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

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Comments

  • aggiemom2011
    aggiemom2011 Member Posts: 17
    #22
    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
    #23
    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
    #24
    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
    #25
    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
    #26
    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
    #27
    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!
  • jeepman
    jeepman Member Posts: 109
    #28
    I cannot say enough about the PEG
    Aggiemom,

    I was diagnosed stage 4 SCC, BOT and right tonsil primary with right neck nodes involved. Being in great shape going into treatment is going to really help him. Don't get me wrong here, treatment really kicked my arse. But coming out of it was like a rocket ship due to overall condition going in. I did reluctantly have a tube installed in week 5, but I had no choice, all of the naseau, sore throat, loss of appetite took it's toll. I went into treatment at a solid 190 and came out at 144. All of it was hard earned muscle. The good news is he will make it through this and bounce back quicker due to his health.
    Absolutely get the tube. As for him riding solo, don't worry, he will not do that too much longer. I have not met anyone that did surgery, chemo and rads and walked alone....it is just too painful.

    My prayers and thoughts are with you and your friend.

    Mike
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #29
    jeepman said:

    I cannot say enough about the PEG
    Aggiemom,

    I was diagnosed stage 4 SCC, BOT and right tonsil primary with right neck nodes involved. Being in great shape going into treatment is going to really help him. Don't get me wrong here, treatment really kicked my arse. But coming out of it was like a rocket ship due to overall condition going in. I did reluctantly have a tube installed in week 5, but I had no choice, all of the naseau, sore throat, loss of appetite took it's toll. I went into treatment at a solid 190 and came out at 144. All of it was hard earned muscle. The good news is he will make it through this and bounce back quicker due to his health.
    Absolutely get the tube. As for him riding solo, don't worry, he will not do that too much longer. I have not met anyone that did surgery, chemo and rads and walked alone....it is just too painful.

    My prayers and thoughts are with you and your friend.

    Mike

    Tell your friend to ask about a mic-key instead of a g tube.
    Aggiemom!
    Thank Goodness for friends like you! the mic-key is a little button, same concept as a G tube but a big improvement. Go on U tube there are many videos about it! He must keep up his strength and nutrition. Weight loss is a serious problem during treatment. With the Mic-key at least he will be getting the nutrients that he neeeds. Tell him to eliminate sugar from his diet. Cancer loves sugar and most processed carbohydrates which turn into sugar fast and furiously! Buy him a gift....the bood "Life Over Cancer" by Dr. BKeith Block!!!! I agree, driving by himself. He will need all the friends like you that he has! Stay with him! and God Bless You! He's a lucky person! to have you!
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #30
    jeepman said:

    I cannot say enough about the PEG
    Aggiemom,

    I was diagnosed stage 4 SCC, BOT and right tonsil primary with right neck nodes involved. Being in great shape going into treatment is going to really help him. Don't get me wrong here, treatment really kicked my arse. But coming out of it was like a rocket ship due to overall condition going in. I did reluctantly have a tube installed in week 5, but I had no choice, all of the naseau, sore throat, loss of appetite took it's toll. I went into treatment at a solid 190 and came out at 144. All of it was hard earned muscle. The good news is he will make it through this and bounce back quicker due to his health.
    Absolutely get the tube. As for him riding solo, don't worry, he will not do that too much longer. I have not met anyone that did surgery, chemo and rads and walked alone....it is just too painful.

    My prayers and thoughts are with you and your friend.

    Mike

    Tell your friend to ask about a mic-key instead of a g tube.
    Aggiemom!
    Thank Goodness for friends like you! the mic-key is a little button, same concept as a G tube but a big improvement. Go on U tube there are many videos about it! He must keep up his strength and nutrition. Weight loss is a serious problem during treatment. With the Mic-key at least he will be getting the nutrients that he neeeds. Tell him to eliminate sugar from his diet. Cancer loves sugar and most processed carbohydrates which turn into sugar fast and furiously! Buy him a gift....the bood "Life Over Cancer" by Dr. Keith Block!!!! I agree, driving by himself. He will need all the friends like you that he has! Stay with him! and God Bless You! He's a lucky person! to have you!
  • jim and i
    jim and i Member Posts: 1,788 Member
    #31
    Welcome Aggie Mom. Sorry you
    Welcome Aggie Mom. Sorry you and your friend have a need for this forum but you will find a lot of help and support here. My husband was diagnosed with Base of tongue stage four with two lymph nodes involved the end of May 2011. He had a PEG which he had to use after one week of treatment. One thing you will hear often is that everybody is different. But I think most will say don'e drive yourself to chemo. The anti nausea drugs they give you during treatment will make him sleepy which is dangerous to him and others on the road.

    God bless you for supporting him, being a caregiver is a streasful job and your friend is lucky to have you. I am praying to you both.

    Debbie
  • Robt54697
    Robt54697 Member Posts: 5
    #32
    jeepman said:

    I cannot say enough about the PEG
    Aggiemom,

    I was diagnosed stage 4 SCC, BOT and right tonsil primary with right neck nodes involved. Being in great shape going into treatment is going to really help him. Don't get me wrong here, treatment really kicked my arse. But coming out of it was like a rocket ship due to overall condition going in. I did reluctantly have a tube installed in week 5, but I had no choice, all of the naseau, sore throat, loss of appetite took it's toll. I went into treatment at a solid 190 and came out at 144. All of it was hard earned muscle. The good news is he will make it through this and bounce back quicker due to his health.
    Absolutely get the tube. As for him riding solo, don't worry, he will not do that too much longer. I have not met anyone that did surgery, chemo and rads and walked alone....it is just too painful.

    My prayers and thoughts are with you and your friend.

    Mike

    support
    Hello Jeepman,
    I just joined today as just getting too depressed about this cancer and treatment. Always somewhat of a loner type of person. Not in a church or any groups but just feel like it is getting to be too much to go it alone. I am repying to you as it sounds like you had a similar cancer. Mine was in the tonsil with 4 nodes removed which were at stage 4. So had surgery, chemo, and rad. After reading what people have been through I realize others have it a lot worse. Always healthy and worked out 3 days a week. But feel like a shell of my former self physically. So anyway if you care to reply it would be good.

    Robert
  • nwasen
    nwasen Member Posts: 235 Member
    #33
    Stage 4 tongue cancer
    Hi and welcome aboard
    I was stage 4, base of tongue also with 3 lymph nodes (all left side). I turned down the surgery, had 35 radiation treatments and 7 chemos (was to have been 6 but they threw in one more for good measure).
    My treatments started Oct of last year and I finished up in Dec. I had a PEG inserted three weeks in as I lost alot of weight fast. I loved and hated the tube. Getting off it was extremely hard for me but with the help of a great cheerleader of a therapist I am now PEG free since July and eat almost everything.
    We are all different. I have been very lucky that my voice is back 100%, no real issues except alittle dry mouth at night. A few things I have difficulty eating but in the grand scheme of what radiation CAN do to you; I came out on the good side.
    I moved the 80 miles to where my hospital was and lived with friends.I was dropped off and picked up every day of treatment. I went alone but still had rides so I didn't have to worry about my driving ability. I know my last week I felt pretty weak. I think your friend if he has people to take him and pick him up would be wise to let go of the control and allow people to help in this aspect. I know some have driven to all chemo and radiation but you sure don't want to injure yourself or someone else.
    Good luck to your friend and keep us in the loop.
    Peace,
    Nancy aka toughcookie
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #34
    Robt54697 said:

    support
    Hello Jeepman,
    I just joined today as just getting too depressed about this cancer and treatment. Always somewhat of a loner type of person. Not in a church or any groups but just feel like it is getting to be too much to go it alone. I am repying to you as it sounds like you had a similar cancer. Mine was in the tonsil with 4 nodes removed which were at stage 4. So had surgery, chemo, and rad. After reading what people have been through I realize others have it a lot worse. Always healthy and worked out 3 days a week. But feel like a shell of my former self physically. So anyway if you care to reply it would be good.

    Robert

    Hi Robert
    Your post is kind of buried here at the end of a long string of messages. If you haven't yet, please start a new message thread, and introduce yourself. This is a wonderful place to come and vent and ask questions and make friends. Several folks on this board have been through the tonsil cancer route. I had base-of-tongue cancer with mets to lymph nodes on both sides, also stage 4, so my treatment was pretty similar to yours. Don't think of it as a 'shell' of your former self. Think of it as your 'new normal', then just keep on slogging forward.

    Deb
  • Pam M
    Pam M Member Posts: 2,196
    #35
    Robt54697 said:

    support
    Hello Jeepman,
    I just joined today as just getting too depressed about this cancer and treatment. Always somewhat of a loner type of person. Not in a church or any groups but just feel like it is getting to be too much to go it alone. I am repying to you as it sounds like you had a similar cancer. Mine was in the tonsil with 4 nodes removed which were at stage 4. So had surgery, chemo, and rad. After reading what people have been through I realize others have it a lot worse. Always healthy and worked out 3 days a week. But feel like a shell of my former self physically. So anyway if you care to reply it would be good.

    Robert

    Welcome AggieMom and Robert
    Not a lot to add. WATER - drink it - caregivers, too.

    Just chiming in with another "welcome to the site". I, too, am a base of tongue stage four survivor - started induction chemo last November; finished chemo/rads March 2010 - got neck dissection last December. Member of "Club NED". Do well.

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