Post treatment questions BOT HPV 16 dx

Welcome! I had SCC HPV+ in my left tonsil and soft palate. I ended up in pretty much the same shape you are, from the sound of it. I also had food just get stuck in the back of my throat. My doctor said my epiglottis was enflamed from the radiation.

I'm almost a year past treatments at this point. Here's how it's improved for me, although of course you may experience something different:

My swallowing is MUCH better. I still hit a bad stretch every so often, and I've had a couple colds that included sore throats, which were pretty crappy. It never gets so bad that I can't swallow--it's just a matter of how much water I need to drink to get the food down. I can eat pretty much anything I want now (except spicy food, which I didn't eat before treatments so I have no taste/tolerance for it). Really dry bread or chicken can feel like it sticks, but a drink of water gets it right down.

Taste and saliva are also much improved, although not back to 100%. I'd say saliva is at around 50%, and taste is around 75% but short lived. I can taste almost anything and sweet tastes have started working again (for a while they were missing so anything tart was through the roof). Sometimes the taste only lasts for 5-6 bites, though, and then seems to kind of die down. Drinking lots of water helps, and I find that dishes or combinations with a wide variety of flavors seems to help too. For example, sweet and sour pork with fried rice or rice with soy sauce is a good combo because I go back and forth from sweet to salty. That seems to keep the taste buds "alert."

It does get better, and yes, it feels slow. Try not to focus on day-to-day or even week-to-week differences because you'll get frustrated. We went through treatments so we would have many more years of life... so sit back, relax, and give yourself some time. :-)

Don't be jealous

Hi Topcat,

Congrats on finishing treatment and welcome to the forum.

Like you, I'm a month out of treatment. I'm still suffering from dry mouth and some other side effects from the treatment but overall, I'm getting better. I'm not sure why but I didn't lose my taste buds. 30 rads and 6 chemos and other than a few things being a bit "off", I can taste everything just fine (even ice cream!... don't be jealous P ~lol~) Unfortunately, my mouth is still healing so certain things hurt to eat but that's getting better too.

I hear you about a cruise. It's a feast 24/7! Most folks regain their taste buds a little at a time but there's no way to predict when your body will offer you a glimpse of flavor. Hang in there and keep trying!

Positive thoughts and prayers

"T"

and finished treatments July 5 of last year and I too wondered if I would ever be able to taste anything, whether I'd be able to swallow anything but liquids.  If I'd ever lose the thick mucus that seemed more like masonary cement than saliva and snot.   There were times that I was so discouraged that I actually thought it would have been better if I'd never said anything about my sore throat and not sought treatment.

I started being able to taste about 4 weeks after the end of rads, I'd been using a salt water and baking soda rinse and never tasted anything until that late July day and my first rinse of the day had a salty taste! I was so happy.  Mucus started thinning out in the next couple of months, it seems closer to normal now, but still has some way to go.

I slowly (and I mean SLOWLY) started to be able to swallow more foods, mostly soft and very wet.  I just about lived on Campbells Chicken Noodle soup and cheese omelets. I couldn't stand the cold from milk shakes or ice cream (still have trouble with that).  By mid September I found that I could swallow more than just a couple of noodles in a spoon of broth.

I took a chance the next day and tried a $1 burger from Burger King and found that I was able to eat it.  Lots of water to accompany it and I had to put it in the microwave twice as I ate it so slowly, but I ate it!

It was the start of my taste recovering and perfecting the right mix of water sip to the size of the bite, but now I can eat just about anything.  Crumbly dry foods are tough, crisp cookies, some chips like Doritos and Fritos, Pringles etc are difficult, doable, but difficult.  Sticky foods like mashed potatoes or stuffing are not easy to eat, but burgers, fries, steak, chops, spagetti, sausage, toast (especially Italian bread) work all so well.  Surprising me to no end, I can eat just about any raw fruit or vegetable without extra water!

Hang in there, it will seem like a long time, but you'll see improvements, slow, steady and sure.  A good attitude is important.

As the song says, "there can be miracles, when you believe..."