I heart FOLFOX

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Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

I heart FOLFOX

Postby Basil » Fri Jul 14, 2017 4:49 pm

Yes, I know this may be a fleeting romance and I may be cursing its name in the future but for now we're besties.

I had six rounds FOLFOX pre-op instead of chemorad. This week was time to see how well it worked. Had chest cat scan, pelvic MRI and flex sig. lungs and liver remain clear. At the primary site, surgeon's note state I had an "excellent response to treatment with only minimal residual disease present." The 4cm semi-circumference tumor was mostly gone. Doc had to point out the remainder on the flex sig because all I saw was healthy tissue. Doc says there's a very good chance I will not need a temp ostomy and might not even need further chemo. I don't understand it all but the guy telling me all this is the chief of colorectal surgery at MDAnderson so I'm deferring to his expertise.

This was my first scan since my diagnosis when I learned I had cancer and spent two days waiting to see if spot on my lung was a met or a harmless something or another. It was the latter but that level of anxiety returned and this round of scans had my stomach in knots for the last week. I know there's a lot more mountain to climb and years of anxious waiting before scans but I'll be taking and celebrating my victories where ever I find them. So for now I offer a teary-eyed pat on the back to my good friend FOLFOX. Cheers.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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

Re: I heart FOLFOX

Postby jep » Fri Jul 14, 2017 5:09 pm

Excellent! So happy to hear this news....my DH starts Folfox at the end of this month....glad to hear you're having so much success!
jep
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: I heart FOLFOX

Postby Lee » Fri Jul 14, 2017 8:29 pm

AWESOME news. So very happy for you. Hopefully this could replace radiation.

To your continued success,

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!

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: I heart FOLFOX

Postby Tdubz » Sat Jul 15, 2017 12:05 pm

Great to hear basil! Hope your journey continues to be as positive.

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: I heart FOLFOX

Postby mozart13 » Sat Jul 15, 2017 12:43 pm

Thats great news, it looks like folfox is eqivalent to xeloda/radiation treatment.
What is the plan after the surgery?
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: I heart FOLFOX

Postby Maia » Sat Jul 15, 2017 9:26 pm

Basil, that is so good to hear!!
I think this is exactly what chemotherapy is for, to achieve this kind of response. So happy to hear the lung thing is just that, one of those lung things that we have here and there, popping up in images : )
Here, to a great resection, soon!

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: I heart FOLFOX

Postby LeonW » Sun Jul 16, 2017 4:39 am

sorry, double post
Last edited by LeonW on Sun Jul 16, 2017 6:36 am, edited 1 time in total.
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: I heart FOLFOX

Postby LeonW » Sun Jul 16, 2017 4:44 am

Basil wrote: I'll be taking and celebrating my victories where ever I find them. So for now I offer a teary-eyed pat on the back to my good friend FOLFOX. Cheers..

Wow. Great. Congrats for recognizing that chemo is your ally.
That you may find plenty occasions for celebrating your friend Folfox's assistance.

Best wishes / keep up the spirit.
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: I heart FOLFOX

Postby Basil » Sun Jul 16, 2017 8:39 am

mozart13 wrote:Thats great news, it looks like folfox is eqivalent to xeloda/radiation treatment.
What is the plan after the surgery?


Plan after surgery was originally six-eight more rounds adjuvant FOLFOX. Surgeon said I might not need that depending on what they find. I don't understand the logic of that, exactly, but the guy knows what he's talking about. No more chemo would be wonderful, obviously, but I'll take it either way. Whatever gives me th best chance of killing this thing off 100%
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: I heart FOLFOX

Postby benben » Sun Jul 16, 2017 9:44 am

Good to hear you are having such good results with the Folfox.
I know you started disliking the chemo around round 3 from other posts.
Glad the struggle is yielding benefits.

As much as I dislike the first week of the chemo treatments, I'd probably opt for post-op chemo.
I'd be too concerned with any spillage of any cancer cells during the removal of the tumor.

May your resection go well and to a speedy recovery.
Personally I find the chemo treatment regime harder than surgery, but I know everyone is different.
----------------------
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!)

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: I heart FOLFOX

Postby Basil » Sun Jul 16, 2017 12:53 pm

Surgery is minimally invasive robotic and if all goes according to plan hospital stay will only be three days.

As awkward as it sounds, I am "glad" to hear you found chemo worse than the surgery because that's what I'm most concerned about. Never had surgery before but my wife has had two resections and they sucked.

I recall thinking sometime around cycle four that I couldn't handle a full 12 rounds but I know I can. Just have to suffer through it. So, yeah, if there's any question or grey area, I'll be opting for additional FOLFOX. After all, we're good buddies now.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: I heart FOLFOX

Postby justin case » Sun Jul 16, 2017 2:37 pm

Basil wrote:Surgery is minimally invasive robotic and if all goes according to plan hospital stay will only be three days.

As awkward as it sounds, I am "glad" to hear you found chemo worse than the surgery because that's what I'm most concerned about. Never had surgery before but my wife has had two resections and they sucked.

I recall thinking sometime around cycle four that I couldn't handle a full 12 rounds but I know I can. Just have to suffer through it. So, yeah, if there's any question or grey area, I'll be opting for additional FOLFOX. After all, we're good buddies now.

I accidentally sent you an E-mail, instead of a private message. Folfox saved my life, I'm sure. I had 3 rounds, before chemorad, and because I had a tumor in the sigmoid, as well as the rectum, (low rectal tumor) I had folfox with chemorad. Surgery scared the heck out of me , as well as radiation. I saw an individual try to get ridof the problem with chemo only, as he didn't want radiation. He was getting around pretty good when I met him. 5 weeks later after intense chemo, I saw him being wheeled into the radiation department, as he could no longer walk by himself. Surgery, is what it is, they don't know until the pull your colon out on the table, and inspect it for tumors, whether you will need a illeostomy or not .Without surgery, you may progress, and run out of options. I had 9 rounds of Folfox, mind you I'm one of the few who it didn't bother much. The scheduled 28 rounds of Radiation, and 12 more rounds of 5FU only. My last treatment was about 5 years ago. I'm doing fine.
Regards,
Michael
Last edited by justin case on Tue Jul 18, 2017 4:18 pm, edited 1 time in total.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: I ♡ FOLFOX

Postby Jacques » Mon Jul 17, 2017 2:34 pm

.
"I FOLFOX"

Basil - Congratulations on your success so far with the Prospect Trial... and remember ... in this world nothing is impossible. If at first you don't succeed, then try again. You may he surprised to find that there is a way for you to reach your goal no matter how difficult this may seem at first.

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

Re: I heart FOLFOX

Postby horizon » Mon Jul 17, 2017 2:39 pm

I know the feeling! I hated it while I was in the middle of it but at the same time I knew it was what I needed to do to maximize my chances of success. Hope you keep getting the results you want.
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?

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

Re: I heart FOLFOX

Postby Brearmstrong » Sun Jul 23, 2017 7:54 pm

Hi Basil, can I ask how they ruled out the spot on your lung as harmless? I ask because I am 1/2 through my 12 rounds of folfox and the CT scan I just had shows a 4mm lung nodule in my upper quadrant. I have never had a full chest scan until now so not sure how long it has been there. My oncologist said he is not concerned but we will watch to see if it grows over the next two years. I, of course, am worried about it so wondering how they can tell it's nothing without a biopsy. I read it can be more common to have benign nodules if you are over 50, smoker, drink coffee, had past lung infections or fungal infections. I have no history of any of these things which has me more worried that it is a met. Others who know, please chime in!! Thanks to all and happy to see you doing well.
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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