the bed as long as I was propped up with pillows. It was at least 3 months from radiation treatment before I could lie down to sleep. Went through tons of kleenex - should have bought stock in the company! It does get better!! - Kris

I guess I feel good that I am only 5 days post TX and I am able to sleep 4-5 hours between spits and wet pillows. And I am speaking OK, I guess its really is location dependent and exactly what part of what muscles and tissues were effeceted. Here is what helps me sleep:

Sitting upright when it gets bad
Keeping a cup bedside to spit in so I don't have to get up.
Not drinking or eating (stimulating my saliva) just before bedtime (few hours).
Finishing brushing and oral care atleast 1/2 hr before bedtime helsp things too, lets my mouth calm down before I lay down...

Rinsing with cranberry/soda water has helped the most to loosen up my mouth and throat from the mucus and sores, etc...it strips the slime out and lets things breath a lot. it stings but its worth it for sure.

-dw