Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

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Dennyp
Posts: 49
Joined: Thu Oct 29, 2020 9:28 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept 4/2022

Postby Dennyp » Mon Sep 05, 2022 6:45 am

That’s awesome, congratulations!!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby CRguy » Fri Dec 16, 2022 12:06 am

With my own home brewed follow up protocol in place ...
I will see my Doctor next week for an annual physical and go over all the recent lab / imaging results :shock:
( just updated the topic post as to numbers of items )

We shall see ... what, we shall see !
Will update asap after that review

Cheers and Harmony to ALL on the Journey
CRguy
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

aquarian_asian
Posts: 35
Joined: Wed Jul 07, 2021 7:07 am

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby aquarian_asian » Fri Dec 16, 2022 12:31 pm

Advance wishes, CRguy to rock and roll . Have an wonderful new year to start with a good news as always. Cheers
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby roadrunner » Fri Dec 16, 2022 12:41 pm

I hate the scanxiety, that’s for darn sure. I try to cabin it to day-of ‘til results, kinda works. But then, you’re an old pro by now. Good luck!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby CRguy » Sat Dec 17, 2022 7:18 pm

Thanks for the good wishes homies !!!!!

Honestly, I am too damned busy with stuff now to have much nervous, worry energy to spare ... :shock:
BUTT ... yes, sadly or gladly, I am a veteran of the "drill"
and we all know :shock: "the drill" ... hurry up and wait :evil:

Stay safe and keep on ... keepin' ON
The Journey

Cheers all
CRguy
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

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby nmorgen » Mon Dec 19, 2022 11:32 pm

Good luck on your checkup and scans

Btw I love that you basically have a journal on the forum.
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

Utwo
Posts: 283
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby Utwo » Tue Dec 20, 2022 3:56 pm

CRguy wrote:I will see my Doctor next week for an annual physical and go over all the recent lab / imaging results :shock:
CRguy, do you still need these annual scans considering that (to the best of my knowledge) you are more than 10 years NED?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby CRguy » Tue Dec 20, 2022 11:58 pm

nmorgen wrote:Good luck on your checkup and scans
Btw I love that you basically have a journal on the forum.

Thanks for the good wishes !! I will update specifics in a bit ... BUTT
... yes some folks here have kind of a tradition of "blogging" their Journey
and I believe it is important to pay it forward and get the info out there for the forum,
JMO

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby CRguy » Wed Dec 21, 2022 12:30 am

Utwo wrote:CRguy, do you still need these annual scans considering that (to the best of my knowledge) you are more than 10 years NED?

Hey homie,
NEED as in SOC = probably not :shock:
NEED as in ... I am CRguy and this is MY life, SOOOOO
we do things MY WAY ... then YES! :mrgreen:

Probably need to refer to my "Journey Journal" here ... BUTT
I have told my Docs two things :
1. "You will miss more for NOT LOOKING ... than not knowing." = quote from my Medicine Prof at Vet school
2. I would rather die from too much radiation ... than a cancer you missed because YOU WERE NOT LOOKING FOR IT :evil:

I realize I am in a novel position, being a retired Vet with 40 years in practice, and then a patient in the CRC world.
I speak to doctors with my voice, from many years, of doing what they do.

Doctors who listen and talk WITH me ... I keep.
Doctors who talk AT me ... I don't.

SO Far so GOOD !

Hence my own monitoring protocol, developed since being released from the official cancer agency I dealt with.

It was always about having MORE eyes on the prize
More imaging modalities
More feedback from more specialists.

The xray / U/sounds instead of CTs was only after I was released from follow up from the cancer agency.
Less radiation, more imaging, more "eyes"

My GP family Doc was 100% on board with the plan.

WHY did I start this ???

I had a few CT scans after resection and "normal" follow ups.
ALL good.

Started my xray / U/sound personal plan 6 months later ...and...
WHOOPEE SHIT

On a survey xray a very GOOD radiologist picked up a possible lung met, so
the rest is MY HISTORY :

resection
follow ups via cancer agency ... after I basically found the met
and NOW my follow up imaging plan as I see it ... BECAUSE THEY DID NOT SEE IT !!!!

WORD !
mike drop :shock: :mrgreen:

CRguy on the Journey

" I did it MY way !!! "
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
CRguy
Posts: 10422
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

Postby CRguy » Sat Dec 31, 2022 8:44 pm

And SOOOOOO ...
apparently all is normal in the CRguy world so far.
Imaging reports have no changes or new concerns => I am very grateful and happy !
Bloods are all OK !

My Doc and I have planned to get an actual CAP CT scan sometime this New Year
AND I am being overly pro-active in getting a follow up echocardiogram and review with my Cardio honcho
Just because I can :shock: :twisted: :mrgreen:

A good way to end 2022 and hopefully spread some good vibes to all my homies HERE for the New Year

ALWAYS on the Journey with you all

In Love Peace and Harmony moving forward ... together
CRguy
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

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

Postby roadrunner » Sat Dec 31, 2022 8:48 pm

Good to hear, brother. Happy New Year!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

Postby nmorgen » Sat Dec 31, 2022 11:25 pm

I’m glad everything is clear. Now you can start the New Year with a positive attitude.
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

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

Postby CRguy » Mon Jan 02, 2023 8:40 pm

Actually, I start every year that way or ...
I honestly think I would not still be here after 16 years :shock:

Love Peace and Harmony for the New Year
to ALL on the Journey
CRguy
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

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 31/2022

Postby nmorgen » Sat Jan 07, 2023 1:43 am

I am striving to start my everyday with positivity. It is not that easy. I think I need an inspirational poster like I had when I was young. Happy New Year crcguy!
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

Utwo
Posts: 283
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Dec 14/2022

Postby Utwo » Mon Jan 16, 2023 5:05 pm

CRguy wrote:1. "You will miss more for NOT LOOKING ... than not knowing." = quote from my Medicine Prof at Vet school

You can observe a lot by watching. = quote from Yogi Berra
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas


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