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Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Feb 16, 2018 12:11 pm

Caat55 wrote:Everyone is cautioning about holding off on the reversal until well past mop up chemo due to side effects. If you have to do chemo for the lung maybe wait. The bag I think is easier to manage then a sore bum. The oncologist said the chemo is hard on body, and that is better to have colon rest than work so hard .

Trondheim is beautiful. We stayed there twice.

Susan


I agree, especially if already you expect increased urgency, frequency and clustering due to the LAR. Ileo reversal can wait.

I found a video of the nail biopsy:
http://kreftlex.no/Lungekreft/Prosedyre ... sFaq=False


Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Fri Feb 16, 2018 4:57 pm

I am really wondering what is the chance that I got a new primary tumor in the lungs, when lungs are the first place for metastasis from colorectal cancer...what is the chance that the biopsy give a false negative? Wouldn’t be better to just remove it as a metastasis? I feel pissed because they did not give me a copy of the PET CT report and I don’t know if something else like linphonodes looked suspect.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Fri Feb 16, 2018 5:34 pm

That's such a bummer that you have to wait for a mailed copy of the report. My report was online by the afternoon of the PET scan and I was able to read it, good or bad.
I would think they would have told you all they saw, not held anything back. How frustrating!!!
S
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

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Mon Feb 19, 2018 3:04 am

Yesterday I had pain in my belly and had to go to the hospital. Everything turned out to be normal, blood and x-ray, so it was probably a partial blockage due to adherences or too much fibers. I hope to go home today.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Mon Feb 19, 2018 7:00 pm

Hi Claudia,
Hopefully they sent you home today. The stoma nurse was pretty firm about the fiber, as an example I can eat butter lettuce but not spinach or romaine. She is one of the people to take the call if there is a suspected blockage so I think she errors in favor of caution. They told me there were several things to do at home to ease a blockage. Did you give you a list of things to try?
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

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Shana
Posts: 373
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Mon Feb 19, 2018 9:58 pm

Atoq wrote:Yesterday I had pain in my belly and had to go to the hospital. Everything turned out to be normal, blood and x-ray, so it was probably a partial blockage due to adherences or too much fibers. I hope to go home today.

Claudia


Hi Claudia,

I hope all is well and you're home resting after this latest ordeal!

I also hope that you get the results from your PET scan soon too. The stress of wondering and worrying can drive one crazy. Take care and let us know how you're doing when you're up to it.

Hugs,
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!

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Feb 20, 2018 3:49 am

Caat55 wrote:Hi Claudia,
Hopefully they sent you home today. The stoma nurse was pretty firm about the fiber, as an example I can eat butter lettuce but not spinach or romaine. She is one of the people to take the call if there is a suspected blockage so I think she errors in favor of caution. They told me there were several things to do at home to ease a blockage. Did you give you a list of things to try?
Susan


Thanks Susan!
Yes, at the end I was able to go home, the CAT scan showed only a small disorganized region around the anastomosi, which could be a leakage, but has nothing to do with my simptoms. The contrast was passing through the small bowel without visible problems.

The funny thing is that the surgeon (a new one again) did not have any advice to avoid this in the future other than drinking a lot. But I think I have eaten too many grapes and probably the celery was not a good idea too. I don’have a list of things to try. I tried to walk but in the end it was just too much pain. It seems like getting something for the pain helped the bowel to work as well.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Feb 20, 2018 3:53 am

Shana wrote:
Hi Claudia,

I hope all is well and you're home resting after this latest ordeal!

I also hope that you get the results from your PET scan soon too. The stress of wondering and worrying can drive one crazy. Take care and let us know how you're doing when you're up to it.

Hugs,
Shana


Thanks Shana!
I got the report of the new CAT scan immediately, someone is following the rules and someone is more relaxed. I feel fine now, but being at the hospital is always a bit stressful, it is so nice to be home!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Tue Feb 20, 2018 1:23 pm

Claudia,
In general they told me to avoid fiber, fibrous veggies like celery, asparagus, corn, beets, fruit with skins and seeds, strawberries, grapes, apples with skin, whole grain breads and nuts. I can have butter lettuce and avocados so I am happy. This is for first 8 weeks then gradually things in a little at a time. I hope this is useful. I try to chew a lot just like you mentioned. Drinking is also important, nurses all recommended 8 to 10 cups of water. My blood pressure was low this am, only 90/50 so the nurse who comes to the house was kind of concerned, mention IV fluids as a possibility so I am on my second huge cup of tea. The drinking is hard as it fills me up and I don't really want to eat. I am trying to drink salty broth as a part of the liquids.

This is all seems to have a pretty big learning curve.

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

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Feb 20, 2018 2:28 pm

Thanks a lot Susan, I probably ate too many grapes and also a bit of celery...good to know that it is just the first two months we need to be careful. But is it because of the trauma of the operation? Because of likely scar tissue or adherences? I also drink a lot of tea, wild rose, ginger, green tea. I try to chew more but I really have to watch out because I am such a quick eater.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

heiders33
Posts: 226
Joined: Sat Nov 04, 2017 11:08 am

Re: New on the forum

Postby heiders33 » Tue Feb 20, 2018 2:31 pm

I think it has more to do with the swelling of the small intestine caused by the operation, which goes down over time.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Feb 20, 2018 2:37 pm

heiders33 wrote:I think it has more to do with the swelling of the small intestine caused by the operation, which goes down over time.


Ok, this makes really sense, the CAT scan mentions a thickening of the walls of both small intestine and colon.
Thanks!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Fri Feb 23, 2018 8:31 pm

Hi Claudia,
You've been quiet, hope things are okay?

It snowed here yesterday, nothing like you get way up near Arctic Circle but exciting. I managed to get a walk in and to the top of my little hill.

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

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sat Feb 24, 2018 3:35 am

Thanks! I am fine, waiting to know when I will have the needle biopsy and doing long walks in the snow with my dogs. Here in Norway is winter holiday this week and the kids are at home. :D
Snow is really cool!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Sat Feb 24, 2018 11:42 am

Walking is honestly when I feel best. Too bad I couldn't walk to work! Enjoy kid time, can't wait for one of mine to come home from college.
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


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