Update from Rikimaroo

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

Re: Update from Rikimaroo

Postby Eleda » Thu Oct 18, 2018 7:50 am

Great news :D :D speedy recovery ahead
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

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Update from Rikimaroo

Postby Nohogirl » Thu Oct 18, 2018 1:09 pm

Congrats Rikamaroo. Thats really good news to celeabrate.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Normal Pet Scan

Brearmstrong
Posts: 82
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Update from Rikimaroo

Postby Brearmstrong » Thu Oct 18, 2018 2:40 pm

So happy to hear!!!
45 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017lung 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3 Jan 19 1.3 Mar 19 1.0 jul 19 2.3
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Nov 18 CT clear, Feb 19 CT clear, May 19 CT clear

Trying
Posts: 170
Joined: Sun May 13, 2018 10:11 pm

Re: Update from Rikimaroo

Postby Trying » Thu Oct 18, 2018 3:51 pm

Terrific update. So happy for you
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets and peri metApril 2018
Folfox as of June 2018
Down to 2 mets in liver dec 2018.

Basil
Posts: 258
Joined: Thu Mar 16, 2017 12:33 pm

Re: Update from Rikimaroo

Postby Basil » Thu Oct 18, 2018 6:36 pm

Congrats on the negative biopsy and good luck getting your butt working again!
40 y/o male, kids 8&11
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

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Thu Oct 18, 2018 9:38 pm

I came out of surgery yesterday and all went well. I had clear liquid diet on day of surgery and today soft food.

Had pancakes for breakfast and eggs then chicken Parmesan for lunch then turkey for dinner

I am a little cramped or gassed up and have that full feeling. I have been walking a lot and burping and passed some gas through my bum.

Very anxious to poop. Concerned about eating anything now cause I don’t want to get any blockage scared of that

How long did it take for bowel movements for you guys?
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

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Fri Oct 19, 2018 7:15 am

Finally pooped this morning nothing huge. Went 4 times so far each time more poop came out. There going to release me. I am
Nervous about 1 hour trip home
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

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

Re: Update from Rikimaroo

Postby Eleda » Fri Oct 19, 2018 9:35 am

Wow
Only one night overstay?????
Is Ur illeostomy scar open???? Or stitched???
Hopefully u will continue to go well at home
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

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Fri Oct 19, 2018 10:02 am

It’s open looks like a little butthole on my stomach. They said heals from inside out and just shower with guaze off and then put new gauze on. No need to pack it.
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

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

Re: Update from Rikimaroo

Postby Eleda » Fri Oct 19, 2018 1:33 pm

Oh Jesus!!!!!!!!
Not looking forward to that!!!!!!
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: Update from Rikimaroo

Postby mandosquiddy » Sat Oct 20, 2018 6:57 pm

Congrats on your good news. I'm looking forward to the second butt hole I'll be getting when they take my illeostomy down in a couple 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

Rikimaroo
Posts: 222
Joined: Tue Dec 20, 2016 8:48 pm

Re: Update from Rikimaroo

Postby Rikimaroo » Mon Oct 22, 2018 9:39 am

Finally decided to get some depends since I had a few accidents. It just comes out fast and furious. It's not a ton of poo, but its just not controllable just yet.

Couple things I have noticed since reversal are, its harder to pee without worrying about pooping yourself while you try to pee. Legs hurt from visiting the toilet bowl so much. Of course the burning butt area so I use alot of calmoseptine which helps alot.

The gas and cramps are totally gone at this time, but was tough day after first bowel movement. Overall it is what I expected from reading everyone else experiences.
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

User avatar
Atoq
Posts: 332
Joined: Wed Oct 25, 2017 9:31 am

Re: Update from Rikimaroo

Postby Atoq » Mon Oct 22, 2018 10:09 am

I am glad to hear that surgery went fine and you are already at home! Wish you a quick recovery.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan, ok
12.09.18, 06.02.19 scope, ok. CEA 1.6
19.11.18 clear coloscopy

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Tue Oct 23, 2018 6:19 pm

Eleda wrote:Oh Jesus!!!!!!!!
Not looking forward to that!!!!!!


Mine looks like another belly button next to the original - at least from a distance.

BTW, I recommend Hypafix Tape, 2 inches wide, for keeping the gauze affixed. You want something that's sticky but not too sticky to cover some of the bottom and some of the top of the gauze so that it breathes.

You need to be careful doing a lot of things like getting out of bed, getting out of chairs, getting in and out of a car, etc. Three months out and I still sometimes feel a twinge when I move the wrong way. And I'm doing some strength training.
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

NHMike
Posts: 2009
Joined: Fri Jul 21, 2017 3:43 am

Re: Update from Rikimaroo

Postby NHMike » Tue Oct 23, 2018 6:29 pm

Rikimaroo wrote:Finally decided to get some depends since I had a few accidents. It just comes out fast and furious. It's not a ton of poo, but its just not controllable just yet.

Couple things I have noticed since reversal are, its harder to pee without worrying about pooping yourself while you try to pee. Legs hurt from visiting the toilet bowl so much. Of course the burning butt area so I use alot of calmoseptine which helps alot.

The gas and cramps are totally gone at this time, but was tough day after first bowel movement. Overall it is what I expected from reading everyone else experiences.


Most of this sounds familiar.

A note on Depends - they are mainly for urinary incontinence so they don't have rear coverage - at least that's the case for the ones that I bought from Costco. So I add two Always Ultra Thin pads with 10 hour protection. I will sometimes use the pads in my gym shorts when I'm not 100% sure that I won't have a problem. If I am sure that I won't have a problem, then I'll just go with shorts. This has always worked out - basically you will learn when you are good and when you are not sure. One other approach would be to use Abri San pads. These are rather large pads that you'd put between your body and your underwear or clothes and these will do a good job of containing fecal material. You just have to be careful taking them off as there's nothing but your clothes supporting them whereas Depands are self-supporting. Apologies for being graphic - but this is graphic stuff we're dealing with.

I have a gym duffel bag with Kirkland Wipes (100-count), barrier spray or cream, peri bottles, pads, diapers and plastic bags for disposal. I have a smaller Coloplast sample bag that will hold just peri bottles, a few wipes, two pads and a disposal bag.

Glad you're at home and welcome to the club.
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


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