Takedown Info

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Surroundedbylove
Posts: 3118
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Tue Nov 29, 2011 10:08 am

I need to add to this again. :-)

My colorectal surgeon commented after my colonoscopy to talk to the docs about continuing the Entocort EC if I can. I feel like it has been a miracle drug for the radiation induced colitis and confirmation comes from the surgeon examining the tissue internally. Huge, huge difference - even in this person who could largely control things through diet. I will be talking to my other docs about the safety of continuing the Entocort EC - perhaps a lower dose would still help and would be OK or perhaps it isn't good to continue long term because it is still a steroid (even if less systemic in its side effects - more targeted just to the colon and liver).

In any event, it is a possible drug in the arsenal to consider and discuss. Most docs that we see are not familiar with it - GI docs typically would be as would liver specialists who deal in autoimmune diseases. So, here is information for all of you that you may not otherwise hear!
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

Surroundedbylove
Posts: 3118
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Sun Jan 29, 2012 1:46 pm

Just a bump up as I'd had some questions about my experience.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Takedown Info

Postby BrownBagger » Mon Jan 30, 2012 9:17 am

The feeling that you've never quite completed your mission--no matter how much time you spend on the toilet--is probably the most annoying part of being a couple of years post-op. I assume that will disappear over time; it is gradually diminishing. But it's the one thing I've noticed.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Surroundedbylove
Posts: 3118
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Mon Apr 09, 2012 12:18 pm

There have been several questions recently about clustering so I thought I'd try to recapture what I've learned from my surgeon and rad onc about the clustering and solutions:


In layperson terms, the clustering happens because your colon is designed to move waste along while a rectum is designed not to do that but instead to act as an expandable "storage tank" until approximately 1/2 cup of waste is collected and then your brain is signaled that it is time to go and release that waste. Your brain can signal back "wait" for a little more waste in normal circumstances with a rectum. Once you've had rectal cancer surgery though, we don't have a complete rectum to function as a holding tank. The colon that is used is still pushing the waste along, hence the clustering with small amounts releases and the constant need to "go." Over time the portion of the colon that needs to adapt to being a neo-rectum will generally slow down and function more like a rectum. In talking with my surgeon, the key to that adaptation - at the right point after surgery - was NOT to use high insoluble fiber foods (whole wheat, etc.) because those foods push the waste along. The key is soluble fiber foods which will expand, and thus stretch out the neo-rectum - whether it is a colonic j-pouch or a straight connect. The soluble fibers work to expand the tissue helps the adaptation as a neo-rectum and eventually in most cases the neo-rectum will then function more like a rectum (holding "tank") and less like the colon that it is.

I'm now able to eat high insoluble fiber foods - but keep in mind that some of that is because of the Entocort EC (mentioned above). Now I actually need the insoluble fiber to push things along. If I ever am able to go off the Entocort EC I'll have to adjust again and see what combo of soluble fiber and insoluble fiber works best for me.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Takedown Info

Postby lauragb » Mon Apr 09, 2012 1:51 pm

Thanks for continuing your mission to keep us updated on your progress and suggestions. I am probably getting my takedown at the end of May so I am reading as much as I can to prepare
for the adjustment.

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

BootyQueen
Posts: 5
Joined: Tue May 08, 2012 2:58 pm

Re: Takedown Info

Postby BootyQueen » Tue May 08, 2012 7:52 pm

OMGosh I am so glad I read this whole post! I have my hope back!!! Thank you so much for all your info. I am 9 weeks out from my take-down and feel like I'm not where I should be. I will try all the suggestions and see where it gets me. I'm so excited!!! Thank you Thank you Thank you!!!
Diagnosed: 8/2011 Age 53
Stage III Rectal Cancer
6 wks radiation, plus 5FU
LAR 11/29/11 J-pouch, temp ileostomy
Takedown 2/28/12
NED 12/11
Path staging pT1,pN0,pMn/a
GOD IS GOOD!!!

BootyQueen
Posts: 5
Joined: Tue May 08, 2012 2:58 pm

Re: Takedown Info

Postby BootyQueen » Sat May 26, 2012 6:52 pm

I just wanted to give an update: IT WORKED!!! I try\uly have my life back! The minute I got off this board I took 1/2 of an Immodium and my life changed. I was able to sleep all night long without having to go to the bathroom. My bottom healed up so much just in that little time. I have continued to take 1 immodium each day around 4-6pm and I can manage all day long. Here is a big THANK YOU!!!
Diagnosed: 8/2011 Age 53
Stage III Rectal Cancer
6 wks radiation, plus 5FU
LAR 11/29/11 J-pouch, temp ileostomy
Takedown 2/28/12
NED 12/11
Path staging pT1,pN0,pMn/a
GOD IS GOOD!!!

Badass
Posts: 1158
Joined: Sun Jan 15, 2012 11:42 am

Re: Takedown Info

Postby Badass » Sat May 26, 2012 8:11 pm

Wow BQ, that's wonderful! I am going to bookmark this for my takedown later this year.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Surroundedbylove
Posts: 3118
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Tue Nov 05, 2013 2:20 pm

A bump up on this thread of mine at my five year anniversary. All is reasonably well with the takedown. :-)
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3

Badass
Posts: 1158
Joined: Sun Jan 15, 2012 11:42 am

Re: Takedown Info

Postby Badass » Sun Mar 16, 2014 1:00 am

Hi SBL,

Are you still taking Entocort?
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)


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