9 days after end of treatment, mouth and throat questions

I had some white pasty slime on my tongue that they thought might be thrush....which they said is quite common for us. But it turned out to just be the skin on the surface of my tongue "shedding" for lack of a better word. Evidently when you switch from a normal pre cancer diet of rough and crunchy foods to soft foods the skin on your tongue sheds. Anyway it took a couple weeks to clear. But it did. When the new skin appeared everything I ate stung. All better now except for anything carbonated. Weird.

Hi @robolobo I had first read that title as "nine months" rather than nine days and I thought you certainly should be doing a lot better by now. Nine days, not so much. This recovery has so many ups and downs. Two steps forward and one one step back seems to be the pattern. Just when you feel things are on the mend, something else crops up. And the worry! We always have the big worry that Mr. C is back or something has gone wrong or the treatments failed. Odds are you are just fine and this is normal recovery.
I use the rule that if something new crops up, don't get alarmed for at least three weeks. Mouth sores, spots, hard white knobs, nerve pains, swallow issues just to name a few. These are all common with recovery and can be expected realistically for two years or more.
Yes, everything is par for the course. I am very happy for you getting past the trauma of the initial diagnosis and all of the treatments, coming out on the recovery side likely with a whole new outlook on life. Next year will be so much better for you and your wife. Happy Thanksgiving.

Yes there is a huge difference between 9 days and 9 months. I am 18 months out and back to feeling good. In 9 months you will see a lot of progress. For me the 2-3 months following my last radiation treatment were tough. I thought I am out and now I will heal quickly. I was wrong. I think it is normal to take several months to heal and begin to feel good.
So 18 months out I am not the same,but in many ways better. I eat better, get more exercise, kept excess weight off and enjoy life. It is a gift. Does food taste the same? No but not a huge deal. You sound like a positive person...get well and let us know how you are progressing.

@robolobo, it's now 21 days after treatment (if I did the math right). Any update? How are you doing now?

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….

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.

Lymphedema remains my biggest challenge, too. When it flares my mouth is drier and tongue is swollen. I did the massage but it only worked to a point. My Mayo surgeon prescribed a lymphedema pump machine made by Tactile Medical. It uses a mask and vest that uses light air pressure to massage your face, neck, and torso. I use it once a day, sometimes twice if I need to with each treatment taking about 30 minutes. It works great and has made all the difference for me. I still do some self massage as well. I also wear the band and foam chip bag at night. My mouth does not dry out at night if I wear the band. Hope this helps.

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