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Pemba
Posts: 46
Joined: Thu Aug 24, 2017 7:52 am

Re: New on the forum

Postby Pemba » Fri Nov 24, 2017 11:27 am

Hej Claudia min skandinaviske ven!

I’m sure you’re gonna beat this, Norwegian Viking 8)

I have a question, where you testet positive for lynch syndrome since they decided to clean out the downstairs apartment? Because you are under 50 you should be able to get a genetic test done, it would be a great marker for the future and for your kids. The hospital have probably already talked about offering a colonoscopy to your kids from age 25!
25Y
15mm polyp
Next scopy: 2020

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

Re: New on the forum

Postby Atoq » Fri Nov 24, 2017 12:29 pm

Hei,
I was tested negative for Lynch, but this is the only genetic test they have done yet. I will update the signature. My father had colon cancer when he was 63.

Actually, I am Italian, but I lived in Norway for the last 15 years :)

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
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 » Fri Dec 01, 2017 4:21 pm

A week has gone after the last chemo and radiotherapy session and I am feeling much better, just a bit of nausea which started now, but I guess both Xeloda and radio are still at work in my body.

I am a bit worried about the CT scan to my lungs in two weeks. It is to see if the 8 mm node changed with Xeloda, which would restage me as 4.

I see that when I can train strength or dance I am much more positive, while spending a lot of time at home makes me more negative.

I am also worried about adjuvant chemo, I guess I should just focus on these two months of break and then the operation, but it is difficult to concentrate myself on the present.

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

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susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Fri Dec 01, 2017 4:28 pm

One step at a time. The radiation continues to work for at least 8-12 weeks after treatment. After my chemo/radiation all that was left was scar tissue. Surgeon said I may not have to do chemo after surgery, but there was minimal residual cancer cells. I did 6 rounds of Xelox. Use this time to try and get stronger and take care of yourself to help with recovery after surgery. I'm glad you are feeling better. It does take a couple weeks to get feel normal again, and those last couple weeks of radiation can be brutal.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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

Re: New on the forum

Postby NHMike » Fri Dec 01, 2017 5:04 pm

Atoq wrote:A week has gone after the last chemo and radiotherapy session and I am feeling much better, just a bit of nausea which started now, but I guess both Xeloda and radio are still at work in my body.

I am a bit worried about the CT scan to my lungs in two weeks. It is to see if the 8 mm node changed with Xeloda, which would restage me as 4.

I see that when I can train strength or dance I am much more positive, while spending a lot of time at home makes me more negative.

I am also worried about adjuvant chemo, I guess I should just focus on these two months of break and then the operation, but it is difficult to concentrate myself on the present.

Best

Claudia


We went on a vacation in-between the end of chemo/radiation and surgery and it was quite nice. I wouldn't have been able to enjoy a vacation between surgery and Adjuvant Chemo. It is great to get out and do something which is why I prefer to go into the office to work and I'm enjoying it now because I will likely work from home while on Adjuvant.

You have to take one step at a time. You get stronger with each step. There are times when you wonder how you will make it through the next step and then you're there and you do.
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 » Tue Dec 05, 2017 1:26 pm

They are going to operate me this evening, they want to make the loop ileostomy because my tumor is blocking the passage. Open chirurgy...

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

rockhound
Posts: 56
Joined: Fri Jul 14, 2017 5:00 pm

Re: New on the forum

Postby rockhound » Tue Dec 05, 2017 2:27 pm

Atoq wrote:They are going to operate me this evening, they want to make the loop ileostomy because my tumor is blocking the passage. Open chirurgy...

All the best

Claudia


Good luck!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

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

Re: New on the forum

Postby NHMike » Tue Dec 05, 2017 2:58 pm

Atoq wrote:They are going to operate me this evening, they want to make the loop ileostomy because my tumor is blocking the passage. Open chirurgy...

All the best

Claudia


Best of luck and we’ll see you on the other side. Open surgery is no piece of cake, at least for me.
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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susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Tue Dec 05, 2017 3:41 pm

Good Luck. Hope all goes well.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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Robino1
Posts: 233
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New on the forum

Postby Robino1 » Tue Dec 05, 2017 6:07 pm

Thinking about you and praying it is a success.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

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

Re: New on the forum

Postby Atoq » Wed Dec 06, 2017 12:07 pm

I am now at the hospital with a ileostomy and a big cut, did not have much pain yet, but the needle in the troat for IV is really annoying. I have been walking in the corridor a bit, drank water and I am trying not to think that I have to go through all this again in 6-7 weeks :evil:

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 » Wed Dec 06, 2017 12:33 pm

Atoq wrote:I am now at the hospital with a ileostomy and a big cut, did not have much pain yet, but the needle in the troat for IV is really annoying. I have been walking in the corridor a bit, drank water and I am trying not to think that I have to go through all this again in 6-7 weeks :evil:

Claudia


You're doing quite well to be up and about so soon after open surgery.
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).

User avatar
susie0915
Posts: 552
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Wed Dec 06, 2017 12:55 pm

Glad you're feeling pretty good. It'll get easier. Keep walking.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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

Re: New on the forum

Postby kiwiinoz » Wed Dec 06, 2017 4:56 pm

I always try to view the setbacks as just one more step to the end goal
Recover
Get your strength back
Undergo chemo (maybe)
Ascertain what is happening with the spot on your lung
Get a plan for that
Remain NED

This is just a blip on the road to that

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 3:12 am

kiwiinoz wrote:I always try to view the setbacks as just one more step to the end goal
Recover
Get your strength back
Undergo chemo (maybe)
Ascertain what is happening with the spot on your lung
Get a plan for that
Remain NED

This is just a blip on the road to that

Kiwi


Thanks a lot for your replies. And you are right Kiwi, one step at time, it is just that this emergency surgery is an extra step and I have to repeat it in 6-7 week to remove the tumor (now they just made the ileostomy).
But I am already on my feet going and eating, so at least I will know what is awaiting me next time.

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


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