← Return to 9 days after end of treatment, mouth and throat questions

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@robolobo

Yup, 21 days! In a nutshell: 1) Much less fatigue. Not up for a 10K but no problem wandering around grocery stuff smelling all the food in the hot case; 2) Mucus has diminished a bit, but still there and being annoying; 3) Very dry mouth, need to work on that; 4) Zero saliva. It’s that and my very dry tongue that is keeping me from taking in food orally. Tried a smidgen of applesauce, it was like sand although I had a hint of its taste. Ditto with some ice cream. Not sandy but just sits on the tongue. Got a bit of taste though. It just goes to show you how much we depend on saliva to moisten food, move it around the tongue to taste it, etc. Just need to be patient, I feel for those of you how are still struggling months and months after treatment. I am slowly resigning myself to the fact that this recovery can/will be a long journey. Which really sucks; 5) Still losing a bit of weight. I thought it would happen during treatment but it’s mostly been post-treatment. Going to ramp up calories through the tube; 6) radiation burns on neck all gone! So that’s about it. One day at a time….

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Replies to "Yup, 21 days! In a nutshell: 1) Much less fatigue. Not up for a 10K but..."

I am 2.5 months post treatment. I am also impatient.
Extremely dry mouth. So much so my throat hurts when I gargle.
I also developed lymphedema so throat is swollen.
Did you ever experienced a swollen throat and or tongue?

I am 13 months post treatment. I think you are doing great. I started out pretty much where you are. My taste came back within 2 weeks. The saliva improved very slowly over the year. I used Xylimelts mints that I got off Amazon or at Walmart. They stick to your gums and really work to keep your mouth moist and stimulate you saliva glands. I used them to sleep through the night. My saliva now is much improved. Except of course when I eat. I still need to drink a lot of liquid to clear anything baked like cookies or bread and meat like chicken. Sometimes a hot tea or coffee works better that cold water or milk. I also sometimes use fresh lemon or pickle to get my saliva to flow.
How's the lymphedema in your neck? That remains my biggest challenge. When my neck is swollen it makes my tongue swollen as well and reduces my saliva. Keeping the lymphedema under control seems to improve the moisture in my mouth.
Sounds to me like you are doing well and your healing is ahead of most.

I echo some of the other comments. You are doing great! I'm 20 weeks post radiation/chemo with all the usual stuff. No saliva so very dry mouth 24/7, can only eat very soft or liquid foods, lymphedema of my neck and very rough surface of my tongue. The Xylimelts definitely work for dry mouth and allow me to sleep through the night. One thing to share if I may, do not get your feeding tube removed until you are sure you can make up the calories by mouth. Mines been out about 4 weeks now and it is definitely more of a challenge keeping up my weight than when I had the tube. Keep up the good work sounds like you're ahead of schedule.

I don’t know what my treatment will affect, imma try to stay positive, I’m so tired of being sick, it has me nauseous just thinking bout what I have to put my body through, this is my 3rd type of cancer, head and neck, vulva, and now tongue I’m so tired and haven’t started treatment yet