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

Message of hope from a wiley crc veteran

Postby Rob in PA » Wed Jun 07, 2017 2:16 pm

Hello to all of you newly diagnosed crc patients, and yes, it sux that you have to be here....BUTT, every once in a while I have to dissapear from this site to clear my head, enjoy my family, and try to live my new "normal" life....then come back and catch up with friends fighting the fight on here.

The "cliffs note's" version of my story is that I was 39 when diagnosed (you can read my sig below to save me some typing :)), married, with a 9 year old boy and a 6 year old girl. Around the 3rd year of my journey I received the "you may want to get your affairs in order" speech from my local oncologist AND from my big cancer center oncologist. I was obviously devastated. My biggest fear was not knowing what my young children would look like as young adults. I hated the thought of missing big life occassions such as teaching them to drive, seeing them go to Proms and dances, dating, graduating, etc...etc....

Well, here i am approaching 10 years since diagnosis this November (and yes, its been rough, and is still rough some days with all the long term side effects) and I've had the absolute honor to witness ALL of the above (except my daughter is still in high school) and then some!!!!!

My son, who was just tall enough to barely get on roller coaster rides when he was 9, is now a 19 y.o. 6'4" former standout baseball and basketball player in high school, who just finished his Freshman year at Slippery Rock University. He works full time during his summer break, is dating, and helping me as an assistant coach in a summer baseball league. Proud Papa for sure!

My daughter, who was a mere 6 years old at diagnosis, is now an incredibly beautiful 16 y.o. 5'10" Volleyball player, cheerleader, and National Honor Society Junior in High School. She helps me do volunteer work at a local childrens museum and works with me on local rails to trails projects that I enjoy developing and maintaining. I'm in the process of teaching her how to drive (which is a WHOLE different kind of stress than when I was in treatment), 8)

Needless to say, I truly feel blessed, and am thankful for every day that I have with them and my lovely wife of 23 years!

THis message isn't meant to sound boastful, but rather, it is meant to instill some hope in some of the newer members of this club who may find themselves in a dark and scary place right now. Yes, we have our share of bleak outcomes, but we also have some feel good stories too. Many of these stories you probably haven't heard about because we tend to take a break now and then from this site to "recharge".

Best to all in the big FIGHT...
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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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Message of hope from a wiley crc veteran

Postby LPL » Wed Jun 07, 2017 2:29 pm

Rob,
Thank You So Much for posting this!
It gives much needed hope !!
Totally understand that you take long brakes from this forum butt so grateful that you check in ones in a while :)
Kind Regards /L
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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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Message of hope from a wiley crc veteran

Postby Maia » Wed Jun 07, 2017 2:43 pm

Rob!!! So happy to 'see' you!! And you sound amazing!!

Great message, greatly needed in this forum, and everywhere, actually. Much love to you.

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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 3:17 pm

Maia wrote:Rob!!! So happy to 'see' you!! And you sound amazing!!

Great message, greatly needed in this forum, and everywhere, actually. Much love to you.



Thanks Maia!!! You've always been one of my most trusted sources of information :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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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Message of hope from a wiley crc veteran

Postby Maia » Wed Jun 07, 2017 3:23 pm

Aww... and you one of my more admired trails trailblazers, and admired and dear forum fellow. :D

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Message of hope from a wiley crc veteran

Postby Ron50 » Wed Jun 07, 2017 4:21 pm

I'm glad your life is going as well as can be expected and you have been around to help your wife to raise your children( they sound like great kids). I can remember back to a hospital visit from my 13 year old son and him asking if I was going to die. He is now 33 and he and his wife shifted to the Phillipines and built a school for the local children. They now have two little girls of their own . Life goes on , cheers Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Message of hope from a wiley crc veteran

Postby Brearmstrong » Wed Jun 07, 2017 6:09 pm

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.
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Message of hope from a wiley crc veteran

Postby Kick'nAssCancer'sAss » Wed Jun 07, 2017 6:37 pm

Welcome back Rob and ...............Go Penguins.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Message of hope from a wiley crc veteran

Postby JudeD59 » Wed Jun 07, 2017 7:07 pm

So good to hear from you, Rob, and know you got to celebrate so many milestones with your kids (although teaching my four daughters to drive is something I've tried very hard to forget).

I would also like to say Go Penguins, but as a longtime Flyers fan, it would just be too painful. So I'll just say boo hiss Predators.

From Judy who is also in PA.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Message of hope from a wiley crc veteran

Postby chrissyrice » Wed Jun 07, 2017 7:34 pm

Good to hear HOPE from a CRC Veteran.

So glad your children are doing so well along with you :D :D

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Message of hope from a wiley crc veteran

Postby mariane » Wed Jun 07, 2017 8:01 pm

Thank you very much Rob for your message of hope.
Congrats! It is soo good to see kids grow.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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

Re: Message of hope from a wiley crc veteran

Postby horizon » Wed Jun 07, 2017 8:36 pm

Awesome reading this.
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?

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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 9:44 pm

Ron50 wrote:I'm glad your life is going as well as can be expected and you have been around to help your wife to raise your children( they sound like great kids). I can remember back to a hospital visit from my 13 year old son and him asking if I was going to die. He is now 33 and he and his wife shifted to the Phillipines and built a school for the local children. They now have two little girls of their own . Life goes on , cheers Ron.

Awesome story 8)
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

User avatar
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 9:48 pm

muskokamike wrote:Welcome back Rob and ...............Go Penguins.

Go Pens!!!!!
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

User avatar
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 9:49 pm

JudeD59 wrote:So good to hear from you, Rob, and know you got to celebrate so many milestones with your kids (although teaching my four daughters to drive is something I've tried very hard to forget).

I would also like to say Go Penguins, but as a longtime Flyers fan, it would just be too painful. So I'll just say boo hiss Predators.

From Judy who is also in PA.

Well....I can understand your dilemma :roll:
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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