How soon post treatment were you able to taste and eat?

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.....?

ozymandible 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=Qaip9BMnO0c

Swallowing 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

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.

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

Logan51 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 ??