Pilocarpine for dry mouth from radiation: What are your thoughts?

@duranjack
Keeping mouth clean.
Rinsing consistentlly.
Yes, try xylimelts.
This regime is tedious however, in time, it'll be second nature.
Be well.

Thanks for all your replies.

I have heard it could take up to 9 mos to see improvement. I will try that. I don't have any side effects that I can tell. I guess it varies some will get significant saliva back and others will have to get used to their new normal. I don't know where I eventually fall between those two categories, but either way I must be thankful for what I do have and not look at what I don't.

God bless you all.

@jg99t9 I have dry mouth that is very irritating and mucus that feels stuck on my throat especially in the morning. I’m worried very much because I’m a teacher by profession how it would be when I get back to work. What can really help with dry mouth?

FOR DRY MOUTH ISSUES:

I stated this before that I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and to help with the brutal dry mouth and after my research I tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which was offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this day. I also slept with a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help with sleep. Since then, I believe there are other additional avenues like sprays to help with that.

I got this from my other cancer group SPOHNC and it mention AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

Good luck on the journey.

@duranjack, sorry to see that 2025 wasn't good. Thank goodness 2026 is around the corner. Can you explain what you mean about feeling like there is a clear poly everywhere in your mouth?

@linda90
Hey, Linda
I'm 14mos post treatment and still dealing with dry mouth and mucus. It seems to be getting better but the healing process is sooooo slow. In the meantime there are things that you can do like stay hydrated, sugar free hard candy, there is xylimelts and sugar free gum with xylitol, using a humidifier when you go to bed. Everyone heals a little differently. Hope your healing goes well. Hang in there.

I’m two months out of treatment and so far it’s just the dry mouth that is bothering me much. Plus now I have a fear of the CT scan that will be done in March since I never had one after treatment. I asked my doctor if there’s still any cancer cells what is it that they will do and he said they will operate. I’m so scared and I would like to ask those who got their first scan if it’s clean or how? I had 33 radiation treatments and 5 chemotherapy treatments. Please help

@linda90 hope you try xylimelts for dry mouth!! They make a big difference especially when trying to sleep!

@oliverpuppy
@linda90
Let me tell you that xylimelts are my best friend, I can't leave home without them.

@linda90 Hello!
I am 5 years post treatment for base of tongue. I had 7 chemo and 35 radiation treatments for BOT and the majority of lymph nodes of left side were positive. When I went back to work I kept a water bottle handy. In fact, I always have water with me. I have tried every prescription medication, over the counter, and home remedy solutions. The only thing that helps with dry mouth so I can talk, or even sleep, are Halls Balls. Yes, the Halls cough drop, but these are small little balls. They have cherry, honey lemon, and watermelon. I use Watermelon. It gives me a few minutes of relief to help with the mucus and dry mouth. It’s short lived but I’ve come to accept my fate of limited saliva and drinking loads of water and using the Halls Balls to get me through the day and night. Wishing you the best when you go back to work.