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6 Months After Treatment/Tonsil and Lymph Node

Joanielo's picture
Joanielo
Posts: 46
Joined: Oct 2012

Hi Friends,

I had my 6 month checkup yesterday.  Doctor looked at everything with the camera.  She said that things are looking good.  Still a little redness and mucus but she said that I a recovering nicely and no visible signs of recurrence.

I wanted to share this news in hopes of offering a little encouragement to those who are currently in treatment.  You can make it to the end and it is possible to have good results :)

My first PET scan after treatments was done in March and they saw no evidence of cancer on that scan.  They will be doing a CT scan for my next check up which will be in September.

It was a little strange going back to the place where I had all of the radiation treatments.  It brought back memories of a dark time and I did cry a little. 

I am still dealing with taste bud issues and lack of energy but both seem to continue to improve at a slow pace. 

I am worried about my taste buds.  At six months out, I wonder if this is the best that it will ever be or is it still possible that they could continue to get better??  My doctor said that they may not get much better at this point.  I hope to prove her wrong!  It seems that some of you have said that you have seen improvement even later than 6 months??  Please share...

Thank you for listening.  I read all of the posts every day and appreciate every one of you!!

Joanie

 

 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

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 !!

 

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

And like my bud IK said... Don't give up on your buds...(taste that is)... It took all of two years before I could taste Ice Cream again and not lose the taste after the first bite or so....

Six months out, you are still a babe as for the taste bud recovery...

But your MD, may or may not be right, it's not a science and there are no guarantees..., from my experience, he's not...

Best,

John

CivilMatt's picture
CivilMatt
Posts: 3013
Joined: May 2012

 

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

 

MarineE5
Posts: 757
Joined: Dec 2005

Joanie,

As the others stated, don't give up on the taste buds for some time. I can honestly say that even after 2 years of not tasting some foods, I suddenly started to taste them. One thing that I couldn't taste and actually tasted bad to me after my radiation treatments was Chocolate. After many years of not tasting it, I tried it again and wa-la, I could taste it. You know that I am making up for that now..... Laughing

My Best to You and Everyone Here

phrannie51's picture
phrannie51
Posts: 3787
Joined: Mar 2012

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 Smile 

p

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Joanie,

Congrats! Glad things are looking up! Continuing to pray for you and everyone else as well! 

My father is currently 2 weeks into treatments...so I appreciate allt he returned prayers I get for him as well!

Hope things keep improving for you!  This is great news!

Cherie

cureitall66's picture
cureitall66
Posts: 867
Joined: Aug 2012

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's picture
Roar
Posts: 247
Joined: Mar 2013

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

Mrs. Sarge
Posts: 199
Joined: Apr 2012

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

debbiejeanne's picture
debbiejeanne
Posts: 2514
Joined: Jan 2010

wtg joanie.  this is the news we love to read.  here's to many more ned scans and scopes.

dj

wild willy's picture
wild willy
Posts: 32
Joined: Jun 2012

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

longtermsurvivor's picture
longtermsurvivor
Posts: 1821
Joined: Mar 2010

But you still may get your taste back.  Mine came back slowly with my first radiation.  It took something like 4-5 years to be normal again.  This second go around I had with rads, I didn't lose my sense of taste.  Go figure.   Someone once posted here, I think  it was patricke, that he was without saliva for 9 years, and all of a sudden one day, he just had a bunch of it back.

Michael McDonnell
Posts: 9
Joined: Jun 2013

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?? 

debbiejeanne's picture
debbiejeanne
Posts: 2514
Joined: Jan 2010

michael, it took me months.  it is a slow process.  u will have to be patient.  it will happen so hang n there.

dj

HobbsDoggy
Posts: 165
Joined: Feb 2013

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.

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