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Post treatment questions BOT HPV 16 dx

topcat1164
Posts: 2
Joined: May 2013

Hi all

I just finished my last rad treatment on 4/29/2013 along with my 3 chemo (cisplatin) treatments as well. BOT HPV related cancer was diagnoses. My question is when to expect taste buds to come back as I cannot taste sweets, some sour foods but most foods taste like paste and bland. Sore throat is mostly gone away but now feels like something stuck in my throat. Little to no saliva at all and spit sometimes is like a very thick mucous that I cant even get out....I love the sights of foods but when I try them I get disappointed quickly since no taste or trouble getting down as they feel like they get stuck and wash it down with water. Can I expect this to continue for years? I want to travel in the fall but not if I cant eat since I want to do a cruise but afraid that this is permanent and will not want to eat ever again. Any comments or suggestions?

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

it is the best one on the internet.....and a good place to ask quesions even after treatment.

I finished rads last June, and finished all treatment last August.....and have learned that recovery is measured in weeks and months....I still can't taste sweets (but I give icecream a try every single week Laughing).  Actually, I still have taste fatigue where food loses taste after the first 8 to 10 bites....that's up from 1 or 2 bites in the beginning.  Saliva also comes back slowly.  I know I have more now than when I started, but still need water to help get food down.

You just finished treatment.....a month out isn't very long at all.  Give it time, and you'll start noticing the difference.....but since it's by degrees, it is slow.

p

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

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. :-)

MarineE5
Posts: 762
Joined: Dec 2005

Topcat,

Remember, we "Cook" for roughly 4-8 weeks after our treatments are done. So, you may be half way thru the Cooking Stage at the moment. I didn't start to taste anything until roughly week 5. Small steps at first in the taste department. I now taste many things, but not all. The foods should still be on the softer side, and easy to swallow just a little longer, then move up.

There may still be some swelling from the Radiation, possible Lymphedema going on as well. Things will change for you over the next several months. Keep your eye on that Cruise and enjoy yourself when you go. Work around any problems for now, revisit the foods that don't work now as they may in the future.

My Best to You and Everyone Here

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

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"

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Topcat1164,

When to expect taste buds to come back?

Maybe tomorrow, maybe never, but most likely somewhere inbetween.

Can I expect this to continue for years?

Maybe, but probably not.

Any comments or suggestions?

If you let your taste buds make the decisions, you are going to be stuck at home.  If I was going on a cruise at 7 months post I would belly up to the smoothie bar.  At 7 months and 1 day I would line up for the buffet.

During my totally wacked out, screwed up taste bud time there were things I really liked and could eat. You dear friend must use the super powers given to you by multiple rads and find your foods.  Try things constantly and bring lots of water.  There were times I would eat 1 bite of chicken, ½ a French fry and 3 peas (that is enough, I am full).

I spent months watching my wife or my boss eat normally as I enjoyed a smoothie.  Cancer has taken enough of my life I am not going to let it control me now.  I may be the person at the buffet with tons of sweet corn, steak or tomatoes (some of the foods I dig), but I would be there.

My rad onc said my taste buds may be gone forever, I had no idea what  she was talking about.  She also said she could kill the cancer, that I understood.  Don’t be miserable be happy and satisfied you have taken the steps to live for many more years.  Figure out what works for you and exploit them.

Matt

yensid683
Posts: 242
Joined: Apr 2012

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..."

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Time is the best remedy and cure you have....

Each of us are different..., but for me I started getting some taste and saliva back in a few months..., certainly enough to survive with and be comfortable.

ut it did take me nearly two years for sweet to return full time.

And also by then I had 100% taste and nearly 95% saliva back...

Hang in there..., try things frequently, if taste isn't there, set it back for a few weeks and try again.

Best,

John

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