Reversals Any positives?

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Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Reversals Any positives?

Postby Caat55 » Wed Apr 17, 2019 9:11 pm

So as I head into my reversal, I am hoping for good news, success stories and advice. Have at it friends, what is your story, what did you learn, wish you'd been aware of before hand?
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Ehut
Posts: 209
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Reversals Any positives?

Postby Ehut » Wed Apr 17, 2019 9:43 pm

The first week was pretty rough for me. It felt like I was passing razor blades until I discovered Metamucil (psyllium husk fiber) which kind of acted like training wheels for my system. Total game changer for me. It took several months for things to fully stabilize but things have been good ever since (6.5 years). Calmoseptine was also my friend for the first few months. The only downside is that I go about twice as often as before. The benefit is that constipation is less frequent. In some ways my system works better than before the surgery.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversals Any positives?

Postby Caat55 » Wed Apr 17, 2019 10:59 pm

Thank you for sharing. Calmoseptine was a friend during radiation. Will pull it out again. My system has always been slow, hope this will be a balance.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

Re: Reversals Any positives?

Postby Jolene » Thu Apr 18, 2019 8:21 am

I am also very curious about positive stories for reversals.

While I am on WW, there is still a high chance of recurrence in which I will have to be operated on immediately and undergo reversal at some point.

How long did it took for your LARS to stabilize ?

How did you get round your job situation and social life ? Did you have to take time off work ?
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

Re: Reversals Any positives?

Postby Jolene » Thu Apr 18, 2019 8:23 am

Ehut wrote:The first week was pretty rough for me. It felt like I was passing razor blades until I discovered Metamucil (psyllium husk fiber) which kind of acted like training wheels for my system. Total game changer for me. It took several months for things to fully stabilize but things have been good ever since (6.5 years). Calmoseptine was also my friend for the first few months. The only downside is that I go about twice as often as before. The benefit is that constipation is less frequent. In some ways my system works better than before the surgery.


Hi Ehut - thanks for sharing ! How do you mean your system works better than before surgery ? Do you mean life has returned to normal for you without any LARS ? How about the toilet runs and all ?
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

Ehut
Posts: 209
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Reversals Any positives?

Postby Ehut » Thu Apr 18, 2019 8:57 am

Jolene wrote:Hi Ehut - thanks for sharing ! How do you mean your system works better than before surgery ? Do you mean life has returned to normal for you without any LARS ? How about the toilet runs and all ?


By "better", I mean that I am more regular and my bathroom breaks are usually very fast. The challenging times were mostly in the first month and gradually got better. I had the occasional "clustering" but that is long gone.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Reversals Any positives?

Postby Eleda » Thu Apr 18, 2019 10:12 am

I have to concur with the physillum husk
I began only 2tbsp in the morning with a banana, but I'm a month out and I know some Surgeon won't allow this but I didn't Evan ask, my ass is on fire so I don't care what he thinks at this point
Past 2 days fade been great, still going a fair bit but not burning like before
Had it n my porridge this morning ( first porrige) prob too early still,
I'm having cramps now 4 hours later but still feel ok
I think I've turned a corner so grasp into that Susan ( its only been a month
As for the cream
Yes that has been recommended before to me but not available her and has quite a low zinc
But I've found one that was higher called DISTIAL, MUST SOURCE IT( haven't used it tho, high in zinc)

https://www.desitin.com/diaper-rash-pro ... 4300000657
AQUAFORE DURING THR DAY, ZINC AT NIGHT
good luck su and keep us posted
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Reversals Any positives?

Postby mandosquiddy » Thu Apr 18, 2019 12:17 pm

I had my reversal on January 3rd of this year so I'm only a few months out. It has not all been positive but the negatives I have had have improved (or I've learned from and not repeated some mistakes). The first few weeks were rough and I had a lot of bathroom time and sore butt. A good cream is 100% necessary and I still use it to this day but luckily not every day anymore. In those first weeks I did have some accidents on the way to the rest room. I haven't had any issues with that since. I have at times taken metamucil but have actually had more success taking a few immodium pills everyday. It reduces the clustering and keeps things a bit more solid. I did have one incident a week ago where I overate pizza and the next night ate a meal with several veggies. The combo resulted in a blockage and a couple nights in the hospital for monitoring. Luckily, the blockage cleared on it's own. Since then I've stuck to a low residue diet and the immodium pills and have been operating like clockwork. I tend to go 3-6 times a day and I can hold things for a bit if I need to.

I returned to work a few weeks after surgery. For the most part work has been fine with the exception of a day or two where I spent way more time in the bathroom than ideal. I also survived 5 days in Mexico in March just by being very careful about what I consumed. So far in my situation I feel like the reversal was the right decision. I don't have to deal with the ostomy (supplies, leaks, etc). I am hoping things will continue to improve in the coming months.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: Reversals Any positives?

Postby juliej » Thu Apr 18, 2019 5:43 pm

It took me a full 3 months to get back to normal (well, my "new normal"). As others have noted, the first few months are the hardest. Your plumbing has been "offline" for awhile so it takes some time for it to get used to processing food. I was beyond thrilled when I produced my first fully formed turd after I left the hospital! :D :D :D

Taking probiotics helps a lot. You need to reestablish your good gut bacteria. I ate yogurt, drank kefir, and took probiotic capsules (the kind that take refrigeration).

Also, take it easy introducing new foods. Eat low residue foods at first and then gradually introduce ones with fiber. If something doesn't agree with you, stop eating it for a few weeks and then try again. Often it's just a matter of time. You'll quickly learn which foods trigger diarrhea (usually chocolate, nuts, salads, spicy foods, raw veggies, etc, but it can vary wildly from person to person). Have plenty of Imodium handy and don't be afaid to take it for clustering and/or diarrhea. If you feel constipated, lay on the floor, pull your knees up to your chest and rock back and forth. This realigns your intestines and can smooth out a kink or a minor blockage.

I don't have any serious issues now. I know not to have chocolate on any empty stomach (unless I want a good cleanout! :D ), but I can eat fruit, salads, nuts, even popcorn with no problem.

I looked at my reversal as one more step in getting my body back. Best of luck to you!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

cgb13
Posts: 8
Joined: Tue Aug 07, 2018 4:08 pm

Re: Reversals Any positives?

Postby cgb13 » Fri Apr 19, 2019 11:17 am

JulieJ, you somewhat answered this, but are these going to be lifetime issues, or do things generally get close to normal over time? Cancer's taken so much already, the thought of also losing some of my favorite foods is a bit depressing.
35yo male - father of 1 (infant)
Dx Stage IIIc - T3N2M0 8/15/18
8 bi weekly FOLFOX treatments done 12/11/18
1/23/19 - 3/1/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversals Any positives?

Postby Caat55 » Fri Apr 19, 2019 11:37 am

Thank you JulieJ for your positive statements and information. I love yogurt, make it at home. I am going to pick up some imodium for just in case days. I enjoyed lots of foods going into reversal that I was afraid I would not be able to eat.good to know I will have some kind of normal eating again.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Reversals Any positives?

Postby Eleda » Sat Apr 20, 2019 10:55 am

Hi Susan
How is the plumbing comming along????

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversals Any positives?

Postby Caat55 » Sat Apr 20, 2019 12:47 pm

I have started with small, bloody stools. One yesterday three today. Literally walked it out. 6700 steps yesterday.
I get to leave today, waiting on discharge orders. Just gauze over wound. Got a shower.
How are you doing?
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Reversals Any positives?

Postby Eleda » Sat Apr 20, 2019 1:10 pm

That's brilliant,,,
No wound packing??
Ur doing amazing already Susan
Long may it last...
I'm doing good today :D
So hoping tomorrow will b same,
Still no complete control, but getting there,,,
Going out tonight to a party (100 yards from my house incase I've to come home )
So fingers crossed it will go well
Enjoy Ur own bed tonight and a rest
Talk soon
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversals Any positives?

Postby Caat55 » Sat Apr 20, 2019 2:03 pm

That's great news, a party to celebrate
We are on way home. About 2 and 1/2 drive. Hope I make it.
Wound is just covered with gauze which I take off to shower..
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19


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