Rectal cancer stage IV

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Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Sat Apr 21, 2018 10:35 am

Good spring morning started with wafflers, heart shaped. My husband got the pan at a yard sale in Norway. We were going to make aebelskivers but got lazy. If I can not tolerate wine at least I can enjoy treats. Made me think of you, hope all if well.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sat Apr 21, 2018 10:44 am

:D mmmm waffler! We also make them at home. I am fine, thanks, today I was all day at an agility course with my Lundehund Milo. I am waiting for the call from the hospital to reverse the ileostomy, it feels a bit strange not to take any mop up chemo, but I enjoy this limbo. I might even run a staffette in Oslo the 5th of May if I don’t get surgery before :mrgreen:

All the best and have a nice weekend! I hope you can soon enjoy again a glass of good wine.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Eleda
Posts: 151
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New on the forum

Postby Eleda » Mon Apr 23, 2018 1:37 pm

Claudia, im n Europe also and apparently there is a,world wide standard care of approach, I im awating surgery may 10th stage 3b( not sure yet about lymphs till removed) 6 were enlarged previous to radiochemo therpy and I will have a tep illio until adjuvant chemo is finished, I had 80%reduction in my tumor and my surgery is so low apparently ill nearly b able to feel the anastomosis from the outside,,, but here we follow uk and American proceedures, where anything in the lymps even if its,only suspected is given mop up!!!!

As,far as im aware Norway Finland and holland actually has the highest insidences in the world of colon cancer so maybe ur ahead of the rest if us in.ur after surgery treatment,,,,
Wishing u a speedy recovery yet again
Adele
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

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Apr 24, 2018 10:53 am

Thanks Eleda! Good luck with the surgery! I phoned today the hospital and they said perhaps I will be called for reversal of ileostomy in June. More waiting...but the reason I asked is that I want to partecipate to a staffette in Oslo in May :mrgreen:

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Eleda
Posts: 151
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New on the forum

Postby Eleda » Tue Apr 24, 2018 11:24 am

Thay are the same here tho in relation to ur file and giving you any kind information, its like getting blood from a stone ( HOLY GRAIL) no information on any scans Mri etc,,, I had to take my file from one department to another so took a detour to the toilet on the way and took pictures of anything in my fileI wanted to know
Otherwise id b completly In the dark
Only good thing is because im a private patient I see the same surgon and oncologist every appointment, I pay out of pocket,,,,,
We have a 2 teir system n ireland
I'm also hoping to go on an oncology trial after surgery

Adele
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

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Mon May 07, 2018 4:14 pm

This evening I had a complete CAT scan, three months since my last PET scan, so I guess they are evaluating both the pelvis for reversal and the lung metastasis. On Saturday I ran a staffette in Oslo with 15 laps and my team won in the class superveteran women :mrgreen: It was quite cool to be in a race and fly to Oslo alone despite the stomy, even if my lap was only 700 m, way too short because I am not a quick runner. I am back to my ideal weight and energy level, is it optimism or I am just unaware? :D

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Mon May 07, 2018 4:22 pm

Atoq wrote:This evening I had a complete CAT scan, three months since my last PET scan, so I guess they are evaluating both the pelvis for reversal and the lung metastasis. On Saturday I ran a staffette in Oslo with 15 laps and my team won in the class superveteran women :mrgreen: It was quite cool to be in a race and fly to Oslo alone despite the stomy, even if my lap was only 700 m, way too short because I am not a quick runner. I am back to my ideal weight and energy level, is it optimism or I am just unaware? :D

All the best

Claudia


Hi Claudia!

What great news regarding your energy and stamina! Optimism is good for the soul and psyche, hoping your CT scan results are clear! I have one scheduled on Friday along with another CEA test due to rising numbers. I'm hoping that the higher CEA is not an indicator of progression or new metastasis :( I know I will have to wait until Monday for the test results but I am okay with waiting because good news can wait and bad news won't be able to ruin my weekend...

Have a good week,
Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: New on the forum

Postby NHMike » Mon May 07, 2018 6:01 pm

Sounds like you're getting back to normal which is great!
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; 9/8: 1.8; 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
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

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Tue May 08, 2018 12:19 am

What is a staffette? Congrats on both flying and running, mind over body!
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue May 08, 2018 12:34 am

Caat55 wrote:What is a staffette? Congrats on both flying and running, mind over body!
Susan


Relay race in English :D it is staffett in Norvegian and staffetta in Italian, so I assumed it was the same.

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Fri May 11, 2018 12:25 am

Ah.. my husband ran cross country in Norway, skied, couldn’t translate staffette for me.

You must feel so proud.

I am going to move my tomatoes and peppers from our greenhouse to garden, an exercise with Mother Earth this weekend. I can’t get all the way up the hill on infusion week but I do keep moving.

Thank for inspiring us.
SUSAN
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed May 23, 2018 7:53 am

Hi! I am still waiting the results of CAT scan of whole body, today I got fed up and called several numbers, but nobody can tell me whether the situation is stable or not. I had the scan on the 7th of Maj :evil:
But at least they scheduled my reversal for the 4th of June, I guess they will tell me something on the preoperative meeting :roll:
Otherwise I have been patiently waiting and enjoying this beautiful Norwegian spring.

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Wed May 23, 2018 10:50 pm

Atoq wrote:Hi! I am still waiting the results of CAT scan of whole body, today I got fed up and called several numbers, but nobody can tell me whether the situation is stable or not. I had the scan on the 7th of Maj :evil:
But at least they scheduled my reversal for the 4th of June, I guess they will tell me something on the preoperative meeting :roll:
Otherwise I have been patiently waiting and enjoying this beautiful Norwegian spring.

All the best

Claudia


That's such a long time to wait! I hope no news is good news and that if was truly of great concern that they would have contacted you by now.

Enjoy your spring and the beautiful flowers!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Thu May 24, 2018 9:44 am

Atoq wrote:Hi! I am still waiting the results of CAT scan of whole body, today I got fed up and called several numbers, but nobody can tell me whether the situation is stable or not. I had the scan on the 7th of Maj :evil:
But at least they scheduled my reversal for the 4th of June, I guess they will tell me something on the preoperative meeting :roll:
Otherwise I have been patiently waiting and enjoying this beautiful Norwegian spring.

All the best

Claudia


The scan must be okay of they wouldn't have scheduled surgery, no news is good news? I remember the lupine in Norway were so lovely.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Thu May 24, 2018 10:04 am

Caat55 wrote:The scan must be okay of they wouldn't have scheduled surgery, no news is good news? I remember the lupine in Norway were so lovely.
Susan


Yes, I hope you are right, at least that would be true for the lung surgery, but maybe not for the ileostomy reversal. At least I live better with no news than bad news. :P
By the way lupins are beatiful but invasive alien species here, they were introduced as a decoration on the motorway but they are taking over and replacing native plants. Mode biologist off 8)



Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6


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