6 Months After Treatment/Tonsil and Lymph Node

Joanielo
Joanielo Member Posts: 55
edited January 30 in Head and Neck Cancer #1

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

 

 

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Comments

  • Ingrid K
    Ingrid K Member Posts: 813
    Good News !

    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
    Skiffin16 Member Posts: 8,304 Member
    Congrats...

    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
    CivilMatt Member Posts: 4,698 Member
    tasting anything

     

    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
    MarineE5 Member Posts: 1,023 Member
    No Give UP in you...

    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
    phrannie51 Member Posts: 4,716
    Whoo Hoo Joanie!!

    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
    CherieLW Member Posts: 472
    Joanie,
    Congrats! Glad things

    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
    cureitall66 Member Posts: 913
    Wonderful News!

    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
    Roar Member Posts: 269 Member
    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

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    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

    Great!!!!

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

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    wtg joanie.  this is the news

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

    dj

  • wild willy
    wild willy Member Posts: 63 Member
    taste

    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
    longtermsurvivor Member Posts: 1,842 Member

    taste

    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

    3 years seems like a long time

    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
    Michael McDonnell Member Posts: 9
    2 months after radiation..

    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
    debbiejeanne Member Posts: 3,102 Member

    2 months after radiation..

    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?? 

    michael, it took me months. 

    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
    HobbsDoggy Member Posts: 276
    Fantastic

    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.

  • jp55
    jp55 Member Posts: 5 Member

    I’m near 30 days out and I am starting to taste better every week so far. I would like to know any tips or good advice on taking care of my oral hygiene as I wasn’t really informed too well. The treatments went well 33 in a roll and I feel great? My main problem is I feel in my neck that I hope is just healing and not a return of a tumor. Did others have a feeling of a tumor or something but it was just healing or scar tissue the whole time? I’d appreciate any feed back as it’s hard to clear my mind. Sometimes I feel 100% myself and other days I feel as thought it could be something like a tumor or so? How was the feeling in your necks 1-2 months after the 33 treatments, no chemo I only have 1 kidney and spleen removed 50 years ago as a teenager! Any feedback on anything I mentioned would be appreciated greatly Thank You jp55

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    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



  • jp55
    jp55 Member Posts: 5 Member
    edited January 19 #19

    WBC, I don’t know your name but Jesus asked me to give you a message! Only thing is I cannot post it on this forum. Please contact me at or on FB or fb messenger. It’s important to me and you that you contact me. If I’m not available at the moment I will be soon or leave a number or another way to contact you! Thank You for the information, I’m on it Thanks

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

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

    Take Care God Bless-Russ

  • jp55
    jp55 Member Posts: 5 Member

    That’s okay now I think I got it but they may not want me on their forum! If I’m good I’ll stay , if not I’m gone . It’s that simple 🙏❤️🇺🇸