Rectal cancer (Stage 3A) diagnosed late June 2017

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mpbser
Posts: 684
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Dec 19, 2018 8:51 am

What a helpful response, MissMolly/karen. My husband had paralytic illius that mimicked small bowel obstruction after his colectomy. Thankfully, no scarring or adhesion issues were involved. We were not given recovery advice like this, so thank you. If/when my husband has future surgeries, this information will come in handy in case he has major bowl slowdown.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7??

NHMike
Posts: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Dec 19, 2018 9:19 am

MissMolly wrote:Mike:
Glad to hear that the worst of the SBO is behind you and that you are back at home. Home is where true healing begins.

I have had a few open surgeries . . . And a few SBOs . . . One requiring surgical lysis of adhesions and several that decompressed with an NG tube and bowel rest.

My own opinion is that fate and chance play a large role in the incidence of SBOs. From my surgeon: Most SBOs occur within the first 12-16 months following abdominal surgery. The incidence reduces markedly after 12-16 months as scar tissue/adhesions mature and soften.

Following an acute SBO, as you have had, be cognizant that the segment of intestine above the “kink” or narrowing will remain inflamed and dilated and swollen for a few weeks (10 days-2 weeks). There can also be associated infra-abdominal inflammation (called stranding) due to the release of inflammatory markers and endocrine effects to mediate the stress response. Focus on hydration. Eat small portion sizes, graze. Soft, easy to digest foods (creamed soups, chicken pot pie, steamed carrot medallions).

Hot showers can relax abdominal and back tightened muscles and ease intestinal distress. Relax with a buckwheat microwave warm pack.

Here, too, is an importune time to use a titrated dose of an osmotic laxative (Miralax, Milk of Magnesia) or magnesium supplement (500 mg capsule or powder of magnesium citrate).
The key is to somewhat liquify the consistency of digested food material so that it can pass through swollen or restricted areas with greater ease as you heal from the after effects of the SBO.

People can develop acute constipation with retained food proximal to the area of SBO and this can mimic symptoms of the original SBO - this due to irregular motility, stop and start contractability of the traumatized small intestine coupled with swelling/effusion of the intestinal lumen. All to say . . . Your small intestine has been traumatized and will be in a state of flux and healing for 7-10 days. Keep to soft/easy to digest foods and small portion sizes, focus on hydration more than solid food intake, consider use of an osmotic laxative, move about and walk as you are comfortable to encourage the intestines to move and hum along in synch.

Welcome to the Adhesion’s Club. The first “attack” is always frightening simply because it’s onset is abrupt, intense, and unexpected. The pain is truly enough to bring you to your knees.

Fingers crossed, you may never experience another SBO. But if you do, you’ll have this experience to draw upon to recognize symptoms and to guide you through to the other side.
Karen


Thank-you for a detailed response from experience. The doctors and nurses didn't have this stuff - the discharge papers were fairly light on recommendations because the folks that write these things haven't experienced them. I showed your post to my wife and so she'll have some guidelines for my diet going for a couple of weeks.
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: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Dec 21, 2018 8:19 pm

I haven't had a BM since Monday night which has had me anxious this week. But water has gone through and there's been lots of gas. So that had me more hopeful. I didn't really eat much since Tuesday evening so hopefully things squeeze out. Nothing like the fear of an SBO to keep you from eating a lot.
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: 579
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Dec 22, 2018 12:24 pm

Mike,
Are you still in pain? Any success with eating yet? This journey is rough.
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
CT NED 9/2018

NHMike
Posts: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Dec 22, 2018 1:01 pm

I had a very large BM last night so there's a great deal of mental relief. I feel back to normal today which is saying something. I expect bowels to be irregular for a week and I'm taking it easy on the GI system for a week before going back to a more normal diet.

I have not had what I would consider pain but lots of funny feelings. I was passing gas after drinking water which was strange and there was no odor to it. I passed gas after eating small amounts of food as well. The odor has come back though there isn't gas after water anymore. I'm not sure how the air got in unless it was sucked in to the GI system from the water going down. Or gas gets trapped by waste so it comes out in spurts along with waste.

At any rate, an overall painful experience and I'm working on getting back to normal. Normal is doing weight training, running, etc. I was not sure if I should run as I was worried about damaging something and I kept weights light. So back to some slow running to see how that goes.
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: 601
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sat Dec 22, 2018 8:21 pm

Mike:
Recovery from a partial small bowel obstructions does take time. It is not as simplistic as one minute the small bowel is kinked and the next minute the small bowel is wide open for traffic as usual.

You can expect more of a hiccup-type of recovery over the next week to 10 days. That is, overall lessening of intestinal unease but with occasional bouts of distension, gas, waves of pain, and disrupted intestinal motility/ movement. It is sort of analogous to a car that has a blinking warning light and the car is sputtering as it lurches toward a service station.

Do keep a focus on hydration. Hydration and more hydration. Hydration will help flush the intestinal tract and keep digested food material from stagnating as intestine motility waxes and wanes.

Walking, yoga, Pilates, and light weighths as exercise is promoted and A-OK. I would discourage you from running. Running places a lot of gostling-around of internal organs and can be more traumatic then soothing for an intestinal tract her is already confused as to what has happened with the obstruction.

Hot showers, hot soaking bath can be ever so helpful to ease muscles that are contracting and guarding.

Your poop likely is more odoforous due to several factors. During the partial obstruction, food material becomes backed-up in quantity even before the obstruction gives its acute notice. There is usually quite a bit of retained food material. This food material “rots” in your GI tract much as food scraps placed down a sink but where it is forgotten to turn on the food disposal.

A partial obstruction also disrupts the normal bacterial flora that makes its home in the digestive tract. The bacterial flora are alive and have cellular metabolic byproducts. The odor of your output is unpleasant owing to retained gas and cellular debris from the bacterial flora.

All of the body-stress can add up. Taking a quality probiotic to repopulate the small bowel can be advantageous. VSL-3 is a medical grade probiotic that is highly regarded by colon surgeons and gastroenterologist. VSL-3 is the probiotic usually reserved for those with severe Chron’s or ulcerative colitis and was available by prescription only until last year. VSL-3 is now available without a prescription. It can be sourced through a pharmacy on request and I understand that it is also available through Amazon. I use VSL-3 myself with good effect. So switching your current probiotic with VSL-3 for a month or 2 might be worth considering if odorous and sticky poop remains.

Anyway . . . All to say, a partial bowel obstruction is an insult to the body. It does take time . . . and more time . . . To feel like yourself again.
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: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 27, 2018 6:17 pm

I went without a BM for about 3 1/2 days and then it started slowly and then a day like today where it's about 15 hours of clustering. I must say that it's nice not to have to deal with bathroom stuff but not going for over two days gives me anxiety over a blockage. Water and gas were getting passed and that provides some reassurance but there is some relief when it happens. So I'm taking it easy this week, both with food and impact-type exercises.

I think that left-side sleeping does help a lot 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; 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
Posts: 899
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 » Fri Dec 28, 2018 9:20 am

NHMike wrote:I went without a BM for about 3 1/2 days and then it started slowly and then a day like today where it's about 15 hours of clustering. I must say that it's nice not to have to deal with bathroom stuff but not going for over two days gives me anxiety over a blockage. Water and gas were getting passed and that provides some reassurance but there is some relief when it happens. So I'm taking it easy this week, both with food and impact-type exercises.

I think that left-side sleeping does help a lot too.


I understand Mike. Once you experience a blockage, you are very aware of everything going on and wait for gas and stool. It has been over 3 years since I had mine, but I still worry about it. It is not a good experience.
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 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
11/18 CEA .6

mpbser
Posts: 684
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Dec 28, 2018 10:13 am

I don't know if anyone mentioned it, but a hot compress (I use a rice-filled heating pad) underneath the lower back while lying down with a pillow under the knees can really help relax all the abdominal muscles that impact the intestines. It will help release the gas and stuff.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0, 2.9, 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows met
Resection & HAI Mar 7??

NHMike
Posts: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Dec 30, 2018 12:10 pm

Things are more or less back to normal. Friday was a day of clustering and I had a moderate amount of clustering yesterday. I had a little this morning but I didn't eat that much yesterday which helps. I have a meeting tomorrow morning so I'm doing a 36 hour fast before it.

The effect of the SBO was that I usually went to the bathroom all at once which was actually more efficient. I didn't really have any more pain though I kept an eye on things and had a lot of fluids and didn't run, which was difficult. I didn't take Miralax but will probably take some today to try to completely empty out before tomorrow.

Is it safe to take Imodium or should I wait a while on 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; 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

Rikimaroo
Posts: 160
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Tue Jan 01, 2019 12:01 pm

Wouldn't a blockage mean pain, not going for 3 days doesn't necessarily mean there is blockage? I mean there have been times where I don't go for the entire day, but that is because if I see any diarrhea I take two Imodiums right away. Overall things are getting better. Can't stand the unpredictability of going though :(
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4

NHMike
Posts: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jan 02, 2019 6:30 am

Rikimaroo wrote:Wouldn't a blockage mean pain, not going for 3 days doesn't necessarily mean there is blockage? I mean there have been times where I don't go for the entire day, but that is because if I see any diarrhea I take two Imodiums right away. Overall things are getting better. Can't stand the unpredictability of going though :(


The blockage was very painful but it only lasted about 7 hours. I didn't have a blockage afterwards but I was terrified of having another so I greatly slowed my eating. It was a relief when things started coming out though. It's the fear of the blockage that changes behavior.

I drove for 11 hours yesterday and had a clustering day but managed. I mapped out all of the rest stops and had plenty of supplies. I'll fast the day before driving back. I wasn't able to do this as I fasted for a meeting on Monday.
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

User avatar
Atoq
Posts: 329
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Thu Jan 03, 2019 2:40 am

I am glad to hear that things are going well now.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
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 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan, ok
12.09.18, 06.02.19 scope, ok. CEA 1.6
19.11.18 clear coloscopy

NHMike
Posts: 1887
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jan 12, 2019 9:24 pm

Blockage last night. But I was able to manage it without going to the hospital. Very little pain though moderate discomfort. I weigh myself once or twice a day and a blockage is indicated if my weight is a lot higher than normal. Too much stress in life means that I'm not taking good care of myself. My work has to be finished by tomorrow and things are looking good - I have some work to do tonight and a lot of work tomorrow.
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

Eleda
Posts: 224
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Sun Jan 13, 2019 5:12 am

Sorry to was Ur still struggling Mike, I've been following ur post but with my pending reversal I had nothing to add that would be helpful so haven't posted, .

The one thing I will add to everyones advice is Ur stress leaves seem to be really high ( work )
I believe stress is a massive contributor to cancer, if not the " main one "

I'm sure with your job it's quite difficult to avoid but if at all possible try to reduce it (easier said than done I know)
I'm as bad myself but I think it's vital

No one knows the reasons for many cancers but when I look at vegans and vegetarians hippies( :lol: lol ) living such clean lifestyle it has to make u wonder,,,?????
Hope Ur b back to Ur old self soon

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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