Message of hope from a wiley crc veteran

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Message of hope from a wiley crc veteran

Postby Rob in PA » Wed Jun 07, 2017 9:53 pm

Brearmstrong wrote:Rob, your post came at the right time. I am new to the group and had a bad day today ( reading too many scientific papers on outcomes for my stage and tumor type / 47% survival rate) and just am too neurotic to get that number out of my head despite a million reasons that I have to! Every success story is a lifeline to some in the middle of the fight! Thanks for taking the time to come back and give your wonderful update.


Stay away from Dr. Google! :roll:
best to you
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED
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benben
Posts: 328
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Message of hope from a wiley crc veteran

Postby benben » Wed Jun 07, 2017 10:10 pm

Thanks Rob and to all the old hatters out there giving us newbs of the jungle inklings of Hope!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)
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plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Message of hope from a wiley crc veteran

Postby plastikos » Thu Jun 08, 2017 12:11 pm

Rob, I don't get to check in on this forum too much. Life and work gets in the way. But I'm glad I did today and read this because it's just what I needed. Thanks man.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED
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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Message of hope from a wiley crc veteran

Postby Rob in PA » Thu Jun 08, 2017 3:11 pm

plastikos wrote:Rob, I don't get to check in on this forum too much. Life and work gets in the way. But I'm glad I did today and read this because it's just what I needed. Thanks man.


My pleasure!
Cheers
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED
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Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Message of hope from a wiley crc veteran

Postby Lee » Thu Jun 08, 2017 3:40 pm

Good to see ya back. Congratulations on yourself and your kids. You must be very proud of them both,

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!
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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:
Contact mypinkheaven

Re: Message of hope from a wiley crc veteran

Postby mypinkheaven » Thu Jun 08, 2017 4:26 pm

Thank you, Rob. I'm getting ready to go get my CT scan and the chemo side-effects are making it difficult. But, of course, I'll go and get the scan. Someday I hope, like you, to say NO to any more chemo. Sally 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping
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CRguy
Posts: 10476
Joined: Sun Feb 10, 2008 6:00 pm

Re: Message of hope from a wiley crc veteran

Postby CRguy » Thu Jun 08, 2017 4:38 pm

Nice post Rob. It is true we do live and breathe the Yin and Yang of this whole Journey
and sometimes it IS nice to be reminded of some of the good things we share.

Cheers and Harmony buddy
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
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DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Message of hope from a wiley crc veteran

Postby DarknessEmbraced » Thu Jun 08, 2017 5:58 pm

Wonderful Rob! I'm so glad you're doing so well!*hugs* Thanks for the update! :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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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Message of hope from a wiley crc veteran

Postby Steph20021 » Thu Jun 08, 2017 7:28 pm

Rob, what I love most about your story is that you've had, what, three recurrences during the last 10 years and yet you are still alive, well, and NED to boot! It's a perfect hero story. So glad you still check in.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Message of hope from a wiley crc veteran

Postby Jacques » Thu Jun 08, 2017 8:15 pm

benben wrote:Thanks Rob and to all the old hatters out there giving us newbs of the jungle inklings of Hope!

It's always good to see an old-timer check in again -- especially if he's wearing his lucky Aussie hat!

Image
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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Message of hope from a wiley crc veteran

Postby Rob in PA » Fri Jun 09, 2017 8:55 am

Jacques wrote:
benben wrote:Thanks Rob and to all the old hatters out there giving us newbs of the jungle inklings of Hope!

It's always good to see an old-timer check in again -- especially if he's wearing his lucky Aussie hat!

Image



That hat has seen a lot!!!
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED
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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Message of hope from a wiley crc veteran

Postby Rob in PA » Fri Jun 09, 2017 8:57 am

Steph20021 wrote:Rob, what I love most about your story is that you've had, what, three recurrences during the last 10 years and yet you are still alive, well, and NED to boot! It's a perfect hero story. So glad you still check in.


Four recurrences. :roll: I have a recurrence card that if i get stamped two more times, I get a free steak dinner! :shock:
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED
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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Message of hope from a wiley crc veteran

Postby LPL » Fri Jun 09, 2017 12:23 pm

Four recurrences. :roll: I have a recurrence card that if i get stamped two more times, I get a free steak dinner! :shock:

:lol: :lol: You have great humor!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets
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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Message of hope from a wiley crc veteran

Postby Rob in PA » Fri Jun 09, 2017 10:53 pm

LPL wrote:
Four recurrences. :roll: I have a recurrence card that if i get stamped two more times, I get a free steak dinner! :shock:

:lol: :lol: You have great humor!



Yes,yes I do. :D
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED
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[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Message of hope from a wiley crc veteran

Postby [Ana & Alex] » Fri Jun 09, 2017 11:16 pm

It really makes me happy to see someone who has gone through some much finally being able to enjoy his family and his life...

Thank you for coming back and sharing it with us. It is such a great source of hope and comfort...

Thank you and all the best for you!
And here's to NED forever! (And forget about that free steak dinner xD 4 times should buy you an ilimitted Spa Vacation in Bali :shock: )

All the best,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.
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