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My husband had his 8th Rad today for stage 3 tonsil cancer.  Anything he can do to prevent mucositis and so forth.  Is drinking lots of water, salt and baking soda rinses and mugard.  I am very nervous about what is to come in the near future!  Trying to head anything off if possible!

Comments

  • Fritz
    Fritz Member Posts: 106
    Hello and Welcome!

    Angel:

    Sorry you have to be on this site; however, I believe you will see it is full of very caring people who will help you where ever possible. I was diagnosed Stage IVA Tonsil Cancer (T2N2aM0) with spread into base of tongue, soft palate and 1 nearby lymph node. Surgery was followed by 33 radiation treatments and 6 Cisplatin infusions. As many will tell you on this site, everyone will experience the side effects differently.

    I was able to keep the sores at bay by staying hydrated and rinsing with the salt/baking soda you describe above.  Also, swishing/swallowing with L-glutamine seems to help as well. I was able to maintain swallowing function throughout my treatments (albeit liquids only after week 3 due to the onset of heavy mucous) and that allowed me to take in high protein shakes and commercial supplements such as Boost. The excessive mucous was my biggest enemy during this whole process although many others experience significant sores. Totally warding off mucositis is impossible I believe, but use the recommendations you can find on this site to minimize the onset as much as possible.

    I hope you have much success during the treatment process. Remember, as you have problems arise, post to this site and allow its members to help you through the crisis point.

    Freddie

     

  • Angel5
    Angel5 Member Posts: 10
    Fritz said:

    Hello and Welcome!

    Angel:

    Sorry you have to be on this site; however, I believe you will see it is full of very caring people who will help you where ever possible. I was diagnosed Stage IVA Tonsil Cancer (T2N2aM0) with spread into base of tongue, soft palate and 1 nearby lymph node. Surgery was followed by 33 radiation treatments and 6 Cisplatin infusions. As many will tell you on this site, everyone will experience the side effects differently.

    I was able to keep the sores at bay by staying hydrated and rinsing with the salt/baking soda you describe above.  Also, swishing/swallowing with L-glutamine seems to help as well. I was able to maintain swallowing function throughout my treatments (albeit liquids only after week 3 due to the onset of heavy mucous) and that allowed me to take in high protein shakes and commercial supplements such as Boost. The excessive mucous was my biggest enemy during this whole process although many others experience significant sores. Totally warding off mucositis is impossible I believe, but use the recommendations you can find on this site to minimize the onset as much as possible.

    I hope you have much success during the treatment process. Remember, as you have problems arise, post to this site and allow its members to help you through the crisis point.

    Freddie

     

    Thank you Freddie for the

    Thank you Freddie for the quick reply.  He is being diligent so far.....we will see what happens.  Yikes!

  • Kari2007
    Kari2007 Member Posts: 108
    edited August 2016 #4
    Angel

    I finished rads and chemo for Stage III HPV+ oropharyngeal SCC with two lymph nodes just a little over a week ago. I did really well for several weeks, but around week 5, things got worse in terms of pain and mucus. I did the salt/soda rinses, drank aloe juice, lots of water, etc which I think helped keep the mucus at bay for a while. Eventually, though, we all deal with it to some degree or another. For me, the worst was right around last week of treatment and since then. Mucibnex round-the-clock really helps, as does a humidifier going non stop. Anti nausea meds help me, too, but sometimess I'll just have a bad day where I can't keep anything down.

    It's a really harsh treatment, but he will have good days. And, soon he'll be back to normal and cancer free!

    Kari

  • Angel5
    Angel5 Member Posts: 10
    edited August 2016 #5
    Kari2007 said:

    Angel

    I finished rads and chemo for Stage III HPV+ oropharyngeal SCC with two lymph nodes just a little over a week ago. I did really well for several weeks, but around week 5, things got worse in terms of pain and mucus. I did the salt/soda rinses, drank aloe juice, lots of water, etc which I think helped keep the mucus at bay for a while. Eventually, though, we all deal with it to some degree or another. For me, the worst was right around last week of treatment and since then. Mucibnex round-the-clock really helps, as does a humidifier going non stop. Anti nausea meds help me, too, but sometimess I'll just have a bad day where I can't keep anything down.

    It's a really harsh treatment, but he will have good days. And, soon he'll be back to normal and cancer free!

    Kari

    Kari....Thanks for the tips. 

    Kari....Thanks for the tips.  Seems as though I am waiting for the bottom to drop out.  Some anxiety....trying to take it a day at a time!  I appreciate this board so much and the encouragement.  Wish I could convince him to reach out!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    welcome

    Angel5,

    Welcome to the H&N forum, you sound like you are doing everything correct.  I don’t know how well we head off side effects, but we are pretty good reactionaries.  For me, I always had a pitcher of salt and soda at the ready and drank approx. 10 glasses of water a day.  My #1 product was magic mouth wash.  the stuff I had and for me it was aa blessing for throat, mouth and tongue discomfort.  I swished and swallowed every drop of 6 bottles, but that is me.

    Don’t be surprised if things get complicated or if they don’t.  All the meds your team recommends to you to have, get them!  It is far better to be over prepared then not.  Stay hydrated and get as much nourishment as you can.

    This is all temporary and you need to get your head in it and I especially mean the patient.

    Good luck,

    Matt

  • wmc
    wmc Member Posts: 1,804
    edited August 2016 #7
    Welcome to H&N group

    Welcome and sorry you need to be here. It can affect everyone a little different. Mine was T3;N0;M0. but when I went into surgery it looked like T4;N2;M0, so I came out better. They had to remove my larynx and do a neck dissection on both sides and took 86 lymph glands. I'm coming up on 3 years all clear. 

    I will agree with what Matt said. It is better to have them and not need them, then need them and not have them. You never want to play catch up because it takes so long to get a head of it.

    Bill

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    Welcome

    You have got great advise from the above responses.  I am starting 5 months out of treatment.  My mouth sores were the worse and mucus came in a close second.  Used the above remedies.  I just got my 1st nasty Summer cold and all the mucus memories came flooding back.  If your mouth does not have tons of sores and you can tolerate warm or hotter water........I tried a small teaspoon of lemon in water heated and it seemed to help cut the mucus a bit along with soothing my throat.  Love hot tea but seems to make more mucus.  Take a tiny sip to make sure you can tolerate the lemon.  Hope it helps some.   Hugs, Lisa

  • RottiesMom
    RottiesMom Member Posts: 167
    edited August 2016 #9
    Hi Angel

    What everyone said above! I ended treatment last Tuesday (35 rads, 3 cycles of cisplatin).  I especially liked the magic mouthwash because it calmed down and soothed my throat after coughing...still using it.

    Joanne

  • phrannie51
    phrannie51 Member Posts: 4,716
    It's good to have things on hand

    as things pop up...the things you can pick up at the health food store, or grocery store.  Things seem to come around on weekends for some reason...maybe it's getting 2 days off the radiation circle?  L-Glutamine powder can be found at the health food store....mix a couple teaspoons into water, swish/hold/swallow....it's good for digestion, too.  Of course your soda/salt should always be handy....If mouth sores become intense there are prescription drugs to help ease the pain. 

    I used Mugard to prevent mouth sores....it worked, and I had none during radiation....but at the time it was in clinical trials...and cheap....now it's not.

    He may get through this with little trouble....I remember feeling guilty during radiation when many of my friends on here were suffering horribly, and I wasn't really suffering at all.  I got my dose of suffering when everyone else I started treatment with were done, and I still had 3 months of adjuvant chemo left to do... :)

  • theo64
    theo64 Member Posts: 2
    saliva glans

    Hi could anybody tell me how to slow down saliva gland's? I had half my tongue removed two years com October,thank god I'm still cancer free! But I do have his bad problem with saliva while trying to talk, I have to carry a wash cloth around & I'm really getting tiered of it, so any idea's would be helpful! Thank you,

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited August 2016 #12
    theo64 said:

    saliva glans

    Hi could anybody tell me how to slow down saliva gland's? I had half my tongue removed two years com October,thank god I'm still cancer free! But I do have his bad problem with saliva while trying to talk, I have to carry a wash cloth around & I'm really getting tiered of it, so any idea's would be helpful! Thank you,

    saliva for life

    theo64,

    Welcome to the H&N forum, many of us have had some issues with saliva.  There is one member who sticks out as having an abundance of spit and for the life of me I cannot remember his name.  I will do some snooping around for him.  I know he checks in occasionally, so maybe he will see your post.

    The H&N member's name is Thennies61.

    Speaking of your  post, to get maximum exposure your best bet is to start a new thread and introduce yourself and your question.  I cannot guarantee a solution, but having more H&N eyes see and think about your issues the better.

    Now if you are talking about drooling on pillow cases, you are really in the right place.

    Matt

  • MichaelHill1
    MichaelHill1 Member Posts: 13
    mouth stuff

    I used the baking soda/salt.  Magic mouth.  Like everyone else.  Had to decrease the salt as time went on during rads.  For topical immediate mouth pain relief is used coconut oil.  Very good.  Cold mist humidifier for beddy by.  Not to much problem with mucus, but do have a lot of spit.  Very important if you have pain meds that require stool softener.  Don't forget to take the stool softener or else.

    Mike

  • Angel5
    Angel5 Member Posts: 10
    edited September 2016 #14
    Lymph node getting bigger during treatment

    Good morning!  My husband is having his 15th rad treatment today.  The lymph node is getting bigger with each treatment it seems!  Is that normal?  Also, any opinions on coconut oil for the mouth in addition to the other rinses.

  • RottiesMom
    RottiesMom Member Posts: 167
    edited September 2016 #15
    Mine did!

    One of mine did (I had 2 lymph nodes involved  in addition to my right tonsil which was the origination site)...it got bigger and harder before it started shrinking.  Radiation oncologist didn't give a reason and said at the dose of radiation I was getting the cancer was not growing.  It eventually started shrinking and is gone now (I ended radiation 8/16).

  • Angel5
    Angel5 Member Posts: 10
    Thank you!
     

    Thank you!