Clear scan & deporting (stage IV)

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Rock_Robster
Posts: 1021
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Clear scan & deporting (stage IV)

Postby Rock_Robster » Tue Mar 09, 2021 2:40 am

Well my 15-month PET was clear, and the onc wants to deport me next week. I’m a bit surprised but not complaining! He checked if I was superstitious about it; I’m not, so away it goes.

We also had a negotiation about scan frequency - he was happy to go to 6 months but I’m still a little anxious so we settled on 4 months for the next one.

Thanks again to everyone here for all the support.
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Clear scan & deporting (stage IV)

Postby Siti » Tue Mar 09, 2021 7:50 am

Such amazing news!! Really happy for you Rob! It’s also wonderful that the pandemic is controlled so well down under! My Aussie friends have been enjoying their freedom and I hope you will too.

My husband’s oncologist has proposed a 3 months scan instead of 2 since my husband has been NED for more than a year now but I think we’re going to stick to the schedule cause unlike you, his is lymph node spread and have not been resected. What do you think in your opinion of what you’ve learned?
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: Clear scan & deporting (stage IV)

Postby DCook54 » Tue Mar 09, 2021 8:33 am

Congratulations! If I make it to December without new mets, I get my port out. My scans are every 4 months. Praying that you remain well!!
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Clear scan & deporting (stage IV)

Postby AmyG » Tue Mar 09, 2021 9:38 am

OMG, YOU TOO?????

That's great news, I'm excited for you!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

User avatar
horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: Clear scan & deporting (stage IV)

Postby horizon » Tue Mar 09, 2021 6:45 pm

Another port gone. Congrats!
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?

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: Clear scan & deporting (stage IV)

Postby CRguy » Tue Mar 09, 2021 7:47 pm

Well done Rob

Keepin' it real
kickin' BUTT and taking names !

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

Rock_Robster
Posts: 1021
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Clear scan & deporting (stage IV)

Postby Rock_Robster » Wed Mar 10, 2021 2:56 am

AmyG wrote:OMG, YOU TOO?????

That's great news, I'm excited for you!

Thanks Amy! Actually it was your post that reminded me I should post something :) . Congrats!
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Clear scan & deporting (stage IV)

Postby Gravelyguy » Wed Mar 10, 2021 2:40 pm

Welcome to the stage 4 extended surveillance club Rob!

Congrats!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Clear scan & deporting (stage IV)

Postby beach sunrise » Wed Mar 10, 2021 10:53 pm

It makes me very very happy to read this post!!!
Congrats to you.
You were one of the first to help me when I joined the forum. I thank you for that.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Punky44
Posts: 497
Joined: Mon Oct 01, 2018 4:29 pm

Re: Clear scan & deporting (stage IV)

Postby Punky44 » Thu Mar 11, 2021 9:43 pm

Exciting news Rob! Congrats!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Clear scan & deporting (stage IV)

Postby DarknessEmbraced » Sat Mar 13, 2021 11:55 am

Wonderful news! :)
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! :)

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Re: Clear scan & deporting (stage IV)

Postby Markdale » Sun Mar 28, 2021 9:38 pm

Hey rob, that’s great news. How have you been feeling post treatment? Are you back to normal or feeling better than ever?
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
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Clear scan & deporting (stage IV)

Postby stu » Mon Mar 29, 2021 4:15 am

Great news and such a boost to others just starting out !
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 .

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Clear scan & deporting (stage IV)

Postby Rikimaroo » Mon Mar 29, 2021 5:28 pm

Rob,

Great news my man!! How you doing with the bathroom since ileo reversal?

Best,
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Clear scan & deporting (stage IV)

Postby jsbsf » Tue Mar 30, 2021 9:19 pm

That is great news! DH still has his and says it doesn’t bother him. It seems like he is about 9 months behind you. You’ve given us a lot of encouragement this whole time.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED


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