Rectal cancer (Stage 3A) diagnosed late June 2017

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

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

Postby Shana » Thu Apr 26, 2018 11:57 am

NHMike wrote:I wanted to change the bag this morning but output was steady so I'm putting it off until this afternoon. I haven't eaten for 15 hours and bag output is nil but I'm in the office and have only once changed it away from home. So it's another three or four hours for about 19 or 20 hours fasting. Bag change should be really easy.


That's a long fast but I've done about that when I was traveling and it was worth the peace of mind knowing that I wasn't going to have to deal with public restrooms.

I hope you really enjoy your next meal!
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: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Apr 26, 2018 12:23 pm

Shana wrote:
NHMike wrote:I wanted to change the bag this morning but output was steady so I'm putting it off until this afternoon. I haven't eaten for 15 hours and bag output is nil but I'm in the office and have only once changed it away from home. So it's another three or four hours for about 19 or 20 hours fasting. Bag change should be really easy.


That's a long fast but I've done about that when I was traveling and it was worth the peace of mind knowing that I wasn't going to have to deal with public restrooms.

I hope you really enjoy your next meal!


I usually do at least one full-day fast (no food or water) a year. The thing about the Xeloda, though, is that you have to eat at least every 12 hours. So I can only do this on the off-chemo week.

The longest I've done a complete fast (no food or drink) is two days - and that's very hard to do - and probably not safe for a lot of people.

My current fast is only food. I've taken an electrolyte supplement and lots of fluids.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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

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

Postby Shana » Thu Apr 26, 2018 12:27 pm

That's good and I assumed that you were taking in plenty of fluids and keeping hydrated
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: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 27, 2018 12:33 pm

The bag change took 24 minutes. Liquids kept shooting out. And I mean shooting. They would shoot out about a foot from the stoma. I guess too much fluids can be a problem too.

At least it wasn't 90 minutes.

I had a lot of problems early this year ordering pouches and I accidentally ordered the Convatec Beige bags. I was using the transparent before but a much bigger size and not the Convex solution that really works well. The next two orders were transparent bags.

The beige bags have two problems:

1) you can't see what's in the bag or where the stuff is (well, it's beige after all),
2) The plastic at the opening is a lot easier to pinch open with the transparent bag compared to the beige bag

I have six of the beige pouches left and I decided to try one of the transparent bags and things are a lot better. The plastic on the transparent bags are apparently stiffer so they open more easily with a pinch.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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

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

Postby Caat55 » Fri Apr 27, 2018 12:49 pm

I got a lot of samples when I came home. Stoma nurse ordered all the Hollister products. They are fine the first day and then begin to hand funny. I like that I can burp them easily because these vents just plug up. I have to go into the rest room almost hourly to release the gas or I have a balloon on my gut. It is the biggest issue when I am working. I am going between the Coloplast sensura mio, hollister and convatec.
I will definitely change is on Thursday morning before next Oxilaplatin, it was awful the day after, fingers didn't work.
This off chemo week I am enjoying fresh strawberries and yogurt, a smoothy and cool tea. If I hold the drink in the front of my mouth for just a bit, I can then swallow without pain. It was 85 yesterday, so nice to enjoy a cool beverage.
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

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 27, 2018 1:20 pm

That sounds nice.

My WOC nurse only trained me on Convatec and my approach is to stick with what works. I do have a decent number of Coloplast Mios but I never felt comfortable trying them out. I did send them a comment that it would be nice if they had videos showing how to apply them. I do have an emergency kit with the Coloplast products in them as they are one piece and look simpler to use in a pinch. One of the samples kit I got had a nice little bag to hold two pouches, wafers, wipes, spray, scissors and a mirror (mirror and scissors were included). I have never had to use the emergency kit but it gives me some piece of mind having it around.

This is my week off as well and I'm enjoying the cold stuff, particularly water. Nowhere near 85 here and we might have to wait until July for temps like that.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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

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

Postby Caat55 » Fri Apr 27, 2018 8:56 pm

NHMike wrote:That sounds nice.

My WOC nurse only trained me on Convatec and my approach is to stick with what works. I do have a decent number of Coloplast Mios but I never felt comfortable trying them out. I did send them a comment that it would be nice if they had videos showing how to apply them. I do have an emergency kit with the Coloplast products in them as they are one piece and look simpler to use in a pinch. One of the samples kit I got had a nice little bag to hold two pouches, wafers, wipes, spray, scissors and a mirror (mirror and scissors were included). I have never had to use the emergency kit but it gives me some piece of mind having it around.
at.


The Minos have a gray cover that dries quickly. I have a few sample one pieces that I am using. They work well when my fingers are challenged as the stick to the wafer just peal and press rather than snapping on. I found some You tube videos that I used when I had to change bag solo first time the day after coming home. See what you can find. The cover is loose so you can see both top and bottom but only when you want to.
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
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Apr 30, 2018 6:45 pm

Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Apr 30, 2018 6:55 pm

I remember dreading when infusion time came. Just when you start to feel okay and you have to go back. Hope everything goes well for you Wednesday. Only a couple more to go.
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

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

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

Postby Atoq » Tue May 01, 2018 2:30 am

How is it going with the training? I ran 4 x4 minutes yesterday with an app that is calculating your VO2 max (max oxygen uptake). I had 59 before diagnosis and I am now back to 52 last week and 53 this week. Slowly coming back. It is so nice to run because, even with the bag and lack of training, it feels so «normal».

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

Postby Caat55 » Tue May 01, 2018 9:21 am

NHMike wrote:Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.


I go back on Thursday, Sure has been nice to feel normal for a bit. Chewing is my bad, have to concentrate on eating, slowing down especially as I eat so many veggies and they need extra chewing for short track. Still anemic but found some iron pills yesterday without folate which I am going to try.

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
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 01, 2018 11:44 am

Atoq wrote:How is it going with the training? I ran 4 x4 minutes yesterday with an app that is calculating your VO2 max (max oxygen uptake). I had 59 before diagnosis and I am now back to 52 last week and 53 this week. Slowly coming back. It is so nice to run because, even with the bag and lack of training, it feels so «normal».

Claudia


I was rather tired for about 2.5 weeks. It was the chemo and I think that I had a cold or worse the last week of that - I did sleep a lot.

So 1/2 week of recovery is almost over and I've mostly done floor work and Yoga and some weights. Work is heavy too.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 01, 2018 11:46 am

Caat55 wrote:
NHMike wrote:Two days before infusion and I'm generally feeling better though hands and feet are still present but the fatigue that I had for 2.5 weeks is a lot better.

One oddball thing today. I had to remove a noodle that was four inches in the bag. It wouldn't come out so I pinched it in the bag and the long part came out but some might have still been stuck in the stoma. I looked around for it later (transparent pouches area great) and couldn't find it so I hope that it's gone. That's why I should chew better.

I'm not looking forward to Oxaliplatin or Xeloda right now and we'll see how things go on Wednesday.


I go back on Thursday, Sure has been nice to feel normal for a bit. Chewing is my bad, have to concentrate on eating, slowing down especially as I eat so many veggies and they need extra chewing for short track. Still anemic but found some iron pills yesterday without folate which I am going to try.

S


It's definitely a grind. This cycle was lower in terms of intensity of the side-effects but more work and other responsibilities took time away from me.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 01, 2018 5:11 pm

Got my labwork back. No wonder I'm so tired. H&H had a pretty big drop (they were already lower than normal). Platelets were down. I'm wondering if we continue tomorrow or not. If we do, I'll look to Xeloda only, maybe dropping it to 3,000 mg from 3,500 mg. I probably won't get the CEA until tomorrow. Some things were rising which shouldn't be rising (they're above the normal range).
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 02, 2018 9:30 am

One week delay. Doctor was wearing a mask as he has a cold. He said that a lot of staff have it too. It's supposed to be in the mid-80s here today so that will be nice if I can get outside. Stuff is piling up at work. CEA was flat at 2.8 which is a relief.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal


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