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Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Just found out Friday 10/18/2013 my biopsy came back as positive for Advanced Squamous Cell Carcinoma - I go to the Dr. for th first time on the 22nd - I am afraid, I have been reading the posts on this site, I want to beat this, I am going to continue to write on here about what happens, is that alright, just writing this seems to help somehow, I have been reading the survivor times on How Long have you survived and I want to keep reading them over and over.  I want to survive. I want to live.

Steve5

lornal's picture
lornal
Posts: 268
Joined: Sep 2013

Welcome Steve.  Sad you had to visit, but glad you came.  I just recently joined myself.  I am 6 years out myself from tonsil cancer.  I joined because I have been having some really late side effects from the radiation.  Appearantly, they are not common - my radiation onc told my I'm the first one he's had with issues this late in the game.  Evem with these problems, I'm glad I'm alive to complain about them!

Wanting to be alive is imporatant, and will certainly help get you through - along with all the folks on this site.  Full of support and suggestions!

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Thanks lornal - this really helps - I am so happy to read 6 years out - thanks for the support -not sure what to say right now, now just waiting until tomorrow to see what the dr says.

Steve5

CivilMatt's picture
CivilMatt
Posts: 3066
Joined: May 2012

Steve,

Welcome to the H&N forum, we have each stood in  your shoes and it can be overwhelmingly scary.

Next your team will develop a treatment plan and present you with what they know.  Depending on where your SCC is located the treatment often selected by H&N  members is usually 4 choices, i.e. surgery, radiation, chemo or wait (and watch) and see or some combination..

It seems daunting, but you will quickly select the best choice(s), with their help, for you.

Treatment can be tough, but from my perspective very doable and believe me I was as trustingly blinded, and frightened by the treatment plan as anyone.

I also was determined to give it my best shot and paid close attention to information that I could use to help myself manage the side effects.

Jumping over the treatment plan for a moment, you will come out the other side and without cancer.  That is another common goal of the H&N forum.

Relax and good luck,

Matt

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Matt - I have read some of your other posts as well - you are the best - what a source of strength - thank you - I am taking courage from what you and others are saying to beat this thing, stay around, live - do what has to be done - thanks!!

Steve5

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

So sorry you are here, but welcome to the family Smile My husband was diagnosed in Aug. 2013 and is currently in the midst of treatment. Your post really hit home, as I can vividly remember the feelings that you describe happening in our home only a couple of months ago. It is the most scary thing that had ever happened to him, me and our family up to that point. However, you will get through it...you have definitely come to the right place. I have found that no matter the time of day, I have found people (very quickly becoming an 'extended online family') who have been in our shoes that have been willing to lend an ear, a suggestion, or a ray of hope. So, write and ask plenty of questions.

On a quick note, in our short experience so far, the hardest part was waiting to start the treatment. Once you have a game plan, and start your 'fight' it is a huge relief. Hang in there!

Jamie

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Jamie - thank you for your words and caring - best to you and your family -let's all beat this - I am taking courage from this -thanks -

Steve5

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

sorry you had to join, but this is a very helpful club.  First take a deep breath.  This will be a marathon, not a sprint.  We were all overwhelmed at the start, but if you will take it one step at a time, it is pretty doable.  First a word about all the emotionally charged buzzwords.  Forget stuff like "advanced" squamous cell carcinoma.  That just makes you think there isn't a chance in the world, doesn't it?  Actually,. the word advanced doesn't have any meaning when put in front of SCC.  You have ordinary garden variety scc, just like everyone else.  See the doctor,  make a plan.  There is plenty of time to fill in all the details.

 

best to you

 

Pat

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

Steve

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

Steve

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

Steve

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

steve, i'm sorry u need 2 b here but very glad u found us!  ur attitude 2 live will get u thru tx.  it is a hard road but one we've traveled and come thru the other side.  for now eat everything u can and try to gain weight.  u will be losing wt so whatever u gain is a plus.  also, drink lots and lots of water during tx.  that is extremely important.  it will get rough and there may be days u think u won't make it but that passes and then u c the lite at the end of the tunnel.  we will all b here rooting and cheering for u.  keep us posted on your progress.  you will live!!

God bless you,

dj

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

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

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

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's picture
phrannie51
Posts: 3821
Joined: Mar 2012

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. 

TracyLynn72's picture
TracyLynn72
Posts: 739
Joined: May 2013

Welcome to the family!  This is the greatest group of people you'll "meet". They were so kind, thoughtful and truly helped me through all of my treatments.  I am 4 months cancer free TODAY!  You will get so much support, encouragement, and questions answered here.  I'm sorry you have to be here, but you've found a great place.  Post often, keep us updated, and take a deep breath.  We here to fight with you! 

Grandmax4's picture
Grandmax4
Posts: 594
Joined: Dec 2011

and we'll walk you down the road that leads to your good health. It's a bumpy, curvy road at times, but, you'll make it. I have been cancer free 2 years November 2.I had a cancerous mass on my epiglottis and it had to be removed, in the 2 years since, I have learned to swallow and eat anything I please, my voice is also back 100%. Don't look back, you're not going that way~~keep looking forward and Up.

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

This is so wonderful, thanks all of you, thank you all for your words,, feelings and support - this is really helping to think about what is coming and what I want afterwards - to be able to write to all of you over and over again for years and years - thank you all for letting me write, for letting me join your families and the fight against this - and to lean on you, somehow reading your responses and going back and reading them again is helping - thanks

Steve5

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

and survive you will!  You got this and a whole bunch of suvivors on here to hang out when you are done with treatments.  I can't add to anything all have said, but what I can do is whisper a prayer for strenght, healing and sanity :) ...crazy overload at the moment, but just like a marathon keep looking ahead, one foot in front of the other and look for that finsih line!

 

Best,

 

Tim

Prayer whispered as I hit the submit button!!!!  Carry on!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Sorry I'm late for the welcome party....

Most all of the good advice has already been said....

Just be aware, we were all once where you are, both mentally, emotionally, and physically. We got through, so will you.. If you are lucky, as I was, you'll get through with minimal complications, pain and suffering...

Well, that's kind of misleading, LOL... I guess as well as you can get through, considering cancer, surgery, chemo and radiation.

You'll have to excuse me, I'm one ofthose abi-normal guys...

 

Bottom line though, you will get through it...attiude is huge (especially a positive one),determination, and hopefully some good genetics that you aren't aware of. 

 

Best,

John

josh r.
Posts: 205
Joined: Oct 2010

Hi Steve,

Like so many of our teamates have pointed out how a positive attitude can be "the strongest medicine" let's make a slight adjustment to your "want to beat this.." to "I am going to beat this!" I truly believe that my attitude of "never give up", thanks Jimmy Valvano and others, is the reason that I am NED since November 22nd 1991. It is that and the remarkable Dr.s and support staff, family, friends, my incredible wife and my Higher Power that I am writing this tonite. This wonderful "family of CSN" was not known to me at the time but I sure wish it was. These wonderful people are truly the "Pinces and Princesses of Peace and support." We won't go away and we want you to keep close and keep the "Faith" for that maybe the strongest "medicine " you have without any "side affects". You WILL beat this! josh r.

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

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

MarineE5
Posts: 760
Joined: Dec 2005

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

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

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.

josh r.
Posts: 205
Joined: Oct 2010

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.

jim and i's picture
jim and i
Posts: 1666
Joined: May 2011

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's picture
hwt
Posts: 1991
Joined: Jun 2012

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's picture
Steve5
Posts: 147
Joined: Oct 2013

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's picture
TracyLynn72
Posts: 739
Joined: May 2013

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's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

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

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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!

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

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

CivilMatt's picture
CivilMatt
Posts: 3066
Joined: May 2012

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's picture
Steve5
Posts: 147
Joined: Oct 2013

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

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Matt and others - what about working during treatments - the first week or two, how about driving to treatments, my wife and I are wondering what in general it will be like after the first two weeks and whether everyone keeps going to work early in the treatment and cannot later, and whether you always need a ride to treatments - my ride will be 90 minutes each way to and from, thanks - just wanted to get some more eductation and prepared.  PET scan tomorrow, Rad Oncol this week, port, and PEG install end of week - you are right for some reason this is a plan getting going and seems like it is a small step forward - I am working on thinking this through now one day at a time

Can I ask one more question - why do I feel so good - I can do anything right now like there is nothing wrong - walk, talk, ride, drive, chop logs, rake leaves, go to games - but then this lump in my neck - okay just talking this through and like I said helps to write it out - appreciate everyones input to get better prepared - am reading the superthread and taking notes - really helpful

Thanks for any input and your continued strength

Steve

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I have had complete radiation twice.  The first time, I worked every day throughout treatment. I was very tired, and slept a lot, but I was able to carry on with a reduced schedule.  This is likely as good as it gets.  The second rads was harder, as i had some pain issues too.  I still drove myself to and from rads every day, preferring to do it myself.  I didn't work during second rads, but I could have, albeit on a very reduced schedule.  I should say I had absolutely no complications whatsoever to either therapy.  Others have not fared as well, and with complications, all bets are off.  I had contingency plans in case of problems both times. 

 

pat

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Matt and others - met with the Rad Oncologist today - laid out that I will be getting 7 weeks of rad and chemo once per week Mon,Tues or on a Wed - 2 Gy a shot - the rads will only take 5 minutes but the doc says to plan an hour for each treatment - a CAT scan on each one to make sure they line it up right - he went over all the side affects - it was good to have all of you providing information so that it wasn't a complete smack in the face as to what might and is coming down the line - showed me a mask -looked like a fencers mask and told me it will go to my shoulders to keep them from moving around - offered valium for me since I am a little claustrophobic - needed an open MRI for a back issue versus the other kind - told me pain meds for my throat so that I would continue to take in liquids and keep the swallowing up - you all know the rest - tomorrow is the port and PEG and salivary gland move (on the good side) - next week dentist - the two weeks before I go in to prepare for treatment - simulation - did all of you have to wait that long - sorry - alot in this, but again helps to write, perhaps I should take this to the blog or this okay to keep it here

Thanks everyone - I read the CSN daily to prepare, see how and what others are doing and take strength from you guys - my wife and I are now making sure we use the "one day at a time" rule whenever we talk about preparing and what is coming and after

Steve

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

steve, glad you have a plan and that you felt you were prepared to hear what the doc had to say on side effects.  the valium is a good idea.  some others here used that or something else to help them.  i hope the port and peg are no big deals.  i know the peg is easy but i didn't have a port so not sure about that.  good luck at the dentist.  i hate the dentist worse than any type of doctor  Yell.  many here had to wait for their tx to get started so don't feel alone.  you didn't write/say too much.  you can never write/say too much here.  that's why we're all here, to listen to each other and help however we can.  so please write as much and as often as you want!  be sure to continue to use the "one day at a time" rule, it really does help.  take care.

God bless,

dj

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Steve, you seem to be taking everything in stride and have prepared yourself as well as anyone is able to. Your treatment schedule seems to be falling into the timeline most patients experience with the pre-treatment preps taking a few weeks before the first actual radiation/chemo day. Most patients find that the oncology nurses quickly become like extended family.  They are another source of reassurance and strength as well as someone you can reach out to at all hours of the day or night since one of them will most likely be oncall and respond to the emergency phone number you will be given.  The good CSN members posting here will continue to support you with information and encouragement as you move forward "one day at a time". Some of them have soft pockets where you can find comfort when you need to be carried over some rough spots.  The discussion threads will be easier to follow if you frequently "post a new forum topic" as the conversation evolves with the progression of your treatment. Starting a new topic section each time that you post updates or questions makes it easier to find the latest comments and replies without having to scroll through a long thread.  Will be thinking of you tomorrow and hoping you have an easy time with the Port, PEG, and salivary gland procedures.  

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

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.

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

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

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

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

 

God Bless

Hondo

Viilik70's picture
Viilik70
Posts: 59
Joined: May 2012

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's picture
Steve5
Posts: 147
Joined: Oct 2013

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's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

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)

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Jude and Ruben that is wonderful!! God Bless you - Thank you for your support - it really means alot!  I am looking forward to that light at the end of the tunnel - I am looking for a rebirth in Spring of new life - I have had my pre -op, I will have my PET monday and then get a port, PEG intalled this week and meet with rad oncol and oncol next week  - so like all of the great people here who have responded and helped I wil get a plan on the treatment - right now I believe it will be cisplatin each week and radiation daily for 6-7 weeks.  I can't wait to earn my righ to say NED!!  Thank you and everyone for not lettng me be alone - I am definitely drawing strength from all of you.

God Bless

Steve

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Jude and Ruben - and others who can comment - what are the two months like after treatment ends as far as do you need a caregiver during the day alot, has anyone been home with younger children during this period like 9 year olds on some days - just preparing and scheduling as best we can to prepare for these times.

Thanks

Steve

lornal's picture
lornal
Posts: 268
Joined: Sep 2013

For 2 months after treatment, I was still going to the hopital 3-4 times a week for fluids. I did not have a feeding tube.  Now that I know what they are like, I wish I did

Fortunately, my husband wasn't working, so he has mom, dad, and caregiver.  After 2 months, I did go back to work - parttime at first, and then full time.  But it was several more months before I started participating in the kids activities - mine were 10 and 15 at the time.  I worked, came home, ate something, and went to bed - probably for 3-4 months.

 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

You'll know best when you get to that point...

You know yourself better than we do.., for me I worked entriely from home during my treatment, and it was very doable..., computer work... 

But the several weeks post Tx, I did have much less energy and needed a lot more rest. 

 

I couldn't have catered to children around the clock for sure..., LOL.. But in all honesty, I don't think even at nearly five years post Tx I could deal with handling children 24/7.

Anyways, my thoughts is that you more than likely can take care of the kids most of the time, but you are going to have to rest yourself also...

Best,

John

wild willy's picture
wild willy
Posts: 32
Joined: Jun 2012

welcome steve. i dont have any words of wisdom but i do have some words of hope. if its any help to you i am almost 4 yrs out and doing pretty good. i am 3 months out from 74 yrs old and and just got back from my 3rd yr wilderness elk hunt. rode horseback and packed in the rockies. havent missed but one yr because of C. i am horseback almost every day and work on my 20 acre ranch/farm every day . its not easy and never will be but doable. i can eat most anything,no taste but can swallow. getting my saliva back slowly. as you can see it will take time but you can do it.dont expect overnight progress it will come in small steps. hope this helped.

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