Rectal cancer stage IV

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Rectal cancer stage IV

Postby Atoq » Wed Oct 25, 2017 2:41 pm

Hi, I am 45 and got one month ago a diagnosis of rectal cancer stage T3N2M0 at least, but there is a suspect metastasi in one lung. I have started three days ago the neoadjuvant chemo with Xeloda and radioterapy, 5 days a week for 5 weeks. I have two kids that are 10 and 7 and I live in Norway. I found this amazing forum looking about experiences with Xeloda and I decided to share my journey with you. :D

All the best

Claudia
Last edited by Atoq on Wed Sep 12, 2018 10:30 am, edited 1 time in total.
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: New on the forum

Postby kiwiinoz » Wed Oct 25, 2017 4:57 pm

Hi Claudia

I was diagnosed at Stage IV T3N0M1 with a metastasis in my right lung.
I am coming up to 5 years from diagnosis and am currently NED (No Evidence of Disease) so I am suggesting that there is hope.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: New on the forum

Postby CRguy » Wed Oct 25, 2017 5:18 pm

Me too Claudia
I was "supposedly" Stage IIIc did neoadjuvant chemoradiation with Xeloda, resection, adjuvant Xeloda, temporary ileostomy, ileostomy takedown
and a whole shitload of follow ups!

Lung met resected with more chemo 2.5 years later

NOW = still here 10 years after original diagnosis / resection

Like my friend Kiwi, ....HOPE ???
hellyeah !!!!
we ARE HOPE here, and live to prove it every day

Best wishes,
Welcome to the BEST forum nobody ever wants to have to join :shock:

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New on the forum

Postby Lee » Wed Oct 25, 2017 5:55 pm

Hi and welcome, sorry for the reason you are here.

I don't have any real advice except to say many people are beating this cancer today, so do not give up the hope. There have been a lot of advancements in the last 15 years.

You have found a great place for information and support,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Thu Oct 26, 2017 2:31 am

Thanks a lot for sharing your stories :D

All the best

Claudia
Last edited by Atoq on Thu Oct 26, 2017 2:09 pm, edited 1 time in total.
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: New on the forum

Postby SweetC80 » Thu Oct 26, 2017 12:09 pm

Sorry you find yourself here, but thoughts and prayers you have a good response to treatment and find yourself NED soon!
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: New on the forum

Postby NHMike » Thu Oct 26, 2017 3:38 pm

There are folks where all along the treatment path including those that are done with it for a while so we know a lot of what you're going through so feel free to ask questions, vent or just chat here. Welcome to the board and I hope that you do well on the radiation and chemo with minimal side-effects.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: New on the forum

Postby Aqx99 » Thu Oct 26, 2017 6:55 pm

There are a lot of us on here that are on the same journey as you. I am almost done with my adjuvant chemotherapy and will be having the takedown of my ileostomy some time after the first of the year. Feel free to ask any questions you have, we are here for you.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Oct 27, 2017 7:02 am

Thanks again for response! Today I am finished with my first week and I have also been checking one ovarian cyst but it looks like is clear and not related to the CRC. They took anyway cells and blood sample to test for specific markers and plan to remove that together with the uterus. So far so good, I feel positive and keep on training and working 50% as long as it is possible.

All the best and have a super weekend! :D

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New on the forum

Postby DarknessEmbraced » Mon Oct 30, 2017 2:51 pm

Welcome to the group but sorry for the reason you're here.*hugs* I hope your chemo and radiation go well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Nov 17, 2017 5:05 pm

A little update: I am finished with the 4th week of neoadjuvant chemoradioterapy. I fell fine apart for some pain in the xxxx.

I hope I will be able to work next week, because I have quite a lot of teaching. I have been reading a lot on the forum and it is amazing how much good information and links to papers can be found here!


I wish a nice weekend to everybody and I am happy to share my journey with all of you!


All the best


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Fri Nov 17, 2017 8:58 pm

I know that the last couple weeks of chemo/radiation can be tough. I soaked in the bath a lot and sat under the fan. If you can ask your radiology oncologist for some lidocaine it is helpful for the pain. Once you finish it doesn't take too long for your bottom to feel better. Good luck with the last week of your treatment.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Nov 24, 2017 10:11 am

Hi! I finished today with 25 radiochemotherapy sessions. I also had the last control and the results of biopsy from uterus and cervix. They were both negative but they want to remove everything anyway, also ovaries. I was surprised that the doctor said that they do not give adjuvant chemo for rectal cancer after the neoadjuvant one. At least for stage 3. I am going to get a new ct scan in 4 weeks to see if my suspect lung metastasis has changed. It will be good with some break now!

All the best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Fri Nov 24, 2017 10:29 am

I was stage 2A rectal cancer and neoadjuvant therapy, surgery, then adjuvant therapy. Are you saying you won't have chemo after your surgery? I think that is pretty standard for rectal cancer unless stage 1 or less.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Nov 24, 2017 11:00 am

susie0915 wrote:I was stage 2A rectal cancer and neoadjuvant therapy, surgery, then adjuvant therapy. Are you saying you won't have chemo after your surgery? I think that is pretty standard for rectal cancer unless stage 1 or less.

I guess it will depends on whether I am restaged to 4 and on the histology results of the removed tumor, but I was also surprised. Although I read several papers that show no evidence for increased survival after adjuvant chemo in rectal cancer, after radio and neoadjuvant chemo was given.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED


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