6 Months After Treatment/Tonsil and Lymph Node

Hi Joanie

CONGRATS on your good check-up. YIPPEE.....

Don't give up on your taste buds just yet.....I had improvement all the way past the one year mark, and I hope that you will have the same.

At 6 months post, I was still 100% PEG-feeding, with forced swallowing done every day to keep the muscles working.

I would say give it another 6 months !!

Joanie,

I was told the same thing by my rad onc, “maybe gone forever”.  I was just happy to be rid of the beast and was willing to live with or without taste buds.  I was 90% on smoothies for 7 months, no taste, but mainly because I did not like the feel of food.  At 7 months while attempting a turkey sandwich everything  had instantly (INSTANTLY) changed.  The feel annoyance disappeared and the taste was starting.

Now at 15 months I eat everything I want and my taste is improving a little at a time with ice-cream on the bottom and a good steak at the top.

Whatever your taste predicament, find a way to be happy and satisfied, you can’t fight what will be.  It is easy for me to say that now, but at 6 months and 29 days I was packing around an igloo cooler full of water  and protein drinks.  I watched my wife eat a lot of hamburgers while I sipped away.

We each follow a different time table and quality of taste bud recovery, I am hoping your path will ultimately satisfy you.

Eating (and tasting some) in Oregon,

Matt

This is why we went through what we did....to get to hang tight with Mr. NED....

About your taste buds....YES on improvement after 6 months....I seem to be improving every month, and I'm 12 months out of radiation....the difference right now compared to even 2 months ago is impressive to me....I could use a little more spit to make eating a wonderful thing....but I'll take "good" for now  

p

Thanks for sharing this with all of us! My loved one is about 6 months out from tx also. He is noticing more and more improvement with his taste buds. Ice cream seems to be an issue. He loves Black Cherry ice cream and although he couldn't taste the flavor of the ice cream, he did taste some of the black cherries in it. Like Matt, steaks are top on his list! Although a little challenge to chew.

I've been trying to cook different things to see if we can wake more of those buds up and what we found is he definitely knows what PEPPER is...LOL.

I think we all just need to give it time and eventually most will be back.

~C

Roar said:

Congrats

I too am 6 months past treatment and experienced all the feelinga you described when going back to the treatment center. I feel like all the people there are like an extended family . My taste is still not 100% - I would say more like 60% but I think it is continuing to get better. My doctor sai to give it a year. My next per scan is in August.

stay strong,

ralph

I know you're so relieved and ready to get on with the healing!!!! you GO!!!

congrats on the check up. i'm 3 yrs 3 months and still no taste. get a hint of taste every so often but i still have confidence it will return

Hello, I've finished my 7 weeks of radiation 9 weeks ago and i am still unable to eat, taste is not the problem but the ability to eat and swallow food. how much longer will i have to wait?? 

Fantastic news about NED.  I keep praying for all of us to have tons for NED's forever.  After we go though hell seems only fair that we have killed the beast.

I am going on 7 months out and taste is coming back very slowly.  My doc said a year and then it it will more clear if taste will come back 80 tto 90% or whatever.  I am still hopefull.  My guess is I am at about 40% give or take.

Hello, JP and welcome to the H&N forum. JP, put your mind at ease. Since they just radiated you 33 times the tumor is gone. Those odd feelings and second guessing thoughts in your mind we all have I believe after treatments. If you have unusual feelings in the area it is probably because they just assaulted you with radiation. I believe it is at least trauma or mild trauma to the body and this whole thing works on your mind and body from diagnosis to finishing treatment, to our post treatment scans. It is tough on us. You made it, congrats. You are getting taste back already, great. Are you getting follow ups later with your ENT? I was seeing mine every month after treatment then it went to 3 month, 6 months etc. They probably will do a cat scan in a few months.

As far as oral hygiene you are going to have top be very vigilant. Not sure where you had radiation but it can cause a problem.

I am glad you are mindful of mouth and dental care because once we go through this it is much more important for the rest of our life.

I see the dentist every 6 months for a cleaning and fluoride treatment.

The dentist has me gargle every morning after brushing with Act Dry Mouth mouthwash for at least 30 seconds and

at night before I go to bed I brush and follow up with a higher dose fluoride paste called Denta 5000.

The toothpaste I use was recommended by an oral care specialist called Squiggle Fluoride.

I also brush after every meal.

I also floss once a day and use the small dental brushes between my teeth after meals.

Sounds like a lot but once you get it in your routine it's not too bad.

Check with your dentist and see if he is up on dealing with H&N Cancer folks.

The gal that cleans my teeth and my dentist are very aware of it and my situation.

I have been referred also to an oral surgeon for some things and they are really up on it and work closely when necessary with my radiation doctor to be sure of radiation fields and strength of radiation applied.

Also work closely with your dentist and make sure he works with the rad doctor. Below I will post a link you can look at about osteoradionecrosis (ORN).

I hope this helps JP.

Wishing You the Best

Take Care God Bless-Russ

JP I will private message you. And give you instructions on using CSN's private messaging capability.

Take Care God Bless-Russ