Finished my 33 rad and 2 chemo sessions 3-1/2 weeks ago. Generally it went well. The throat started to hurt really badly in the second last week of radiation, and intensified until 2 weeks after completion of radiation. I had to use hydromorphone to keep the pain down. Also, the second chemo caused much more nausea and vomiting. As a result, I lost about 20 lbs and have not been able to regain it since.

The throat stopped hurting 2 weeks after the completion of radiation. The only major outstanding problem is extreme dryness in the mouth when I sleep. This started three weeks before the completion of the radiation. I found that I had to sleep sitting up with pillows on my back. This is still occurring. I attempted to sleep lying down the last couple of nights but within a hour, my throat would be parched, so I had to switch back to the sitting position. The odd thing is, during the day, it is the opposite. I have too much saliva and it is still quite thick, so when I speak, I have to spit out the excess first, otherwise it will really slur my words. My speech is not clear in any event because I find the flap is still quite thick. It has not shrunk the 1/3 the onc surgeon estimated, may be 1/5. So it is still pressing again my teeth and makes brushing my lower teeth challenging, altough not impossible.

So any tips on the extreme dry mouth only when I sleep? By the way, I had to sleep sitting up after the surgery but for a different reason, excessive phlegm. So I am no stranger to having to sleep sitting up. I am able to get my sleep, albeit at lower quality.

Joseph

Joseph, glad to see your update. The extra saliva will very soon disappear and the dry mouth will be with you 24/7. Rinsing with a mixture of 16 oz warm water with 2 tsp baking soda and 2 tsp salt will help neutralize your mouth and it will help it to heal. Repeat rinsing your mouth many times a day, I would suggest 6 times daily.

Try sleeping with a humidifier by your bed to add moisture into the air. Also Biotene makes several dry mouth products. Try their gel which will coat your mouth. Some members have use olive oil to coat their mouths, I never tried that myself.

I get conflicted amounts for the rinse. I was told 1 teaspoon salt, one teaspoon soda in 1 Quart. ? Is it just a matter of choice?

Sorry for any confusion! As far as I can remember, my nurses told me the amounts I posted above. You can check with your treatment facility and see what they recommend you use.

Look the dry mouth is very very common and it's the worst soon after Tx but it will get better in time and each of us respond differently. I didn't notice much improvement until my 4th month post Tx (PT), then more improvemnent at 5 months, the biggest at 14 months and then a tad more at 24 months so you see it takes a while for your glands to repair themselves as much as they will. I "think" I'm back to 90% of what I was but that's really impossible to determine becuase even by now you have probably don't remember what 100% was like. I had a bottle of water in every room of my house. I carried a bottle with me EVERYWHERE. I carried spare bottles in the back seat of every car I might drive because I can't tell you how many bottles I left in Home Depot and Walgreens and Publics, etc. The first time I remembered before I got out of HD's parking lot and I thought I could make it home 5 miles away but I had to stop at a convenience store less than 2 miles down the road. Some on this site say the kept a spray bottle on their nightstand to help them get thru the night. I tried all the Biotene products and they were OK but nothing worked like taking a sip of good ole water. After a coupe of years I did find that chewing Biotene gum helps so I chew it all day long and Walmart is the cheapest place to buy it I've found.

Re the weight, I was consuming appx 3000 cals every day and I still didn't gain any weight until sometime in my 2nd year PT so that told me how much my body was working to repair the damage done by this horrific Tx. No problem to gain lbs today so enjoy the planned weight control while you can. lol

You are out of that tunnel and on the road to recovery but it can take every bit of 2 years so please try and be patient. None of us were but maybe you can be the first!

David & Christine,

Thanks very much for the info about the dry mouth and weight. I feel a whole lot better knowing how long it will take for things to get back to normal.

In my case, the funny part is that during the day, I don't have a dry mouth. I actually have too much saliva, although it is thicker then before, of course. The baking soda rinse will take care of the thickness. I actually have to carry a plastic disposable cup with me when I go out to spit into. I guess I could swallow the excess but for some reason, and it is probably psychological, or because of the thickness of the saliva, I don't. So you see, everyone is different.

My dry mouth only happens at night when I sleep lying down. I found that if I sleep sitting up, the mouth stays moist. I don't understand why. So I guess I will continue to do that until the dryness improves.

I am still on the G-tube with pureed food and meal replacement. The throat only stopped hurting severely 1-1/2 weeks ago so I want to wait until 4 weeks post Tx before feeding through the mouth. It would be the first time since the surgery. After the surgery I had a couple of episodes of infection in the mouth so I was told not to feed through the mouth. I think it should be fine to feed 4 weeks post Rx, which will be 10 days from now.

If it takes a year to regain the weight, that makes me feel more relieved. I have actually gained a couple of pounds post Tx. I am sticking to all natural and organic food as much as possible and only on fish, vegetables and grains. I just started to introduce organic chicken breast a couple of days ago, I think that's when I started gaining.

Joseph