#47338 10-06-2006 08:17 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | KristN, I also didn't have Erbitux but I did have 35 IMRT's. My taste went away after about 2 weeks and I was also left with a bad taste. Nothing in my mouth was pleasant. That will go away and you will be left almost tasteless which you will grow tired of because it will last way past your treatments. The thick saliva didn't bother me until almost the end and was replaced in about 2 weeks with almost no saliva or what they call dry mouth. During the thick stage I carried a cup and spit all the time. Now with dry mouth I carry a water bottle all the time. I am 6 weeks out of treatment and my taste is coming back and I also feel less dry. My rad doc confirmed that my mouth looked more moist than he expected last Monday. Now the nausea...I had the worst time with nausea starting in week 3 and lasting till almost 2 weeks after treatment. I didn't have a tube so I had to swallow water and "food" and meds. I kept telling my docs-I don't care about the pain, just get rid of my nausea!!! Everything kind of works against you. They tell you, you must swallow 48 ozs of water and 48 ozs of liquid food. So they give you pain meds which causes nausea and makes you constipated, which makes you nauseaed. They gave me nausea meds that listed as a side effect NAUSEA! So I tried to swallow through the pain but I was scared that I would bring it back up and cause more pain. You start to loose ground daily and before long you are in trouble. I had to get IV fluids 3 different times because I wasn't able to keep up. Each time I promised myself I wouldn't get to that IV point again but I wasn't able to keep up. That's why we all loose weight. Some much more than others. I only lost 30 pounds but I only weighed 160 to start. I lost 10 of those 30 pounds the week after treatment ended. But that's when it started to turn around. I stopped taking ALL meds and I also found Carnation Instant Breakfast VHC which has 560 cals in the same 8 ozs that you will become used to. It drastically cut down how much I had to swallow to increase my weight and I have never looked back. I have regained 15 pounds in 4 weeks and I spend far less time worrying about drinking.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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