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I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy operation to confirm it was cancer. The plan of action is 7 chemo treatments and 35 radiation daily treatments. At this point not quite half way through. The radiation is the worst. Saliva glands are drying, nothing tastes good and normal smells are really unpleasant. I have lost 23 pounds but doctors do not want to put in a feeding tube. The reasoning is because you will give up trying to swallow. I guess if you don't swallow eventually the ability to will stop. I wanted to give up completely and let God's will take over. My husband and family would not allow me to make that decision. I hate to say it out loud but I pray for a miracle or and end to it all. Just starting on an anti-depressant so hopefully in 3 weeks when it kicks in my mindset will be better.
Replies to "I have HPV16 tongue cancer. I was diagnosed in September 2022. I finally had a biopsy..."
"You will give up trying to swallow" This advice is coming from an actual licensed medical doctor in the First World? I don't see starving to death as a better alternative than the chance to forget a primary life function. Even the least in medical school are still addressed as Doctor I suppose. My advice, change doctors and find a nutritionist.
Do not give up! I had the same treatment regimen but I had a feeding peg. I also had a very persistent nutritionist that hounded me daily!
Yes, the throat can forget how to swallow but water throughout the day will give the throat movement!
I tried to eat by mouth and wasn’t able due to; the smell of all food made me vomit, throat was closing up, no hunger etc.
I was able to get oatmeal down after approximately 7 months and lived on that for about two years!
Now after 6.5 years and 3 Esophageal Dilations I still have a very hard time eating food. I found that country gravy along with lots of water helps get the food down.
Fight the good fight and win!
MOJO
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Hang in there. There were days I begged and pleaded with the doctors to stop the radiation. I have a lot of fillings and the scatter radiation was causing severe burns on the side and underside of my tongue. I wanted to rip out all my teeth. With only being half way through things unfortunately aren’t going to get better before they get worse. Most of us were likely in your place. I BEGGED to at least take a break from treatments. The doctors and nurses were cheerleaders. I had to trust them. I had a PEG tube placed before I started treatments hoping I wouldn’t need it. Well I needed it, but the darn thing caused me nothing but trouble. I couldn’t keep any liquid down. No even small portions. CTs showed things were in place, but as soon as I’d get a few mL in I’d start throwing up. This continued through my whole treatment. Even hospitalized a couple times because my blood counts and potassium and magnesium became a concern. Blood got slightly better, and I begged to go home. I could feel like crap at home. I made it through my chemo and radiation and lost 80 pounds. 195 down to 115. I had to be in grad school at that weight. Since I still couldn’t eat with it without the tube the doc put me on a TPN plan. Total parenteral nutrition provides all your nutrition with any added requirements (vitamins/minerals, etc.) through the same port used for chemo. That was tough. You wore this bag on nutrition attached to a pump that was on for 20 hours per day to start. Then down to 18 hours a few weeks later. And finally 16 hours for several weeks. While I may have gained a pound or two, the blood work looked more stable and I was finally able to eat a few bites of soup and some ice cream.
Taste has come back to a respectable level.
Hang in there. We’ve been where you are. Your type of cancer id very treatable. Some of the highest success rates. It just sucks to go through it. Give yourself 2+ years before I say you can see a change big enough to say there is measurable improvement. Although everyone is different. Let’s get you through your treatments. You can do it. It will suck. You’ll want to quit. But we’re here for you. On your last day of treatments wear a Wonder Woman tshirt and know you beat the beast. Ring that bell, sister! You will have deserved it.