Reversal Thread

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reversal Thread

Postby CRguy » Wed Oct 04, 2017 8:18 pm

Agreed !

This forum is a resource for so many folks that every bit of info we share here
WILL benefit someone down the line

Cheers and best wishes
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

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Reversal Thread

Postby Shana » Thu Oct 05, 2017 9:55 pm

Hi Basil,
I agree with Ben and CRguy, I have found valuable information from older threads when searching the forum. I wish you continued success with your reversal and hope to reference your experience for myself in the future!

Take care,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

Re: Reversal Thread

Postby Basil » Thu Oct 05, 2017 10:25 pm

Still little movement on the BM front. From my research here and elsewhere on the web, I expected to be going a dozen times a day (although I recognize there is a bit of selection bias in that effort). It's been quite the opposite. I've been eating very little for no other reason than I'm not hungry and losing 20 pounds would do me good. I've introduced fiber supplements and some prune juice and had a small movement today. But I'm not processing a lot of food and my gut has been mostly quiet.

I'm not sure if this is great or bad but I'll assume the best. I'm out and about - school, errands and a Rockets game tonight, with little fear about a bowel mishap. It just hasn't happened.

I don't think there is a blockage. I've been passing gas and had the occasional BM. There's just very little of it. My GI is probably still recovering from surgery.

So far, so good.
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)

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Reversal Thread

Postby AbbyDoo » Fri Oct 06, 2017 12:50 am

Basil sounds like you doing good...
I hope you keep on rocking it and this was just a hick up in life for you.
They say ya got to hit rock bottom for things to get better..
The question is what happens when they take most or all the bottom out?
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Reversal Thread

Postby rockhound » Fri Oct 06, 2017 11:50 am

Basil wrote:Still little movement on the BM front. From my research here and elsewhere on the web, I expected to be going a dozen times a day (although I recognize there is a bit of selection bias in that effort). It's been quite the opposite. I've been eating very little for no other reason than I'm not hungry and losing 20 pounds would do me good. I've introduced fiber supplements and some prune juice and had a small movement today. But I'm not processing a lot of food and my gut has been mostly quiet.

I'm not sure if this is great or bad but I'll assume the best. I'm out and about - school, errands and a Rockets game tonight, with little fear about a bowel mishap. It just hasn't happened.

I don't think there is a blockage. I've been passing gas and had the occasional BM. There's just very little of it. My GI is probably still recovering from surgery.

So far, so good.


Awesome to hear that you are doing well!!

I was going so much (10-20 x day) until I started taking metamucil two days ago per Dr. instructions (after getting tested for C.diff., negative!). Wow, what a difference that has made!!! Now over the last 2 days, it has just been 3-5 times a day where I have some clustering, and then things settle down. That fear of going out is slowly disappearing!
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

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

Re: Reversal Thread

Postby Basil » Fri Oct 06, 2017 9:45 pm

Weirdness continues. I've been starting to get worried about the lack of BMs 10 days out from surgery. Had much fewer than before surgery.

NOTE: my bowel function was pretty eradic before diagnosis and then beautiful once FOLFOX killed the tumor. Now learning a new normal.

Had three smallish ones today. So things are moving in the regular course, I think. But overall it's been good. I haven't had any signs that going out in public would be dangerous. Quite good on control.
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)

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Reversal Thread

Postby Shana » Fri Oct 06, 2017 11:29 pm

Basil wrote:Weirdness continues. I've been starting to get worried about the lack of BMs 10 days out from surgery. Had much fewer than before surgery.

NOTE: my bowel function was pretty eradic before diagnosis and then beautiful once FOLFOX killed the tumor. Now learning a new normal.

Had three smallish ones today. So things are moving in the regular course, I think. But overall it's been good. I haven't had any signs that going out in public would be dangerous. Quite good on control.



Sounds like your new normal is settling in a good way. Control is an awesome thing!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

Re: Reversal Thread

Postby Basil » Sat Oct 07, 2017 10:03 pm

Still very little going on bowel wise.
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)

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

Re: Reversal Thread

Postby Basil » Fri Oct 13, 2017 6:42 pm

Well, I'm closing in on three weeks post reversal and things have been going very well. My bowel function is not as "normal" as it was pre-LAR, but it's not all that different either. I was suffering from mild constipation after surgery, which is certainly common, so I introduced fiber supplements and prune juice into my diet.

I didn't notice much from the supplements but my GI responds to prune juice. I still have about zero desire to have a movement during the day. I still pass gas but no BMs.

In the evenings I'll drink 8-12 ounces of prune juice which produces a movement in 2-3 hours. If I take closer to 12 ounces it empties most everything out, though not nearly like a colonoscopy prep or anything. Then I'm good the whole next day.

I'm going to explore skipping the prune juice at some point but I'm back at work and still worried about having a bad episode, although nothing like that has happened. Overall, im averaging one movement a day, although it can take 10 minutes to cycle through everything. And 90% of my rectum is gone. Go figure.

So, overall, everything is great. There's been no going 12 times a day, no accidents and no serious urgency (except a couple of times with the prune juice, but that was planned and welcomed).

I'll update this thread if I hit a rough patch or things change significantly but the lack of updates means I'm not having any appreciable side effects that are interfering with living a normal life.
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)

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

Re: Reversal Thread

Postby Basil » Fri Oct 13, 2017 6:48 pm

I have mentioned this before but should also reiterate that I was on a trial that skipped all radiation. Surgery and chemo only. From the beginning my docs mentioned this should help with post-reversal bowel function but nobody really knew to what extent. I still don't know either but it's a variable that may well be a significant factor in my (so far) good response.
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)

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Thread

Postby susie0915 » Fri Oct 13, 2017 7:51 pm

Glad you're doing well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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

Re: Reversal Thread

Postby justin case » Tue Oct 17, 2017 4:11 pm

Good job
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

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

Re: Reversal Thread

Postby Basil » Sun Oct 22, 2017 6:58 pm

As of tomorrow I'm one month out from reversal. As a reminder, I had 90% of my rectum removed but did not have radiation.

I had been using prune juice in the evenings as a system flush, I.e. I empty out at night and then have no BMs or issues the next day. I have have been doing well but worried that the wheels still might fall off at work with clustering, diarrhea, etc. It hasn't happened and I decided to lay off the prune juice Friday to see how things played out over the weekend. It's been a bunch of nothing. Had a small BM early Saturday morning but nothing since. Passing gas ok and no discomfort but no BMs either. This is unusual because before LAR I was an everyday type of guy.

Can't complain at all but drank a bunch of prune juice a while back to hopefully flush things out before work tomorrow.

So far it's thankfully been a very uneventful reversal for someone missing most of his ass.
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)

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

Re: Reversal Thread

Postby Lee » Sun Oct 22, 2017 7:26 pm

Good luck, hope there are no problems.

You may already know this, butt will pass along just in case. Some people keep a change of clothes either in their car of office , or both. Just in case :shock:

Good luck, sounds like the prune juice might be the thing to drink.

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!

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

Re: Reversal Thread

Postby Basil » Sun Oct 22, 2017 8:03 pm

Lee wrote:Good luck, hope there are no problems.

You may already know this, butt will pass along just in case. Some people keep a change of clothes either in their car of office , or both. Just in case :shock:

Good luck, sounds like the prune juice might be the thing to drink.

Lee


If I'm ever in a situation is which I need a wardrobe change I'll be booking it home for a shower as well. I've found I get a great deal of latitude when facing post-reversal side effects. There's nothing so important at work that I couldn't get a break for a leaky butt.
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)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 31 guests