How long have you survived

Nous Defions

Survivor

June 27, 2012 diagnosed with T2N2CM0 Stage IV SCC (HPV+) primary right tonsil with left and right lymph node involvement.

26 months and still kicking!! 

My life has changed drastically since my diagnosis and it has been hard dealing with the "New Normal".  I fight it every day and insist that I am the same person before cancer, both mentally and physically.  I will continue to fight and never give up because that is what cancer Survivors do!!

debbiejeanne

Nous Defions said:

Survivor

June 27, 2012 diagnosed with T2N2CM0 Stage IV SCC (HPV+) primary right tonsil with left and right lymph node involvement.

26 months and still kicking!! 

My life has changed drastically since my diagnosis and it has been hard dealing with the "New Normal".  I fight it every day and insist that I am the same person before cancer, both mentally and physically.  I will continue to fight and never give up because that is what cancer Survivors do!!

Nous Defions, you got that

Nous Defions, you got that right!  that is a wonderful attitude and the only one we can afford to have.  i think we all have some days where its hard to deal with our new selves, but like you said, that's what SURVIVORS DO!!!  live on!!

God bless you,

dj

Noellesmom

debbiejeanne said:

Nous Defions, you got that

Nous Defions, you got that right!  that is a wonderful attitude and the only one we can afford to have.  i think we all have some days where its hard to deal with our new selves, but like you said, that's what SURVIVORS DO!!!  live on!!

God bless you,

dj

my husband, Jim

Four years post treatment for advanced hypopharyngeal and base of tongue SCC with one lymph node involved.  Released by oncologists last month!

Katie10485

Noellesmom said:

my husband, Jim

Four years post treatment for advanced hypopharyngeal and base of tongue SCC with one lymph node involved.  Released by oncologists last month!

I just wanted to say congratulations to all the survivors.  My dad was newly diagnosed with SCC and I am very very worried, and I retread this post a lot to give myself hope.  I know so many of you have beaten this and I am doing my best to stay positive for him.  I hope we will be one of the posts 10 years from now reporting back that all is good!!!! 

CivilMatt

What brings YOU here? Who me?

 

H&N past & present,

Happily, 1 year and 4 months post from stage IVa, SCC, BOT, 1- lymph node  & HPV+ (surgery, rads & Erbitux).  What a crock of crapola made right by the H&N site, whew!  A little pocket of wonder, reasonableness and sanity surrounded by a morass of helplessness and fear.

Everybody keep kicking, I wish you all the best.

CivilMatt

UPDATE (6-28-2014):  2y3m post, feeling good, in my pj's!

UPDATE, UPDATE (10-5-14) 2y6m12d post, feeling groovy, just roasted marshmallows!

 

 

 

 

 

 

Anonymous7/6/2023

Katie10485 said:

I just wanted to say congratulations to all the survivors.  My dad was newly diagnosed with SCC and I am very very worried, and I retread this post a lot to give myself hope.  I know so many of you have beaten this and I am doing my best to stay positive for him.  I hope we will be one of the posts 10 years from now reporting back that all is good!!!! 

11 months. I was T2N2BM0

11 months. I was T2N2BM0

I wonder if this could be a pinned topic? So that people see it near the top? It's a golden thread of hope.

wmc

Thanks for starting this post.

Let me say thank you for starting this post, and for all who have added to it. So many straingers have been kind and very helpful to me and all he others that needed to join this wonderful group, that no one ever really wanted to be here. But as life will have it, we all are and I'm doing better because of this group. You get to feel and share others pain and joy when you read someone is NED. You also get the sad news someone you know, in a way, has lost the fight. So many of you have become like an extention of family and the only ones that can really understand what someone is going through. 

I have survived 8 months and still NED and doing OK. Cancer of the supergoltic and tumor was on vocals coards. [Told it was T4, N2, M0, SSC] I was told that due to my servier lung condition I could not servive radation or the surgery. Thought I was prepaired to hear anything the Dr. could say but was I wrong. He did say, if we remove your larynx and give you a perminate trach we can do the surgery and remove the tumor. We will also do a radial dission on both sides of your neck [2~5] and remove the lymph galnds, 86 total. Well, that was not a had decision to make. Lets schedule the surgery, lose my vioce box and learn to breath my neck, but the cancer is gone. They said it will be life changing, and that might be an understatment, but I have a life to change and thankful for the second chance. Ended up being T3;N0;M0; prayers do get answered.

Bill Oct 2, 2013

Thank you all  

pascotty

Woo Hoo

Woo Hoo. Posted this what seems like a lifetime ago. Coming up 4 years plus. Sweet and savoury Both returned now. Saliva seems quite good but has a mind of its own. Put on an excessive amount of weight which was just diagnosed hyperthyroidism. Meds will now sort that out. Happier and healthier than ever. Good luck to everyone newly diagnosed And hang in there. And howdy to all the old survivors. jen xxxx

Paul Befumo

How long have you survived?

 Hi,  I had a resection of my Stage 4 Gloiblastoma, Multiforma at the Mayo Clinic over five (closer to six ) years ago. It was in my right frontal lobe. I guess the doctors who told me my life expectancy was 6 to 12 months were wrong. I made many lifestyle changes, including adopting a vegan diet. my objective for posting this information is to give others who are given abysmal prognoses, not to give too much credence to all the negative prognosticators. THERE IS HOPE. False hope is not harmful. FALSE HOPELESSNESS IS! In retrospect I believe my success where others have failed was due to my belief that I could survive, that I had to survive, as well as some very specific lifestyle changes.

 

Best regards to all.

 

Paul

Crazymom

Almost 3 years

Left tonsil, two left lymph nodes.  HPV +,   I had radiaion and chemo for 6 weeks and have been NED for the last 2.5 years.  Feeling good and enjoying life.   Ann

Glenbucket

How Long Have You Survived

Hi, this is my first post. I was diagnosed with osteogenic sarcoma in 1971 when I was 19. Had my right lower mandible from the middle of my chin to the mandibular joint resected. At the time there were no reconstructive possiblities so I went on my merry way. Checked in every few months for the first 2 years and then every 6 months for a year and then every year for about 8 years. I guess i was a bit of a success story so the Cancer Clinic wanted to follow my story passed the usual 5 years. Then one day I was in for a check-up and in comes this ENT/Head & Neck surgeon and he says want to get that fixed? A bit of a shock after 15 or so years to say the least! So I agree and we embarked on a fibular free flap reconstruction. All went well with the surgery except for needing 2 skin grafts for my leg after the suture line split open just as I was to be released from the hospital. All in all it was a good thing getting the reconstruction. They couldn't make me look like George Clooney or anything but it was quite an improvement. Hell, lets face it I'm just happy to still be alive some  43 years from the original diagnosis!! This cancer thing can be beaten and I've had a good career driving truck for Canada Post and am now retired and enjoying life. So there's my story and I hope it encourages some people to believe they CAN win.

MrsBD

New to this

You are all such an inspiration! I am two months post treatment for SCC base of tongue with positive nodes on each side. (T2, N2c, M0, Stage 4a) Still feeling pretty crummy, but taking baby stips to eat normally again. Tired of feeling sick! Scan in two weeks.

IAmStrong

Paul Befumo said:

How long have you survived?

 Hi,  I had a resection of my Stage 4 Gloiblastoma, Multiforma at the Mayo Clinic over five (closer to six ) years ago. It was in my right frontal lobe. I guess the doctors who told me my life expectancy was 6 to 12 months were wrong. I made many lifestyle changes, including adopting a vegan diet. my objective for posting this information is to give others who are given abysmal prognoses, not to give too much credence to all the negative prognosticators. THERE IS HOPE. False hope is not harmful. FALSE HOPELESSNESS IS! In retrospect I believe my success where others have failed was due to my belief that I could survive, that I had to survive, as well as some very specific lifestyle changes.

 

Best regards to all.

 

Paul

Kudos!

I totally agree with you on attitude.  I went from a dismal prognosis, almost bit the dust during treatment when in acute renal failure and then got ticked off.  I am now 4 1/2 yrs out!:)  Not surviving is simply not an option for me.  Thanking God for today is everything, even if I hurt.  My feet still touch the floor!  So my goal for today is to make a memory!  And never forget to laugh and play:)  Hooray for you.  Being a nurse, I get the gioblastoma too.  You are amazing!  And an inspiration.

Best to All....

Don't forget to change your self dialogue too.  "I AM Strong!  I AM Healthy!  I Am_____!"  Our words and self talk have power.  Even if you don't feel it or look it as I was when I started this, your body catches up.  Say it outloud daily at least 10 times.  I bathe this in prayer....

Linda

 

 

IAmStrong

MrsBD said:

New to this

You are all such an inspiration! I am two months post treatment for SCC base of tongue with positive nodes on each side. (T2, N2c, M0, Stage 4a) Still feeling pretty crummy, but taking baby stips to eat normally again. Tired of feeling sick! Scan in two weeks.

Hang in there....This Will Pass!

Try not to look ahead much.  A day at a time, good medicine for life anyways.  We all were there too.  5 minutes at a time if that is all you can muster.  Just Believe it Will change.  I avoided sugar...then one day realized if I didn't get calories somehow I would wither away.  So icecream with malt saved me literally as in blizzards etc.  For quite some time.  Baby steps are good. 

 

edreddog

Skiffin16 said:

Glenna

One of my bestest buds on here...

Unfortunately lost her battle..

Rest in Peace my friend

~Gone not forgotten...

John

Earache

 

can you remember if you had a persistent earache on the side to be treated mine has pretty much been hurting for at least two weeks,I ask my ENT and he gave me numbing drops for it which does not seem to work.just wondering if this is just another effect of this disease? Also have head pain around the same area.I go for my Pet tomorrow and am a bit concerned. Had ct /sim Thursday. Fri. Was MRI with no word from anyone, but is weekend.

Butch_P

Cancer Free from stage 4 tonsil & lymph node cancer (HPV found)!

Hello all!

I am 3 months past my last cancer treatment (2 chemos about 1 month apart and 7 weeks of radiation 5 days a week).  My last petscan (about 3 weeks ago) was cancer free!!!  My Oncologist is so certain about my cure that I will not have future petscans, only catscans which are much quicker than petscans (yayay - hated my petscans)!

My thraot pain is about 95% gone and I can swallow fine and my tastebud seem unaffected!  However, there are several issues left.  First, my extreme dry mouth.  I am taking Salagen for the issue and I have a magrinally improvement!  Second, I have absolutely no appetite;  I used to be 385 lbs and loved food.  I am now at 240, but I'm very concerned about my current anorexia! I force myself to eat but am getting under 1400 calories (sometimes much less) daily. Third, my energy level is very low however my Oncologist said pain would leave quickly but energy would take longest to return!

Have others had these issues and, if yes, what solutions did you find most helpful and what progess (if any) did you achieve?

Thanks in advance!

Butch (Capitol District, New York)

MGC

edreddog said:

Earache

 

can you remember if you had a persistent earache on the side to be treated mine has pretty much been hurting for at least two weeks,I ask my ENT and he gave me numbing drops for it which does not seem to work.just wondering if this is just another effect of this disease? Also have head pain around the same area.I go for my Pet tomorrow and am a bit concerned. Had ct /sim Thursday. Fri. Was MRI with no word from anyone, but is weekend.

Earache

I had earaches off and on prior to diagnosis and treatment on the primary side. After treatment ended no more earaches.

OrchidNancy

Butch_P said:

Cancer Free from stage 4 tonsil & lymph node cancer (HPV found)!

Hello all!

I am 3 months past my last cancer treatment (2 chemos about 1 month apart and 7 weeks of radiation 5 days a week).  My last petscan (about 3 weeks ago) was cancer free!!!  My Oncologist is so certain about my cure that I will not have future petscans, only catscans which are much quicker than petscans (yayay - hated my petscans)!

My thraot pain is about 95% gone and I can swallow fine and my tastebud seem unaffected!  However, there are several issues left.  First, my extreme dry mouth.  I am taking Salagen for the issue and I have a magrinally improvement!  Second, I have absolutely no appetite;  I used to be 385 lbs and loved food.  I am now at 240, but I'm very concerned about my current anorexia! I force myself to eat but am getting under 1400 calories (sometimes much less) daily. Third, my energy level is very low however my Oncologist said pain would leave quickly but energy would take longest to return!

Have others had these issues and, if yes, what solutions did you find most helpful and what progess (if any) did you achieve?

Thanks in advance!

Butch (Capitol District, New York)

Hi Butch

Hi Butch,

I just came upon your response to this thread. First off, congrats on your very successful treatment! My husband is the one with cancer (everything the same as yours). However, I think that your question was buried at the end on this thread. I just wanted to suggest that you start a new topic with your questions. I think that will help for more people to see your post and answer some of your questions. Best of luck!

Nancy

Skiffin16

Butch_P said:

Cancer Free from stage 4 tonsil & lymph node cancer (HPV found)!

Hello all!

I am 3 months past my last cancer treatment (2 chemos about 1 month apart and 7 weeks of radiation 5 days a week).  My last petscan (about 3 weeks ago) was cancer free!!!  My Oncologist is so certain about my cure that I will not have future petscans, only catscans which are much quicker than petscans (yayay - hated my petscans)!

My thraot pain is about 95% gone and I can swallow fine and my tastebud seem unaffected!  However, there are several issues left.  First, my extreme dry mouth.  I am taking Salagen for the issue and I have a magrinally improvement!  Second, I have absolutely no appetite;  I used to be 385 lbs and loved food.  I am now at 240, but I'm very concerned about my current anorexia! I force myself to eat but am getting under 1400 calories (sometimes much less) daily. Third, my energy level is very low however my Oncologist said pain would leave quickly but energy would take longest to return!

Have others had these issues and, if yes, what solutions did you find most helpful and what progess (if any) did you achieve?

Thanks in advance!

Butch (Capitol District, New York)

Welcome Butch...

Like mentioned, please start a new thread and introduce yourself so all can see, and respond.

Myself, I look back on this thread that I responded to over five years ago now.. I'm over six years post Tx, and my onco says in complete remission..

I was STGIII SCC Tonsils and a lymphnode.., sixteen weeks of four chemo types, and 35 daily rads.., similar to yours.

In answer to your question, you are probably just ending the the worse of your recovery.. Soon you should start getting back a lot that you are lacking.. But it'll take time, energy depends a lot on your calorie intake, and you've been low for awhile... I'm sure that'll change soon..

Hang in there bud.., I'm sure within a few months, you're going to see a remarked change in things..

Best,

John

Butch_P

Skiffin16 said:

Welcome Butch...

Like mentioned, please start a new thread and introduce yourself so all can see, and respond.

Myself, I look back on this thread that I responded to over five years ago now.. I'm over six years post Tx, and my onco says in complete remission..

I was STGIII SCC Tonsils and a lymphnode.., sixteen weeks of four chemo types, and 35 daily rads.., similar to yours.

In answer to your question, you are probably just ending the the worse of your recovery.. Soon you should start getting back a lot that you are lacking.. But it'll take time, energy depends a lot on your calorie intake, and you've been low for awhile... I'm sure that'll change soon..

Hang in there bud.., I'm sure within a few months, you're going to see a remarked change in things..

Best,

John

Thank you

Everyone!

 

Thanks for the replies.  My apepitite is returning - thank God!  I'm regularly consuming 1600 calories (which is the minimum I should have EVEN to lose weight).

 

Knowing me and my impatience I'm probably on schedule with my recovery; I guess I just want it now!  Right now!  LOL!

 

Again, thanks,

 

Butch