Did anyone ever decide to go back to ileostomy after reversal

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Rikimaroo
Posts: 216
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Fri Jun 21, 2019 5:48 am

Thanks my brother swirdfish appreciate that feedback. I am here in Tampa Florida today to get a second opinion at Moffitt Cancer center just to cover all bases.

Folfiri is tougher then folfox I feel. My docs at Cleveland clinic here in Fl wanted to do more chemo to shrink the pelvic recurrence even more or possibly eradicate it but my thing is if that last four rounds shrunk it by half I prefer to get that sucker cut out. We also spoke to my surgeon at CC and he said surgery is an option but wants me to have surgery with intraoperative radiation which they do not have at CC Weston only Ohio has it. So they suggested Moffitt which has it.

So here I am went to bed at around 11:30 am and clustered the entire night didn’t get a lick of sleep. I blame it on eating La Brasa the beans you add to your rice cause I have been gassy as hell farting all night which also burns my ass!! I even popped three Imodium total. I think it’s finally stopped but still busting some farts which honestly I hate because not as fun like before alll this. I would recommend avoiding beans folks that have had reversal

Anyways that’s my update of my journey so far. Hoping they say stop chemo let’s plan on surgery chemo really sucks it’s absolutely necessary evil for sure.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

NHMike
Posts: 1997
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Fri Jun 21, 2019 6:51 am

Rikimaroo wrote:Thanks my brother swirdfish appreciate that feedback. I am here in Tampa Florida today to get a second opinion at Moffitt Cancer center just to cover all bases.

Folfiri is tougher then folfox I feel. My docs at Cleveland clinic here in Fl wanted to do more chemo to shrink the pelvic recurrence even more or possibly eradicate it but my thing is if that last four rounds shrunk it by half I prefer to get that sucker cut out. We also spoke to my surgeon at CC and he said surgery is an option but wants me to have surgery with intraoperative radiation which they do not have at CC Weston only Ohio has it. So they suggested Moffitt which has it.

So here I am went to bed at around 11:30 am and clustered the entire night didn’t get a lick of sleep. I blame it on eating La Brasa the beans you add to your rice cause I have been gassy as hell farting all night which also burns my ass!! I even popped three Imodium total. I think it’s finally stopped but still busting some farts which honestly I hate because not as fun like before alll this. I would recommend avoiding beans folks that have had reversal

Anyways that’s my update of my journey so far. Hoping they say stop chemo let’s plan on surgery chemo really sucks it’s absolutely necessary evil for sure.


I can understand why they want as much chemo as possible as it makes the surgeon's job easier. Before chemo I just wanted them to cut the tumor out and didn't understand why no surgeon would do it. But after learning that it shrunk over 90% I understood that it would make the surgery a lot easier (it was already a tough surgery even with the shrinkage) and that it could mean less loss of function. More chemo makes their life easier. The intraoperative radiation is interesting; I've never heard of it.

The clustering that you've gone through - I think that we've all gone through things like that. I will have a burrito from time to time but it definitely gets gassy. It's too bad because beans are so healthy. I haven't taken an Imodium since the obstruction back in December and am hoping that the Nopalina improves things a lot. I think that some combination of Nopalina, Miralax and Imodium can work for me as I've seen it works for others.

I hope that you can get some rest. My approach is to fast for two days and that will definitely provide a bathroom break.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 216
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Sun Jun 23, 2019 9:33 am

Well Moffitt Cancer Center did not have intraoperative radiation LOL, even though there website said it. I guess the possible surgery is pelvic exenteration if the chemo doesn't kill this and see what the next step is. I am not doing that surgery, I rather die.

Right now its just finish two more rounds of folfire and keep and eye on things. The pelvic tumor shrunk by half so I am assuming it might get killed with this chemo or I can do maintenance chemo, I don't know. Will keep you guys posted, on a good note cea 1.9 :) which has been a good indicator for me.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

NHMike
Posts: 1997
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Sun Jun 23, 2019 11:08 am

Good to hear your CEA number. You’ve really been up there in the past.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 216
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Sun Jun 23, 2019 12:26 pm

Thanks Buddy. I get so negative sometimes because this is all so frustrating. It's one damn tumor can't they just poke a needle into it and kill it. Cancer is so stupid.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

stu
Posts: 1132
Joined: Sat Aug 17, 2013 5:46 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby stu » Sun Jun 23, 2019 1:47 pm

Great CEA . Chemo is doing a great job . Who would blame you for feeling a bit down when your still on chemo .

Here’s to it obliterating it for good .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Punky44
Posts: 318
Joined: Mon Oct 01, 2018 4:29 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Punky44 » Sun Jun 23, 2019 10:21 pm

Happy for your low CEA!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Swirdfish » Wed Jun 26, 2019 5:51 pm

Rikimaroo wrote:Thanks my brother swirdfish appreciate that feedback. I am here in Tampa Florida today to get a second opinion at Moffitt Cancer center just to cover all bases.

Folfiri is tougher then folfox I feel. My docs at Cleveland clinic here in Fl wanted to do more chemo to shrink the pelvic recurrence even more or possibly eradicate it but my thing is if that last four rounds shrunk it by half I prefer to get that sucker cut out. We also spoke to my surgeon at CC and he said surgery is an option but wants me to have surgery with intraoperative radiation which they do not have at CC Weston only Ohio has it. So they suggested Moffitt which has it.

So here I am went to bed at around 11:30 am and clustered the entire night didn’t get a lick of sleep. I blame it on eating La Brasa the beans you add to your rice cause I have been gassy as hell farting all night which also burns my ass!! I even popped three Imodium total. I think it’s finally stopped but still busting some farts which honestly I hate because not as fun like before alll this. I would recommend avoiding beans folks that have had reversal

Anyways that’s my update of my journey so far. Hoping they say stop chemo let’s plan on surgery chemo really sucks it’s absolutely necessary evil for sure.


Keep your head up high bro you will get through this, and life will be back to normal.Even 6 - 8 months out is I believe still early stages on reversal, and from my experience I still had a lot of issues. It will get better as time goes by, but generally I have issues usually first thing in the morning. As soon as you eat, this awakens your bowels, and yes I have a bad urge to go up to x3 times. Then the rest of the day is somewhat normal, but u do frequent to toilet more due to less storage. It does come down to food, you will have to experiment. I do a lot of gym, so lots of protein shakes. This gives me issues. But generally I can live with it. Im over 2 years out, and I can say its annoying at times, but I can live with this happily. Also does chemo affect stools? I though chemo can give you the runs sometimes, I guess it depends which chemo regime your on.

Wish you will brother. Stay strong.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Rikimaroo
Posts: 216
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Fri Jul 05, 2019 12:35 pm

Just a quick update. I am taking a minor break from chemo, until July 22nd when I get my next pet scan. I just did a FOLFIRI treatment Wednesday June 26th. So I should be fine. Doc is cool with the break, its been hard, the nausea, taste bud loss, makes everything so difficult. Enjoying life sucks when on chemo....Pooping seems to be fine, I go maybe 2 times a day, but it really depends on what I eat. I have to avoid BEANS. It causes alot of gas and clustering from what I have found. Yesterday I had 2 bowel movements, first one I spent like 40 minutes on the toilet, then the 2nd one came about 20 minutes after the first one and it was a major blowout. I know when I am going to have a blowout because my my abdomen starts to churn like your going to have diarrhea.

Had a nice Fourth with the family. God Bless all my friends on here, lets kick cancers butt.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

NHMike
Posts: 1997
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Fri Jul 05, 2019 1:11 pm

Rikimaroo wrote:Just a quick update. I am taking a minor break from chemo, until July 22nd when I get my next pet scan. I just did a FOLFIRI treatment Wednesday June 26th. So I should be fine. Doc is cool with the break, its been hard, the nausea, taste bud loss, makes everything so difficult. Enjoying life sucks when on chemo....Pooping seems to be fine, I go maybe 2 times a day, but it really depends on what I eat. I have to avoid BEANS. It causes alot of gas and clustering from what I have found. Yesterday I had 2 bowel movements, first one I spent like 40 minutes on the toilet, then the 2nd one came about 20 minutes after the first one and it was a major blowout. I know when I am going to have a blowout because my my abdomen starts to churn like your going to have diarrhea.

Had a nice Fourth with the family. God Bless all my friends on here, lets kick cancers butt.


When you wrote 40 minutes, I thought that wasn’t so bad.

Hard to imagine life without beans.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 216
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Sun Jul 07, 2019 6:12 pm

Haha right Mike. I love beans with my Spanish food :(, oh well, don't want to cluster anymore. Things have been going better. I pooped once today it was kind of a blowout. But I stay on the toilet for at least 40 minutes to make sure everything comes out. I took a Lomotil/atropine right after.

I hope this cancer goes away I have scans on July 22nd. Will see how things look. I need to find a place in florida that does intraoperative radiation if this thing is still in my pelvic. I really need that for a chance to cure.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22


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