Dear friends,

I am now 4.5 months since my last radiation/chemo treatment to the throat, bilateral neck, and oral cavity (max dosage, I think). I don't know if I am imagining things or not, but I feel like I have more dry mouth than I did in the beginning. Has this happened to anyone else?

Also, over the last couple of days, I have had some soreness along my left lateral tongue (where it was resected with my first cancer). Upon inspection, it looks red (to Dan), but he said it was more vascular in nature. I'm thinking that my tongue may be sticking to my molars when my mouth gets dry during sleep. At this point, I am seeing my med/onc team one month and my SO every other other month (so I am being followed monthly). I am being scoped at every visit along with manual palpation. I have an appointment with my med/onc team on the 26th. It's just hard not to worry at this point since I am still recovering both physically and emotionally from this second primary cancer in my tonsil.

I always have water with me, even at night, but I don't often wake up to drink. I start drinking water as soon as I get up. Another factor is that I am nearly done tapering my methadone in the next few days (hopefully).

Any thoughts, input, or advice would be much appreciated!

Love,
Kerri

Kerri, unfortunately this is pretty normal. Dry mouth can be very annoying! It can also cause other complications. Some people end up carrying a water bottle everywhere for life.

Have you asked about the salagen or pilocarpine medications to help with saliva? Some members have found success with that. I tried it and all it did was make me sweat (something us girls dont do).

Drinking water is good, also keep rinsing with the baking soda/salt mixture. How about using the dry mouth gel? A friend gave me some tablets that coat the mouth, I think they stick on the roof of your mouth and slowly dissolve. I only used them a couple times and that was a while ago so sorry I cant quite remember.

Thank you, Christine. I plan on buying the Biotene gel. I use the mouth wash, but only before bed. Otherwise, I am an official water bottle-carrying patient. I will ask about those meds at my next visit. Frankly, I am so sick of taking meds that every time I can stop one, it makes me feel better. I guess you have to pick your battles! Things could be much worse, of course. I just hope this soreness on my lateral tongue is nothing.

Thank you as always!
Love,
Kerri

I attended a post treatment workshop for patients and caregivers this week at our hospital. For combatting dry mouth, they are recommending coating the mouth (gums and tongue) with 1/2 teaspoon of vegetable oil or mild olive oil at bedtime. My husband has tried it for a few nights now and finds it helps. Hope this helps, it is cheaper than biotene.

That sounds like a good idea, Gloria! Thanks for the home-made advice .

Kerrie. It has been over 5 yrs for me and the dry mouth is worse now than before. I have every concoction they make and nothing seems to keep my mout wet for long. Maybe 10 minutes is it . Someone even suggested to try lemon drops. LOL Talk about burning. One day maybe they will make something that works. Good luck.

Thanks, Jim.

It's not horrible, but I'm wondering if it's the contributing factor in my tongue being sore (mostly when I wake up in the morning). I'll try the Biotene gel and hopefully, I'll get somewhere.

Narcotics, methadone, can cause dry mouth, tongue swelling, amongst other side effects, so maybe that will improve when it's finished.

Thanks, Paul. I am taking a minute dose of methadone now and should be done in 2 days (hopefully), but I have experienced other side effects from it for sure. It's a double-edged sword, my friend.

Kerri

I was just going to write about the mouth soreness. I have been about 5 to 6 months since treatment and my tongue has the same thing. I thought it might be from the biotene gum (I like it) or from trying too spice food or from my dental trays.
I guess it is not too uncommon. Thanks for the post. I did not think about it coming from the DRYness of the tooth the the tongue sticking to it.
I will ask my ENT Friday (03/22) about it, I want him to see it....

Next (2nd) CT scan 04/03/13, since the treatments it will be almost at 6 months.

Kerri, I hope your sores heal, ... I did try neosporin but it doesnt stay on there long enough....