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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

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 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

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 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

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!!!!

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

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

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 . 

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 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 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!

longtermsurvivor said:

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

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.

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

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