Rectal cancer (Stage 3A) diagnosed late June 2017

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Shana
Posts: 382
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Tue Jan 09, 2018 9:45 pm

Aqx99 wrote:For what it's worth, I flew down to Texas at Christmas and had no problems with the TSA over my port and pouch. I went through the body scanner and then they patted me down. I informed them that I have an ostomy pouch, so they avoided that area during their pat down. They asked me to rub my hand over my ostomy pouch, outside my clothes, then they swabbed my hands. They couldn't have cared less about my port.


Good to know! I have a flight in March but I also have Global Access and always get TSA precheck so I don't think anything should show up passing through just a metal detector but if it does I'm not going to stress over it. I'm pretty comfortable with my ostomy now and really not uptight about being touched anyway.
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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Robino1
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Location: Florida

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Robino1 » Tue Jan 09, 2018 9:54 pm

I only have a port and I've never told the TSA about it and it never sets off any alarms. I also have TSA Precheck. Love that feature! My winter boots though have to be removed. They always cause an issue. So I know to take them off when flying in the winter. LOL
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

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Shana
Posts: 382
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Tue Jan 09, 2018 10:03 pm

Robino1 wrote:I only have a port and I've never told the TSA about it and it never sets off any alarms. I also have TSA Precheck. Love that feature! My winter boots though have to be removed. They always cause an issue. So I know to take them off when flying in the winter. LOL


That's good to know too! I would probably end up lecturing TSA agent about getting screened lol! :lol:

I signed up for Global Access a couple of years ago and it was a breeze. It really made international travel easy, haven't flown since December 2016 so I'm looking forward to trip in March for Call on Congress. No international travel plans though while undergoing chemo but that's okay!
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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O Stoma Mia
Posts: 1330
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby O Stoma Mia » Wed Jan 10, 2018 3:09 am

Aqx99 wrote:For what it's worth, I flew down to Texas at Christmas and had no problems with the TSA over my port and pouch. I went through the body scanner and then they patted me down. I informed them that I have an ostomy pouch, so they avoided that area during their pat down. They asked me to rub my hand over my ostomy pouch, outside my clothes, then they swabbed my hands. They couldn't have cared less about my port.

There are some extensive travel tips published online by ostomy.org.

It should be noted that some of the security rules are changing as of January 22, 2018. What was OK in the past might not be acceptable in the future (see REAL ID Identification Requirements below).

http://www.ostomy.org/Ostomy_Travel_Tips.html

.
.

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 8:59 am

Infusion #2 starts shortly. Not looking forward to another week of cold sensitivity but I brought hand warmers, balaclava, and ski goggles.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

NHMike
Posts: 1440
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 10:09 am

The oncologist was concerned with ALK Phos of 90 (was 97 before first infusion and my normal appears to be about 57-66).

ALT is 102 before the infusion today. Normal range is 0-55. My normal appears to be 14-21.

AST is 61. Normal range is 0-39 and my normal is 16 to 21.

If the numbers go higher on the next blood tests, then he will either lower the Oxaliplatin, or we take a break for the numbers to come back down.

Anyone have any comments with similar results?
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

NHMike
Posts: 1440
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 12:59 pm

Infusion #2 is done (just finishing flushing now). I have tingling in my fingers. Not sure if it's cold sensitivity or neuropathy. I'll do some experiments with my hand warmers.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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Shana
Posts: 382
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Wed Jan 10, 2018 1:50 pm

NHMike wrote:Infusion #2 is done (just finishing flushing now). I have tingling in my fingers. Not sure if it's cold sensitivity or neuropathy. I'll do some experiments with my hand warmers.


Hope your handwarmers help. I only had two infusions of oxy, same time of year but much milder in California and it was still tingly and uncomfortable. I ran my hands under warm water if I forgot to protect them when I grabbed something out of the fridge. I drank room temp and pretty much let food sit out for 30 minutes before attempting to eat anything not already at room temp.
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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susie0915
Posts: 785
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Jan 10, 2018 1:55 pm

It may only last a day or two. I used to feel it in my arm but I was getting infusion through an IV. Any neuropathy only happened a few days after infusion then would subside for me. I noticed it more permanently about a month after I finished my last treatment. Still have tingling in my feet, will be two years in April so might be a permanent thing in my feet. Hands are much better. We will see, I just keep moving really seems to help.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1440
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 2:18 pm

I had a lot of side-effects:

Tingling in fingers, toes, calves
Frozen eye
Throat was funny and sometimes I couldn't talk

I sat in the lobby with my eyes closed for 15 minutes and then drove home. But I was very careful to leave lots of space. I was prepared to drive with my left foot if my right foot gave out. I tried to dig out some ice off the driveway but I need a much tougher tool. But I can do things but it takes more effort. I'm typing with gloves now and that helps but the touchpad doesn't work with these gloves so I hooked up a mouse.

I have some work to do and will then take a nap to see if that helps. I'm going to have a few warm drinks too.

This is pretty awful stuff.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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Shana
Posts: 382
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Wed Jan 10, 2018 2:28 pm

NHMike wrote:I had a lot of side-effects:

I have some work to do and will then take a nap to see if that helps. I'm going to have a few warm drinks too.

This is pretty awful stuff.


You summed it up, it's awful but if you can tolerate it I think it's highly effective preventing recurrence

I hope you get some rest and relief soon!
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: 1440
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 3:35 pm

I started up a bunch of YouTube videos on my laptop. The laptop normally runs cool as it's so efficient but running a bunch of videos gets the fans spinning which means that the keyboard and palmrest are warmer. I wonder if someone makes a heated keyboard. I hate typing with gloves on.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

heiders33
Posts: 235
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Wed Jan 10, 2018 4:24 pm

I always take a Lyft home from infusion because I have the same issues you do - immediate cold sensitivity, eyes shutting, can’t talk. It’s awful.
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
susie0915
Posts: 785
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Jan 10, 2018 5:00 pm

I did mine exact time of year as you Mike. Started early December and ended in April. I think living in a cold climate during winter does not help with the side effects that oxi causes. You are being pretty proactive so that will be helpful. I remember it would also take my breath away occasionally also.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1440
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Jan 10, 2018 5:23 pm

CEA rose to 1.7 before infusion today but after Xeloda this morning. It was 1.4 last time. So a wee bit of an increase which many others have talked about.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18


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