10 years & 3 days since diagnosis

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kiwiinoz
Posts: 1166
Joined: Thu Jan 03, 2013 11:44 pm

10 years & 3 days since diagnosis

Postby kiwiinoz » Wed Dec 07, 2022 11:02 pm

Hi All

Just thought I would share with you the belated 10th anniversary of my diagnosis with stage IV rectal cancer.
Just over 10 years ago my wife & I had just had our 11th wedding anniversary, and bought our "dream home" when after Mrs Kiwi's loving reminders (I would never say nagging) she finally got me to got to a GI specialist as after 6 months of rectal bleeding I had not got anywhere after 4 visits to my local primary care (GP).

Before I went under the scope I expressed to my GI doctor and the nurse that was assisting that we had just purchased a great new home, and then when I came around, I noticed the atmosphere had chilled considerably and they wanted to talk to me once Mrs Kiwi had arrived to pick me up. That happened and it led to them advising me that I had colorectal cancer and that I needed to get a CT scan to get interim staging, which I proceeded to do. I can remember going in for the scan and crying in the machine with the radiologist waiting for me to stop so they could effectively get a decent scan, and then the phone call, a stage IV diagnosis with mets to my lung.

Things went well with my bowel resection, and I didn't need a stoma. Things went better as I was approved to have a lung resection, followed by 6 months of FOLFOX.

I can remember all that I met on this board and it was the one place I could come to and get understanding, laughs, stories of hope, and sadly, too many stories of saddness.

To those that I met along the way I have only thanks and best wishes.

To those of you how are just starting out, you have my heartfelt concern and support.

Cheers and thanks to you all

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

stu
Posts: 1603
Joined: Sat Aug 17, 2013 5:46 pm

Re: 10 years & 3 days since diagnosis

Postby stu » Thu Dec 08, 2022 3:18 am

So fantastic to see your post .

I remember well the photos of your new house and all the early days on the forum !

So delighted to see you are doing so well .
Long may it continue.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Markdale
Posts: 61
Joined: Wed Dec 02, 2020 4:45 pm

Re: 10 years & 3 days since diagnosis

Postby Markdale » Thu Dec 08, 2022 8:34 am

Congratulations
It’s really good seeing these anniversarys.
Hope you have many more
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule Biopsy unsuccessful
1/1/21 thoracotomy 1 met removed that wasn’t noticed on ct
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody

GMTX
Posts: 4
Joined: Thu Dec 08, 2022 10:51 am

Re: 10 years & 3 days since diagnosis

Postby GMTX » Thu Dec 08, 2022 11:00 am

Kiwi, congratulations indeed! Thanks for sharing ... an inspiration to all late-stage colorectal patients.
Best to you and family - GM

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: 10 years & 3 days since diagnosis

Postby nmorgen » Thu Dec 08, 2022 3:19 pm

Congratulations! I love seeing these type of posts. They give me a lot of hope.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

DarknessEmbraced
Posts: 3746
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 10 years & 3 days since diagnosis

Postby DarknessEmbraced » Sat Dec 10, 2022 2:30 pm

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! :)

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Atoq
Posts: 409
Joined: Wed Oct 25, 2017 9:31 am

Re: 10 years & 3 days since diagnosis

Postby Atoq » Thu Dec 22, 2022 6:36 am

Congratulations! Nice to read these posts! :D

All the best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED

User avatar
Kick'nAssCancer'sAss
Posts: 245
Joined: Tue Feb 25, 2014 4:38 pm

Re: 10 years & 3 days since diagnosis

Postby Kick'nAssCancer'sAss » Thu Dec 22, 2022 7:45 pm

Well there is a name I recognize

Kiwi you were the third reply back on my very first post in March of 2014

Mike
Oxaliplatin is bad ass stuff but not as near as bad as what you would imagine.
I thought I'd be incapacitated, have my hair fall out and be unable to work.
I worked through it, exercised through it, and still kept my hair.
You will have issues, but the potential rewards outweigh the minor irritations that it will cause to your life.
1 year later you will have it as a distant memory
Best wishes
Kiwi


I did indeed take the Oxi and it looks like it worked out for both us.

Congrats on a decade, many more to come

Mike
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME 2/26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 clear CT scans
Feb/18 clear scope
Feb/18 Sept 19 clear CT scans
DISCHARGED :P
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: 10 years & 3 days since diagnosis

Postby Jacques » Fri Dec 23, 2022 2:12 am

Kiwi -
Congratulations, and thanks again for your substantial contributions to this forum in years gone by that have helped many here achieve remission.

Take care ...

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CRguy
Posts: 10422
Joined: Sun Feb 10, 2008 6:00 pm

Re: 10 years & 3 days since diagnosis

Postby CRguy » Fri Dec 23, 2022 5:30 pm

Cheers and many thanks back to you Kiwi !

Here's to many more years ahead

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

User avatar
Atoq
Posts: 409
Joined: Wed Oct 25, 2017 9:31 am

Re: 10 years & 3 days since diagnosis

Postby Atoq » Sat Dec 24, 2022 3:22 am

:D Congratulations! :D :D

All the best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED

taexali
Posts: 14
Joined: Thu Jul 12, 2012 1:41 pm

Re: 10 years & 3 days since diagnosis

Postby taexali » Sun Jan 01, 2023 12:27 pm

Good luck and best wishes for 2023.

Taexali
Male 76 yrs.
DX 7/2007 at age 60 with Stage IVa Rectal with mets to lung
8/2007 to 9/2007 Chemo (Fufa?) & Radiation
12/2007 LAR + Colonic J-Pouch + Ileo
1/2008 to 9/2008 Chemo (Oxaliplatin) 15 Sessions!
11/2008 Ileo reversal
5/2009 Left lower lobectomy
11/2022 Still NED, 01/21 Skin Cancer- ugh!

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: 10 years & 3 days since diagnosis

Postby stevieb » Mon Jan 02, 2023 10:46 pm

Congrats!! I, too, have reached the ten year mark after Stage in diagnosis in Dec of 2012. I don’t come here much anymore but dropped in to say hello and congrats!

Stephen
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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horizon
Posts: 1661
Joined: Tue Apr 12, 2011 10:10 pm

Re: 10 years & 3 days since diagnosis

Postby horizon » Sat Jan 14, 2023 10:43 am

MY DUDE!!!!

This post made my week. Seriously.

So happy for you and Mrs Kiwi.

Your post did make me tear up. I remember crying the first time I met my surgeon. I couldn't believe what was happening to me. Look at us now!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: 10 years & 3 days since diagnosis

Postby utahgal7 » Sat Jan 14, 2023 2:22 pm

That's wonderful news. Here's hoping that you have many years to come as "NED". I LOVE reading these posts from long term survivors. Keep the good stories coming!

Best wishes,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection


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