My best friend has recently been diagnosed with squamous cell carcinoma at the base of his tongue an

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I'm here hoping to get as much information as possible to help my friend through his radiation and chemo treatments.

I took him to the oral surgeon, he had his molars removed last week in preparation for the radiation part of his treatmnt.

His oncologist has strongly suggested that he have a feeding tube put in (stomach) because his throat will likely be incredibly sore, and he might have trouble swallowing at some point.

Please help me! I need to know as much as possible about both the treatment and the symptoms he will have. He has decided to go to his first treatment (radiation & chemo) by himself, as he thinks he will be fine. I wanted to go with him to be on the safe side, but realizing that he has to do this his way, I agreed.

Thanks for any information that you folks can give me!
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Comments

  • rarph123
    rarph123 Member Posts: 64
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    tounge & siliva gland C
    Had he same as your friend,yes for the feeding tube--some get by with outone but its there if things get to the point where he can'nt swallow.I had 8 chemo (1)each Friday and radation five days a week on a M.R.T.I ? machine. This is where they make a mask of your face with holes to breathe and see and bolt your face down to hold your fave in the right position during treatment.I had 36 0f these treatments and a week out of treatment. He will need your support and this website is great for information and support
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Aggie

    He might be able to handle the radiation by himself but not the chemo. At some point he will need to understand that he will need a support group of friends and family through out his complete treatment. I agree in getting the PEG tube in now as he will be in a lot of pain trying to eat or swallow anything once in treatment for a few weeks.

    What ever you do please don’t let him try driving after taking the chemo, you or someone needs to be there with him. He has no idea what he is in for, so please help him.

    PS: Welcome to CSN and thanks for being a caregiver
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome
    Hello you, and welcome to the forum.....

    I had STGIII SCC HPV+ Tonsil Cancer, sixteen weeks chemo, seven of those concurrent with radiation.

    If the MD's recommend the PEG, I'd go with it. I didn't have one, but that's because my MD's didn't feel I would need it, in my case that worked...90%+ on this forum have had one and highly recommend them.

    Next, I would strongly recommend your friend re-thinking about going to the first session alone.... afterwards if he feels he can handle it, great.

    My wife went with me during most chemo sessions, especially the bigger three dose chemo sessions. During concurrent, I drove myself for a few as I knew my capabilities by then.

    Here is a link to the SuperThread, It's a compilation of very useful information and links, especially for newbies.

    SuperThread

    Lastly, it's a very doable regime', not easy by any means, but doable given the right positive attitude and a strong care giver base.

    Thoughts and Prayers,
    John
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    Skiffin16 said:

    Welcome
    Hello you, and welcome to the forum.....

    I had STGIII SCC HPV+ Tonsil Cancer, sixteen weeks chemo, seven of those concurrent with radiation.

    If the MD's recommend the PEG, I'd go with it. I didn't have one, but that's because my MD's didn't feel I would need it, in my case that worked...90%+ on this forum have had one and highly recommend them.

    Next, I would strongly recommend your friend re-thinking about going to the first session alone.... afterwards if he feels he can handle it, great.

    My wife went with me during most chemo sessions, especially the bigger three dose chemo sessions. During concurrent, I drove myself for a few as I knew my capabilities by then.

    Here is a link to the SuperThread, It's a compilation of very useful information and links, especially for newbies.

    SuperThread

    Lastly, it's a very doable regime', not easy by any means, but doable given the right positive attitude and a strong care giver base.

    Thoughts and Prayers,
    John

    Thanks, John
    Thank you for the information, but most importantly for the prayers! Are you cancer free now?
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    rarph123 said:

    tounge & siliva gland C
    Had he same as your friend,yes for the feeding tube--some get by with outone but its there if things get to the point where he can'nt swallow.I had 8 chemo (1)each Friday and radation five days a week on a M.R.T.I ? machine. This is where they make a mask of your face with holes to breathe and see and bolt your face down to hold your fave in the right position during treatment.I had 36 0f these treatments and a week out of treatment. He will need your support and this website is great for information and support

    radiation
    Thanks so much for the info. My friend had the mask fitted on Monday, but his mouth has to be healed before he can actually start the treatments.
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    Hondo said:

    Hi Aggie

    He might be able to handle the radiation by himself but not the chemo. At some point he will need to understand that he will need a support group of friends and family through out his complete treatment. I agree in getting the PEG tube in now as he will be in a lot of pain trying to eat or swallow anything once in treatment for a few weeks.

    What ever you do please don’t let him try driving after taking the chemo, you or someone needs to be there with him. He has no idea what he is in for, so please help him.

    PS: Welcome to CSN and thanks for being a caregiver
    Hondo

    thank you!
    Hondo,

    Thanks so much for the info re: not driving after chemo. His wife died from breast cancer 2 years ago and was able to drive herself to almost all of her treatments. Is there something different about the chemo he will get vs. hers?

    Tks
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    thank you!
    Hondo,

    Thanks so much for the info re: not driving after chemo. His wife died from breast cancer 2 years ago and was able to drive herself to almost all of her treatments. Is there something different about the chemo he will get vs. hers?

    Tks

    Hi there aggiemom
    It really is sort of an individual thing about whether you can work through treatment or drive yourself to an from treatment. I couldn't, and all I had was radiation. For one thing, they had me taking benedryl, which makes me about comatose. Then, the radiation also can make you exhausted. Can also make you extremely nauseasted. Despite the anti-nausea meds, I would end up vomiting on the way home, especially thursdsay-friday, and by the last week, I was really sick. Plus, I was on 75 mcgs of fentanyl. (fentanyl is something like 80-100x more potent than morphine.) So, driving, was not a plan. I never would have made it home. I would come home from radiation, sometimes nodding off in the car, and then I would come home and pass out for 2-5 hrs. Sometimes that was the only sleep I would get.

    Chemo and radiation, and /or the combo of the two will effect everyone differently. You can find out the bulk of the side effects that most of us have endured, and make plans in case they should occur. So maybe your friend can drive, but you guys may want to make arrangements if your friend cannot.

    Wishing your friend only the best.

    sweet
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    Hi there aggiemom
    It really is sort of an individual thing about whether you can work through treatment or drive yourself to an from treatment. I couldn't, and all I had was radiation. For one thing, they had me taking benedryl, which makes me about comatose. Then, the radiation also can make you exhausted. Can also make you extremely nauseasted. Despite the anti-nausea meds, I would end up vomiting on the way home, especially thursdsay-friday, and by the last week, I was really sick. Plus, I was on 75 mcgs of fentanyl. (fentanyl is something like 80-100x more potent than morphine.) So, driving, was not a plan. I never would have made it home. I would come home from radiation, sometimes nodding off in the car, and then I would come home and pass out for 2-5 hrs. Sometimes that was the only sleep I would get.

    Chemo and radiation, and /or the combo of the two will effect everyone differently. You can find out the bulk of the side effects that most of us have endured, and make plans in case they should occur. So maybe your friend can drive, but you guys may want to make arrangements if your friend cannot.

    Wishing your friend only the best.

    sweet

    cancer
    Thanks, Sweet. Have you completed your treatment? Prayers coming your way!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Thanks, John
    Thank you for the information, but most importantly for the prayers! Are you cancer free now?

    NED
    Well actually I guess the big term here is pretty much known as NED...No Evidence of Disease.

    Yes, I have had several scans that basically say that I have No Evidence of Disease - NED...

    My diagnosis was January 2, 2009, and I finished threatment June 2009.

    Nine weeks (three week cycles) of Chemo - Cisplatin, Taxotere and 5FU. The 5FU was fed through a portable take home pump and a power port that was installed into my chest. That was for 5 days each cycle.

    Then seven weeks of concurrent Chemo/Rads. Weekly Carboplatin and daily radiation (35 days).

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    thank you!
    Hondo,

    Thanks so much for the info re: not driving after chemo. His wife died from breast cancer 2 years ago and was able to drive herself to almost all of her treatments. Is there something different about the chemo he will get vs. hers?

    Tks

    Hi Aggie
    Chemo

    Not to sure all I know is on my Chemo days I was good for nothing but sleeping all day long. I guess it depends on the type of chemo he will be getting.

    Hondo
  • rush1958
    rush1958 Member Posts: 221 Member
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    BOT and two lymph nodes
    Aggiemom2011,

    That was me. I had SCC in the BOT and 2 lymph nodes involved and started treatment in April 2010.

    I had surgery to remove my lymph nodes. That was followed by chemo and radiation about four weeks later. I finished on June 23, 2010.

    Just remember that everyone is different. Many people suffer from the mouth sores, sore throat and trouble swallowing. None of those things ever happened to me. I had a feeding tube put in and never had to use it. But that was me.

    I never really had much pain to speak of. I was prescribed a number of pain killers, but didn't use them.

    Most people seem to have pretty good luck with the host of anti-nausea drugs available to combat chemo side effects. Unfortunately they didn't seem to help me much. Getting a handle on controlling the nausea was my biggest struggle for several weeks. Oh well....my sense of taste was lost for a couple of months and I didn't want to eat anyway.

    I drove myself to radiation treatment everyday. My wife took me to chemo sessions, but they gave me something that made me groggy.

    Good luck on your friend's journey. Head and Neck Cancer treatment is tough on everyone - it's just rougher on some than others.

    Rush
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Hi Aggiemom!
    You've come to a great place to get your questions answered. I was base of tongue, with metastises to lymph nodes on both sides of my neck. Only two or three nodes were really large enough to matter, but several others lit up too. No surgery, I had some limited dental work done before I started, but no extractions. A surgery to remove and biopsy the largest lymph node. A later surgery to remove my tonsils, and hunt down my primary tumor... and then eight weeks of radiation with concurrent Cisplatin chemotherapy.

    I had a feeding tube, and it became my friend. I didn't start out with one, but I got it at about the four-week point, as that's when it got too painful to swallow food. I'd recommend the PEG tube over the "G" tube, as it seems to be an easier type to have installed.

    I drove myself to treatment at the start, but always had a driver when I went in for the chemo. Later on when I felt worse, I accepted rides from all sorts of friends and family. I believe it really does depend on the chemo you receive, as I know folks who are getting chemo for breast cancer, and they are out and about a lot more than I ever was.

    I'm just about 15 months out from end of treatment, and doing great. So far so good. I had a clean scan at 3 months and I've got another scan coming up at 18 months.

    Best wishes for your friend. Read the older posts on the board, you'll find information on just about every issue.

    Deb
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    cancer
    Thanks, Sweet. Have you completed your treatment? Prayers coming your way!

    Done!
    Yes, I have been done for quite a while now. A little over two years. I found my lump on 10-9-08. Neck dissection January of 'o9. PEG Tube placed 3/15/09. Done with rads 5-15-09. I had stage four SCC unknown primary.
  • Pam M
    Pam M Member Posts: 2,196
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    Hello - Another Base of Tongue Survivor
    I was diagnosed stage four base of tongue cancer with two lymph nodes involved in Oc tober of 2009. Same chemo and chemo radiation as Skiffin. I later had a neck surgery, and am now a member of "Club NED".

    I am VERY glad that I had a feeding tube installed.

    As for being alone for treatment sessions, I drove myself to my radiation sessions. I did find, however, that on my "big chemo" days, I needed someone to drive me home, because one of the drugs they gave me before the chemo was Bendryl (to minimize potential reactions), and it made me very groggy.

    But, as you'll see often here - EVERYONE's different. Sometimes a normally hale and hearty person will sometimes be unable to do most things on their own for a while. Hope you and your friend have are on the "not fun, but not too bad" end of the treatment spectrum.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    Welcome Aggie
    I also was BOT with some lymph nodes along for the ride. Treatment consisted of 7 weeks of chemo and rads. Finished up in Aug of last year.

    If the Doc's think he should get the feeding tube beforehand, then feeding tube it is. It may become his best friend. My Doc didn't think I would need the feeding tube, so we didn't get one put in. Turns out he was right, though if treatment had lasted much longer, I probably would have needed it. Better safe than sorry.

    Same as the others, I could have driven myself to most of the rad treatments especially in the beginning. Towards the end of the 7 weeks, I didn't really feel like it. The first chemo for me was not much of a problem, but the final 2 treatments did knock me down a fair bit. We always took a taxi to treatment, which was easy and simple. Not as extravagant as it sounds, as taxis here are very inexpensive and plentiful. Much easier to let someone else do the driving.

    As John recommended, check out all the info on the 'Superthread'.

    One thing I would add: Encourage your friend to try and stay active. Studies have shown that patients who maintain a moderate level of exercise: May respond better to treatment and may have less severe side effects. It also helps to combat the fatigue which will surely set in. Moderate exercise may be as simple as a 20 minute walk each day. Nothing too strenuous. Cheers.

    Jimbo
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    rush1958 said:

    BOT and two lymph nodes
    Aggiemom2011,

    That was me. I had SCC in the BOT and 2 lymph nodes involved and started treatment in April 2010.

    I had surgery to remove my lymph nodes. That was followed by chemo and radiation about four weeks later. I finished on June 23, 2010.

    Just remember that everyone is different. Many people suffer from the mouth sores, sore throat and trouble swallowing. None of those things ever happened to me. I had a feeding tube put in and never had to use it. But that was me.

    I never really had much pain to speak of. I was prescribed a number of pain killers, but didn't use them.

    Most people seem to have pretty good luck with the host of anti-nausea drugs available to combat chemo side effects. Unfortunately they didn't seem to help me much. Getting a handle on controlling the nausea was my biggest struggle for several weeks. Oh well....my sense of taste was lost for a couple of months and I didn't want to eat anyway.

    I drove myself to radiation treatment everyday. My wife took me to chemo sessions, but they gave me something that made me groggy.

    Good luck on your friend's journey. Head and Neck Cancer treatment is tough on everyone - it's just rougher on some than others.

    Rush

    thank you!
    Hi Rush, I really appreciate your sharing with me about your treatments. Maybe my friend can make it driving himself for a while. He has asked me to come back to help him once he's had a few treatments and sees the need.

    I hope and pray that he will have an experience like yours!!!
  • aggiemom2011
    aggiemom2011 Member Posts: 17
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    Jimbo55 said:

    Welcome Aggie
    I also was BOT with some lymph nodes along for the ride. Treatment consisted of 7 weeks of chemo and rads. Finished up in Aug of last year.

    If the Doc's think he should get the feeding tube beforehand, then feeding tube it is. It may become his best friend. My Doc didn't think I would need the feeding tube, so we didn't get one put in. Turns out he was right, though if treatment had lasted much longer, I probably would have needed it. Better safe than sorry.

    Same as the others, I could have driven myself to most of the rad treatments especially in the beginning. Towards the end of the 7 weeks, I didn't really feel like it. The first chemo for me was not much of a problem, but the final 2 treatments did knock me down a fair bit. We always took a taxi to treatment, which was easy and simple. Not as extravagant as it sounds, as taxis here are very inexpensive and plentiful. Much easier to let someone else do the driving.

    As John recommended, check out all the info on the 'Superthread'.

    One thing I would add: Encourage your friend to try and stay active. Studies have shown that patients who maintain a moderate level of exercise: May respond better to treatment and may have less severe side effects. It also helps to combat the fatigue which will surely set in. Moderate exercise may be as simple as a 20 minute walk each day. Nothing too strenuous. Cheers.

    Jimbo

    BOT cancer
    Thanks, Jimbo. One thing he has going for him is that he's in great physical shape. Before the oral surgery, he was walking, sprinting for about 45 mins. a day. He's back to the exercise now, but has really cut back on how hard he works and distance.

    Poor guy lost his wife to breast cancer in July '09, and when he first got the diagnosis, he thought he was a "goner". Much better now emotionally!

    Thanks again!
  • aggiemom2011
    aggiemom2011 Member Posts: 17
    Options
    Jimbo55 said:

    Welcome Aggie
    I also was BOT with some lymph nodes along for the ride. Treatment consisted of 7 weeks of chemo and rads. Finished up in Aug of last year.

    If the Doc's think he should get the feeding tube beforehand, then feeding tube it is. It may become his best friend. My Doc didn't think I would need the feeding tube, so we didn't get one put in. Turns out he was right, though if treatment had lasted much longer, I probably would have needed it. Better safe than sorry.

    Same as the others, I could have driven myself to most of the rad treatments especially in the beginning. Towards the end of the 7 weeks, I didn't really feel like it. The first chemo for me was not much of a problem, but the final 2 treatments did knock me down a fair bit. We always took a taxi to treatment, which was easy and simple. Not as extravagant as it sounds, as taxis here are very inexpensive and plentiful. Much easier to let someone else do the driving.

    As John recommended, check out all the info on the 'Superthread'.

    One thing I would add: Encourage your friend to try and stay active. Studies have shown that patients who maintain a moderate level of exercise: May respond better to treatment and may have less severe side effects. It also helps to combat the fatigue which will surely set in. Moderate exercise may be as simple as a 20 minute walk each day. Nothing too strenuous. Cheers.

    Jimbo

    BOT cancer
    Thanks, Jimbo. One thing he has going for him is that he's in great physical shape. Before the oral surgery, he was walking, sprinting for about 45 mins. a day. He's back to the exercise now, but has really cut back on how hard he works and distance.

    Poor guy lost his wife to breast cancer in July '09, and when he first got the diagnosis, he thought he was a "goner". Much better now emotionally!

    Thanks again!
  • aggiemom2011
    aggiemom2011 Member Posts: 17
    Options
    Jimbo55 said:

    Welcome Aggie
    I also was BOT with some lymph nodes along for the ride. Treatment consisted of 7 weeks of chemo and rads. Finished up in Aug of last year.

    If the Doc's think he should get the feeding tube beforehand, then feeding tube it is. It may become his best friend. My Doc didn't think I would need the feeding tube, so we didn't get one put in. Turns out he was right, though if treatment had lasted much longer, I probably would have needed it. Better safe than sorry.

    Same as the others, I could have driven myself to most of the rad treatments especially in the beginning. Towards the end of the 7 weeks, I didn't really feel like it. The first chemo for me was not much of a problem, but the final 2 treatments did knock me down a fair bit. We always took a taxi to treatment, which was easy and simple. Not as extravagant as it sounds, as taxis here are very inexpensive and plentiful. Much easier to let someone else do the driving.

    As John recommended, check out all the info on the 'Superthread'.

    One thing I would add: Encourage your friend to try and stay active. Studies have shown that patients who maintain a moderate level of exercise: May respond better to treatment and may have less severe side effects. It also helps to combat the fatigue which will surely set in. Moderate exercise may be as simple as a 20 minute walk each day. Nothing too strenuous. Cheers.

    Jimbo

    BOT cancer
    Thanks, Jimbo. One thing he has going for him is that he's in great physical shape. Before the oral surgery, he was walking, sprinting for about 45 mins. a day. He's back to the exercise now, but has really cut back on how hard he works and distance.

    Poor guy lost his wife to breast cancer in July '09, and when he first got the diagnosis, he thought he was a "goner". Much better now emotionally!

    Thanks again!
  • aggiemom2011
    aggiemom2011 Member Posts: 17
    Options
    Jimbo55 said:

    Welcome Aggie
    I also was BOT with some lymph nodes along for the ride. Treatment consisted of 7 weeks of chemo and rads. Finished up in Aug of last year.

    If the Doc's think he should get the feeding tube beforehand, then feeding tube it is. It may become his best friend. My Doc didn't think I would need the feeding tube, so we didn't get one put in. Turns out he was right, though if treatment had lasted much longer, I probably would have needed it. Better safe than sorry.

    Same as the others, I could have driven myself to most of the rad treatments especially in the beginning. Towards the end of the 7 weeks, I didn't really feel like it. The first chemo for me was not much of a problem, but the final 2 treatments did knock me down a fair bit. We always took a taxi to treatment, which was easy and simple. Not as extravagant as it sounds, as taxis here are very inexpensive and plentiful. Much easier to let someone else do the driving.

    As John recommended, check out all the info on the 'Superthread'.

    One thing I would add: Encourage your friend to try and stay active. Studies have shown that patients who maintain a moderate level of exercise: May respond better to treatment and may have less severe side effects. It also helps to combat the fatigue which will surely set in. Moderate exercise may be as simple as a 20 minute walk each day. Nothing too strenuous. Cheers.

    Jimbo

    BOT cancer
    Thanks, Jimbo. One thing he has going for him is that he's in great physical shape. Before the oral surgery, he was walking, sprinting for about 45 mins. a day. He's back to the exercise now, but has really cut back on how hard he works and distance.

    Poor guy lost his wife to breast cancer in July '09, and when he first got the diagnosis, he thought he was a "goner". Much better now emotionally!

    Thanks again!