My dad is about to start radiation/chemo for base tongue cancer....

AJG
AJG Member Posts: 29
edited October 2013 in Head and Neck Cancer #1

Hello!

My dad was diagnosed for the second time with tongue cancer, the first time was stage I and removed without further treatment, now it's stage III inoperable due to the location and moving forward with radiation/chemo treatment.

We just had a pretty disturbing appointment with the oncologist who started to explain the radiation process. She pretty much told us he will not be able to work, eat, talk and others scary things. We still haven't met with the radiation doctor, we will do that this Thursday. This is a very scary process and my father is a workaholic and gymaholic, I'm afraid the lack of activity along with the pain will take a toll on him and send him to massive depression.

 

Could you please share your experience?

Thank you so much!

God bless..

AJG

«1

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    starting

    AJG,

    Welcome to the H&N forum, where you will  find many of us who were scared and in pretty good shape.

    You are in the scary (unknown) phase right now, but it is not until you are in the thick of it (treatments) do you know how difficult it may be.

    I was stage IVa, scc, bot, I lymph node, hpv+ (surgery, rads, Erbitux)

    Any pain I had was readily treatable (no problem).  I did have a well-stocked arsenal, ready for anything side effects could throw at me.

    I do find myself more fatigued then I once was, but if I put my mind and body into a project I usually make out fine.

    Some H&N members breeze through other struggle every day.  It just depends on how well your Dad’s body adjusts to the side effects from treatment and how well he takes steps to combat issues as they arise.

    Don’t expect to get all the worst side effect, because you more than likely will not.  Also, check out the Superthread for some light reading (you will learn a lot)

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome AJG

    Like Matt said, we are all different, so no real way to say how he will do..

    As for him not being able to do all of the things you say, more than likely that won't be the case... maybe a few of them temporarily, but doubtful on all of them simultaneous.

    A lot depends on his over all health going in, and that sounds to be pretty good. Other factors depends on what he does for work. Myself, I do mainly computer work, and worked entirely from home during my treatment.

    I was STGIII SCC Tonsils HPV+, sisteen weeks, four types of chemo, and seven of those concurrent with daily radiation. About 3 - 4 weeks into rads, and another 3-4 weeks post rads are usually the worse as for side effects, no taste and no saliva... But over time it improves, I am nearly five years post Tx now and have nothing going on other than a little dryness during sleep. I have all taste, most saliva, and on no meds... Life is very good....

    Many here have similar stories, I'm sure that more than likely your father will also in time.

    Again, welcome...

    John

  • jim and i
    jim and i Member Posts: 1,788 Member
    My husband, Jim had BOT stage

    My husband, Jim had BOT stage 4 with to lymph nodes involved, non operables because of location and size. His biggest side effect was the mucous and still is. He slep alot. Jim was like your dad, he wanted to continue to work in the yard and go fishing. He did go through a short bout of depression (about one month after treatment) but once able to get active again he was fine. Still gets tired easily but he just turned 79 yrs old and it sounds as if your dad is younger. He had very little pain during and after treatment. He had a feeding tube inserted before treatment so he didn't have to eat by mouth so that probably helped alot. I am praying your dad has an easy time and gets back to work soon.

    Debbie

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hello....and welcome

    to the best forum on the internet!!

    Seems the Drs. feel obligated to give the worst possible scenerio's just in case.....however, the chances are that your dad won't suffer the worst of the worst of all side effects.  Some of them, sure....but many of us went into treatment scared to death of the "might happens", and got through it with less side effects than advertised.  He's most likely going to work a whole lot less (or none at all), and the gym will probably have to go to the back burner during treatment....but....after treatment he will slowly recover, and get back to what keeps him happy.  Sometimes we just have to be happy with what we got, and living starts getting really important during treatment.  He may be a person who will see getting through this as his new job, and put all his energies and focus into that rather than getting depressed....maybe? Smile 

    I didn't work during treatment, but I was back to work full time 6 weeks after.....I was very tired for the first four months, but that gradually went away.  Just keep reminding him that this temporary....a bump in the road.  He's going to pick up his life once it is over.

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Nurse of Doom

    When I was first diagnosed (Stage 3a, MEC, BOT) my wife and I sat through the typical "orientation" sessions with various doctors and nurses.  While none of them painted the chemo+rads treatments as a walk in the park, one nurse in particular scared the hell out of us with horrible predictions and graphic descriptions.  I had not found CSN yet, so that's pretty much all we knew at that time.  We left that meeting wondering who was going to provide me with the "accidental" overdose to end it all right then and there.Wink  Once we got a grip on things, we came to call her the "Nurse of Doom" and decided to take things as they came, deal with them from a very positive outlook, and simply not allow ourselves and others around us to over-worry to a point of dysfunction.

    While some of the Nurse of Doom's predictions did come true, and I experienced more than my fair share of bad side effects, 4+ years later I can say that I am in remission, and life after chemo+rads is pretty darn good.

    You and your dad need to understand that attitude is everything right now and for the next year or so.  Your dad sounds like he is physically ready for this battle, so now focus on the mental part of it--that's what will get BOTH of you through this.  And, be sure to take care of yourself.  Fighting cancer is a team sport, and you need to be strong and healthy too.

    Best of luck and visit here often--this is a great resource in many, many ways.

    Mike

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Dad will do fine

    Great advice above. You found the right site to get an insight on the battle ahead. While the doctors and their staff can tell you what to expect, the folks on here can help you and your Dad fight the battle.  I had stage 4 and did radiation and if I can make it through it, so can your Dad. keep this site handy and keep us posted.

          Jeff

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hi AJG

    You just heard the worst case scenario.  I represent the other end.  With my BOT cancer, I worked all the way through rads, didn't get mouth sores, didn't require a feeding tube, and didn't have pain.  I was quite tired, and slept a whole bunch.  And I lost weight because food didn't taste good and my apetite went way down.  They typically build a "block" to protect your vocal cords from radiation when they radiate for BOT cancer, so I didn't lose my voice either.  Although, with lack of saliva, I  didn't talk a lot because it tended to make my tongue sore.

    Everyone is different, that's true, but the odds favor he  will do fine.  This whole thing just has to be approached with an open mind, and a flexible attitude. 

     

    best

     

    Pat

  • AJG
    AJG Member Posts: 29
    What an amazing support system!

    Wow, I am so thankful and amazed at your quick responses. It means so much to me. I need to get dad on here ASAP! :)

    I really do appreciate every one of you for taking the time to write. Having been through what you have been through and sharing your experience means a ton to the ones that are in the begining of this journey. It is an extremely hard and scary journey but we need to stay positive and this really helps.

    I can't thank you all enough, I will keep you updated and hopefully dad will be here to share too ;)

    God bless!

    AJG

     

     

  • CherieLW
    CherieLW Member Posts: 472
    AJG,
    I too was very scared

    AJG,

    I too was very scared when my dad had to have chemo and radiation due to cancer of the sinuses.  I did not know what to expect and heard all sorts of horror stories... This is what I can tell you from my dad's experience, who was somewhat like your dad- a busy bee!

    The first few weeks did not affect him a whole lot other than make him a little more tired.  Eventually close to the end of his treatment something I was terrified of was he lost appetite and couldn't eat.  I don't know if it was that he couldn't...or just didn't have the desire. I was so upset and scared, but he had to get a PEG tube.  Looking back as scared as I was, it was the best thing for him.  Without it, he lost energy and nutrition.  With it, he gained back some energy and some weight.  He is almost 3 months out of treatment and still has the PEG tube.  I was quite discouraged, but now he is eating a lot of foods and in the past few weeks has gained back a lot of energy.  It is important throughout treatment for your dad to keep  himself somewhat busy and from the sounds of it, he will be able to do that.  My dad is retired so working was not an issue-but he did go out, drive himself to appts, and run errands. Since my dad's radiation targeted his sinus and lymph nodes, it did not effect his ability to talk- but due to lack of saliva he did not talk near as much as he used to.  I was also afraid of depression, but if he has support- which it seems like he does, hopefully he will do fine.  My dad went to the James Cancer at OSU, which is one of the best and there were nurses who would talk to him daily to determine if he was feeling depressed or anxious.  There were medications to help with anxiety.  What I'm trying to say, is that it is a very scary thing to have a loved one go through this, but it is doable.  Im sure many of the people on here will share their experiences, some who probably had the same type of cancer. One thing I can also tell you is that each person is different.  I will be praying for your dad,  you, and your family.  As scary as it is, just try to think positive.

    P.S. See my update post in the forum.  It goes to show you with todays medicine and technology- good things can come of this!  If you need to talk feel free to msg me!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    ajg, everyone has given u

    ajg, everyone has given u good advice.  i just want 2 add that he MUST stay hydrated!  starting now he should eat as much as he can and try to gain some weight.  he will lose wt during tx and eating now will prepare him for that loss.  he will need to drink water all day long.  it is very important!!  i didn't have chemo but know from reading here that chemo can b hard on the kidneys and you need 2 drink lots of water 2 flush the kidneys.  plus, if he becomes dehydrated he can end up in the hosp, so HYDRATE, HYDRATE, HYDRATE!!  will b keeping u and ur family in my prayers.  keep us posted on his progress.

    God bless,

    dj

  • AJG
    AJG Member Posts: 29
    CivilMatt said:

    starting

    AJG,

    Welcome to the H&N forum, where you will  find many of us who were scared and in pretty good shape.

    You are in the scary (unknown) phase right now, but it is not until you are in the thick of it (treatments) do you know how difficult it may be.

    I was stage IVa, scc, bot, I lymph node, hpv+ (surgery, rads, Erbitux)

    Any pain I had was readily treatable (no problem).  I did have a well-stocked arsenal, ready for anything side effects could throw at me.

    I do find myself more fatigued then I once was, but if I put my mind and body into a project I usually make out fine.

    Some H&N members breeze through other struggle every day.  It just depends on how well your Dad’s body adjusts to the side effects from treatment and how well he takes steps to combat issues as they arise.

    Don’t expect to get all the worst side effect, because you more than likely will not.  Also, check out the Superthread for some light reading (you will learn a lot)

    Matt

    Thank you Matt! This really

    Thank you Matt! This really helps. 

  • AJG
    AJG Member Posts: 29
    Skiffin16 said:

    Welcome AJG

    Like Matt said, we are all different, so no real way to say how he will do..

    As for him not being able to do all of the things you say, more than likely that won't be the case... maybe a few of them temporarily, but doubtful on all of them simultaneous.

    A lot depends on his over all health going in, and that sounds to be pretty good. Other factors depends on what he does for work. Myself, I do mainly computer work, and worked entirely from home during my treatment.

    I was STGIII SCC Tonsils HPV+, sisteen weeks, four types of chemo, and seven of those concurrent with daily radiation. About 3 - 4 weeks into rads, and another 3-4 weeks post rads are usually the worse as for side effects, no taste and no saliva... But over time it improves, I am nearly five years post Tx now and have nothing going on other than a little dryness during sleep. I have all taste, most saliva, and on no meds... Life is very good....

    Many here have similar stories, I'm sure that more than likely your father will also in time.

    Again, welcome...

    John

    Thank you! Im glad you are

    Thank you! Im glad you are doing so well ;)

  • AJG
    AJG Member Posts: 29
    jim and i said:

    My husband, Jim had BOT stage

    My husband, Jim had BOT stage 4 with to lymph nodes involved, non operables because of location and size. His biggest side effect was the mucous and still is. He slep alot. Jim was like your dad, he wanted to continue to work in the yard and go fishing. He did go through a short bout of depression (about one month after treatment) but once able to get active again he was fine. Still gets tired easily but he just turned 79 yrs old and it sounds as if your dad is younger. He had very little pain during and after treatment. He had a feeding tube inserted before treatment so he didn't have to eat by mouth so that probably helped alot. I am praying your dad has an easy time and gets back to work soon.

    Debbie

    Thank you Debbie,  This

    Thank you Debbie,  This sounds almost exacly to what my dad has. He is 55 YOA and was in really good shape, however for the last 2 weeks he has lost 10lbs because the tumor and the biopsis are causing a lot of pain. He can only eat soft foods. Aside for the cancer he doesnt have any other health issue so I pray he holds up well through treatment. 

  • AJG
    AJG Member Posts: 29

    Hello....and welcome

    to the best forum on the internet!!

    Seems the Drs. feel obligated to give the worst possible scenerio's just in case.....however, the chances are that your dad won't suffer the worst of the worst of all side effects.  Some of them, sure....but many of us went into treatment scared to death of the "might happens", and got through it with less side effects than advertised.  He's most likely going to work a whole lot less (or none at all), and the gym will probably have to go to the back burner during treatment....but....after treatment he will slowly recover, and get back to what keeps him happy.  Sometimes we just have to be happy with what we got, and living starts getting really important during treatment.  He may be a person who will see getting through this as his new job, and put all his energies and focus into that rather than getting depressed....maybe? Smile 

    I didn't work during treatment, but I was back to work full time 6 weeks after.....I was very tired for the first four months, but that gradually went away.  Just keep reminding him that this temporary....a bump in the road.  He's going to pick up his life once it is over.

     

    Thank you for the encouraging

    Thank you for the encouraging words. 

  • AJG
    AJG Member Posts: 29
    Mikemetz said:

    Nurse of Doom

    When I was first diagnosed (Stage 3a, MEC, BOT) my wife and I sat through the typical "orientation" sessions with various doctors and nurses.  While none of them painted the chemo+rads treatments as a walk in the park, one nurse in particular scared the hell out of us with horrible predictions and graphic descriptions.  I had not found CSN yet, so that's pretty much all we knew at that time.  We left that meeting wondering who was going to provide me with the "accidental" overdose to end it all right then and there.Wink  Once we got a grip on things, we came to call her the "Nurse of Doom" and decided to take things as they came, deal with them from a very positive outlook, and simply not allow ourselves and others around us to over-worry to a point of dysfunction.

    While some of the Nurse of Doom's predictions did come true, and I experienced more than my fair share of bad side effects, 4+ years later I can say that I am in remission, and life after chemo+rads is pretty darn good.

    You and your dad need to understand that attitude is everything right now and for the next year or so.  Your dad sounds like he is physically ready for this battle, so now focus on the mental part of it--that's what will get BOTH of you through this.  And, be sure to take care of yourself.  Fighting cancer is a team sport, and you need to be strong and healthy too.

    Best of luck and visit here often--this is a great resource in many, many ways.

    Mike

     

    Great advise! Thank you. 

    Great advise! Thank you. 

  • AJG
    AJG Member Posts: 29
    Duggie88 said:

    Dad will do fine

    Great advice above. You found the right site to get an insight on the battle ahead. While the doctors and their staff can tell you what to expect, the folks on here can help you and your Dad fight the battle.  I had stage 4 and did radiation and if I can make it through it, so can your Dad. keep this site handy and keep us posted.

          Jeff

    Thank you Jeff!

    Thank you Jeff!

  • AJG
    AJG Member Posts: 29

    Hi AJG

    You just heard the worst case scenario.  I represent the other end.  With my BOT cancer, I worked all the way through rads, didn't get mouth sores, didn't require a feeding tube, and didn't have pain.  I was quite tired, and slept a whole bunch.  And I lost weight because food didn't taste good and my apetite went way down.  They typically build a "block" to protect your vocal cords from radiation when they radiate for BOT cancer, so I didn't lose my voice either.  Although, with lack of saliva, I  didn't talk a lot because it tended to make my tongue sore.

    Everyone is different, that's true, but the odds favor he  will do fine.  This whole thing just has to be approached with an open mind, and a flexible attitude. 

     

    best

     

    Pat

    Thank you for the positive

    Thank you for the positive encouraging words . 

  • AJG
    AJG Member Posts: 29
    CherieLW said:

    AJG,
    I too was very scared

    AJG,

    I too was very scared when my dad had to have chemo and radiation due to cancer of the sinuses.  I did not know what to expect and heard all sorts of horror stories... This is what I can tell you from my dad's experience, who was somewhat like your dad- a busy bee!

    The first few weeks did not affect him a whole lot other than make him a little more tired.  Eventually close to the end of his treatment something I was terrified of was he lost appetite and couldn't eat.  I don't know if it was that he couldn't...or just didn't have the desire. I was so upset and scared, but he had to get a PEG tube.  Looking back as scared as I was, it was the best thing for him.  Without it, he lost energy and nutrition.  With it, he gained back some energy and some weight.  He is almost 3 months out of treatment and still has the PEG tube.  I was quite discouraged, but now he is eating a lot of foods and in the past few weeks has gained back a lot of energy.  It is important throughout treatment for your dad to keep  himself somewhat busy and from the sounds of it, he will be able to do that.  My dad is retired so working was not an issue-but he did go out, drive himself to appts, and run errands. Since my dad's radiation targeted his sinus and lymph nodes, it did not effect his ability to talk- but due to lack of saliva he did not talk near as much as he used to.  I was also afraid of depression, but if he has support- which it seems like he does, hopefully he will do fine.  My dad went to the James Cancer at OSU, which is one of the best and there were nurses who would talk to him daily to determine if he was feeling depressed or anxious.  There were medications to help with anxiety.  What I'm trying to say, is that it is a very scary thing to have a loved one go through this, but it is doable.  Im sure many of the people on here will share their experiences, some who probably had the same type of cancer. One thing I can also tell you is that each person is different.  I will be praying for your dad,  you, and your family.  As scary as it is, just try to think positive.

    P.S. See my update post in the forum.  It goes to show you with todays medicine and technology- good things can come of this!  If you need to talk feel free to msg me!

    Thank you Cherie. I dont know

    Thank you Cherie. I dont know what's worst having the disease or watching someone you love go through it... ?  I am trying very hard to be strong for him and my self some days are better than others but we will get through it. I am so glad your dad is ok. 

  • AJG
    AJG Member Posts: 29

    ajg, everyone has given u

    ajg, everyone has given u good advice.  i just want 2 add that he MUST stay hydrated!  starting now he should eat as much as he can and try to gain some weight.  he will lose wt during tx and eating now will prepare him for that loss.  he will need to drink water all day long.  it is very important!!  i didn't have chemo but know from reading here that chemo can b hard on the kidneys and you need 2 drink lots of water 2 flush the kidneys.  plus, if he becomes dehydrated he can end up in the hosp, so HYDRATE, HYDRATE, HYDRATE!!  will b keeping u and ur family in my prayers.  keep us posted on his progress.

    God bless,

    dj

    Thanks DJ. I will make sure

    Thanks DJ. I will make sure he stays hydrated. We want that stuff in to do its job and than out of there! I totally agree. 

  • DaveRJ
    DaveRJ Member Posts: 9
    AJG said:

    Thanks DJ. I will make sure

    Thanks DJ. I will make sure he stays hydrated. We want that stuff in to do its job and than out of there! I totally agree. 

    AJG

    AJG, you've come to the right place.  The people on this forum have the collective experience to share what to do to lessen many of the side effects of radiation plus help you and your family stay strong through the temporary journey.  The worst of it is temporary, even though once a cancer patient you are a cancer patient for life.  I see that as a good thing because you and your family can beat the cancer and yet you can still help others from your experiences.  Keep us posted on what the doc says!  He's gotta cover all his bases from a legal standpoint.  We can tell you what to actually expect from a practical standpoint! :-)