just got my game plan

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thennies61
thennies61 Member Posts: 285
in Head and Neck Cancer #1

Well once out of rehab sunday have a meeting on the 27th with radition doctor.As far as I know right now it will be 5 days a week for 7 weeks 10 minutes each day.What can I plan on happening just to prepare myself...

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  • catfish_58
    catfish_58 Member Posts: 138 Member
    #2
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    Preperation

    I'd say start at the Superthread (Read only) ~ contributed by Sweetblood22 sight for questions and answers,I started there and took a lot of those questions with me,for during the treatment I had Aquafer to rub on my neck for the radiation burn,(others have different stuff I'm sure they will let you know too),An electric shaver, meds for the upset stomach and later on meds for the thrush that developed ,I had a tube put in and after about 2 weeks had to start using it,after about a week or twoafter that had to start using jevity 1.5 two cans every feeding 3 times a day,keep drinking lots of water if you can need to stay hydrated as much as possible,also found that taking those small alcohol pads helped out if i got sick during treatment just have to sniff em,may want to talk to your dentist about trays for your teeth if you still have em and may want to check out about the saliva glands,i didn't do anything for mine and wished i had weight loss is another area take in as many calories as you can,Can't remember too much more right now except watched a lot of GSN (game show network) and movies with family.It'll turn out fine slow process on healing but you'll get there,This is a little long winded sorry bout that good luck with those treatments keep us informed on your progress

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    get ready cause here it comes

    thenneis61,

    Well it starts out quietly and hopefully ends the same way (it has happened).

    Realistically, it does start off easy and becomes more difficult as the side effects take hold and your body reacts.

    For me the best advice I took from the H&N forum (Dec 2011 & Jan 2012) was drink water and keep swallowing.

    My top 3 drugs were Lorazapam for mask time, magic mouth wash for sore mouth, tongue & throat and Silver Sulfadiazine cream for neck burn.

    Check the superthread for “must haves” and make sure you have most, I think I counted around 22 items I had.   Week-ends are long if you don’t have something.

    If you have chemo, take the nausea drugs early and watch out for constipation

    Bring some favorite music to rads, it is a trip unlike any other.

    You will do fine, you just have to learn to work with your body and don’t tough it out.  Take your meds and keep your caregiver, the nurses and doctor up to speed with you condition.

    This is a start,

    Matt

  • thennies61
    thennies61 Member Posts: 285
    #4
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    CivilMatt said:

    get ready cause here it comes

    thenneis61,

    Well it starts out quietly and hopefully ends the same way (it has happened).

    Realistically, it does start off easy and becomes more difficult as the side effects take hold and your body reacts.

    For me the best advice I took from the H&N forum (Dec 2011 & Jan 2012) was drink water and keep swallowing.

    My top 3 drugs were Lorazapam for mask time, magic mouth wash for sore mouth, tongue & throat and Silver Sulfadiazine cream for neck burn.

    Check the superthread for “must haves” and make sure you have most, I think I counted around 22 items I had.   Week-ends are long if you don’t have something.

    If you have chemo, take the nausea drugs early and watch out for constipation

    Bring some favorite music to rads, it is a trip unlike any other.

    You will do fine, you just have to learn to work with your body and don’t tough it out.  Take your meds and keep your caregiver, the nurses and doctor up to speed with you condition.

    This is a start,

    Matt

    Not if I will be able to

    Not if I will be able to drink anything since the trech tube is still in.Was hoping to have it removed before I start rad treatment but do have another appointment sat so maybe he will remove it then.There will be a caregiver coming by once a day to check on me.They told my brother to except reddness and that I will become weak for maybe the first two weeks and that I will need a ride for that time then after I will most likely beable to drive my self but I'm guessing each person is different.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    Glad to hear you now have a game plan and something to focus on. No joke it will get hard at times but like all of us here you will get passed it. Find something that you like to do and keep you mind positive and focus on getting through the treatment. Post how are doing and remember we are all here for you to help you get passed the finish line. I pray that God will continue to bless you as you prepare.    

     

    Hondo

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
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    Side Effects

    Just remember every person is different in how their bodies react.  My husband's first round of radiation (35) didn't bother his outside skin.  Did close off the back of his throat completely and it had to be rebuilt during surgery.  Second round of radiation, outside skin burned because it was a skin graft from his laryngectomy.  The radiologist gave him a cream to use and it really helped his skin heal.   He did have a PEG tube inserted before both rounds of radiation which he needed after the first week.  One thing though he didn't take in enough water and became dehyrdated so water is important.  During my husband's first round of radiation and chemo he did have a therapist come in and work with him on swallowing, not that it did any good due to radiation damage that no one knew about it seems. 

    He didn't need anything for his nerves during his radiation.  He was able to lie still and doze.  He also drove to radiation treatments and I drove home.   Like I said, everyone is different in how they react to radiation.

    Wishing you the best -- Sharon

  • Crazymom
    Crazymom Member Posts: 339 Member
    #7
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    radiation

    I had left tonsil and two left nodes.  The radiation started out ok.  The last couple of weeks I began having pain.  The two weeks after the radiation ended were the worst.  I lost 30 pounds and could hardly drink the last few weeks.  Drink as much water as possible or you will get horribly constipated.  Your neck will be dark red and will need some kind of lotion.  The doctor will give you some names.  The thrush in your mouth started around the 4th week and went for about a month after the radiation.  It was very painful.  It is very difficult at the end, but it is doable.  I just had my 2 year scan and am NED.  I feel good and am enjoying life.  You can get through this...but it will be tough at the end!   Ann

  • thennies61
    thennies61 Member Posts: 285
    #8
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    Crazymom said:

    radiation

    I had left tonsil and two left nodes.  The radiation started out ok.  The last couple of weeks I began having pain.  The two weeks after the radiation ended were the worst.  I lost 30 pounds and could hardly drink the last few weeks.  Drink as much water as possible or you will get horribly constipated.  Your neck will be dark red and will need some kind of lotion.  The doctor will give you some names.  The thrush in your mouth started around the 4th week and went for about a month after the radiation.  It was very painful.  It is very difficult at the end, but it is doable.  I just had my 2 year scan and am NED.  I feel good and am enjoying life.  You can get through this...but it will be tough at the end!   Ann

    Thanks...everyone seems to

    Thanks...everyone seems to say to drink alot water..The problem with that is I haven't drank anything yet.Everything has been taken though peg tube.I do have a doctor's appointment sat so that will be the first question I ask is when can I start to drink liquids.Had vocal device put on this morning and started speach classes.Alittle trouble with E's and G's but since tounge has been rebuilt it will take time to get new muscle to start to work right.Wonder if the he might remove trach before radiation??

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #9
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    thennies61 said:

    Thanks...everyone seems to

    Thanks...everyone seems to say to drink alot water..The problem with that is I haven't drank anything yet.Everything has been taken though peg tube.I do have a doctor's appointment sat so that will be the first question I ask is when can I start to drink liquids.Had vocal device put on this morning and started speach classes.Alittle trouble with E's and G's but since tounge has been rebuilt it will take time to get new muscle to start to work right.Wonder if the he might remove trach before radiation??

    PEG or by mouth

    Don't worry if you can't 'drink' the water, just get it in. Using the PEG to get a litre (1000 ml) per day is perfectly fine. The main thing is to get it in so you don't dehydrate.  Are you able to swallow??  Because that's something you'll want to 'practice' doing on a daily basis, just to keep the throat muscles moving. Also, do some mouth opening excercises at least two to three times a day, or your jaw 'bands' may tighten up and want to retract. I used Noxema on Ruben's neck for radiation 'burns', that he NEVER had.  Needless to say, the Noxema worked great.  Take something like chapstick with you to use AFTER your radiation treatment, to keep your lips soft and moist. 

    These are a few of the main things we did on a daily basis during treatment, which we feel helped curb a number of possible side effects.

    Take care, best wishes.

    Jude

  • debi4109
    debi4109 Member Posts: 7
    #10
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    Crazymom said:

    radiation

    I had left tonsil and two left nodes.  The radiation started out ok.  The last couple of weeks I began having pain.  The two weeks after the radiation ended were the worst.  I lost 30 pounds and could hardly drink the last few weeks.  Drink as much water as possible or you will get horribly constipated.  Your neck will be dark red and will need some kind of lotion.  The doctor will give you some names.  The thrush in your mouth started around the 4th week and went for about a month after the radiation.  It was very painful.  It is very difficult at the end, but it is doable.  I just had my 2 year scan and am NED.  I feel good and am enjoying life.  You can get through this...but it will be tough at the end!   Ann

    Crazy mom, what was your

    Crazy mom, what was your diagnosis and woooooohooooo on 2yrs ned/ i am 4yrs  out from breast ca, now L tonsil 1 node/ going tuesday for cyberknife appt/ hoping thats all i need, dr. said tonsil area was VERY small/ i'm not seeing any cyberknife pts on here/ godd luck to you/debi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #11
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    debi4109 said:

    Crazy mom, what was your

    Crazy mom, what was your diagnosis and woooooohooooo on 2yrs ned/ i am 4yrs  out from breast ca, now L tonsil 1 node/ going tuesday for cyberknife appt/ hoping thats all i need, dr. said tonsil area was VERY small/ i'm not seeing any cyberknife pts on here/ godd luck to you/debi

    deb, so sorry you have to

    deb, so sorry you have to fight again and praying for strength for you so you are up to it.  there are a couple here who have had cyberknife, i'm sure they'll chime in.  praying that is all you'll need, no rads or chemo.  you will beat this beast just as you did the breast cancer!  let us know how you're doing.

    God bless you,

    dj

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