Rectal cancer (Stage 3A) diagnosed late June 2017

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Fri Jul 06, 2018 4:29 pm

NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 06, 2018 5:35 pm

juliej wrote:
NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej


I'm not sure what constitutes heavy exercise. I'm doing a lot of low-intensity cardio - basically walking.
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; 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, 2/12 1.2
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
2/19: Clean CT

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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 » Sat Jul 07, 2018 8:47 am

Congrats on the CT scan. That is great news!
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

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

Postby retiredteacher » Sat Jul 07, 2018 8:43 pm

Congrats Mike!
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jul 08, 2018 9:09 am

I got a taste of the reversal today.

I haven’t been emptying the bag at night for a week and it had increased the amount of mucous. Last night I had a lot of beans and ate later than I should. I did wake up a few times to the bag being full with gas so I just burped it and went back to sleep.

This morning I spent a lot of time on the toilet pooping out mostly soupy stuff but a few harder pieces. One time there was some blood too. I’ve been doing this for about six hours and it’s a real pain. I haven’t actually spent much time on a toilet seat since last year so things are different. I’ll go back to waking up at night to empty the bag.

I suspect the blood may be tugging on the stitches or irritation of the large intestine as it hasn’t been used for a long time. My wife found me a large pad which I will use to go out.

This is some journey!

I may be NED but it doesn’t feel like being back to normal.
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; 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, 2/12 1.2
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
2/19: Clean CT

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Jul 08, 2018 9:48 am

I am eating beans but not a lot, only on portion :D anyway I think it is a very good thing if you get rid of mucus and other stuff that accumulated over several months in your colon. I read that a water enema a week was advised to get the colon used to adsorbe water again before reversal.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jul 08, 2018 10:17 am

Atoq wrote:I am eating beans but not a lot, only on portion :D anyway I think it is a very good thing if you get rid of mucus and other stuff that accumulated over several months in your colon. I read that a water enema a week was advised to get the colon used to adsorbe water again before reversal.

Claudia


The problem with the beans was in that they filled up the bag with gas which forced the waste into the large intestines. I hadn't passed gas in a long time (except through the bag), so it was a feeling that I hadn't had since last year. The sitting on the toilet stuff actually has me quite tired out today and reluctant to go out of the house. But we need to do grocery shopping and we did have plans to do some traveling. One thing that bothered me was my limited ability to prevent stuff from coming out.

I have a pad on right now and that should hold things up reasonably well. The amounts coming out aren't large so the pad should work if there's a bathroom nearby.

This stuff reminds me of the chemo/radiation days.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jul 08, 2018 5:57 pm

Things were a lot better about eight hours after this started. My daughter looked at a picture of the stuff and she said that it looked like blood and some mucous. I went out twice and there was some mucous output and a slight tinge of blood the first time and a little waste but mostly mucous the second time. So it looks like most of it is done. But I'll wear a large pad for a while, probably overnight and not eat anything before bed and wake up to empty the bag overnight.

My daughter went over the kinds of pads that are available that women use and she said that there are overnight pads with a lot of coverage. I may have her buy a package or two for me or may order some on Amazon. I have had this happen before but there was much less waste to deal with and it wasn't for a long time. I had hoped to not have to wake up at night but that's not the case. Hopefully it will be one of these days.

We did have plans to go to Maine but they were scuttled as I was uneasy being far away from a bathroom for so long.
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; 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, 2/12 1.2
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
2/19: Clean CT

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Jul 08, 2018 7:22 pm

Mike:
I can appreciate your heightened concern on visualizing tinges of blood from your unexpected anal discharge, but my sense is that you can ease your concern/worry.

Your distal large intestine and remaining rectum post-resection have been “off-line” and resting for several months. The lack of fecal material regularly passing through the resting intestine often causes mild to moderate inflammation (colitis) due to the lack of short-chain fatty acids. The surface capillaries are more fragile and prone to bleeding.

The meal of beans and legumes likely resulted in increased gas and pressure at the site of your stoma and attached pouch, which would have had the effect of migrating some of the stoma output into the adjacent mucus stoma . . . And down the hatch through the resting portion of large intestine. The process of passing mucus poops” and accumulated cellular debris can be unpleasant and taxing and messy.

Sitting on the toilet, as you are, is a good strategy. Putting your feet up on a small block/bench can also help in passing the material by naturally opening the lower rectum and anus (squatty potty). You can also use a child’s nasal syringe/irrigator to irrigate the lower rectum and facilitate loosening of accumulated waste material/cellular debris. I do this while showering. Managing mucus poops is a frequent topic of discussion on the United Ostomy of America forum, and a frequent source of frustration, confusion (what in the heck is this?), and angst.

I have a permanent end ileostomy with a remaining 1/2 inch rectal cuff. I am at emotional peace with the ileostomy itself but abhor and detest the occasional passing of “mucus poops.” The sloughed material is unsightly, slimy and smelly.

I use a protective liner called “Butterfly Pads.” These pads are specifically designed to contain anal discharge and have been an emotional life-saver. “Butterfly Pads” are available on Amazon.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jul 08, 2018 10:27 pm

Thanks for the details Karen. I had guessed either the stitches or irritation.

I'm using some rather large pads that my daughter bought from Costco but doesn't really like so she told me that there are quite a few remaining. Hopefully I won't need anymore until the reversal.

It wasn't a fun day but at least I get a little feeling for what things will be like on the other side. And then hopefully things get better over time.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jul 09, 2018 9:48 am

Port flush this morning. Very easy and quick. Yes, you do get stabbed but it's one of the easier things in treatment.
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; 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, 2/12 1.2
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
2/19: Clean CT

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Tue Jul 10, 2018 5:18 pm

juliej wrote:
NHMike wrote:My fitness center manager speculated that all of the exercise is causing the inflammation which is a possibility.

I'm a fitness buff too and was told during treatment not to do heavy exercise shortly before a CT scan due to possible false readings in both CEA and blood test results. There's a strong possibility that is what's going on with you. I'd hold off before the next set of labs. Glad to hear the CT scan was clear!

Juliej


Is this really true for CT Scan as well?
I can see it causing inflammation in the muscles/joint tissue causing slight CEA increase. I'm hoping that's why mine has been elevated slightly, but how could it effect CT scan?

I'd really like to know, because I have a mountain climb/backpack trip scheduled for July 21/22 and a CT scan scheduled for July 24.
Might have to consult my ONC, but would like feedback. thx.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Jul 10, 2018 6:44 pm

I found a study indicating that CEA went down with exercise but I doubt that they were talking about the exercise levels that some do here. All of the walking I do does cause some inflammation - I get a little chondromalacia (knee-tracking issues) from time to time and it results in losing cartilage in under the kneecap. My toes are a wreck too. But I don't know if it's causing these levels. If it keeps going up, then I'll be worried.

Of course one way to prove that it's the exercise is to stop doing it - but it's hard for me to not exercise.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 12, 2018 6:44 am

I noticed a leak in my bag two days ago - slow but annoying. It appears to be due to a misaligned Velcro strip not sealing the bottom of the bag all of the way. I put some Hypafix tape to try to contain it but I think that I'm just going to change it now. The annoying thing is that the next bag has the same issue. So I checked the rest of the box and they all have it. I imagine the other box has the problem as well. That's the problem with modern manufacturing. If there's an error, then they'll all have the same error. It only started happening on the sixth day so I'll have to change the bag more frequently.
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; 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, 2/12 1.2
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
2/19: Clean CT

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Jul 12, 2018 1:34 pm

NHMike wrote:I noticed a leak in my bag two days ago - slow but annoying. It appears to be due to a misaligned Velcro strip not sealing the bottom of the bag all of the way. I put some Hypafix tape to try to contain it but I think that I'm just going to change it now. The annoying thing is that the next bag has the same issue. So I checked the rest of the box and they all have it. I imagine the other box has the problem as well. That's the problem with modern manufacturing. If there's an error, then they'll all have the same error. It only started happening on the sixth day so I'll have to change the bag more frequently.


I had a similar issue, my vendor sent a new box free of charge. I have gotten quick with changing appliance, 5 minutes. I use a wax ring and stoma powder maybe that's why it is so quick. So much easier to change then to risk a problem for me anyway, I am too active for risks.

S
Do at 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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20


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