Son just diagnosed

bigworm72
bigworm72 Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
My 37 year old son has just been diagnosed last week with throat cancer. He suffered a severe brain injury about 5 years ago and has some brain damage and I don't think he realizes how serious this is. I'm a nervous wreck because we don't know what to expect. Does the radiation make you feel sick? Does it hurt? Do you have to eat certain foods. Do you have to have a feeding tube? Maybe all these can be answered when we see the oncologist but I thought I'd ask here ahead of time. We see him tomorrow and I'm real curious.

Comments

  • pattynonews
    pattynonews Member Posts: 176
    #2
    Jack had stage 4 head and
    Jack had stage 4 head and neck cancer and was dx last year, before we started radiation, he had to have 8 teeth pulled and a feeding tube put in, I have to be honest the radiation was hard on him, He did 33 days straight, It is something you have to be mentally prepare for, not just your son but you as his mom and caretaker, It has been a year and Jack still does not take food by mouth, becasue the radiation did alot of damage in his throat, it did make the tumor shrink, Does your son have head and neck cancer, if so take very good care of his mouth, ask for something called magic mouthwash, it was alife saver for Jack, and if your son does looses the ability to eat by mouth, just go with it do not stress him out and force him, it is very painful , you can get all his nutrients through his tube, alot of the insurance company will pay for his nutrients, I have Jack on isosource , but there are alot of secrets I have learned on the way, if you need any advice let me know, I keep track of all on Jacks intake of food so we know how many calories he gets in a day, We try to get 4000 calories a day I know that sounds like alot but you don;t want them to lose weight because it is a battle to gain, maintain is the goal, I hope this helps i wish I would hve know all of this , we were sent home with a feeding tube and had to learn as we go, you can always send me a message on this site or my email address is pattynonews@aol.com
  • train-nut
    train-nut Member Posts: 101
    #3
    Your Son's Treatment
    Bigworm,

    I regret that your son has head and neck cancer, sounds like he has had more than his "share" already. It's not a day in the park but it is very doable and you should expect that he will be cured. Some thoughts: the radiation often makes you feel tired, the actual treatment is painless. There can be side effects such as skin burns and nausea; your care team has a whole arsenal of medications to prevent and combat this sort of thing. A feeding tube is usually recommended and often a big help in getting enough nutrition and water. I suggest eating like a pig now to build up a "pad"; some weight loss
    during and shortly after treatment is common. Drink lots of water starting now and keep it up until well after the radiation ends. If he has any chemo it can also produce side effects. The radiation is cummulative and it's effects tend to be chronic, chemo stuff is more acute (a few days and you feel substantially better). Everyone responds differently to treatment so don't take this post as "gospel". If he takes any pain medication watch out for constipation; again, there are meds for this. Don't hesitate to medicate but follow the directions...I took a day's worth of laxative at one time and within 30 minutes moved Heaven and Earth. One last comment: my Aunt Gin, a retired nurse, gave me only one suggestion: do whatever the doctors tell you to do, be damn sure you do what the nurses tell you. My best to your son and your family. Rich
  • bigworm72
    bigworm72 Member Posts: 6
    #4
    pattynonews said:

    Jack had stage 4 head and
    Jack had stage 4 head and neck cancer and was dx last year, before we started radiation, he had to have 8 teeth pulled and a feeding tube put in, I have to be honest the radiation was hard on him, He did 33 days straight, It is something you have to be mentally prepare for, not just your son but you as his mom and caretaker, It has been a year and Jack still does not take food by mouth, becasue the radiation did alot of damage in his throat, it did make the tumor shrink, Does your son have head and neck cancer, if so take very good care of his mouth, ask for something called magic mouthwash, it was alife saver for Jack, and if your son does looses the ability to eat by mouth, just go with it do not stress him out and force him, it is very painful , you can get all his nutrients through his tube, alot of the insurance company will pay for his nutrients, I have Jack on isosource , but there are alot of secrets I have learned on the way, if you need any advice let me know, I keep track of all on Jacks intake of food so we know how many calories he gets in a day, We try to get 4000 calories a day I know that sounds like alot but you don;t want them to lose weight because it is a battle to gain, maintain is the goal, I hope this helps i wish I would hve know all of this , we were sent home with a feeding tube and had to learn as we go, you can always send me a message on this site or my email address is pattynonews@aol.com

    Advice
    Thanks for your advice and encouragement, I appreciate it all. What do you mean by stage 4? Are there other stages? My son's cancer is at the top of his esphogus??? ( can't spell)
    and by his voice box or something like that.
  • bigworm72
    bigworm72 Member Posts: 6
    #5
    pattynonews said:

    Jack had stage 4 head and
    Jack had stage 4 head and neck cancer and was dx last year, before we started radiation, he had to have 8 teeth pulled and a feeding tube put in, I have to be honest the radiation was hard on him, He did 33 days straight, It is something you have to be mentally prepare for, not just your son but you as his mom and caretaker, It has been a year and Jack still does not take food by mouth, becasue the radiation did alot of damage in his throat, it did make the tumor shrink, Does your son have head and neck cancer, if so take very good care of his mouth, ask for something called magic mouthwash, it was alife saver for Jack, and if your son does looses the ability to eat by mouth, just go with it do not stress him out and force him, it is very painful , you can get all his nutrients through his tube, alot of the insurance company will pay for his nutrients, I have Jack on isosource , but there are alot of secrets I have learned on the way, if you need any advice let me know, I keep track of all on Jacks intake of food so we know how many calories he gets in a day, We try to get 4000 calories a day I know that sounds like alot but you don;t want them to lose weight because it is a battle to gain, maintain is the goal, I hope this helps i wish I would hve know all of this , we were sent home with a feeding tube and had to learn as we go, you can always send me a message on this site or my email address is pattynonews@aol.com

    Advice
    Thanks for your advice and encouragement, I appreciate it all. What do you mean by stage 4? Are there other stages? My son's cancer is at the top of his esphogus??? ( can't spell)
    and by his voice box or something like that.
  • harberval
    harberval Member Posts: 4
    #6
    husband just diagnosed
    if you need to just chat im here ,
    hubby has just been diagnosed last week tumour i neck and side of tongue , and we have had so many appointments , but as someone else replied expect a cure , thats what surgeons have told us ,
    have you family to talk to, or friends ,take time for your self to, hes gonna need you so you have to be well, I know its hard , the things that go on in your head and the questions and if onlys are always there arent they ,,,,,but as I say , sometimes we just need to chat
    all the very best
    val
  • harberval
    harberval Member Posts: 4
    #7
    husband just diagnosed
    if you need to just chat im here ,
    hubby has just been diagnosed last week tumour i neck and side of tongue , and we have had so many appointments , but as someone else replied expect a cure , thats what surgeons have told us ,
    have you family to talk to, or friends ,take time for your self to, hes gonna need you so you have to be well, I know its hard , the things that go on in your head and the questions and if onlys are always there arent they ,,,,,but as I say , sometimes we just need to chat
    all the very best
    val
  • bigworm72
    bigworm72 Member Posts: 6
    #8
    First round
    Just got back from hospital.My son had 16 teeth pulled and had a trach put in, he hates it.
    Next week is the PEG tube. For those of you who had been there, Is the hospital stay overnight, 2-3 days or what. I'm trying to plan ahead for the stay. Has anyone had that much teeth pulled? He didn't even have cavities.
  • jkinobay
    jkinobay Member Posts: 298 Member
    #9
    bigworm72 said:

    First round
    Just got back from hospital.My son had 16 teeth pulled and had a trach put in, he hates it.
    Next week is the PEG tube. For those of you who had been there, Is the hospital stay overnight, 2-3 days or what. I'm trying to plan ahead for the stay. Has anyone had that much teeth pulled? He didn't even have cavities.

    PEG Tube Placement
    If you are asking about the time involved in placement of the PEG tube, in most cases I believe it is an out-patient surgery. In my case it only took 30 minutes for the procedure, about an hour and a half all total, and I was on my way home.

    As a suggestion, do a search here on the CSN for PEG Tube Use and Care 101. It is a lengthy post I made some time back that may prove helpful.

    God Bless you and your Son.

    JK
  • SASH
    SASH Member Posts: 421 Member
    #10
    bigworm72 said:

    First round
    Just got back from hospital.My son had 16 teeth pulled and had a trach put in, he hates it.
    Next week is the PEG tube. For those of you who had been there, Is the hospital stay overnight, 2-3 days or what. I'm trying to plan ahead for the stay. Has anyone had that much teeth pulled? He didn't even have cavities.

    Teeth pulled
    I had 12 pulled prior to treatment. This included my 4 wisdom teeth and 8 molars, so it was 3 teeth from each side upper and lower. Mine had to be done while I was awake because the oral surgeon was afraid because my tongue was so large due to the tumor that I wouldn't get enough air if something should happen so I was awake. Not my first choice but better than having to have them done in the hospital.

    Ask about fluoride trays which can be made after the teeth are pulled. Keep up good oral hygiene as much as possible.

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