Clear scans!

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Rock_Robster
Posts: 534
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Clear scans!

Postby Rock_Robster » Mon Mar 16, 2020 7:59 pm

Hi all,

Today I got my first clear scans and NED since I started on my stage IV journey just under 17 months ago. Nothing on the PET; liver MRI was good and CEA of 2.2. It’s been a long road to here but I’m grateful to all of you for your support!

Best of luck to everyone,
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Clear scans!

Postby jep » Mon Mar 16, 2020 8:03 pm

That’s so great Rob!! Congrats and thank you for lifting my spirits with this news! Awesome :)))
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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beach sunrise
Posts: 369
Joined: Thu Mar 05, 2020 7:14 pm

Re: Clear scans!

Postby beach sunrise » Tue Mar 17, 2020 1:31 am

Congrats to you!!! Celebrate
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
ANDRETEXAS
Posts: 654
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Clear scans!

Postby ANDRETEXAS » Tue Mar 17, 2020 1:40 am

That's fantastic news ! Congratulations and hope you keep up your good work helping others on their journeys. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

Siti
Posts: 192
Joined: Thu Aug 01, 2019 10:58 am

Re: Clear scans!

Postby Siti » Tue Mar 17, 2020 3:29 am

That’s awesome!! Very happy to hear the great news!
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Clear scans!

Postby AussieAssCancer » Tue Mar 17, 2020 5:31 am

Awesome news mate! Here’s hoping for many more similar scans!!
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Clear scans!

Postby Jack&KatiesMommy » Tue Mar 17, 2020 11:51 am

Such wonderful news!!!!!! So happy for you!!!!

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

User avatar
CRguy
Posts: 10269
Joined: Sun Feb 10, 2008 6:00 pm

Re: Clear scans!

Postby CRguy » Tue Mar 17, 2020 2:30 pm

MEGA cheers buddy

Best wishes
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

Gravelyguy
Posts: 350
Joined: Thu Jul 05, 2018 6:03 pm

Re: Clear scans!

Postby Gravelyguy » Tue Mar 17, 2020 3:32 pm

That is great news Rob!


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!

annieliz
Posts: 52
Joined: Fri Jul 26, 2019 5:13 pm

Re: Clear scans!

Postby annieliz » Tue Mar 17, 2020 4:17 pm

That is great news. Congratulations!

Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7, 11/27 - 1.9
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy - Reversal 7/15 - minor LARS
10/19/20 - clear colonoscopy

Claudine
Posts: 464
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Clear scans!

Postby Claudine » Wed Mar 18, 2020 11:04 am

Woo-ooo! Something positive to start the day :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/20: nothing to report

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: Clear scans!

Postby Lee » Wed Mar 18, 2020 4:21 pm

Congratulation!!! Keep it up,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

boxhill
Posts: 675
Joined: Fri Apr 06, 2018 11:40 am

Re: Clear scans!

Postby boxhill » Wed Mar 18, 2020 5:42 pm

Yay, good news! So glad to hear it.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

JJH
Posts: 300
Joined: Mon Apr 24, 2017 7:26 am

Re: Clear scans!

Postby JJH » Thu Mar 19, 2020 12:03 am

Rob -

Great news! I'm so happy for you. :D

I was wondering if your medical team is planning to create a Survivorship Care Plan for you. In the U.S., the NCCN encourages medical teams to develop a written "Survivorship Care Plan" for patients as they transition from active treatment to the five-year followup period. Does your medical team provide that kind of support?

    In 2019, Rock_Robster wrote:...
    My alternative med team is a bit more consolidated - I have one naturopath/herbalist and one acupuncturist/TCM. I also have a radiation onc as my primary was rectal.

    My main comment would be that I’ve also kept quite close contact with my two surgeons - liver & colorectal. I find they have a lot of useful guidance on my broader treatment and follow up, and often a slightly different perspective to my medical oncologist. I would recommend anyone at stage IV establish a direct relationship with a high-volume surgical specialist, even if they aren’t yet operable. These are the people you ultimately *want* to be meeting, so it’s good to get their advice early on.

    Cheers
    Rob
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: Clear scans!

Postby radnyc » Thu Mar 19, 2020 5:50 am

Fantastic!! Congratulations!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15


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