Re: New guy with old questions.

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utahgal7
Posts: 243
Joined: Fri Sep 11, 2020 12:04 pm

Re: New guy with old questions.

Postby utahgal7 » Mon Jun 03, 2024 1:27 pm

Joe,

I hope your surgery was a success and I hope you feel better really soon. I know the ostomy will be an adjustment. Best advice that I can give is to take 1 day at a time and lean on your family and friends for support.

You got this buddy! As soon as you are feeling up to it, let us know how you are doing.

Take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

JP66
Posts: 47
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: New guy with old questions.

Postby JP66 » Mon Jun 03, 2024 2:14 pm

Thank you Paige. I can tell you are a truly amazing and inspirational person!

Just got home now Monday at 3PM and walked 1/4 mile VERY SLOWLY. Try a 1/2 mile tomorrow. Unfortunately I had a terrible skin reaction with 5 dime size blisters developing around the edges of the Hollister adhesive so now I came home with Convatec supplied by the WOC, but unfortunately the hospital didn't have extra bags so I will probably try Coloplast stuff as I already have lots of their stuff I was planning on trying at some point. The ileostomy is annoying a bit because it never stops oozing. tried an experiment of not eating until is stopped and it took 17 hours so that's not an option :roll:

Mostly though just really really happy to be home and not hooked up to an IV!

joe :)
Male 58 y/o
TIIIbN+M1 - Stage IV (10/23) - 2 left common iliac lymph nodes metastatic
MSI - MSS; KRAS non-mutant
Modified Neo-adjuvant Therapy (FOLFIRINOX instead of FOLFOX)
tumor 7.4 cm from AV, moderately differentiated
12/23 - 27 treatments rad+Xeloda
03/24 6 FOLFIRINOX infusions
4/24 PET Scan and MRI - tumor gone, lymph nodes normal
5/30/24 Total Mesorectal Excision (TME) + lymphadenectomy of 2 left common iliac LN
7/15/24 6 rounds FOLFOX
CEA (10/23-10/24) 1.8,1.3,1.6, 1.8, 1.6,2.1,2.7

utahgal7
Posts: 243
Joined: Fri Sep 11, 2020 12:04 pm

Re: New guy with old questions.

Postby utahgal7 » Sat Jun 08, 2024 6:19 am

Thank you, Joe!

It's good to know that you made it home and staying active is important! In reference to ostomy output, there are tips and tricks that may or may not slow things down, so YMMV. For me, eating marshmallows and mashed potatoes slowed down ostomy output. Also, my CRC surgeon recommended Metamucil for slowing down output. Maybe your surgeon or ostomy nurse can make recommendations that would be helpful.

Good luck to you. Keep in touch!

Take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

mariane2
Posts: 4
Joined: Mon Oct 21, 2024 11:19 am
Facebook Username: gosia dusza

Re: New guy with old questions.

Postby mariane2 » Tue Oct 22, 2024 10:11 pm

Good luck guys and best o success with everything. I just wanted to let you know that I have been still clear in August 2024. I forgot the password to my first account while I was inactive and busy with life.
Mariane
stage 4 rectal cancer diagnosed in 2015,
NED since 2016,
old time member Mariane


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