Is it possible to have almost no side effects of tongue radiation?

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Comments

  • Sam999
    Sam999 Member Posts: 319 Member
    #22
    Skiffin16 said:

    That's ODD...., now we're EVEN
    Are you 100% sure about that....LOL

    OK, I'll consider your explaination...have no clue how accurate it is, LOL.

    But at least it sounds good.

    Even in college I had some professors that would give you credit even for the wrong answer if you had a good arguement...

    Best,
    John

    Radiologist explaination

    I had my appointment with radiologist and she explained that theres is 90% chance that i am completely cured and do not require radiation. But the problem is that if i do fall in the 10% side than things can go bad in 6 months to a year to a point it might get too late for treatment or have far more complications. She said it really hurts her to put me thru this for the 10% chance but she has no choice as things can go really bad really fast. She said tongue cancer is the most aggresive form of cancer.

    Based on this, we have finalised to go for radiation. It is going to be in my entire tongue plus the neck lymph nodes so it is going to be pretty brutal, she has not suggested putting a feeding tube yet.

    I am so scared but i keep reading inspiring things written by everyone who has gone thru this. This site is life saver for me.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #23
    Sam999 said:

    Radiologist explaination

    I had my appointment with radiologist and she explained that theres is 90% chance that i am completely cured and do not require radiation. But the problem is that if i do fall in the 10% side than things can go bad in 6 months to a year to a point it might get too late for treatment or have far more complications. She said it really hurts her to put me thru this for the 10% chance but she has no choice as things can go really bad really fast. She said tongue cancer is the most aggresive form of cancer.

    Based on this, we have finalised to go for radiation. It is going to be in my entire tongue plus the neck lymph nodes so it is going to be pretty brutal, she has not suggested putting a feeding tube yet.

    I am so scared but i keep reading inspiring things written by everyone who has gone thru this. This site is life saver for me.

    Percentages...
    OK, my take on percentages.....

    Don't buy into them.

    Everyone is different, you have no idea whom fell into those groups of percentages, their general health or background, genetics, family history, or the motivation behind the scenes on who was doing the research, etc...

    You are you, not a number, and have your own set of specifics going in.

    Concentrate on you, staying as healthy as you can, taking in calories, staying super hydrated, and remaining positive of mind, body and spirit.

    Based solely on the survivors that I have seen on this site during the last 3+ years. You have an excellent chance of beating this depending on your treatment.

    My thoughts and prayers go out to you and Dre, along with all of the others and their family on here.

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #24
    Skiffin16 said:

    Percentages...
    OK, my take on percentages.....

    Don't buy into them.

    Everyone is different, you have no idea whom fell into those groups of percentages, their general health or background, genetics, family history, or the motivation behind the scenes on who was doing the research, etc...

    You are you, not a number, and have your own set of specifics going in.

    Concentrate on you, staying as healthy as you can, taking in calories, staying super hydrated, and remaining positive of mind, body and spirit.

    Based solely on the survivors that I have seen on this site during the last 3+ years. You have an excellent chance of beating this depending on your treatment.

    My thoughts and prayers go out to you and Dre, along with all of the others and their family on here.

    Best,
    John

    Sam
    To error in C treatment- best way to do that is to error on the side of the aggressive. I would go with your Dr's advice. They'll get you the meds, and you'll be okay. Lot depends on the amount of rads applied, and maybe it won't be so bad. Only time will tell. You do want to make sure the C gets gone, Sam. Everyone is different, but my mouth healed pretty danged good. I was NPC unknown Primary, and my mouth took the biggest hit. I like to think it was my Nutrition intake that allowed the healing to happen as it did. I had a PEG, and had no negative experience with it for 15+ months. Your Drs know best the specifics of your C and what they got planned, so they likely do know best. Just keep them in the Loop as to how your are truly handling their treatment, so they can help all they can. And please keep us updated on how you're doing.

    kcass
  • Sam999
    Sam999 Member Posts: 319 Member
    #25
    Kent Cass said:

    Sam
    To error in C treatment- best way to do that is to error on the side of the aggressive. I would go with your Dr's advice. They'll get you the meds, and you'll be okay. Lot depends on the amount of rads applied, and maybe it won't be so bad. Only time will tell. You do want to make sure the C gets gone, Sam. Everyone is different, but my mouth healed pretty danged good. I was NPC unknown Primary, and my mouth took the biggest hit. I like to think it was my Nutrition intake that allowed the healing to happen as it did. I had a PEG, and had no negative experience with it for 15+ months. Your Drs know best the specifics of your C and what they got planned, so they likely do know best. Just keep them in the Loop as to how your are truly handling their treatment, so they can help all they can. And please keep us updated on how you're doing.

    kcass

    Thanks everyone, yes i will

    Thanks everyone, yes i will definately keep updating once my treatment starts in 3 weeks. It really helps to have support we get from this site.
  • mls351w
    mls351w Member Posts: 90
    #26
    Sam999 said:

    Thanks everyone, yes i will

    Thanks everyone, yes i will definately keep updating once my treatment starts in 3 weeks. It really helps to have support we get from this site.

    radiation side effects
    Sam999, I was diagnosed with scc bot in 2006(53 years old). Given three choices. 1. Surgery and "mild" radiation. 2. No surgery with chemo and "heavier" radiation. 3. Do nothing. We chose chemo and rad. 2 weeks of 24-hr chemo and 8 weeks radiation to tonge and neck(had some lymph node issues). I worked until my second round of chemo.
    Rad onc insisted on a peg before treatment started(thank God). During treatment my throat got so sore I could not swallow anything. I was living on Ensure and water through peg only.
    I had 2nd degree burns on my neck and needed morphine patches(really nasty, slimy affairs. The burns were so bad that I got a 1 week break on rads around 6th week. Sailed through last 2 weeks. Had surgery to remove 5 lymph nodes in neck. Middle node was cancerous others clean.
    Now the good news. I never had any sores or any other issues other than 2 cases of thrush.
    Did loose taste, but it came back really fast with a vengence. Wierd but it seems like food tastes better than before, but some foods taste too salty. Saliva was back to normal within 2 weeks. Gums and teeth are in better shape than before because of the dental hygiene program that I follow faithfully. Lost about 10 lbs. Some nerve loss due to the neck surgery. 5+ years out and no side effects.
    So long story short, don't stress over the possible side effects. They scared me senseless. You may not be as fortunate as I was, but you may not be as unfortunate as others. It effects everyone differently. I tried to remain positive and took one day at a time. I am probably one of the few people who made the journey with only minor difficulties. But, I know others did and you could also be one. Keep positive.
    My best to you and will keep you in my thoughts.

    Mark S.
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #27
    mls351w said:

    radiation side effects
    Sam999, I was diagnosed with scc bot in 2006(53 years old). Given three choices. 1. Surgery and "mild" radiation. 2. No surgery with chemo and "heavier" radiation. 3. Do nothing. We chose chemo and rad. 2 weeks of 24-hr chemo and 8 weeks radiation to tonge and neck(had some lymph node issues). I worked until my second round of chemo.
    Rad onc insisted on a peg before treatment started(thank God). During treatment my throat got so sore I could not swallow anything. I was living on Ensure and water through peg only.
    I had 2nd degree burns on my neck and needed morphine patches(really nasty, slimy affairs. The burns were so bad that I got a 1 week break on rads around 6th week. Sailed through last 2 weeks. Had surgery to remove 5 lymph nodes in neck. Middle node was cancerous others clean.
    Now the good news. I never had any sores or any other issues other than 2 cases of thrush.
    Did loose taste, but it came back really fast with a vengence. Wierd but it seems like food tastes better than before, but some foods taste too salty. Saliva was back to normal within 2 weeks. Gums and teeth are in better shape than before because of the dental hygiene program that I follow faithfully. Lost about 10 lbs. Some nerve loss due to the neck surgery. 5+ years out and no side effects.
    So long story short, don't stress over the possible side effects. They scared me senseless. You may not be as fortunate as I was, but you may not be as unfortunate as others. It effects everyone differently. I tried to remain positive and took one day at a time. I am probably one of the few people who made the journey with only minor difficulties. But, I know others did and you could also be one. Keep positive.
    My best to you and will keep you in my thoughts.

    Mark S.

    Thanks, Mark
    for the encouragement. My radiation starts the 7th and as Sam, I am scared about the side effects. I talked to my rad/onc about all the different tips I read on these boards and he said it wasn't needed in my case, such as the PEG. You truly give me courage and since I HAVE to do it, I'm trying to go into it with a positive attitude, hoping for the best outcome (which of course is NO reoccurence). I don't have to do chemo, for which I'm thankful!
  • RayTodd
    RayTodd Member Posts: 187
    #28
    Skiffin16 said:

    Percentages...
    OK, my take on percentages.....

    Don't buy into them.

    Everyone is different, you have no idea whom fell into those groups of percentages, their general health or background, genetics, family history, or the motivation behind the scenes on who was doing the research, etc...

    You are you, not a number, and have your own set of specifics going in.

    Concentrate on you, staying as healthy as you can, taking in calories, staying super hydrated, and remaining positive of mind, body and spirit.

    Based solely on the survivors that I have seen on this site during the last 3+ years. You have an excellent chance of beating this depending on your treatment.

    My thoughts and prayers go out to you and Dre, along with all of the others and their family on here.

    Best,
    John

    I am confused 100%
    All I know is what is said the most here we are all individuals our bodies all react individually.
    I am 5 months out with just Rads and am scaring them with how well I am doing,but I have a totally dry mouth and not full taste pallet.
    I lost a ton of weight but they could not put a peg in as from previous ops some of my intestines are attached to my stomach by scar lesions. So they put a naso gastric tube in it was one of the worst procedures I have ever had.It is temporary so as soon as I could I had to drink those tins of vitamised baby nappies. My throat and mouth was to sore even with anesthetic wash to swallow, and my tabs were nearly hell to take. Heres the weird part they gave me soluable panadol and meds wherever possible which was grate but all of a sudden just to keep it interesting panadol and other thing felt like acid in my mouth and throat anything to keep it interesting.
    But I kept cracking jokes making others feel better which made me feel better,even when they put me in hospital for 2 weeks in a ward where almost everyone else was dying, even my wife and daughter both Reg. Nurses said as ill as I was I was he healthiest one on the floor, I suppose the staff did it to boost my moral LOL.
    Wow this is the most I have ever explained hehehe but again we are all different its great to hear others who have had it tough but come through with varying after effects as for me I have what I consider tiny probs compared to some of my friends in real life who are terminal and on a very short time schedule.
    We have a saying " every day above ground is a bonus" but I had an old bloke crack me up with his, he said every day before he get out of bed he does a little exercise he has hi arms bent and fists clenched and pushes his elbows out expanding his chest and if his elbows do not touch wood its going to be a good day.LOL
  • Sam999
    Sam999 Member Posts: 319 Member
    #29
    RayTodd said:

    I am confused 100%
    All I know is what is said the most here we are all individuals our bodies all react individually.
    I am 5 months out with just Rads and am scaring them with how well I am doing,but I have a totally dry mouth and not full taste pallet.
    I lost a ton of weight but they could not put a peg in as from previous ops some of my intestines are attached to my stomach by scar lesions. So they put a naso gastric tube in it was one of the worst procedures I have ever had.It is temporary so as soon as I could I had to drink those tins of vitamised baby nappies. My throat and mouth was to sore even with anesthetic wash to swallow, and my tabs were nearly hell to take. Heres the weird part they gave me soluable panadol and meds wherever possible which was grate but all of a sudden just to keep it interesting panadol and other thing felt like acid in my mouth and throat anything to keep it interesting.
    But I kept cracking jokes making others feel better which made me feel better,even when they put me in hospital for 2 weeks in a ward where almost everyone else was dying, even my wife and daughter both Reg. Nurses said as ill as I was I was he healthiest one on the floor, I suppose the staff did it to boost my moral LOL.
    Wow this is the most I have ever explained hehehe but again we are all different its great to hear others who have had it tough but come through with varying after effects as for me I have what I consider tiny probs compared to some of my friends in real life who are terminal and on a very short time schedule.
    We have a saying " every day above ground is a bonus" but I had an old bloke crack me up with his, he said every day before he get out of bed he does a little exercise he has hi arms bent and fists clenched and pushes his elbows out expanding his chest and if his elbows do not touch wood its going to be a good day.LOL

    It seems like radiation side
    It seems like radiation side affects truely differ from person to person but at the end we will all get thru. It seems percentage of lucky folks who have less side affects is low but it is a possibility and that small possibility gives me a hope.
  • pamy
    pamy Member Posts: 2
    #30
    jtl said:

    I did not have the PEG like
    I did not have the PEG like a few others but the effects of radiation really do vary from person to person. It can also depend on what type of equipment is being used. Just about everyone gets IMRT but there are newer machines that claim to deliver more precise beams to avoid damaging healthy tissue ie salvia glands. I had the latter but still had uncomfortable mouth sores and a very sore throat. The sore throat started early and lasted a month or more post treatment. They both really only hurt when eating so I learned how to deal with it, think bland creamy soups and nothing spicey. I am retired so work was not an issue but I could have easily worked during treatment. Good luck, you will be fine.
    John

    Proton therapy?

    Hi John-

    Just researching treatment options and wondered if you had Proton vs IMRT.  Although they have not confirmed it improves outcomes, I believe they have proven it reduces some of the awful 'after treatment is over' permanent side effects, namely dry mouth and damage to teeth.  Can you give me your opinion on this, please?  Since you are one year out, are you able to tell me if you are back to your 'old normal' or are you left with any problems?

    Thank you so very much.

    Pam

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #31
    pamy said:

    Proton therapy?

    Hi John-

    Just researching treatment options and wondered if you had Proton vs IMRT.  Although they have not confirmed it improves outcomes, I believe they have proven it reduces some of the awful 'after treatment is over' permanent side effects, namely dry mouth and damage to teeth.  Can you give me your opinion on this, please?  Since you are one year out, are you able to tell me if you are back to your 'old normal' or are you left with any problems?

    Thank you so very much.

    Pam

    Hi Pam ...

     

     

     

     

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #32
    pamy said:

    Proton therapy?

    Hi John-

    Just researching treatment options and wondered if you had Proton vs IMRT.  Although they have not confirmed it improves outcomes, I believe they have proven it reduces some of the awful 'after treatment is over' permanent side effects, namely dry mouth and damage to teeth.  Can you give me your opinion on this, please?  Since you are one year out, are you able to tell me if you are back to your 'old normal' or are you left with any problems?

    Thank you so very much.

    Pam

    Hi Pam ...

    I'm not sure what happened to the body of the text earlier??

    You posted a question to John on an old thread ...you may want to create a new thread and ask your question so more folks can see it and respond to it.  I will try and post it for you.

     

    Best,

    Tim

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