How long have you survived

Skiffin16

Butch_P said:

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

Understandable...

Myself and many others, resorted to recording the food channels for when we could eat well again, LOL... But then again, I'm abi-normal...

Unfortunately for us, at times recvovery is measured more in weeks and months versus days and weeks..

But you'll get there.., at six months post I had made huge gains, and would have been very able to survive and thrive what I had back.. It took all of two years probably to get 100% taste back, maybe 95% saliva, and actually feeling very good.

Some are quicker, some slower...

Again,

John

wmolivertx

Survival

15 years 4 months stage 4 SCC of left tonsil but luckily enough no lymph node involvement.  Radiation protocol and chemo trial at MD Anderson.

turbomustang84

i was told i had stage 4

i was told i had stage 4 cancer and my probable outcome was 6 months and that was 17 years ago ......i outlived the Doctor that told me that

pascotty

Over 5 years now

Hi all, just checking in.  Alive and kicking.  One of the better cancer to get so my doctor said, I think I believe him now xxxx

 

wmc

pascotty said:

Over 5 years now

Hi all, just checking in.  Alive and kicking.  One of the better cancer to get so my doctor said, I think I believe him now xxxx

 

Great news a great thread as well

Very good to hear you're FIVE YEARS. Thank you for starting this as many have enjoied it.

I just passed my 2 year mark and still NED as expected. Well might be early as I see my doctor in a few weeks but I expect NED no less.

Bill

_Hutch_

fisrpotpe said:

14 years 9 Months
5 golf ball sized nodes wrapped around carodid on left side of neck. 38 treatments of radiation, 3 one week long 24 hour per day chemo treatments and radical neck disection.

golf

im not golfing with you!!! Or at least until I get started with treatment. Just diagnosed about one hr ago, so far they say

lesion at base of tongue with some lymph nodes.  Fun fun fun I'm sure!

Great to hear your story

Norm

noelle21

four years and ten months....

Diagnosed January 2011, left sided tonsil scc, with ipsilateral lymph node involvement. Radiation & chemo. 

Now I'm on my second occurrence diagnosed October 2015 -- TORS (surgery) scheduled November 30th. CT/PET show NO met's & tumor small & localized. My prognosis this time is very good, thanks to being caught so early.

Every day of survival is so awesome, things could have worked out much differently.

mls351w

sweetblood22 said:

Will be two years in October.
I found my lump in my neck 10/9/08. Stage iv SCC, took out 23 lymph nodes and my salivary gland, 3 nodes bad. 30 rads no chemo. Last day of treatment 5/15/09.

9 years

9 years.....ssc-bot-stage 4.  Chemo/rad/surgery to remove 3 nodes. Surgery was November 29th, 2006. So yeah, Thanksgiving is pretty special to me!

jackflash22

survive

three years come April  BOT 3 lymph glands cancerous. Bowel cancer 1 year.

Bsauls94518

chark said:

Feels like forever

Almost 3 months, Esthesioneuroblastoma.

At this point having trouble remembering what life was life before cancer took over my world. But I am taking it back and look forward to normal, or atleast normal for me.

This was a good idea.

2 Weeks!

ENB- Ethesioneuroblastoma diagnosed in September of this year.  I was so lucky to have high blood pressure that caused a severe nose bleed taking me to the Emergency Room.  The bleed was quite scary but the ENT that took out the packing once the bleed stopped checked out my sinus cavity with a scope and ordered MRI/CT Scan and found the tumor.  Surgeon was pleased they caught this in an early stage and surgery proved to have a negative margin on the Dura/Skull Base.  One spot was questionable on the pathology but surgeon wants to keep an eye on it.  I may have a second opinion because it seems most people go through radiation once surgery is over.  I don't want radiation but would hate to later find this coming back or showing up in my lymph nodes.  It's been a roller-coaster ride these past few months and I don't really know what is going on day to day sometimes, but I am so happy and blessed to have met all of you to share our hopes and fears. 

gdawg55

jackflash22 said:

survive

three years come April  BOT 3 lymph glands cancerous. Bowel cancer 1 year.

1 Year and Going Strong

I am exactly 1 year post surgery for Stage 1 Tonsil cancer.  So far NED!

wmc

27 months and a second chance on life.

I have survived 27 months and see no reason to worry about it coming back. Think back to Sept 2013 and my surgery Oct 2nd 2013 I relise just how blessed I am. Counting my  surgen and myself there were three others that really did belive I would make it and survive. My son and Brother and 250 at work [two believed] all thought they would never see me again. I just knew after my visit with my priest for the blessing, I would get through this just fine. ACC just released new survival numbers and have really lowered them, mine went down to 53% for five years. In my research which was in great detail they should be way over 70%, so i'll go with mine as that it what I believe. Yes it is life changing, and for me it has been for the better. I was given a second chance on life. In a small way, I got a do-over, or at least get to write a new ending.

So I try to support all that are going through this, and also support my fellows survivers that too had their larynx removed. Showing them with videos things they were told they can never do anymore, that they can, if willing to just work at it.

Bill   Oct 2nd 2013

Hondo

pascotty said:

Over 5 years now

Hi all, just checking in.  Alive and kicking.  One of the better cancer to get so my doctor said, I think I believe him now xxxx

 

Hi Pascotty

From November 2015 to November 2002 make 13 years when I first heard the word you have NPC Cancer. To make it even worse was to hear the same words again in October 2004 and then again in June 2006. But by the grace of God and for His glory I am still here doing the work of a faithful Minister.

 

PS: I am happy to see you posting again and to know you are doing well

 

Tim

 

Naso2004

Crazymom said:

Survival

So glad to read all the posts and what is really important in life.

 

I had SCC left tonsil and one left lymph node  T2N2 M0   I have been Clear for 18 months...have a 3 months scan on July 25, next week.  I am so gratefull I have this sight and all you wonderful people. I forget sometimes what is important.

 My 13 year old son is off at Jamboree 2013 with the Boy Scouts and calling home complaining and wanting to come home.  I was all stressed about it until I came to this sight and you guys helped me realize what is important.  I just sent him a text and said if you cannot have fun at a camp I paid $2,000 for, you can work at McDonalds next summer.  He texted me back and said he is having fun, will stay the entire camp and does not want to work at McDonalds next summer!

PS..my heath is good and I have no bad side effects....a bit of Chemo brain, forgetfulness, but everything else is good....Ann

 

Ann

Ann. Glad you are better. I

Ann. Glad you are better. I think you and your son's communication is HILARIOUS! A parent is supposed to teach their child to survive at their own place, not at home. Good council on your part!!!

Naso2004

How long survived?

Hello all.

My husband was diagnosed with nasopharyngeal cancer in March 2004. He had surgery to remove the tumor from his Eustachian tube and immediately began 3 rounds of chemo 3 weeks apart before he started his 35 days of radiation in July 2004. And on each Friday he also had a little chemo too.

In September 2004 he had a gamma knife procedure with a halo bolted to his head and received radiation equal to 35 doses in one day. He had the mouth and throat sores. He was on a liquid diet. No feeding tube. He had no pain medication. He did use the magic mouthwash. He made it through to chemo fine, but the radiation made itself known the second treatment. He has had two ear tube surgeries.

He retired in 2006, which was early as we had planned before he ever had cancer.

He had the hyperbaric oxygen treatment in summer of 2012 until it affected his blood pressure. It took six months to get his blood pressure back to normal.

He had surgery in Sept 2013 for debridement in his sinuses. He had another sinus surgery in Jan 2014 for his MRSA infection in his sinuses which slipped through the base of his skull and developed meningitis. He had a stomach feeding tube. He left the hospital for a nursing home. He could not walk much less sit up.

He has had procrit shots in 2015, but not very effective.

He had regular emergency gall bladder surgery July 2014. He has gone down hill since.

He was in the hospital ICU and rooms twice in Dec 2015. The antibiotics did not work and the left side of his skull hurts constantly. He is home now with hospice coming in. Only receiving pain meds.

He has had various other things like blood infusions, etc through the years.

He had stage 3.

He has had a lot of good days and times since 2004. As his doctors say 'he is a walking miracle' . 

 

 

glend04

i am 2 months post treatment

T1N2M0 thank you for the 2nd life. God bless us all.

Kent Cass

delnative said:

Almost two years
I had Stage III SCC of the right tonsil, one lymph node involved. Had tonsillectomy, 30 rads and two rounds of Cisplatin, followed by a modified radical neck dissection three months after treatment ended. On Oct. 5 I celebrate the second anniversary of the last day of radiation.

--Jim in Delaware

.

.

Kent Cass

Noellesmom said:

four years

My husband is a four year survivor of hypopharyngeal cancer Stage IVa.

 

 

Bunnery

Coming up to 5 years!

I had CUP - Cancer of Unknown Primary - treated as neck cancer as that was where the secondaries were found. Had Radical Neck Dissection, followed by 33 radiotherapies and two rounds of Cisplatin chemo. Also had to cope with the dreaded PEG. Feel fine now - on no meds at all! Getting checked every 6 months - but may be discharged at the end of the year. Wishing you all well! xx

CivilMatt

time

Hi Jen, 5 whole months, got a list of must dos, well I don’t I simply must start taking my time above ground as more finite, because you never know, I am 6 months post and nobody scheduled me a PET Scan and I thought we were friends. Some thing is funky in Matt Land. Otherwise I sleep and feel great.

update 7.16.16  -  4y 5m post.  Hanging in there.

 Best, Matt