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
Re: New guy with old questions.
Re: New guy with old questions.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 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; 1.2; 1.2
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)
CEA 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; 1.2; 1.2
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: 64
- Joined: Sun Jan 21, 2024 8:42 am
- Facebook Username: joseph peck
- Location: Westchester, NY
Re: New guy with old questions.
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
Mostly though just really really happy to be home and not hooked up to an IV!
joe
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
Mostly though just really really happy to be home and not hooked up to an IV!
joe
Male born 3/66
10/23 TIIIbN+M1 - Stage IV common iliac lymph nodes metastatic
tumor 7.4 cm from AV, moderately differentiated
MSI-MSS; KRAS non-mutant
MD plan - Modified Neo-adjuvant Therapy
12/23 - 27 treatments rad+Xeloda
03/24 6 rounds FOLFIRINOX
5/24 TME/LAR + lymphadenectomy of common iliacs, temporary ileostomy
7/24 6 rounds FOLFOX
1/25 ileostomy reversal
4/25 PET Scan - NED
5/25 Signatera -neg
CEA (10/23-3/25) 1.8,1.3,1.6, 1.8, 1.6,2.1,2.7,2.4,1.4
10/23 TIIIbN+M1 - Stage IV common iliac lymph nodes metastatic
tumor 7.4 cm from AV, moderately differentiated
MSI-MSS; KRAS non-mutant
MD plan - Modified Neo-adjuvant Therapy
12/23 - 27 treatments rad+Xeloda
03/24 6 rounds FOLFIRINOX
5/24 TME/LAR + lymphadenectomy of common iliacs, temporary ileostomy
7/24 6 rounds FOLFOX
1/25 ileostomy reversal
4/25 PET Scan - NED
5/25 Signatera -neg
CEA (10/23-3/25) 1.8,1.3,1.6, 1.8, 1.6,2.1,2.7,2.4,1.4
Re: New guy with old questions.
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
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 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; 1.2; 1.2
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)
CEA 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; 1.2; 1.2
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)
Re: New guy with old questions.
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
Mariane
stage 4 rectal cancer diagnosed in 2015,
NED since 2016,
old time member Mariane
NED since 2016,
old time member Mariane
Re: New guy with old questions.
Hi Joe -
Congratulations on your results so far, and thank you for updating your signature with the recent Signatera findings.
One week from today will mark the first year anniversary of your double-barrelled "TME/LAR +
lymphadenectomy" surgery, so by then you will have successfully completed the first of 5 years of required follow-up.
However, as you have already mentioned, "... the war isn't over..." since you will still have 4 years to go before the doctors can declare that you are in "Complete Remission".
If you have any questions at this point in time, now is the time to ask them. There are members of this forum who might have some useful input for you to consider sharing with your doctors.
And as our good friend CRguy has mentioned many times in the past, asking the right questions at the outset is the key to survivorship:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58694&p=462318#p462318
Congratulations on your results so far, and thank you for updating your signature with the recent Signatera findings.
One week from today will mark the first year anniversary of your double-barrelled "TME/LAR +
lymphadenectomy" surgery, so by then you will have successfully completed the first of 5 years of required follow-up.
However, as you have already mentioned, "... the war isn't over..." since you will still have 4 years to go before the doctors can declare that you are in "Complete Remission".
If you have any questions at this point in time, now is the time to ask them. There are members of this forum who might have some useful input for you to consider sharing with your doctors.
And as our good friend CRguy has mentioned many times in the past, asking the right questions at the outset is the key to survivorship:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58694&p=462318#p462318
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