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  • ratface
    ratface Member Posts: 1,337 Member
    MarineE5 said:

    You are so correct Pat

    Pat,

    As you mentioned, there are many like Josh that don't find the board. I have two neighbors that are long term survivors of cancer. The one lady down the street told me she had cancer close to 30 years ago. Doctors told her she would never have children. Wrong, she had a daughter a few years later and her daughter graduated from College 2 or 3 years ago.

    Another neighbor had tonsil cancer 16 years ago, owns his own business and still working. He was a big help when he heard I had base of tongue cancer. He explained to me what I was in for and he was spot on. That was 9 years ago this month.

    My Best to You and Everyone Here

    Advanced treatment

    is the key to advanced SCC.  Just throw the word right back at it.  Follow the plan. That's me running a 5K race 3 years after treatment. Your survival chances are real.  Welcome to the Board.

  • jim and i
    jim and i Member Posts: 1,788 Member
    Steve,
    You will find this

    Steve,

    You will find this site enormusly helpful. I am a cartaker to may husband, Jim, who was diagnosed  with stage 4 base of tongue. I spent a lot of time here during his treatment a recovery. You will find info and encouragement whenever you need it. Please know I am praying for you to have an easy treatment and eventual NED.

    Debbie

  • hwt
    hwt Member Posts: 2,328 Member
    jim and i said:

    Steve,
    You will find this

    Steve,

    You will find this site enormusly helpful. I am a cartaker to may husband, Jim, who was diagnosed  with stage 4 base of tongue. I spent a lot of time here during his treatment a recovery. You will find info and encouragement whenever you need it. Please know I am praying for you to have an easy treatment and eventual NED.

    Debbie

    Steve

    Sorry you had the need to find us but glad you did. Looks like you are going to John Hopkins, one of the best, or so I have heard. I was treated at Siteman/Barnes in STL and am currently going to Mayo Clinic in Rochester, MN. It's so normal for your emotions to be running high. You will be given a plan and by the time you start your tx., it will almost be a relief to get the show on the road. Be sure to take an extra set of ears to your appointments and have them take notes. I also suggest starting a calendar to keep track of everything. Slow down, take a deep breath then take it as it comes and deal with it. Don't waste allot of energy worrying about things that may or may not happen. 

    Prayers that your journey will be an easy one.

    Candi in STL

  • Steve5
    Steve5 Member Posts: 147
    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Steve5 said:

    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

    I'm so glad

    that  you have a diagnosis and a treatment plan!  Once you can absorb all of the information given to you today, then you can "get to work".  I am very thankful they said "very curable cancer".  I was told the same thing and I'm 4 months cancer free!!!  You're on my prayer list and keep checking in with us.  We want to be here with you every step of your journey.  You've GOT THIS!!!!! Lean on us anytime!!!!

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Steve5 said:

    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

    and just like that

    you have a plan.  Its a good one two.  We can argue the fine points till the cows come home, but what's bee proposed for you is straight down the middle.  Go for it.  Remember, what follows is a marathon, not a sprint.  And you will get from here to the rest of your life one step at a time. 

     

    Pat

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Plan is set

    Steve,

    See you are moving faster already.

    As the start of treatments draws nearer, you make want to check-out the Superthread for items all H&N members may need.  There is an extensive list in there.  I think I counted once and I had 22 or 24 of the things listed (you want to be over prepared, like 3 spare tires over prepared).

    Also, I had my first post scan at 12 weeks and it was clean.

    Hopefully, you will have an uneventful 8 to 10 weeks, but remember there are lots of meds and common sense tricks and tips to get you over the rough spots.  Virtually, nobody gets all the uncomfortable side effects, really!

    You will be ok,

    Matt

  • alligatorpointer
    alligatorpointer Member Posts: 131
    Sending positive thoughts

    Steve,  you are the same age as my son who was diagnosed with throat cancer and went through treatment last summer and fall (2012).  He has recovered very well and continues to be among those wearing the NED badge.  I sent you a private message ... kinda long so did not want to post it here.  Wishing for the best of outcomes for you.  This forum provides much needed support for caregivers, too.  I am very grateful for all the information provided by the good people who post here.  They made caregiving easier and less stressful for me.  Your family members could also benefit from what this forum has to offer.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Steve5 said:

    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

    ...and there you go....

    plan is already set into motion....and you are about to embark on busy times...so busy, you won't have a lot of time to reflect.  You'll be grateful for the port once your chemo gets started.  No searching for a vein, no upkeep like with a PICC line....just go in, and wham bam, thank you maam....you're all hooked up and ready to go.  Having the feeding tube already in place can be a good thing....I mean, what's the worse that can happen...that you'll never use it?  At least it's not something that has to be done at a time when you already feel like crap.  It's not a big deal either....45 minutes from the time they wheel you in till you're done.  It can be a little crampy for a couple of days, but then it's simply another appendage....and it may become your very best friend Smile

    Learning to take this one step at a time....one day at a time....is an art form, and a lesson that will serve you the rest of your days....really.  You just keep posting here, ask your questions....you are going to get through this....you ARE!!

    p

  • Steve5
    Steve5 Member Posts: 147
    CivilMatt said:

    Plan is set

    Steve,

    See you are moving faster already.

    As the start of treatments draws nearer, you make want to check-out the Superthread for items all H&N members may need.  There is an extensive list in there.  I think I counted once and I had 22 or 24 of the things listed (you want to be over prepared, like 3 spare tires over prepared).

    Also, I had my first post scan at 12 weeks and it was clean.

    Hopefully, you will have an uneventful 8 to 10 weeks, but remember there are lots of meds and common sense tricks and tips to get you over the rough spots.  Virtually, nobody gets all the uncomfortable side effects, really!

    You will be ok,

    Matt

    Plan is Set

    Matt, thanks, my wife and I will make sure we get on that right now and get as prepared as possible.  Again thanks, you guys are really helping - thank you so much

    Steve

  • j4mie
    j4mie Member Posts: 218
    Steve5 said:

    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

    Glad you have your plan in place...

    and are starting the preparations! This first step was a relief for us, and once we actually got started it was an even bigger relief!!! It is smart to use your time now, while going through any dental work, etc. to prepare as much as possible for the treatments ahead of you. Best of luck!

  • Hummingbird3
    Hummingbird3 Member Posts: 67
    Steve,  just reading your

    Steve,  just reading your original post.  My tumor location was non related to yours but I wanted to add to everyone's else's blessings.  I love reading your last statement and your attitude alone will fight for you!  It's encouraging to read you have a great doctor and it sounds like they are on top of everything.  There is a wealth of information on here, lots of big arms, hearts that truly care and people that understand.  I will be praying as you begin this journey and through it.  You will cross this mountain and come out on the other side!  As many have shared, take it one day at a time.  keep us close and know we are all traveling with you.

    christie

  • josh r.
    josh r. Member Posts: 264 Member

    hey Josh

    I just read your bio.  I hadn't realized you are nineten plus years out from treatment.  Wow, things have changed a lot since 1991.  back then your radiation treatments would have been primitive compared to now, and the chemo would have been, well, no fun at all.  You are a great example of long term survival with this cancer, dispelling the myth that "it always comes back."  Its good to have you hear posting.  There are many others like you, but they don't often find this board.

     

    Pat

    The Stone Age

    Hi Pat,

    You are right that when I went through tx in 1991 it was "hammer and chisel" but the best they had at the time and I am, like all us survivors, amongest the most grateful people on earth. Because of how long it has been since I've been through what our brothers and sisters are going through today I do not venture in on treatment questions, because I am too far from what's happening today. With emotions, fear, courage, and faith I think I can still be relevant.

    For what it's worth Pat I really enjoy your posts and feel strongly that you have helped many of our teamates. Keep it up. josh r.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Steve

    Welcome to the family, you have the found the right place my friend

     

    God Bless

    Hondo

  • Steve5
    Steve5 Member Posts: 147

    Welcome Steve....

    to the club nobody wants to join.....you have happened upon the best Head and Neck group on the internet....truly, we will open our arms, take you under our wings and help you get through this bump in the road.  One of the advantages of having this big of a family, is there is always so many ideas.....you can try one, if it doesn't work, then there are 10 or 20 more ideas waiting in the wings....

    This is a scary time....but as Jamie said, waiting to get things started can be the worst.  Longtermsurvivor was right on when he said this is not a sprint, and taking things one step at a time is the way to get through this.  I know when I was first diagnosed, I felt like I'd been parachuted into a foreign country where I didn't know the language or the customs....let alone the road home.  This lost feeling will pass. 

    You write all you want on here....there's even a place on this site for a blog if you want....ask ANY questions you want answers to, there is someone here all the time....all questions get answered.

    For the time being, your project is to eat all of everything you want....pack on some extra pounds.... Pour your fears out here, we will put many of them to rest. 

    p

    Welcome Steve

    Phrannie - thanks so much for your support, this group is fantastic, I lean on this group several times a day - rereading the posts, leaning and getting information, but at the moment leaning and taking courage.  Again thanks, not sure how many times I can say that but everyone has been so great - I can't believe that last night my 8 going on 9 year old and I watched a movie, the Great and Powerful Oz - I had never seen it, it was late in the evening just him and me on the sofa and I dont' know how but for a little while I forgot about the cancer.  I feel so fine, so normal, so full o energy and am walking, biking, working in the yard, playing with my kids and then there is this something invading my neck - how can that be  - okay, thanks for letting me write that - can I ask you because this is in my mind as well - I know there are those worse than me and some better off and I am not asking "why me" but instead well I am not sure- I keep thinking I need to beat this so I can give back as well, so I can be there for others to lean on - for my family, friends and for life itself to see the sky, walk, bike, hike, everything - I know I haven't gone through anything yet like all of you, maybe I think it is just incredible what life is all about, I don't know how this sounds but I told my wife I hope this didn't have to be the thing in life to make me value so much, she told me no it is not like that - oh I don't know - do you know what I mean thinking about this stuff -

    Sorry to go on - thanks for letting me - I want to beat this and I want to be around to give back like all of you for a long time - thanks

    Steve

  • phrannie51
    phrannie51 Member Posts: 4,716
    Steve5 said:

    Welcome Steve

    Phrannie - thanks so much for your support, this group is fantastic, I lean on this group several times a day - rereading the posts, leaning and getting information, but at the moment leaning and taking courage.  Again thanks, not sure how many times I can say that but everyone has been so great - I can't believe that last night my 8 going on 9 year old and I watched a movie, the Great and Powerful Oz - I had never seen it, it was late in the evening just him and me on the sofa and I dont' know how but for a little while I forgot about the cancer.  I feel so fine, so normal, so full o energy and am walking, biking, working in the yard, playing with my kids and then there is this something invading my neck - how can that be  - okay, thanks for letting me write that - can I ask you because this is in my mind as well - I know there are those worse than me and some better off and I am not asking "why me" but instead well I am not sure- I keep thinking I need to beat this so I can give back as well, so I can be there for others to lean on - for my family, friends and for life itself to see the sky, walk, bike, hike, everything - I know I haven't gone through anything yet like all of you, maybe I think it is just incredible what life is all about, I don't know how this sounds but I told my wife I hope this didn't have to be the thing in life to make me value so much, she told me no it is not like that - oh I don't know - do you know what I mean thinking about this stuff -

    Sorry to go on - thanks for letting me - I want to beat this and I want to be around to give back like all of you for a long time - thanks

    Steve

    LOL....I think there are a lot

    folks who receive an attitude adjustment when they face down a life threatening disease, and come out the other side.  It's not that they had a bad attitude before, it's just that we take life for granted even knowing that we aren't going to live forever.   Then something big like cancer rears its' head, and we have to fight for our lives, and we all know that something we've worked hard for, fought to keep is so much sweeter.  So yeah, I know what you're saying....it was true for me, anyway. 

  • PJ47
    PJ47 Member Posts: 376
    Steve5 said:

    New To This

    Thanks to all who have written support - We saw the Dr. today - he was very nice - He told me it was a T2 N2B Stage IV - he said I had a "very curable cancer"  my wife and I had to take a few moments when he said that - told me 90% cure rate for non smoker most likely HPV positive.  I have a PET next week to check for any other in the neck area - told me it does not spread to other nodes in the body -no surgery - 6-7 weeks of chemo, cisplatin 40 dose weekly and IMTR radiation  He biopsied my tonsil, it was firmer and enlarged - did not see anything on tongue or elsewhere - getting a plan setup up with rad oncologist - dentist ... and others -he is going to move my salivary gland to help spare it some dose, I will need to get under skin port and recommended PEG - I remember reading others suggesting getting the PEG in case you need it to keep up nutrition and try and avoid dehydrating and ER trips - my wife and I talked and teared up and talked and teared up all the way home - I will get a PET 12 weeks after the last radiation treatment and if that is clear he does not want to see me back! - 12 week PET! -that is what I am shooting for- a clear 12 week PET - is this too much information, I am sorry but again this is great outlet and all of you that have written are a great source of strength - I mean it. I really mean it.  I am going to beat this thing - thanks for letting me lean on you - when I beat this I hope to help others and let them lean on me.

    Steve

    Good news

    The biopsy will confirm the HVP status and the MD is most likely correct.  HPV p16+ tumors have been found to be responsive to treatments so this is a good thing if he is right.  They almost always are "advanced" as they are not picked up on until they travel and if you do not drink/smoke you "don't fit the profile" either.

    You will get through this and you are in good hands.  Many blessings will come your way,

    PJ

  • Viilik70
    Viilik70 Member Posts: 73
    Just beat it!

    many people have beaten this disease more than once up to three times so you will do it also. Just be positive and think positive. When I went through it the first time I just put it in my head from the beginning that I was going to make it no matter what and I was not going to let this beat me and I didn't want anyone to feel sorry because I was beating this thing and that is that! You can do this there is no doubt in my mind! Chin up, move forward! And God bless you!

  • Steve5
    Steve5 Member Posts: 147
    Viilik70 said:

    Just beat it!

    many people have beaten this disease more than once up to three times so you will do it also. Just be positive and think positive. When I went through it the first time I just put it in my head from the beginning that I was going to make it no matter what and I was not going to let this beat me and I didn't want anyone to feel sorry because I was beating this thing and that is that! You can do this there is no doubt in my mind! Chin up, move forward! And God bless you!

    Thanks, you are right and I needed this kick in the butt in a good way I mean absolutely, thanks - I am going to start posting some other questions now my wife and I need to ask about what will go on in the next 4 months, again thanks,

    God Bless you and I will move forward. 

    Steve5

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    It's Scary!

    Steve,

    God Bless You! It is scary. I was scared out of my wits for my husband. He is 59 and was diagnosed in February after finding a buldge (lymph node) on the left side of his neck. Needle biopsy revealed it was cancer. After several other diagnostic tests and then a tonsillectomy, it was found that his left tonsil was cancerous. He HAD Stage IV, HPV+ P16 cancer. He underwent 35 rounds of radiation treatment with 3 concurrent rounds of chemo. It was no piece of cake, no picnic, BUT he endured and survived.

    6 weeks after his last treatment, his PET scan revealed No Evidence of Disease (NED). Typically there is some residual left over because of the radiation.... but his PET show NOTHING.... nada. Praise God.

    Our faith in God grew. We depended on Him to guide and direct the treatment. We did everything the doctors recommended.  You may feel like you're alone, but you're not, ever. 

    Stay strong. Be a warrior. You can, and you will do this. There is light at the end of the tunnel.

    Best regards.

    Jude (and Ruben)