New here- what happens after treatment?

My brother is being treated for stage 4 tonsil cancer with mets to 3 lymph nodes. He's had chemo- citsplatin (sp?) once weekly for 6 weeks and rads 5 days weekly for 6 weeks. With the holidays he will need to do 8 more rads and the last chemo on Monday.

He's done really well. Lost some weight but not too alarming compared to what we expected. He's doing his best to eat whatever he can. Alot of the shakes hurt his throat.

He gets crabby with the nurses who want him on a peg tube, says no, not unless he has to.

What I'm wondering is what to expect after he's done with these? We've been close and my sister and I take him for treatments regularly. Will he still be in pain? Will his throat start to feel better? I want to give him hope.

Anything will be helpful. Also...what is NED stand for? :)

Thanks much! Nicci

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    whew

    Nicci,

    Welcome to the H&N forum, I am glad your brother is close to the finish line.

    For many, the peak of the side effects happens at around 2 weeks after treatment ends.  From there it slowly gets better.  Now what gets better first (pain, swallowing, saliva, taste, etc.) is debatable, but it does happen.

    Set your healing clock to  slow and tell him to enjoy his “new normal”.

    Best,

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Nicci....

    to this little home away from home.  As Matt said.....things don't start getting better until about 2 weeks after treatment has ended....and then it is a slow climb back to a new normal.  The new normal usually is lack of saliva and taste....tho that slowly comes back, too.  He's almost completed his treatments, but that still doesn't mean he won't end up needing a tube.....tho at this juncture I can see why he's resisting it.  He's not lost much weight, and he's still managing to get his shakes down.....albet with some pain...but getting them down none the less.   The simple fact is....the more food/shakes and the more water he gets down the better he'll feel and the faster he will heal.

    By the time summer comes, he'll be feeling waaaaay better.....just tell him it's a matter of patience.  Getting over this treatment isn't like getting over the flu.....it takes a lot longer.

    p

  • scarytimes
    scarytimes Member Posts: 16
    CivilMatt said:

    whew

    Nicci,

    Welcome to the H&N forum, I am glad your brother is close to the finish line.

    For many, the peak of the side effects happens at around 2 weeks after treatment ends.  From there it slowly gets better.  Now what gets better first (pain, swallowing, saliva, taste, etc.) is debatable, but it does happen.

    Set your healing clock to  slow and tell him to enjoy his “new normal”.

    Best,

    Matt

    Thank you so much for your

    Thank you so much for your response!

  • scarytimes
    scarytimes Member Posts: 16

    Welcome Nicci....

    to this little home away from home.  As Matt said.....things don't start getting better until about 2 weeks after treatment has ended....and then it is a slow climb back to a new normal.  The new normal usually is lack of saliva and taste....tho that slowly comes back, too.  He's almost completed his treatments, but that still doesn't mean he won't end up needing a tube.....tho at this juncture I can see why he's resisting it.  He's not lost much weight, and he's still managing to get his shakes down.....albet with some pain...but getting them down none the less.   The simple fact is....the more food/shakes and the more water he gets down the better he'll feel and the faster he will heal.

    By the time summer comes, he'll be feeling waaaaay better.....just tell him it's a matter of patience.  Getting over this treatment isn't like getting over the flu.....it takes a lot longer.

    p

    Thank you so much. I've seen

    Thank you so much. I've seen many of your posts and know you- and everyone else has been through so much. Thank you again!!!

  • denistd
    denistd Member Posts: 597

    Thank you so much. I've seen

    Thank you so much. I've seen many of your posts and know you- and everyone else has been through so much. Thank you again!!!

    NED

    No Evidence of Disease

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Nicci, unfortunately it will

    Nicci, unfortunately it will take a little more time after he finishes tx.  it is a slow process and he must be patient.  I'd say he should really feel better in a month after finishing.  NED stands for No Evidence of Disease.  that is what we live to hear on our check up scans.  we will celebrate with you when your brother gets his NED!

    God bless you,

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    What's Next?

    Welcome! You've found a great place to get answers from people who know what you are experiencing. Bill gave you an excellent answer. I can add the rads and chemo part. Chemo (Erbitux) did not give me many long-lasting side effects other than making my eyelashes grow. Really! Radiation does continue to work and also do damage for weeks after the last treatment. One effect that none of the doctors  mentioned was tons of thick mucus. Mucinex is a big help. Burns started about a week after treatment ended and cleared up in a week. Fatigue lasted  for about a month. Three months out, I still have a sore throat, but it is getting better. It does make eating a chore, but I never needed a PEG tube. I do not have my "teacher voice" back yet. The students would laugh if they heard me croak! There are some swallowing issues too, but speech and swallowing therapy is helping. Healing moves at a snail's pace it seems, so be patient. You are almost done. I hope to see your NED soon!

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome to the group, and sorry you or your brother needs to be here. NED = No Evidence of Disease. This is a term you will see a lot of. Your brother seems to be doing quite well with this. It's a bumpy road to go down, but it does smooth out when treatment is over. Once done, he is still cooking inside for awhile so it will be several weeks then he'll start to feel better. I only had surgery so the others can explain the RAD and Chemo. Don't feel bad he got grumpy with them. I got outright mad with the nutritionist and got into an argument, [I won] She wanted to increase my tube feeding and I told her NO I won't do it because I am getting sick if I take in over 150cc and she wants 280. I proved I was gaining weight on what I was doing, then passed the swallow test, [thank god] and it was over, I was allowed to swallow clear liquids. There will be days you just don't feel good for no reason. Just come here and write it down, it does help. We're open 24/7 and you'll get the suport you need for you as well as your brother. This takes a lot out of the caregivers/loved ones, so remember to get the rest you and your sister need. Adding you all to my prayer list. May your tomorrows always be better that today. Remember just take one day at a time, it's a slow process, but all of you will get through this.

    Bill

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Nicci:
    I had the same

    Hi Nicci:

    I had the same treatment as your brother.  Cisplatin, radiation and I did have a feeding tube.  (5 affected nodes)

    Whoever said the more liquid and food he gets the better he will feel is right.  I don't know why people fight getting the tube so much.  It is so important to get plenty of water and nutrition to heal, and it is so hard to eat or drink through this process.

    Also, the comment that healing is at a snails pace, couldn't be more true.  I was sickest one month after radiation ended than I was through the whole process.  I'm 7 months out and things are finally really good.  I still can't taste anything but otherwise my life is fairly normal again and I wasn't sure that was ever going to happen.

    He may have months of pain and sore throat and mouth ahead.  Everyone is different, but it was 5 months post treatment that I started to feel somewhat normal.  The good news is it does happen but I would be honest with him about months vs weeks.  I was told it would be a year before I felt normal again and so far i'm thinking that was probably accurate.

    i'm so thankful the people around me kept saying you will get better, be patient, lets just get through today.  I needed to hear that so badly and it was true, but I wanted to give up many times.  Its a very difficult thing to go through. Hang in there.  I assure you it will get better and he will have a reasonably normal life again.

    Best of luck to you.

    S

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Nicci

    It looks like you already got the answer to your questions so I will just say Welcome to our family here on CSN. Also thank you for being a Caretaker to your brother, I know it means a lot to him to have people who care and give support.

    PS: Being Crabby is normal when in treatment or for me it was, it went away a few months after the treatment stopped.

     

    Tim

  • yensid683
    yensid683 Member Posts: 349
    After treatment - a longer term expectation

    I'm some 2 and a half years out from the finish of rads, and would like to echo the sentiments of others.  My radiation oncologist let me know that I'd continue to 'cook' (his words) for two weeks after rads.  In the same conversation he said that the last week of rads and the two weeks following would be the most difficult, and he was right.  I did start to slowly (and I mean SLOWLY) feel better by the two week mark, and continued to improve and recover.  I was able to start back to work in 9 weeks, but still had issues and my PEG tube.  I had base of tongue (BOT) so I had swallowing issues separate from what your brother is experiencing, and found that the PEG tube was my salvation nutritionally.

    Recovery is slow, sometimes frustratingly so, but things do come back.

    Taste started to show up at 4 weeks post rads, my throat stayed swollen until week 11, and I was finally able to eat 'real' food.  I do need to take sips of water with whatever I eat, saliva is only around 70% of what it was, but I have adapted very well. 

    I'm back to almost normal, save the saliva issue.  I can eat just about anything, though sour is a very difficult taste to deal with but I'll take it, I'm looking at the leaves of the trees and not their roots!

  • hwt
    hwt Member Posts: 2,328 Member
    yensid683 said:

    After treatment - a longer term expectation

    I'm some 2 and a half years out from the finish of rads, and would like to echo the sentiments of others.  My radiation oncologist let me know that I'd continue to 'cook' (his words) for two weeks after rads.  In the same conversation he said that the last week of rads and the two weeks following would be the most difficult, and he was right.  I did start to slowly (and I mean SLOWLY) feel better by the two week mark, and continued to improve and recover.  I was able to start back to work in 9 weeks, but still had issues and my PEG tube.  I had base of tongue (BOT) so I had swallowing issues separate from what your brother is experiencing, and found that the PEG tube was my salvation nutritionally.

    Recovery is slow, sometimes frustratingly so, but things do come back.

    Taste started to show up at 4 weeks post rads, my throat stayed swollen until week 11, and I was finally able to eat 'real' food.  I do need to take sips of water with whatever I eat, saliva is only around 70% of what it was, but I have adapted very well. 

    I'm back to almost normal, save the saliva issue.  I can eat just about anything, though sour is a very difficult taste to deal with but I'll take it, I'm looking at the leaves of the trees and not their roots!

    Post tx

    I was warned about the weeks following tx (rads and Cisplatin) but I started seeing slow and steady improvement the first week tx finished. I hope the same for your brother. Hydration and nutrition are key. I slept an awful lot and forced myself to take a very short walk daily. I had a feeding tube and happy that I did. I was able to continue eating through tx but not nearly enough. I ate what I could and supplemented with Ensure in my feeding tube. It took awhile before I could tolerate hot/cold foods and drink. Other than milk and ice cream, I tolerated things best at room temperature. I used magic mouthwash for atleast a year but it did work. I recall at first that eggs, pancakes with lots of syrup and crab legs in melted butter were easy for me to eat and everything went easier with milk or chocolate milk. Fortunately. we have a casino nearby with all you can eat crab legs once a week. It was not unusual for me to ask for something to eat, take a few bites and then give it to my husband to finish because it just didn't work. Certain foods, like mashed potatoes, had to be just the right consistency for me to eat. Trial and error. 

  • scarytimes
    scarytimes Member Posts: 16
    Thank you for such honest information and support!!

    Hi all,

    Boy, everything you've said is so true. He did end up with the tube after a bad couple of days last weekend. Surprise, surprise he is happy he did. :) I am amazed at his resilience and tenacity. He's been switched to the Fentynal- using 2 patches (not sure of dose) and learning to use his oxy to keep his pain level as low as possible.

    Bob's girlfriend Yvonne has been his rock. I know he appreciates the love and support he's gotten from her and everyone else too.

    I shared this site with him but don't think he's logged on. When I'm at his house next I'll show him this thread. I think he would to talk with all of you once he's comfortable using it. (I must admit I don't have it down either!! haha

    We shall pray for the term NED!!! And lots of patience...

    Thank you!!

    Nicci

    PS He and Yvonne have a trip to Florida planned for February 17th. Our Mom and Dad live there so it should be relaxing. Good to get away for a bit.

     

     

     

  • HehnBuhl
    HehnBuhl Member Posts: 6

    Thank you for such honest information and support!!

    Hi all,

    Boy, everything you've said is so true. He did end up with the tube after a bad couple of days last weekend. Surprise, surprise he is happy he did. :) I am amazed at his resilience and tenacity. He's been switched to the Fentynal- using 2 patches (not sure of dose) and learning to use his oxy to keep his pain level as low as possible.

    Bob's girlfriend Yvonne has been his rock. I know he appreciates the love and support he's gotten from her and everyone else too.

    I shared this site with him but don't think he's logged on. When I'm at his house next I'll show him this thread. I think he would to talk with all of you once he's comfortable using it. (I must admit I don't have it down either!! haha

    We shall pray for the term NED!!! And lots of patience...

    Thank you!!

    Nicci

    PS He and Yvonne have a trip to Florida planned for February 17th. Our Mom and Dad live there so it should be relaxing. Good to get away for a bit.

     

     

     

    Diet NOW and Later - starting at end of radiation

    We are all trying to learn what this means and WHAT diet items are better NOW and what are "Verboten".  The last radiation was Thur 15 Jan and last chemo the week prior.

    We kept hearing that certain, normally "Good", anti-oxidents like Acai, Blueberries, etc. should be avoided - so as not to "feed" the cancer during treatment.  SO... when do we consider treatment "ended" and those nutrients can start ?  Is that the 2 weeks  more while the Rads continue to "cook"..  OR... can that start now.

    AND...

    What's on the LIST of good and bad... from here on out?   From YOUR experience?

    Dad & Mom in Florida

     

  • wmc
    wmc Member Posts: 1,804

    Thank you for such honest information and support!!

    Hi all,

    Boy, everything you've said is so true. He did end up with the tube after a bad couple of days last weekend. Surprise, surprise he is happy he did. :) I am amazed at his resilience and tenacity. He's been switched to the Fentynal- using 2 patches (not sure of dose) and learning to use his oxy to keep his pain level as low as possible.

    Bob's girlfriend Yvonne has been his rock. I know he appreciates the love and support he's gotten from her and everyone else too.

    I shared this site with him but don't think he's logged on. When I'm at his house next I'll show him this thread. I think he would to talk with all of you once he's comfortable using it. (I must admit I don't have it down either!! haha

    We shall pray for the term NED!!! And lots of patience...

    Thank you!!

    Nicci

    PS He and Yvonne have a trip to Florida planned for February 17th. Our Mom and Dad live there so it should be relaxing. Good to get away for a bit.

     

     

     

    Nicci thanks for the up date and good news.

    Thank you for the good news and the up date. It's always great to hear someone is going good. I hope Bob and Yvonne enjoy there trip/vacation in Florida with your Mom and Dad.

    May all his tomorrows be better than today

    Bill

  • scarytimes
    scarytimes Member Posts: 16
    Sailor123 said:

    Hi Nicci:
    I had the same

    Hi Nicci:

    I had the same treatment as your brother.  Cisplatin, radiation and I did have a feeding tube.  (5 affected nodes)

    Whoever said the more liquid and food he gets the better he will feel is right.  I don't know why people fight getting the tube so much.  It is so important to get plenty of water and nutrition to heal, and it is so hard to eat or drink through this process.

    Also, the comment that healing is at a snails pace, couldn't be more true.  I was sickest one month after radiation ended than I was through the whole process.  I'm 7 months out and things are finally really good.  I still can't taste anything but otherwise my life is fairly normal again and I wasn't sure that was ever going to happen.

    He may have months of pain and sore throat and mouth ahead.  Everyone is different, but it was 5 months post treatment that I started to feel somewhat normal.  The good news is it does happen but I would be honest with him about months vs weeks.  I was told it would be a year before I felt normal again and so far i'm thinking that was probably accurate.

    i'm so thankful the people around me kept saying you will get better, be patient, lets just get through today.  I needed to hear that so badly and it was true, but I wanted to give up many times.  Its a very difficult thing to go through. Hang in there.  I assure you it will get better and he will have a reasonably normal life again.

    Best of luck to you.

    S

     

    Thank you

    I read your story  and will be looking at the Liquid Hope web page!!! I think it's important for people to know they can use real food in the tube. Why doesn't the medical community tell people these things?

    All my best to you and your continued adventure called LIFE!!