Newly diagnosed

Good morning everyone. I was recently as of 2/3/2012 diagnosed with a cancerous tumor on the base of my tongue. Yesterday I had all of my top and bottom back teeth removed. Once all this heals I will begin radiation and chemo treatments. I see my chemo dr. today for the first time and am supposed to get fitted for my mask tomorrow. I realize that everyone is different on how they can and do handle all the issues with treatment. My question is should I look at having a feeding tube put in before or wait? My radiation dr. says that I should be able to handle swallowing things pretty well up till the 3-4 week.

Thanks
Mike
«13

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    controversy
    Surrounds this issue, so you and your team will have to pick what works best for you. I've been treated with radiation now twice. The first was for BOT cancer in 1998, for which I received 35 rad treatments. This time, I had an SCC in the soft palate/left oropharynx and am just tomorrow finishing 34 rad treatments.

    I have not needed a feeding tube either time. The first time I ate solid food all the way through, lost weight just due to low apetite/no taste/poor saliva. This time I've not been able to eat solid food, but liquids have been ok, and I've not lost any weight at all.

    Not everyone is this fortunate, but it wouldn't have been necessary to put a tube in me. Lots do get a tube in advance, that's true. And some need one inserted midway through, or toward the end of treatment if they get to where fluid/calorie requirements are not being met. OTOH, there appears to be a correlation between some of these long term esophageal problems, like stricture, and disuse of the swallowing mechanism, so if you get a tube, push the oral intake to the very best of your abililty.

    Welcome to the club. I'm sure others will weigh in on this.

    Pat
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    controversy
    Surrounds this issue, so you and your team will have to pick what works best for you. I've been treated with radiation now twice. The first was for BOT cancer in 1998, for which I received 35 rad treatments. This time, I had an SCC in the soft palate/left oropharynx and am just tomorrow finishing 34 rad treatments.

    I have not needed a feeding tube either time. The first time I ate solid food all the way through, lost weight just due to low apetite/no taste/poor saliva. This time I've not been able to eat solid food, but liquids have been ok, and I've not lost any weight at all.

    Not everyone is this fortunate, but it wouldn't have been necessary to put a tube in me. Lots do get a tube in advance, that's true. And some need one inserted midway through, or toward the end of treatment if they get to where fluid/calorie requirements are not being met. OTOH, there appears to be a correlation between some of these long term esophageal problems, like stricture, and disuse of the swallowing mechanism, so if you get a tube, push the oral intake to the very best of your abililty.

    Welcome to the club. I'm sure others will weigh in on this.

    Pat

    PS
    YOu can have my mask, Mike. I'm done with it tomorrow:)
  • RushFan
    RushFan Member Posts: 224

    controversy
    Surrounds this issue, so you and your team will have to pick what works best for you. I've been treated with radiation now twice. The first was for BOT cancer in 1998, for which I received 35 rad treatments. This time, I had an SCC in the soft palate/left oropharynx and am just tomorrow finishing 34 rad treatments.

    I have not needed a feeding tube either time. The first time I ate solid food all the way through, lost weight just due to low apetite/no taste/poor saliva. This time I've not been able to eat solid food, but liquids have been ok, and I've not lost any weight at all.

    Not everyone is this fortunate, but it wouldn't have been necessary to put a tube in me. Lots do get a tube in advance, that's true. And some need one inserted midway through, or toward the end of treatment if they get to where fluid/calorie requirements are not being met. OTOH, there appears to be a correlation between some of these long term esophageal problems, like stricture, and disuse of the swallowing mechanism, so if you get a tube, push the oral intake to the very best of your abililty.

    Welcome to the club. I'm sure others will weigh in on this.

    Pat

    No tube here...
    Hi Mike,
    I'm almost two years post treatment for SCC. Radiation (35 days) and chemotherapy (once per week for seven weeks-cisplatin)

    My first appt. with my rad oncologist, I was advised by a nurse during the initial interview that I "will need a feeding tube, plan on getting one put in before treatment".
    I remember looking at my wife saying "I do not want one of those"...

    Ten miunutes later...my radiologist said no I wouldn't need the tube.

    He felt that with my age (48), weight (210), good physical condition and attitude I would be fine without a tube. My doctor was correct. After week three I was drinking ensure / boost exclusively. I did drop to 175 lbs. It was not easy...toward the end of treatments my doctor warned me if I lost more weight a tube might be necessary.

    I'm back to 200 lbs. now...and really don't want or need to gain anymore weight back.

    All the best to you and your family during this difficult time.
    You can do it!

    Chuck.
  • osmotar
    osmotar Member Posts: 1,006
    Welcome
    I finsished my main chemo treatments in Oct 2011, I was able to eaat solid foods thru out, then started 39/39 rad treatments with a 1 day aweek chemo treatment in Nov. I asked my rad doc about a feedinf tube and he said so long as I didn't loose more than 2-3 lbs of weight a week or a total 10% of my body weight he was not going to have one placed, since I had extra weight to loose I was ok. I lost some saliva functionand taste about week 4, but I continued to eat whether or not I could taste, plus I supplemented with ensure and boot, I never had any issues with swallowing. As for the mask the fitting isn't bad, but if your the least bit claustophobic they can perscribe something, my rad doc gave me a script for ativan, I used it once. The only issue I had with the mask was during the trial run it was rubbing my eye lids, I asked them to cut out the eyes, and after that it was very doable.

    Best of the best in your treatment,take a day at a time, stay positive and before you know it will all be over.

    Linda
  • Redwngs
    Redwngs Member Posts: 14
    osmotar said:

    Welcome
    I finsished my main chemo treatments in Oct 2011, I was able to eaat solid foods thru out, then started 39/39 rad treatments with a 1 day aweek chemo treatment in Nov. I asked my rad doc about a feedinf tube and he said so long as I didn't loose more than 2-3 lbs of weight a week or a total 10% of my body weight he was not going to have one placed, since I had extra weight to loose I was ok. I lost some saliva functionand taste about week 4, but I continued to eat whether or not I could taste, plus I supplemented with ensure and boot, I never had any issues with swallowing. As for the mask the fitting isn't bad, but if your the least bit claustophobic they can perscribe something, my rad doc gave me a script for ativan, I used it once. The only issue I had with the mask was during the trial run it was rubbing my eye lids, I asked them to cut out the eyes, and after that it was very doable.

    Best of the best in your treatment,take a day at a time, stay positive and before you know it will all be over.

    Linda

    My biggest concern is with
    My biggest concern is with radiation and chemo at the same time for 6-8 weeks. At the moment of course I need to let my mouth heal from the dentist. But other than a sore throat and the occasional other pains that are associated with this I am doing relatively well. I am actually surprised that Ibuprofen is working better than the stronger drugs they gave me. I figure on the middle of March give or take that I will start treatments. My biggest concern and they know this is that I want this done and my healing process to start no later than the beginning of May for my daughters graduation in June. If I can get by without the feeding tube and eat roughly 1500 calories a day I should be good.

    Mike
  • kimmygarland
    kimmygarland Member Posts: 312
    Redwngs said:

    My biggest concern is with
    My biggest concern is with radiation and chemo at the same time for 6-8 weeks. At the moment of course I need to let my mouth heal from the dentist. But other than a sore throat and the occasional other pains that are associated with this I am doing relatively well. I am actually surprised that Ibuprofen is working better than the stronger drugs they gave me. I figure on the middle of March give or take that I will start treatments. My biggest concern and they know this is that I want this done and my healing process to start no later than the beginning of May for my daughters graduation in June. If I can get by without the feeding tube and eat roughly 1500 calories a day I should be good.

    Mike

    Get the Tube
    My husband had chemo/rads in 2009 and made it through without the tube. It was a huge struggle and we said if we had to do it over again, we'd have gotten the tube. WELL, the cancer came back in 2010 and he had big surgery to remove it and doc required the tube. He has been tube fed since then, although in the last couple of months he has been swallowing liquids. As luck would have it (not), we just found out that the cancer is back. We are in the midst of them deciding on treatment, but he likely will be having surgery, chemo and rads again. I am thankful he has the tube this time and at least we don't have to worry about THAT.

    So sorry to hear of your diagnosis - but you will beat it!
  • Redwngs
    Redwngs Member Posts: 14

    PS
    YOu can have my mask, Mike. I'm done with it tomorrow:)

    Thanks I think. lol

    Thanks I think. lol
  • Redwngs
    Redwngs Member Posts: 14

    Get the Tube
    My husband had chemo/rads in 2009 and made it through without the tube. It was a huge struggle and we said if we had to do it over again, we'd have gotten the tube. WELL, the cancer came back in 2010 and he had big surgery to remove it and doc required the tube. He has been tube fed since then, although in the last couple of months he has been swallowing liquids. As luck would have it (not), we just found out that the cancer is back. We are in the midst of them deciding on treatment, but he likely will be having surgery, chemo and rads again. I am thankful he has the tube this time and at least we don't have to worry about THAT.

    So sorry to hear of your diagnosis - but you will beat it!

    Get the Tube
    Thanks for the input. I realize I have a lot of decisions to make as I move forward. Trying to figure out which ones are the right ones is difficult.
  • ratface
    ratface Member Posts: 1,337 Member
    Redwngs said:

    Get the Tube
    Thanks for the input. I realize I have a lot of decisions to make as I move forward. Trying to figure out which ones are the right ones is difficult.

    You will make the right decisions
    based on who you are and what is right for you. You already know this. You know what kind of pain tolerance and willpower you have as an individual. What you don't know is that things can go terribly wrong in a hurry because of malnutrition. Malnutrition kills 1/3 of all cancer patients for a vast host of reasons such as treatment, side effects of treatment and medication, depression, and ignorance. The feeding tube gives you an additional tool in your arsenal to fight malnutrition, when in extreme cases, things go South. Do some reading here and see how many folks wind up hospitalized mid treatment for variable complications. In the end it's a risk/tolerance decision based on the aggregate circumstances. I personally had a very difficult time getting the damn thing put in. It was perhaps the worst part of the entire process for me as far as pain. I don't tolerate it well. In spite of that I would still vote in favor of just plain old, "being prepared" It's a hot topic around here and many good threads on the subject. Welcome to the board.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Redwngs said:

    Get the Tube
    Thanks for the input. I realize I have a lot of decisions to make as I move forward. Trying to figure out which ones are the right ones is difficult.

    Ratface is a wise man
    and I'm not saying that tongue-in-cheek. You won't make bad choices regarding the tube, only good ones. Don't obsess on it. Just move ahead. Earlier, someone talked about the physical requirements his treatment team had in order NOT to get a tube. That probably makes some sense. In my case, these things were talked about as well. My choice not to get one was individualized by considering a bunch of factors known to us before we began. I already had a track record of tolerating rads well, plus I had a surgery last year, that grafted a new bunch of normal, unirradiated tissue into my throat--- that didn't ulcerate during this treatment either.


    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Straight to the Woop Azz Question, LOL...
    LOL, just teasing Mike....

    First off, welcome to our little neck of the internet...great folks here.

    Here is the SuperThread mentioned...tons of great info contributed by many, put to a link by Dawn (Sweetblood)....

    SuperThread

    Oh, and don't post on her thread or she'll hunt you down and put a VooDoo hex on your azz...

    I know...

    ....))(....
    ...(ړײ)...
    ...«▓»....
    J..╝╚...G

    I was Dx in Jan2009 - STGIII SCC Tonsils and a secondary lymphnode, HPV+.

    Nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), followed with seven weeks of concurrent chemo/rads - weekly Carboplatin and daily rads for 35 days.

    Like some, I didn't have a PEG, didn't refuse it, I would have had it if prescribed. It wasn't prescribed, but was discussed as an option if I ever did need it.

    For me, I never did and never had any problems because of not having it.

    I did switch over to Ensure Plus, water and a few sliced peaches in light syrup several times a day. The Ensure at 350 calories per can gave me the most bang for the buck with the least pain.

    I did numb the throat with liquid meds first hydrocodon or oxidcotin, then chased the feeding with a ground up percocet to knock the edge off of the pain to follow.

    For me that all worked out great....

    If you happen to be pretty thin or even on the lower normal side, or any other issues going on though, a PEG would definitely be my recommendation.

    Lastly, you can make it, we all have...not an easy road, but very doable...

    So that little guy inside you that is shaking, just tell him to put on his combat boots and get ready for battle.

    Maintain a positive attitude, and hydrate, hydrate and ohhh, hydrate some more once you are fighting the war.

    Best,
    John


    ....))(....
    ...(ړײ)...
    ...«▓»....
    J..╝╚...G
  • Hal61
    Hal61 Member Posts: 655
    Tube before any treatment for me
    As I've recounted before, I was never given a choice. My docs said get the tube before treatment, so I did. Outpatient insertion, no pain, ever. I got the long tube (old school) which seems to be a better choice if you get a choice.

    I could swallow throughout, but was glad I didn't have to eat, because the meals being served during my treatment weren't fit for human consumption. I did make sure I swallowed lots of water and occasional shakes to keep the swallow going and never had stricture probs. Got so used to it I used to regularly get up to get something while "feeding" and topple the pole, and bag of liquid food.

    Save yourself some adhesive tape, and create a "cumberbund" by folding a wide ace bandage lengthwise and joining it with a couple of safety pins. Leave the open side up, and tuck your tube into it when not eating or going out. Otherwise, you'll be removing tape residue late into the night.

    best, Hal
  • Greg53
    Greg53 Member Posts: 849
    ratface said:

    You will make the right decisions
    based on who you are and what is right for you. You already know this. You know what kind of pain tolerance and willpower you have as an individual. What you don't know is that things can go terribly wrong in a hurry because of malnutrition. Malnutrition kills 1/3 of all cancer patients for a vast host of reasons such as treatment, side effects of treatment and medication, depression, and ignorance. The feeding tube gives you an additional tool in your arsenal to fight malnutrition, when in extreme cases, things go South. Do some reading here and see how many folks wind up hospitalized mid treatment for variable complications. In the end it's a risk/tolerance decision based on the aggregate circumstances. I personally had a very difficult time getting the damn thing put in. It was perhaps the worst part of the entire process for me as far as pain. I don't tolerate it well. In spite of that I would still vote in favor of just plain old, "being prepared" It's a hot topic around here and many good threads on the subject. Welcome to the board.

    My 2 cents
    Hi Mike,

    Sorry you find yourself here, but welcome to a great group of people. First off, check out Sweetblood's SuperThread post - lots of good info for newbies and veterans alike. As has been pointed out the peg/tube can be a bit controversial. (I am still waiting for the MMA video of Skiff versus Kent and AB).

    If you trust your team of docs, listen to what they say about it. I think different teams of docs have as many different opinions as we do on this. But consider your own health and what kind of shape you are currently in along with your weight. As Rat says - you'll make the right decision.

    The common saying here is - Everyone is Different. So to complete that I'll give my experience. Like others I was in good shape, exercised regularly and was at 5'-11" and 215#. I did not start with a PEG but at week 5 of rads my rad guy said I had the worst set of ulcers on tongue and mouth he had seen (not trying to scare here). At that point it was taking me 2 hours to finish 1 ensure, so at that time I opted for the PEG. The not eating along with heavy phelgm and gagging and throwing up (hint- get a suction machine for this) made getting the PEG a no-brainer option. I had dropped to 150# by then. I kept the PEG and used it for 7 months. I didn't want to get it, but it saved my rear-end and for me was not a big deal. I always practiced swallowing and luckily had no issues with that later on.

    Good luck, keep posting and this all will go much faster than you think it will. BTW - 22 months post treatment, doing well and back up to 180#.

    Positive thoughts to you!
    Greg

    ps- are you a hockey fan or a fan of the work boots??? Go Blues!
  • Redwngs
    Redwngs Member Posts: 14
    Greg53 said:

    My 2 cents
    Hi Mike,

    Sorry you find yourself here, but welcome to a great group of people. First off, check out Sweetblood's SuperThread post - lots of good info for newbies and veterans alike. As has been pointed out the peg/tube can be a bit controversial. (I am still waiting for the MMA video of Skiff versus Kent and AB).

    If you trust your team of docs, listen to what they say about it. I think different teams of docs have as many different opinions as we do on this. But consider your own health and what kind of shape you are currently in along with your weight. As Rat says - you'll make the right decision.

    The common saying here is - Everyone is Different. So to complete that I'll give my experience. Like others I was in good shape, exercised regularly and was at 5'-11" and 215#. I did not start with a PEG but at week 5 of rads my rad guy said I had the worst set of ulcers on tongue and mouth he had seen (not trying to scare here). At that point it was taking me 2 hours to finish 1 ensure, so at that time I opted for the PEG. The not eating along with heavy phelgm and gagging and throwing up (hint- get a suction machine for this) made getting the PEG a no-brainer option. I had dropped to 150# by then. I kept the PEG and used it for 7 months. I didn't want to get it, but it saved my rear-end and for me was not a big deal. I always practiced swallowing and luckily had no issues with that later on.

    Good luck, keep posting and this all will go much faster than you think it will. BTW - 22 months post treatment, doing well and back up to 180#.

    Positive thoughts to you!
    Greg

    ps- are you a hockey fan or a fan of the work boots??? Go Blues!

    Thanks for the info.
    Thanks for the info. Detroit Redwings all the way.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Redwngs said:

    My biggest concern is with
    My biggest concern is with radiation and chemo at the same time for 6-8 weeks. At the moment of course I need to let my mouth heal from the dentist. But other than a sore throat and the occasional other pains that are associated with this I am doing relatively well. I am actually surprised that Ibuprofen is working better than the stronger drugs they gave me. I figure on the middle of March give or take that I will start treatments. My biggest concern and they know this is that I want this done and my healing process to start no later than the beginning of May for my daughters graduation in June. If I can get by without the feeding tube and eat roughly 1500 calories a day I should be good.

    Mike

    PEG
    Hi Mike,

    I went through 7 weeks of rads with 3 chemos at weeks 1, 4 & 7 for base of tongue scc. My docs didn't believe I would need the PEG, so we didn't put it in. I made it through treatment without needing it, though it was always an option if the need arose. My weight dropped from 180 to 155.

    Food is medicine for the body to help it withstand and recover from the rigors of treatment. There are no style points for getting through this without the PEG. If your med team recommends it, get it put in. If the need for it arises later, get it put in. If you want to err on the side of caution, get it put in.

    Best of luck with your treatment and stay strong. You can make it through this. I am 18 months and doing A-OK. One more thing, Go Blackhawks! Cheers.,

    Jimbo
  • George_Baltimore
    George_Baltimore Member Posts: 303
    To tube or not to tube
    I underwent my tube decision back in January 2004. Being hardheaded, I resisted my doctor's advice and thought I would be able to swallow with my base of tongue cancer too. WRONG. After becoming very weakened, I had no choice. The day after it was put in, I ended up being hospitalized for a week. During the course of that first year, I went from 220 pounds to 129. I had the tube taken out in December of 2004. My weight went up to 150 up until fairly recently which brings me to my next warning. Don't feel too confident about the teeth extractions preventing necrosis. For your sake, I really hope it does. In my case, it didn't. I had all my remaining teeth pulled before radiation started because they weren't in the best of shape. Last year, my gum started opening up on the left side which was the side my cancer was on. It progressively got worse opening further and further. I was told that the mandible was dead. I opted to have part of my jawbone taken out and replaced with a part of my fibula. To make a long story short, that didn't work either. The things I have said are not meant to scare but to make you more aware that things don't always work out the way they are supposed to. When i made my decisions, I thought everything would work out right. Oh, by the way, my tube is back in.
  • jim and i
    jim and i Member Posts: 1,788 Member
    Get tube
    The tube has been a life saver for my husband. He never had the pain of eatting but everything tasted like pooo to him. Now, six months after treatment, he can taste some things but the swelling in the throat limits him to liquids and purees.
  • adventurebob
    adventurebob Member Posts: 691
    Pro-Tube
    Hi Mike,

    Sorry to read about your cancer. You came to the right spot for support though we all have different opinions based on our own experiences and what we've witnessed here on the board. My personal tube experience has been that I would have been in big trouble without it and it would have been horrible to have it installed after I'd already started radiation. The issue wasn't so much one of getting some things down but more one of getting enough nutrition down to stay strong and heal. The body needs 2000+ calories daily with the right combination of nutrients to keep going and to keep healing; regardless of how overweight it might be. Having weight to lose should not be a deciding factor at this point. Bottom line is nobody should be nutritionally deficient going through radiation. PEG tube insures that won't happen. There have been many stories on this board of people who opted not to get one prior to treatment and ended up hospitalized having to get one after days without nutrition. Often their treatment was halted and definitely their health was further compromised and their pain unnecessarily increased. There were also people who made it through without one but even in their stories you generally hear that they got minimal nutrition throughout treatment. This is not the time to be nutritionally compromised. My suggestion to anyone getting radiation to the head and neck is always going to be to get the tube prior to starting radiation. Wishing you strength, comfort and rapid healing during this time. Go get it!

    AB
  • hawk711
    hawk711 Member Posts: 566

    Pro-Tube
    Hi Mike,

    Sorry to read about your cancer. You came to the right spot for support though we all have different opinions based on our own experiences and what we've witnessed here on the board. My personal tube experience has been that I would have been in big trouble without it and it would have been horrible to have it installed after I'd already started radiation. The issue wasn't so much one of getting some things down but more one of getting enough nutrition down to stay strong and heal. The body needs 2000+ calories daily with the right combination of nutrients to keep going and to keep healing; regardless of how overweight it might be. Having weight to lose should not be a deciding factor at this point. Bottom line is nobody should be nutritionally deficient going through radiation. PEG tube insures that won't happen. There have been many stories on this board of people who opted not to get one prior to treatment and ended up hospitalized having to get one after days without nutrition. Often their treatment was halted and definitely their health was further compromised and their pain unnecessarily increased. There were also people who made it through without one but even in their stories you generally hear that they got minimal nutrition throughout treatment. This is not the time to be nutritionally compromised. My suggestion to anyone getting radiation to the head and neck is always going to be to get the tube prior to starting radiation. Wishing you strength, comfort and rapid healing during this time. Go get it!

    AB

    Trust Adventurebob
    I agree 100% with AB. The tube insertion is easy when you feel good. But it would be a pain to get it done when you are feeling poorly, trust us on this.
    You can get the tube and not use it if you don't need to, but as AB says, you need nutrition and this will give you strength. I didn't want one and ended up using it for 13 months with great appreciation.

    Good luck as you start this journey. It will be tough, but the treatment does work. We are proof of that.
    All the best
    Steve
  • nwasen
    nwasen Member Posts: 235 Member
    hawk711 said:

    Trust Adventurebob
    I agree 100% with AB. The tube insertion is easy when you feel good. But it would be a pain to get it done when you are feeling poorly, trust us on this.
    You can get the tube and not use it if you don't need to, but as AB says, you need nutrition and this will give you strength. I didn't want one and ended up using it for 13 months with great appreciation.

    Good luck as you start this journey. It will be tough, but the treatment does work. We are proof of that.
    All the best
    Steve

    To be tubed or not to be tubed.....that is the question
    My doc really didn't want me to have a tube BUT after going from 134 to 90 some pounds at about 3 weeks into radiation I had the tube put in. I hate to think how much more I would have lost had it not been for my friend the tube.
    I had a real love/hate thing with the tube. Just be sure to keep putting something down your throat. I didn't.....not even any liquids. Luckily I have had great recovery..after a few stretches and two months of therapy when having the tube out..I am now up to 105 pounds (I am only 5').
    I do have to be honest and say giving up the tube and forcing myself to eat was a chore. I can look back now and think it wasn't so bad, but at the time it was hard. I guess it is the easy route to just pour your nutrients down and not have to work at eating. And that was why my doc was against the tube at the start.
    If I had it to do over again? I would go for the tube but be sure to use my throat as much as humanly possible.
    Best to you and keep us in the loop.
    Nancy