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kiwiinoz
Posts: 1085
Joined: Thu Jan 03, 2013 11:44 pm

Re: New on the forum

Postby kiwiinoz » Thu Dec 07, 2017 7:26 pm

There you go Claudia

On your feet, eating, things will start to improve from there.
Amazing what a difference a week or two will make physically and mentally.

Small digestible chunks and you can grind it away.

I am 4 weeks after open surgery for adhesions and I can't exercise or run (I love running) so I understand your frustration at not being able to strength train or dance. Just find something that keeps you positive, keeps you focused on a life not exclusively about cancer and you can find your "Claudia place".

Keep warm, 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 - 27 March 2017
Port Out 26 March 2015

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Thu Dec 07, 2017 11:44 pm

Thanks Kiwi, I also live to run, I actually thought I was not sick, because I ran a quite good 10k in a local race just before my diagnosis. Good luck with your recovery, soon running again!

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

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 12:05 pm

I am going home tomorrow, learning how to handle my colostomy and walking a lot in the corridor.

This evening we got whale meat with a lot of sauce for dinner, it goes against my principles but I found it so funny that I had to go for it.

Now I will have to come back in strenght for the next operation. After open surgery, when did you start to drive, walk the dog, hike on terrain? Did you use a belt?

I can already stand on one foot :)

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
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy

NHMike
Posts: 702
Joined: Fri Jul 21, 2017 3:43 am

Re: New on the forum

Postby NHMike » Sun Dec 10, 2017 1:34 pm

After open surgery, when did you start to drive, walk the dog, hike on terrain? Did you use a belt?

I had open surgery with a five inch scar and four other holes. The first time I drove after surgery was 9 days later. I drove three times for about five miles and had no problems. We don't have a dog but I was walked 5,000 steps 8 days after, 8,000 steps 9 days after and 27,000 steps (9 miles) 10 days after. I did not use a belt, either for the bag or for support. In retrospect, walking the 9 miles was probably more than I should have done.

I've read about others that drove five days after surgery. I don't know what kind of surgery they had though (open vs lap).
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 5:20 pm

Thank you NHMike for your reply!

Tomorrow I will try to fish more information from the doctors, they tell me so little about my status and future, I understood from the net that now I have a colostomy and later I will have a ileostomy, but they somehow don’t want to use the scientific terms and explain what it is.

I had a ct scan with contrast (really painful to get it both IV and in the rectum while everything was blocked) but they did not tell me anything about what they saw.


Perhaps I just need to explain then that I understand their language and I am not an hysterical Italian mama. :lol:

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

NHMike
Posts: 702
Joined: Fri Jul 21, 2017 3:43 am

Re: New on the forum

Postby NHMike » Sun Dec 10, 2017 5:32 pm

Atoq wrote:Thank you NHMike for your reply!

Tomorrow I will try to fish more information from the doctors, they tell me so little about my status and future, I understood from the net that now I have a colostomy and later I will have a ileostomy, but they somehow don’t want to use the scientific terms and explain what it is.

I had a ct scan with contrast (really painful to get it both IV and in the rectum while everything was blocked) but they did not tell me anything about what they saw.


Perhaps I just need to explain then that I understand their language and I am not an hysterical Italian mama. :lol:

Claudia


Does this mean that you have a temporary colostomy and will get an ileostomy later on?
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 5:51 pm

NHMike wrote:
Does this mean that you have a temporary colostomy and will get an ileostomy later on?


I think so, they did it because I had a blockage, but the tumor is still in the rectum, because they want it to shrink after radiation for 7 more weeks.

When they remove the tumor they will make a new stomy so that the connection between colon and rectum can heal.

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

NHMike
Posts: 702
Joined: Fri Jul 21, 2017 3:43 am

Re: New on the forum

Postby NHMike » Sun Dec 10, 2017 5:54 pm

Atoq wrote:
NHMike wrote:
Does this mean that you have a temporary colostomy and will get an ileostomy later on?


I think so, they did it because I had a blockage, but the tumor is still in the rectum, because they want it to shrink after radiation for 7 more weeks.

When they remove the tumor they will make a new stomy so that the connection between colon and rectum can heal.

Claudia


Interesting. This is the first time I've heard of it happening this way. My tumor was large and very uncomfortable and I often asked why they couldn't just cut it out.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 6:13 pm

NHMike wrote:
Interesting. This is the first time I've heard of it happening this way. My tumor was large and very uncomfortable and I often asked why they couldn't just cut it out.


I guess it might spread easier if you cut it to make it smaller? When you cut you should remove everything?

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

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: New on the forum

Postby Lee » Sun Dec 10, 2017 6:21 pm

Atoq wrote:
I think so, they did it because I had a blockage, but the tumor is still in the rectum, because they want it to shrink after radiation for 7 more weeks.

When they remove the tumor they will make a new stomy so that the connection between colon and rectum can heal.

Claudia


Sorry about the emergency surgery, butt yes they want radiation to do it job first. That way you should get clean margins. Just remember to keep walking every day.

Good luck,

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 - 10 years and counting!

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 6:23 pm

From medical dictionary:

Curative cancer surgery demands special considerations. There is a danger of spreading or seeding the cancer during the process of removing it. Presuming the cancer cells can grow almost anywhere in the body to which they spread, the surgeon must not "spill" cells into the operating field or "knock them loose" into the blood stream. Special techniques called "block resection" and "no touch" are used. Block resection means taking the entire specimen out as a single piece. "No touch" means that only the normal tissue removed with specimen is handled; the cancer itself is never touched. This prevents "squeezing" cancer cells out into the circulation. Further, in this technique pains are taken to clamp off the blood supply first, preventing cells from leaving by that route later in the surgery.

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

User avatar
Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Sun Dec 10, 2017 6:24 pm

Thanks a lot Lee.

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
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy

User avatar
Shana
Posts: 157
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Thu Dec 14, 2017 10:45 am

Atoq wrote:From medical dictionary:

Curative cancer surgery demands special considerations. There is a danger of spreading or seeding the cancer during the process of removing it. Presuming the cancer cells can grow almost anywhere in the body to which they spread, the surgeon must not "spill" cells into the operating field or "knock them loose" into the blood stream. Special techniques called "block resection" and "no touch" are used. Block resection means taking the entire specimen out as a single piece. "No touch" means that only the normal tissue removed with specimen is handled; the cancer itself is never touched. This prevents "squeezing" cancer cells out into the circulation. Further, in this technique pains are taken to clamp off the blood supply first, preventing cells from leaving by that route later in the surgery.

Claudia


Thank you for sharing this Claudia, very good information!

This helps me understand why my surgeon has made me wait so long to remove tumor and resect.My tumor is in the descending colon at the splenic juncture and quite close to the pancreas.

I had an emergency colostomy about 6 months ago due to a blockage which was most likely caused by colitis which inflamed the entire colon and sealed off the remainder of the space near the primary tumor. I am hopeful that with continued shrinkage of my tumor and liver mets that they will reconsider colectomy and resection in 2018.

Wishing you a speedy recovery and best of luck as you continue your treatments. By the way I was driving about 10 days after open surgery (5 inch incision)

Happy Holidays!

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

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Atoq
Posts: 40
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Thu Dec 14, 2017 6:36 pm

Thanks a lot Shana. I am home now and the main problem is to understand how much I can do and I should not do / rest.

The recovery has been really quick and I went home on Monday without any painkiller, just anticoagulant injections, which I have to do till the next surgery in February.

The management of the colostomy has been until now easy and I use the Sensura mio one piece bags from Coloplast.

I still feel some pain when gas or stool come out but I hope it is because the tissue is still healing.

Tomorrow I will go to remove my 30 staples and have a CT scan of the chest.

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

User avatar
Shana
Posts: 157
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Thu Dec 14, 2017 6:48 pm

Atoq wrote:Thanks a lot Shana. I am home now and the main problem is to understand how much I can do and I should not do / rest.

The recovery has been really quick and I went home on Monday without any painkiller, just anticoagulant injections, which I have to do till the next surgery in February.

The management of the colostomy has been until now easy and I use the Sensura mio one piece bags from Coloplast.

I still feel some pain when gas or stool come out but I hope it is because the tissue is still healing.

Tomorrow I will go to remove my 30 staples and have a CT scan of the chest.

Claudia


I think you're doing great Claudia! It sounds like you were in excellent shape before surgery which is likely why you are healing so quickly. I am sure you are getting a lot of advice so I will just say listen to your body and take it easy when you feel fatigued.

I did not pick up anything over 10lbs for about 6 weeks as recommended by my surgeon. That area is going to be sore while it's healing which is to be expected.

It's taken me awhile but I've learned a lot about my digestive system and know that a meal stimulates things so I take that into account when traveling for a distance so I don't need to make a stop on the road.

I stopped taking anticoagulant injections when I was released from the hospital. Is that standard protocol for you to take them where you received your surgery?

Take Care!

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress


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