Clear scans!

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Rock_Robster
Posts: 471
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
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
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
11/18- FOLFOX x6
3/19- Liver resection
5/19- 25 x pelvic VMAT radiation; complete metabolic response
07/19- ULAR (robot), temp ileo, 1/27 LN
08/19- Missed a liver spot
08-11/19- FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19- Liver resection #2
02/20- Ileostomy reversed
03/20- PET & MRI = NED!

jep
Posts: 205
Joined: Sun Jun 11, 2017 7:45 pm

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 :)))
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA value: .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
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - ?

beach sunrise
Posts: 22
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
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

User avatar
ANDRETEXAS
Posts: 639
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: 138
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
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos 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 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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 '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

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

User avatar
Jack&KatiesMommy
Posts: 607
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: 10110
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
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Gravelyguy
Posts: 290
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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

annieliz
Posts: 41
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
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

Claudine
Posts: 298
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 radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Lee
Posts: 6027
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 - 10 years and counting!

boxhill
Posts: 490
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
Neulasta 6/28
7/18 CT NED
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: many fails before Celebrex helps
12/23/19 CT stable

JJH
Posts: 249
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

radnyc
Posts: 432
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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