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Isabelle49

My tongue is dead!!!

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After the first round of chemo, I have a non working tongue. Everything tastes like cardboard and is nauseating.  I can only tolerate very tiny amounts of food, in spite of the phenergan. No vomiting though, thanks goodness. First cup of coffee today in 4 days, tastes like warm air over my tongue and this coffee is made from very dark espresso beans. Any suggestions on how to jump start my taste buds so I can eat again!!! Thanks and Blessings to all

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Taste still not working. Eating very small amounts a few times a day. I have a very strong gag reflex and that is a problem with certain textures and tastes. Difficult tasting food, kind of like having whole mouth dead from Novocain.

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Isabelle,

I had the same trouble during my chemotherapy. My wife made me homemade mint chocolate ice cream and crushed Oreo cookies in the batter.  It was my breakfast, lunch and dinner and the only thing I could taste. That is why I suggested peppermint.

Stay the course.

Tom 

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Oh Tom that sounds amazing. Had my husband pick up a bag of the small dark chocolate York peppermint patties. Those did not lose their flavor. Also got some mandarin wedged in cups, but kind of sweet. Think I will go see what is fresh and I can peel. I could do without all the sickly sweet sugar that shouldn’t be there. Tonight won’t be the healthiest of dinners, but packed with calories: Burger King Big Fish , fries and Shake. It’s been more than a year since I had any fast food, and thought what the heck might as well try.

Tom when you mentioned the peppermint extract, is it the kind that is in an alcohol base and not a sugar base. I have the alcohol base kind. I think that would surely shock the tongue.  

Oh, I must mention too that the doc gave me 0,5 mg Xanax for anxiety/sleep. I’ve only taken it a night for sleep. I have found that I seem to wake up sort of hung over and not wanting to eat and grouchy. So, I took a Xanax earlier today, about 11 and have eaten more and obsessed less about how bad what I am eating tastes. I think Xanax at night for me is a no go. As long as I am breathing ok, no problems sleeping and since I got rid of 9 pounds of fluid last week with lasix I am breathing as good as I as before the bronchoscopy. With the next round of chemo I will be doing some brain picking to make sure I don’t get fluid overloaded again. That was horrible. I couldn’t walk, had to be in a wheelchair. Never again!!! Thanks much. Blessings.

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Isabelle,

During my chemo, I lost so much interest in food my wife (a dietician) and doctor really didn't care what I ate, just that I consumed lots of calories.  Chemo kills all kinds of cells and the body requires energy to replace the good ones.  

I have several chronic pain problems, and my GP prescribed Xanax to help me relax at bedtime so hopefully I can sleep. My nightly dose of 0.5mg usually works.  Sometimes I need to increase it to 1mg and I've been taking it for years.

I never had a fluid retention problem with chemo so I don't have experience with Lasix. But I hope you keep the fluid off.

Stay the course.

Tom

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Thanks so much Tom. Oh, Fast Food, Burger King Big Fish was pretty tasty. But I must leave the salt shaker and ketchup along, they are just nasty. BTW, I’m not really a fast food eater - it’s been a long long time. Blessings.

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Eating better this week. Food tastes better. Tongue doesn’t feel as strange as it did for the first two weeks. Plan a trip to a Hispanic market tomorrow (I’m half Cuban) going to get some Cuban Crackers - not sure why didn’t think of them sooner. These are thick crackers, maybe about 1/4 inch thick, no salt and no sugar - sounds bland I know, but really good dunked in whatever you like. I eat them with philadelphia cream cheese and guava paste. I’m pretty sure I could chow down on these anytime. Guava paste is sweet, but not sickly sweet. Looking forward to finding other goodies that might make this next go round better.   Also planning to make Flan this weekend, even though it is a dessert food, I think it is pretty good nutrition whole eggs, and two kinds of milk and sugar.  Blessings to all.                                                                                                                                                

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This food thing really sucks big time!!! Got down some Stauffers Mac and cheese tonight, about a serving. This morning I did find lightly toasted bread with cream cheese and strawberry preserves to be pretty good. I feel like I need a big chunk of chocolate, some really good stuff, like Ghirardelli’s or Dove would do. Weight today was down to 115 from baseline of 117/118. Having to really watch it because I can drop weight just thinking about it. Always have been this way.  Oh, I did discover that if I rinsed my mouth with minty mouthwash before eating it did help with the flavor.  Tom, I did lick some peppermint extract mixed with water from a spoon the other day, but the brand I had  was with a high alcohol content. It did help sort of reboot my tongue for a meal.  Blessings to all.

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Yes, you got it right- the food thing does suck. Totally.  You could try some of those lower sugar protein drinks- they are good for 200+ calories.  This is all about perseverance.  Pace yourself and this part will soon be behind you. Keep eating!  

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I’ve been researching the protein drinks and it seems they all have an artificial sweetener additive. I can taste that stuff before I even taste it. I find the sickly sweetness to be revolting even before I had chemo.  May have to make my own concoctions using instant breakfast, adding powdered milk to up the protein. Will have to work on it.  Dinner tonight was pretty goos: lightly toasted bread with cream cheese (pretty thick) and strawberry preserves.  Will have an ice cream shake with added whey protein as a dessert a little later.

Today was craving avocados sliced with a little olive oil and lemon juice or balsamic vinegar and tomatoes and cucumber. Crazy that this is stuff I craved when I was pregnant many moons ago. Even thought of asparagus out of a can with balsamic vinegar. The thought gets my salivary glands going something that has been rare for the past week. Couldn’t find a ripe avocado they were all hard as a rock!!! Will try again tomorrow. Blessings to all

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Oh I am so so happy to find this thread.  It took a little searching but here I am.  I have been fighting even water.  As soon as it hit the back of my tongue I got creeped out.  The nurse said if I can't get 64oz down every day they are going to do it for me.  I used my Vitamix and crushed ice and put pink lemonade crystal lite over it to spoon out.  I finally got my water in that way.  Popsicles and chocolate covered ice cream bars seem good right now also.  It has been 10 days and things are a little better, but I'm following this closely.  Thanks to all of you for posting! 

My husband is at store now buying fresh strawberries and blueberries to infuse my crushed ice to see if I can stand it that way.  Just spooning it out gives me something to do and gets that water in.  I'll report back as to whether it was any good.

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Terri, I do hope it gets betters for you. For me, the 9th day after chemo started to get better. There were still some foods I hesitated to retry and they can just stay in the background. Day’s 7 and 8 were made just a little better with a Scope mouthwash rinse before eating anything. I’m very much into Instant Breakfast mixed with whole milk  with some powdered milk to increase the protein. I have that every morning. Evenings is usually a shake made with ice cream and milk and the powdered milk added. For a snack Blue Bell ice cream sandwiches are good. Water before the 7th day is revolting.  Oh Peppermint really does help clear the cobwebs out of my mouth and make it bearable. Blessings.

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Thank you for your reply.  I am now able to get flavored water down fine, and have found that Dove Bars make me happy.  When I'm not eating well, he hands me an Ensure.  I just weigh every morning to make sure my weight stays virtually the same.  

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