I'm officially 10 years NED!

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

I'm officially 10 years NED!

Postby horizon » Wed Jul 14, 2021 11:30 am

Ten years ago I created an account on here scared out of my mind. I didn't even really know what colon cancer was when I was diagnosed. No family history, no risk factors, had given up red meat years ago, worked out four times a week and somehow I got colon cancer. It was such a mixture of confusion, fear, anger, etc all at once. I had a colon resection and 6 months of chemo (XELOX).

I can now officially say that I'm ten years NED! This was my first scope with Suprep and it went so well it actually made me angry. Normally I feel so drained and beaten down when I arrive for my procedure. This time I felt curiously close to "normal". With the golytely prep you have to drink a massive amount of the worst tasting liquid on Earth and then I would drink Gatorade in between doses. I always felt like I was close to vomiting. The Suprep instructions almost seemed like a joke. One 16 oz glass and two glasses of water in an hour? Repeat hours later? And it's laughable that I've read comments from people complaining about the taste. Sure it wasn't great but it's nirvana compared to what golytely tastes like. Put some crystal light in it and it tastes like bad fruit punch. I've asked for years to be able to use the newer preps. One of the excuses I was given was that Golytely cleans you out better. I know now that's a load of hoo ha because four hours after I took my first Suprep dose I was still "expelling". My doc commented that my prep had performed superbly. I will N-E-V-E-R go back to the preps that make you drink a massive amount of awfulness and you shouldn't either if you are given a choice!

I can't stress enough how much forum members have helped me in the past.
  • They talked me into a port when I was initially dead set against it. I don't think I could have made it through chemo without it.
  • They boosted me when six months of chemo felt impossibly long.
It hasn't been all sunshine and rainbows. I've seen some appalling behavior on here but the good far outweighs the bad.

The life I'm living after a cancer diagnosis isn't the one I would have wanted but I'm incredibly grateful to have it (if that makes any sense).

I always appreciated when people shared their positive stories and hope this resonates with someone.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

DCook54
Posts: 27
Joined: Sat Sep 05, 2020 10:12 pm

Re: I'm officially 10 years NED!

Postby DCook54 » Wed Jul 14, 2021 1:43 pm

Congratulations!! And thanks for the info on bowel prep! (I never thought I'd be saying that!) I am only 18 months in and I constantly look for stories like yours to give me real-life hope that I can do it too!
54 year old mom of 3 grown children and grandmother of 3
Stage IV colon with mets to lungs
KRAS G12V
NRAS Wild
Dec 2019- partial colectomy to remove mass adenocarcinoma 0/31 Lymph nodes positive
Jan 2020-PET showed NED
Jan 2020- Staged at I
July 2020-Ct shows nodules both lungs
July 2020-VATS both lungs positive crc mets Stage IV
August 2020 began 1/6 cycles Folfox
Nov 20 Completed 6 Folfox
Dec 20 Colonoscopy Clean, CTs clean
Dec 20 NED
April 21 Stable scans.one 4 mm lung nodule to watch

mymom
Posts: 1293
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: I'm officially 10 years NED!

Postby mymom » Thu Jul 15, 2021 7:40 am

That’s great!!!!
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

Re: I'm officially 10 years NED!

Postby horizon » Thu Jul 15, 2021 7:52 am

DCook54 wrote:Congratulations!! And thanks for the info on bowel prep! (I never thought I'd be saying that!) I am only 18 months in and I constantly look for stories like yours to give me real-life hope that I can do it too!


Another tip on things you never thought you'd talk about in public: bidets are a game changer for a colonoscopy prep. My butt didn't feel like I had been rubbing it with sandpaper when I was completely done.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

User avatar
CRguy
Posts: 10317
Joined: Sun Feb 10, 2008 6:00 pm

Re: I'm officially 10 years NED!

Postby CRguy » Thu Jul 15, 2021 5:16 pm

Mega CONGRATS on the milestone my friend.

Keep kickin' BUTT and takin' names

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

Re: I'm officially 10 years NED!

Postby horizon » Fri Jul 16, 2021 7:05 am

CRguy wrote:Keep kickin' BUTT and takin' names


I see what you did there! :lol:
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

User avatar
CRguy
Posts: 10317
Joined: Sun Feb 10, 2008 6:00 pm

Re: I'm officially 10 years NED!

Postby CRguy » Mon Jul 19, 2021 3:40 pm

:mrgreen:
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
John72
Posts: 344
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: I'm officially 10 years NED!

Postby John72 » Sat Jul 24, 2021 5:00 pm

Congrats Horizon! Glad to see you still doing well!
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

Re: I'm officially 10 years NED!

Postby horizon » Sat Jul 24, 2021 7:03 pm

John72 wrote:Congrats Horizon! Glad to see you still doing well!


Thanks John! I remember you and I had similar dates!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

DarknessEmbraced
Posts: 3607
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm officially 10 years NED!

Postby DarknessEmbraced » Sun Jul 25, 2021 8:29 am

Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
DBF
Posts: 326
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: I'm officially 10 years NED!

Postby DBF » Sat Jul 31, 2021 8:56 pm

Congrats!! That’s quite a milestone.

I was asked (maybe on the Colon Club calendar application?) what I learned from this whole cancer experience. My answer was that I learned never to drink anything that ends in “lytely.” :lol:

So nice to see your post.

All the best!
Donna
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :)
2021: NED :D
Mom to 3 boys: 22, 11 & 7

User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

Re: I'm officially 10 years NED!

Postby horizon » Sun Aug 01, 2021 8:11 am

DBF wrote:I was asked (maybe on the Colon Club calendar application?) what I learned from this whole cancer experience. My answer was that I learned never to drink anything that ends in “lytely.” :lol:



Yesssssssss. Never again for either of us!!! :D
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 4 guests