How soon post treatment were you able to taste and eat?
Just wondering. Looking forward to eating again. I tried to keep eating as long as possible but mostly tube fed now because food is repulsive to me right now-no flavor or too salty.
I only have 5 more rads to go. I was able to eat a couple bites of pizza yesterday but all I could taste was just the teeniest hint of bread and tomatoes. Still drinking water and swallowing.
Comments
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I heard some people start
I heard some people start getting better not long after end of chemo, others take a much longer time.
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I Would Say
You are blessed to still be swallowing.
I understand food tasting badly different or no taste.
You have to literally chew and eat and force food through and keep mindfully thinking I have to get this much food in for my daily minimum.
I am not sure at what point in my rads that I could not swallow anymore but it was at least 3-4 months till I could swallow again.
Everything through feeding tube everything. Food, hydration, meds all of it.
Mine was throat cancer so it would definitely affect swallowing ability.
I have heard of folks on here taking up to a year or more to start swallowing and eating again but most much sooner and some really quickly.
I think it just depends on the strength rads are applied and to what are of the H&N
Maybe you won't lose your swallowing ability, I certainly hope so.
Take Care-God Bless-Russ0 -
5 weeks after my last
5 weeks after my last treatment I stopped using my PEG. At first I only drank boosts and fruit smoothies while trying different types of food, albeit with very little luck initially. It probably took another 3-4 weeks for me to consistently eat solid foods. Its now 13 weeks since I stopped using the tube and while I cant say I enjoy my meals I’m eating a wide variety of foods so I can keep my weight steady including hot dogs, hamburgers, salads, steaks etc. My throat is still constricted and I have very little saliva with maybe 50% of my taste. But I’m able to go to a restaurant and fake a normal life, so that's a start. For me the juicier the better. And I’m enjoying coffee and stout beers again.....?
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ozy,
Wow - if you're still able to eat a piece of pizza at this point, I predict a generally very fast recovery for you, at least as far as being able to ingest food by mouth!
For me, it was at least 4 months, after finishing treatment, that something like pizza wasn't just an impossible dream. All I could eat were smoothies, and eggs for weeks.
I realize eating food that has an "off" taste is not easy, but I'd recommend continuing to eat as much as possible, and not rely on the feeding tube unless you find that necessary. I've heard the esophagus can "forget" how to move food, if you don't keep it active!
Taste is a little different for everyone. I'm 2 years out of treatment, and my taste has come back enough that my girlfriend is telling me to watch my weight!
Overall, you seem to be doing extraordinarily well, so I would predict that 3-4 months after treatment, you should be well on your way back to a relative normal!
MG
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Oh MG yeah I remember reading
Oh MG yeah I remember reading that that the esophagus forgets how to move food along if you don't eat. When I get home today maybe I'll choke down some eggs. If I eat some tiny little thing every other day or so I should be fine, no?
Only 4 more treatments after today!
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Taste returning was a slooooow process
It wasn't like a switch being flipped and everything was good again. It took months. Even a year or 2 later I found that spaghetti sauce still tasted a bit off. But either that particular taste is back 100% now or I've become accustomed to the new flavor. It's hard to say. Throughout my treatments, and to my rad oncologist's amazement, I enjoyed 4 eggs with cheddar cheese and a big pile of bacon for breakfast every morning. I couldn't eat anything, though. Mostly it was carbs that tadsted bad. So I ended up on an unintentional Atkins diet. But around my 4th week I found myself repulsed by water, of all things. So much so that I passed out from dehydration while they were attempting to draw some blood before my radiation treatment on Friday morning. From that point on I had to work very hard and force myself to get the proper amount of hydration everyday.
It's best not to get to anxious about tastes returning to normal. Just try everyting and don't get frustrated if some tastes lag way behind. They'll all likely come back in time. But as I eluded to, the more time that goes by the harder it might be to remember how things tasted pre-treatments and you just get used to the new tastes. You msy find your taste back 100% within a few weeks after finishing treatments. Everyone seeems to be different in that regard.
Best of luck to you!
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Hopefully You Haveozymandible said:Oh MG yeah I remember reading
Oh MG yeah I remember reading that that the esophagus forgets how to move food along if you don't eat. When I get home today maybe I'll choke down some eggs. If I eat some tiny little thing every other day or so I should be fine, no?
Only 4 more treatments after today!
A speech therapist assigned to you that has given you swallowing exercises and other exercises such as mouth opening exercises to avoid things like Trismus--Speech therapists take care of all issues H&N such as speech, swallowing, swallowing tests etc. I think the title Speech Therapist just doesn't sound all-encompassing to cover their duties.
Trismus is an uncontrolled inability to open the mouth or jaw. Trismus interferes with many daily activities—chewing, swallowing, talking, brushing teeth, even breathing. The condition may be caused by dental problems, cancer and cancer treatment, surgery, trauma, or other factors.
This is where it is hard to open your mouth and I know of several on here that have struggled with it and also have a friend that had H&N treatment and he had a hard time with it afterward struggling to get his mouth opening bigger using the wooden popsicle sticks and adding one to the thickness as he could to open his mouth more, sort of a form of therapy to get his mouth opening back and jaw function working better. I have a little bit of trismus I dealt with but some are really troubled with it. The Radiation causes this.
I did the swallowing exercises for the months I could not swallow any food and while I was totally dependent on the feeding tube as I didn't want to have to relearn to swallow. This was one of the complete surprises to me as far as forgetting how to swallow. I just thought it was a natural function that would not change.
Swallowing-Use it or Lose it-
https://www.youtube.com/watch?v=Qaip9BMnO0cSwallowing exercise video-There are many more to choose from-
https://www.youtube.com/watch?v=aZTXHwmOK6Q
Keep it moving forward-Take Care-God Bless-Russ
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I Think My
Taste is about where it is going to be. January 2013 was the start of my treatment. I can taste the flavors of everything but not as strong as pre-treatment and mostly pretty weak in strength but I am Blessed to have some taste. You other folks on here may have noticed also that sometimes when you start eating something tastes really great and just like it used to for the first couple of bites but then quickly fades. There are 2 people on our local Barshinger Cancer Center H&N support group that have virtually no taste and are well out of treatment but still no taste return. It sure makes it difficult to eat and the one fella has a burning sensation in his mouth with certain foods. The other fella is an older gentleman that made wine for years but can no longer drink it due to his treatment so he still enjoys making it and bottles it and gives it away. He also can't stand water and drinks lots of milk.
Take Care-God Bless-Russ
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Almost 6years out.
Yes, it will be a slow and unusual road in recovery. I still have a partial taste loss and some weakness to swallow foods. I found changing from water to drinking Aloe vera juice very helpful as it goes down much smoother. A Blender with eggs, greens, blueberries, banana, etc. also made an easier way to consume good foods easily. It is also a good healing remedy. I also underwent Hyperbaric treatments which helped blood flow return faster and stronger to damaged tissue. Good luck to all with recovery.
PS. I raised my blood Vitamin D3 level to 70+ which has been found to greatly strengthen the immune system.
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ozy,
Trust me, I can absolutely remember how challenging it was to eat food, when taste is compromised. It's impossible to describe to someone, who hasn't experienced it - but if you can't taste your food, you don't want to swallow it. I suspect that's a defense mechanism, to keep people from eating spoiled or rotten food.
The taste of eggs, over easy (for whatever reason) came back relatively early for me. I'm not a swallowing specialist, but I certainly suspect that if you eat a little bit, a couple times a day - your esophagus should be OK.
You sound like a really nice person - and ONLY FOUR SESSIONS LEFT - CONGRATULATIONS!!!
It is SUCH a good feeling to "ring that bell" ... or whatever the tradition is, in your treatment center. It's a sign you'll soon be on your way back to a more normal LIFE!!
MG
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I keep daydreaming about food
I keep daydreaming about food I want to make. I'm watching all kinds of cooking tutorials on YouTube. So looking forward to bacon, eggs, hash browns and toast with homemade jam!
I always ask.people(family and friends)what they had for dinner. I'm living vicariously through their tastebuds!
Even so, I am very thankful that I have a tube and don't have to do everything by mouth. I would probably be starving. Literally.
I still make little treats for my daughter even though she's a really good cook and capable of feeding herself quite well.
I enjoy spoiling the people I love. I miss having the energy to do that but looking forward to when it comes back.
Might go all out for Thanksgiving and Christmas if I come out good on the other side quick enough.
God is so good you guys. So glad for every new day.even with all the challenges that arise.
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ozy,
Well, I would venture a guess that you should be pretty much back to a more normal taste situation by the time Thanksgiving and Christmas roll around. But, we are all different in our reaction to treatment - so I'm not making any promises. (I've done that in the past ... and I was a little optimistic for someone else .. LOL)
The energy thing was an extraordinarily tough challenge for me, so I can definitely relate. All I can tell you is that I regained much of my energy, and I also realized that I didn't need to rush through my life ... the way I was.
Spoil the people in your life as much as you can - and when you get your energy back - spoil them even more!!
MG
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Daydreaming
I DID THE SAME THING!!!! In fact, when I had energy I looked up different recipes online and printed them out ... I ended up with almost 200 pages of recipes and cooking instructions!!! I made a "project" of three hole punchining them and organizsing them into binders. LOL I still have them and even made a facebook page about the called The Chow Hound. (Feel free to Like. it is free)
I was able to eat small bites fairly soon after treatment. I got done 2-27-21. But my tongue got tired VERY quickly. I did not start really getting taste back until late April/early May. In March and April I was making breakfast for my wife and me and remember commenting on how I could not even taste the bacon or sausage. I was using that recipe book to make bog old calorie-heavy dinners for us knowing that I could only eat small portions, if that, and probably not taste them. I kept asking Pat how they tasted and we kept a log of each meal I made. She would tell me if "too hot", "too salty", etc.
I only recently noticed I could lick the pudding off the lid of the cup ..like in the past week or so. My cancer was tonsil and I had TORS plus 7 chemos and 33 radiations. I still cannot swallow perfectly.... I can chew and get Triscuits down now, and even trail mix, but small bits get lodged and make me cough .. with the fake flu going on everyone moves away fromme worried that I might be carrying the plague, but in reality it is only a stuck peanut! LOL
By early and mid May I was able to taste most things .. so in my case, about 2, 2.5 months post treatment. But MAN do I remember how HARD it was to eat ... by hard I mean how much EFFORT I had to put in to eat. Because of the tired and sore tongue it was hard to move the food around which made it thicker and harder to swallow..I was exhausted after eeven a small meal. But I kept at it ..I love food too much to let that go! I already had to quit drinking and smoking weed due to the cancer, I was NOT going to let it take food away from me too! (HPV+ reacts to alcohol and smoke)
Here I am 4.5 months post tx and I still have some numbness in the tonsil area and not making 100% of my salive (which accounts for some of the difficulties in swallowing), but for the most part I am eating pretty normally. Had some chicken wings this past weekend and actually was able to bite into and consume some burgers over the 4th. (So long as they had plenty of moisture like ketchup, pickles, lettuce, tomato, etc.)
It's a road ..and not a short nor fun one, but I have found entertainment value in *realizing* the things I can do again ... like the pudding cup lid. Where before I was noticing the things I could no longer do, now I get to enjoy the rewards of all the labors and difficulties..anbd you will, too.
Keep going on dreaming up those dishes and enjoy maing them and when you can, eating them.
Don AKA Beagledad
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Needless to say
Everyone is different. Drinking strawberry Ensure, then 7-Up/Sprite, then pancakes w/gobs of butter & syrup, then 4-months out at the company golf tourney a brat with relish, onion and mustard let me know about the spicy food registering. Hence, Roadhouse Chili became my favorite food. Trial and error, and patience, are givens.
That said, consider yourself lucky. Next month will mark the 2-year anniversary since I became Feeding-tube dependent and never to eat or drink again, supposedly because of the Rad damage scar tissue growth involving my esophagus opening. And I'm over 12 years out, now. Just be thankful you can eat and drink the traditional way.
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Oh yes, I am extremely
Oh yes, I am extremely thankful I can still eat normally, you betcha.
I'm grateful for waking up every day.
Even a bad day is great!
Thanks you guys.
Keep em coming so encouraging.
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I use gravy, ranch dressing,
I use gravy, ranch dressing, mayonnaise, hollandaise, sour cream to dip stuff in-well not right now but a few weeks ago. Couple months ago was dipping pizza into garlic butter. Before I had surgery I was in a lot of pain so used sauces to help me get food down and up calories for future deficits.
Not eating much of anything due to lack of taste.
MG, I definitely think what you said is correct in it being a defense mech so we don't eat spoiled or rotten food.
I think of that every time I am repulsed by flavorless food.
What are everyone's favorite foods? What are you happy to be eating again, looking forward to eating or not able to eat anymore due to changed palate?
Let's talk about food! Food, food, food, food, food! FOOD!
?
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Be gratefulLogan51 said:Needless to say
Everyone is different. Drinking strawberry Ensure, then 7-Up/Sprite, then pancakes w/gobs of butter & syrup, then 4-months out at the company golf tourney a brat with relish, onion and mustard let me know about the spicy food registering. Hence, Roadhouse Chili became my favorite food. Trial and error, and patience, are givens.
That said, consider yourself lucky. Next month will mark the 2-year anniversary since I became Feeding-tube dependent and never to eat or drink again, supposedly because of the Rad damage scar tissue growth involving my esophagus opening. And I'm over 12 years out, now. Just be thankful you can eat and drink the traditional way.
Yes, to echo Logan be grateful you can Eat at all. Crystal here, who had to stop trying to eat on March 23, 2017. That was it, for me. I have to be grateful/ thankful/ jump for effing joy that they let me still have my Liquids.
However, that too may be yanked away from me, because as long as I continue with liquids, I am literally drowning my lungs. This pneumonia #6 is STILL Active, and I'm collecting another darn Culture to be assessed. If its infection, they are re admitting me to the hospital for more intravenous antibiotics and another PICC line.
Yes, so many here can Eat. Its difficult for those of us who Cannot. I literally have No Ability to achieve the 3 Phases of The Swallow. Treatments nor surgeries did this ---- Oh no, my very large Primary tumor did it. My G tube was placed because I was going into Shock in the Emergency dept from literal Starvation. My actual Blood Volume dropped, as a result of starvation. Its a long story but very dramatic...
But yes, dear Logan, we Go On. We keep moving forward, wherever the heck it takes us ( personally, I can already ' see' my future). Because there is no other option but to get up in the morning, and try again.
Hungry, hungry, I'm always hungry. And now 71.0 pounds. Its all I can do, right now.
I dress up pretty my when I go out. I enjoy pretty feminine clothes, pretty shoes., high heels---- and carrying my feeding backpack. That's the one accessory I have no choice about! Without it, I would likely soon pass out.
Logan, and anyone else out there who cannot eat " No matter how you feel, Get Up, Dress Up, Show Up, and never give up."
Broken Crayons Still Color.
LitlCJdoll ??
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ozy,
A couple days ago, my girlfriend left me to fend for myself. So, I poured half a jar of Mrs. Renfro's Habanero sauce on some snack mix, and ate it with a spoon.
Spicy food really registered - it tasted GOOD!
You're right on the sauce. I order Eggs Benedict at my local restaurant ... and love the Hollandaise.
You'll be so happy, when it starts coming back - just don't let yourself get frustrated. It takes a little time!
MG
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We use lots of hollandaisemotorcycleguy said:ozy,
A couple days ago, my girlfriend left me to fend for myself. So, I poured half a jar of Mrs. Renfro's Habanero sauce on some snack mix, and ate it with a spoon.
Spicy food really registered - it tasted GOOD!
You're right on the sauce. I order Eggs Benedict at my local restaurant ... and love the Hollandaise.
You'll be so happy, when it starts coming back - just don't let yourself get frustrated. It takes a little time!
MG
We use lots of hollandaise for breakfast, casseroles and eggs benedict so I bought a bulk container of Knorr mix at Smart and Final.
Back to the defense mech part of tasting here, when my mouth was raging with cancer I couldn't eat it because it tasted like sugar! All I could taste was the sugar in it. I got so mad I almost threw out the rest of the mix! I'm glad I didn't though because it tasted close to normal last time I ate it.
Weird. Maybe my cancer made it taste like sugar. Maybe this dang cancer is gone! ?
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ozy,
The hard cold fact is that Cancer treatment takes a heck of a toll, on whatever part of the body is radiated.
But, if it knocks out Cancer, and gives one several more years, it's all worth it, in the long run.
I'm two years out, and I ate a small piece of barbeued beef at a party - that tasted EXCELLENT! (It was a small piece. Th odd thing about me and meat in general, is that the taste still "fades" a few bites in. But, it's slowly still getting better.
It will be interesting to hear how it all comes back for you!
MG
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