Rectal cancer stage IV

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

Re: New on the forum

Postby Shana » Wed Mar 14, 2018 4:59 pm

Atoq wrote:There is a lot of literature about time of resection of lung metastases from colorectal cancer. There is a study modelling the time it takes for the last possible metastasis to show up on a CAT scan based on the time of volume doubling of the largest and therefore first metastasis. But if this is the reason to wait it would be nice to hear it from the medical team. It looks like this type of metastases do not spread to other sites but can only grow.

Claudia


That study is reassuring to read but yes, it would be even better to hear it from your doctors. There is so much information out there and so much of it is written above my pay grade! I have learned more about cancer this past year than I ever imagined or ever wanted!

I'm sure you will have a long list of questions for your oncologist once you see her/him.

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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Wed Mar 14, 2018 10:52 pm

Cancer sucks, waiting sucks and not knowing what's next sucks.

That's my rant. I am sorry you have to go through this Claudia.

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: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Mar 18, 2018 12:10 pm

I am at the hospital with high fever and high values of PCR indicating and infection. It could be anything, from the biopsy site, to the LAR site or urinal tract infection. I was really cold on Friday while outside with my students in the snow and I thought it was because I have lost all my body fat, but I was probably incubating something. :|

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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Sun Mar 18, 2018 1:13 pm

That's awful. You have had way too many trips to hospital lately. Powerful healing thoughts from a half a world away.
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: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Mar 21, 2018 11:01 am

I am going home! They isolated the bacteria and found the right antibiotics.

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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Wed Mar 21, 2018 11:10 am

:D :D :D
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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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New on the forum

Postby Robino1 » Wed Mar 21, 2018 7:29 pm

Atoq wrote:I am going home! They isolated the bacteria and found the right antibiotics.

Claudia


YAY!!! Doing the happy dance for you!!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

Re: New on the forum

Postby Shana » Mon Mar 26, 2018 2:37 pm

Robino1 wrote:
Atoq wrote:I am going home! They isolated the bacteria and found the right antibiotics.

Claudia


YAY!!! Doing the happy dance for you!!!


So happy that you're okay, Claudia! Doing the happy dance with Robin too :)

Take care and stay out of the nasty hospital!!
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!

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Atoq
Posts: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Mon Mar 26, 2018 4:14 pm

Thanks Shana and Robino and Caat for your warm support. Today I went for a 8 km skiing trip with my kids and then made a cacciucco, italian fishsoup. Life can be very very pleasant even with a stage IV diagnosis :D

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 Mar 26, 2018 8:25 pm

Atoq wrote:Thanks Shana and Robino and Caat for your warm support. Today I went for a 8 km skiing trip with my kids and then made a cacciucco, italian fishsoup. Life can be very very pleasant even with a stage IV diagnosis :D

Claudia


Life is full of twists and turns and roadblocks sometimes but there are many more sweet moments and memory makers out there. I'm so glad that you are staying optimistic, I truly believe a positive attitude helps us heal and helps treatment be more successful! The fishsoup sounds interesting, not too sure about how it would digest though... :lol:
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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Tue Mar 27, 2018 11:33 am

Happy you were able to enjoy your family and some good food. Isn't it great to still have some good times? Healing comes from all places.
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: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Apr 04, 2018 3:21 pm

Today I managed to talk to both the colon surgeon and the lung surgeon.

They confirmed that the reason to wait for three months is to watch if more metastases show up on the CAT scan. This time I cannot complain that they were not straight and sincere: "sometimes if we operate too early (before three months) we can observe suddenly 100 new metastasis" :shock:

Lung metastases can just grow but cannot give more metastases and they normally do not grow very fast.

They also told me that they want to reverse the ileostomy before the lung surgery, because after lung surgery they do not offer chemo here. It would be different if the metastasis was in the liver.

Anyway, the colon surgeon said that it is better to reverse the ileostomy as soon as possible, because then it is easier for the colon to start working again.

Finally, it should be possible to remove the lung metastasis by a wedge VATS resection.

And I can start running and going to the gym again, the surgeon meant that after this two months, if a hernia will occur it would be because of some weakness in the muscles and not because of me not being careful enough.

So I am very happy for all these clarifications and good news! :D

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 Apr 04, 2018 5:16 pm

Hi Claudia,

So glad to hear that you got many of your questions answered today and know what the plan is going forward. I hope you have peace of mind now and can set the date for the reversal as soon as they recommend.

Thanks for sharing the information too, very interesting about lung mets vs liver mets.

Hugs and have a wonderful rest of the 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!

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Thu Apr 05, 2018 5:23 pm

Answers to questions at last.
Take care,
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: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Apr 06, 2018 2:25 pm

Today I really feel like a normal person again! First I had 6 hours at work teaching statistics to MSc students, and then I ran 1 hour with the neighbour, and we were chatting all the time, although I have to admit that I am quite stiff in my legs now :mrgreen:
I used a comfizz belt to hold the bag and totally forgot about the ileostomy!

Best and have a nice weekend!

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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