Rectal cancer (Stage 3A) diagnosed late June 2017

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

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

Postby NHMike » Fri Aug 03, 2018 5:23 pm

A few things that I've figured out at home: I sleep on the right side of the bed and can't get out by rolling. So I found that I can roll onto my right into a doggie position and then back off the bed. It might be that getting out on the left wouldn't be a problem but we're not set up that way.

Getting into the car is a problem too because of having to swing the legs in without any good leverage. What I found that works is to push the left leg off the lip of the door near the floor to rotate in.

Don't cough while you're recovering from an illeostomy takedown. It really hurts.
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

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Aug 03, 2018 5:38 pm

So it sounds like similar issues to the initial surgery? Any abdominal work is a challenge? Is there a high risk of hernia?
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: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 03, 2018 6:26 pm

Caat55 wrote:So it sounds like similar issues to the initial surgery? Any abdominal work is a challenge? Is there a high risk of hernia?
S


I’d say that it’s a bit harder as the wound is open. The discharge instructions specifically say no situps or other abdominal work and I won’t do any. I was able to do abs work 10 days after the LAR but I don’t think that will be the case this time.

There is absolutely the risk of hernia. I’m basically just walking for exercise though i have done Warrior 1, 2 and Tree Pose. Dealing with the bathroom stuff is still a bit time-consuming. I could do isolation work but the port removal means the i probably shouldn’t do any upper body stuff.

CEA test coming up next week along with normal labs. I'm going to try to get a pass on the normal labs as I had them before and after surgery.
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: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 04, 2018 8:07 pm

It's been rough Friday night and today. I probably ate too much and stuff came out for five hours last night and six today so it was a lot of time in the bathroom and several accidents. Though they were all contained in the disposable underwear. The pieces are bigger and well-formed sometimes and granular in others but everything or 99% appears to be out now. Basically I haven't eaten anything for about 24 hours so that I could get some decent rest from the bathroom.

I have started to work harder to hold things in but I think that may take a while. I would guess that the large intestine will continue to improve on taking more water out of waste so that things aren't quite as slippery to escape and I do need to work on pelvic muscles without working on abs. So it definitely wasn't fun yesterday nor today. I need to go through some of the reversal threads to see how long it takes to get control of the bigger pieces. BTW, I understand why people get colostomies if they can't control things.

I will definitely need to buy more supplies as I went through a lot of stuff in the past day. Fortunately I am fully able to eat very little for at least several days. I would just like about twelve hours for my rear end to heal from overuse. I would guess that many have been here. Basically it is like what I experienced at the hospital but it wasn't liquid output so I do have some more control but not enough yet.
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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CRguy
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Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby CRguy » Sat Aug 04, 2018 10:52 pm

Hey buddy I will jump in here as maybe your "future self"
BTDT since 2007

even now, about every 10-14 days I will get a "clean out" day
which is major clustering and soft formed to almost diarrhea
THEN after "cleaning" .... 2-3 days of normal / no problem BMs
then a shift to slightly more of a "CLUSTER" effect
good for a while and then ... wait for it ... clean out :shock: :oops: :twisted:

definitely related to diet, activity etc..... BUTT still almost always about 10-14 days :twisted:
JME

I can handle it
I deal with it

IT GETS BETTER

one step at a time

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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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 » Sun Aug 05, 2018 8:01 am

It does take time Mike. It will get better and will probably take quite awhile before you figure out what will work for you. Some can control with diet alone, others take fiber to help bulk stool along with some occasional Imodium or lomotil. After a short period I didn't have problems with loose stool much, but more with frequent small bowel movements. After trying many things, I went to the bowel control clinic at University of Michigan. The GI did do a couple tests, recommended pelvic floor therapy, meeting with a dietician, and tap water enemas. I do a tap water enema every morning. It takes me about 30 minutes and it gives me 24 hrs until the next morning when I do again. You are still very early in the process, so you may be able to control with fiber and diet like many. Just know there are things you can do to make your bowel movements more predictable and manageable. I was 15 months from reversal and even though did not have issues with incontinence, the frequency and unpredictable nature of my bm's were very disruptive. The enemas allowed me to gain some weight back because I'm not afraid to eat, relieved irritation to my bottom and the stress and worry of having an episode if I left the house. Also, I do them when I want so I control when I use the restroom. Doctors are starting to be more receptive to patients symptoms after reversal surgery and many will recommend daily enemas. It is quite easy to administer and 30 minutes in the bathroom is so much better than running back and forth 10-20 times a day. Just give yourself time to see where you are at in the next few months and what will work for you. The first thing I'm sure your surgeon will recommend is some type of fiber like Metamucil.
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: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 05, 2018 8:17 am

I slept pretty well last night (7 hours) and my rear end felt better this morning but I still had several bowel movements, only on involuntarily.

I'm currently using disposable underwear and was using toilet paper as a pad within it. This approach has the advantage of the toilet paper being flush-able and easily replaced. The disadvantage is that you have to be moderately careful setting it up. I have medium and large pads as well and these work fine but I need to carry a plastic bag for disposal. I plan to pick up more adult underwear and pads today.

I haven't eaten for about 33 hours now though I'm drinking water and nuun. I will probably have some protein later today (eggs). The longest I've done a complete fast is two days (no food, water, liquids, anything). I've done the kinds of fasts with no food for a day, then 200 calories the next day, 400 the next day, 600 the next day, 800 the next day and then back to normal. I drank some calories when I did that.

I change the dressing on the wound twice a day. The instructions indicated once a day but I'd prefer to keep it clean. The amount and area of blood and pus is decreasing and it looks like the skin is closing though it looks absolutely horrible. It's a hole with red on the inside, some blood and blackened skin on the outside. The doctor said that care is just changing the wound. The nurse suggested a saline spray when changing the wound. I assume that the pus is the body's natural way of of preventing infection.

I am dropping the Tylenol dosage to one tablet. I'm taking two doses a day though I am debating dropping it altogether as pain is minimal. I do like the dulling effect that it has on neuropathy.

This time feels more challenging that the previous surgery but I took short-term disability then. It would really help to know that things get a lot better soon or else I'm going to lose a lot of weight this month.

I've dropped my walking down to about 10K/day.
Last edited by NHMike on Sun Aug 05, 2018 8:28 am, edited 1 time in total.
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: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 05, 2018 8:19 am

CRguy wrote:Hey buddy I will jump in here as maybe your "future self"
BTDT since 2007

even now, about every 10-14 days I will get a "clean out" day
which is major clustering and soft formed to almost diarrhea
THEN after "cleaning" .... 2-3 days of normal / no problem BMs
then a shift to slightly more of a "CLUSTER" effect
good for a while and then ... wait for it ... clean out :shock: :oops: :twisted:

definitely related to diet, activity etc..... BUTT still almost always about 10-14 days :twisted:
JME

I can handle it
I deal with it

IT GETS BETTER

one step at a time

Harmony
CRguy


I am going to need to put together a diary so that I can track this stuff and look for patterns. I have a diary for a bunch of things (it's set up as an iCloud Notes table but it might be more useful as a spreadsheet if I need to collect more data). Data Mining bowels.
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

Foreveryoung
Posts: 15
Joined: Thu Jun 22, 2017 9:39 am

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

Postby Foreveryoung » Sun Aug 05, 2018 8:53 am

NHMike wrote:
Atoq wrote:So cool! Only a week to go, good luck with this last surgery!

Atoq


It's hard to describe the feelings. Sometimes happy, sometimes odd, sometimes worried.

I have all of these Ostomy Supplies as well and I've been looking around the web to see what to do with them. Life with cancer changes you so much and then you get used to it and then you're fixed. Hopefully. I think that I'll still require a few months of recovery.

I was rather amazed at how fast you recovered as that isn't the norm from what I can tell.



Mike - What did you do with those supplies? I just had my reversal and would rather donate the ostomy supplies than throw out.
33 y/o M DX June 2017 (RC lower)
Rectal adenocarcinoma (T3N0M0)
CAPOX - 3 months (OX chemo every three weeks, followed by two weeks daily CAP pills)
chemoRT - 25 daily sessions
LAR robotic with temp loop ileo - April 4, 2018
0/23 Nodes
Illeostomy reversal - July 25, 2018
8.0 cm from AV
4.3 cm from sphincter complex
CEA [2.5 on 8/17; 3.7 on 3/18; 2.8 on 6/18]

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 05, 2018 10:49 am

Foreveryoung wrote:Mike - What did you do with those supplies? I just had my reversal and would rather donate the ostomy supplies than throw out.


I still have them. It's taking me quite a bit of effort just dealing with the aftermath of the reversal. I probably should have taken more time off.
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: 1557
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 05, 2018 7:36 pm

We were driving to Costco. About three minutes from home, I had an accident. Went to the YMCA as it's on the way and has a nice handicapped bathroom with sink and cleaned up. Was all set to leave and another accident. Cleaned that up. Left the YMCA and started driving. Another accident. I just drove home and cleaned up and took a shower and a long nap. I was rather amazed as I hadn't eaten anything for about 40 hours. I had an accident in bed, took another shower and cleaned up and felt better so we drove to CVS (nearby) and I picked up two large bags of adult underwear as they were on sale. It turns out that they're the same price as Depends from Costco. So I'm more comfortable because I have a large supply of them.

I was feeling better so we went to Costco and came back home where I had another accident but I can clean up at home. So I really wanted to cry a couple of times today.

I may be running a fever as my forehead feels warmer than others here. I should go take my temperature. I may have picked up a stomach bug and it would be a really bad time to do that given that I can't control loose stools at this time. I am going to go back to taking the Tylenol to maybe control my temperature (it doesn't feel extreme).

The wound is doing nicely. The area of the blood deposits on the gauze is shrinking as is the pus ring around the blood. Anyone have a rough idea as to how long it took for the hole to close up?

I had two eggs and some hashed browns this evening so just a few hundred calories in the past two days.

So I definitely don't have control and I want to work on getting it. But there may be something in the way. I took some long naps later this afternoon and at least I can do that. Hopefully things are better tomorrow. For those that acquired control, how long did it take?
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

mobrouser
Posts: 45
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Location: Ontario

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

Postby mobrouser » Sun Aug 05, 2018 8:13 pm

Sorry to hear all your difficulties post reversal.

If your body is not averse to them bananas and rice would be my starting point for solid foods.
Work proteins in slowly once your bm's are more solid. I would avoid anything cooked in oil ie. hash browns until you have more control too.

It is such a fine line finding foods that are not going to give issues in either direction -too soft or too hard- and is almost like introducing new foods to a baby. Do it tablespoons at a time to see what the reaction will be.
Hope you have better days in the coming week.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CT scan Aug 8 2018 - Clear
CEA - 01/15/18 - 2.8 07/29/18 - 5.3 Waiting for PET scan to be scheduled

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O Stoma Mia
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Location: Traveling abroad

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

Postby O Stoma Mia » Mon Aug 06, 2018 1:26 am

NHMike wrote:...I am going to need to put together a diary so that I can track this stuff and look for patterns...

Food, toilet, and exercise log
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50454&p=387056#p387056

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ocstacy
Posts: 261
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Facebook Username: stacy

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

Postby ocstacy » Mon Aug 06, 2018 3:52 am

Just give yourself time to see where you are at in the next few months and what will work for you. The first thing I'm sure your surgeon will recommend is some type of fiber like Metamucil.


My mother is almost two weeks post op from reversal. She stopped the Metamucil yesterday due to soreness down there. Now she has diarrhea and is taking Imoddium. This one nurse shared a secret with me. She said sometimes when you do the combo of stool softener and Miralax, you get a happy medium. She spends most of her time in the bathroom poor thing and she says her rear hurts bad. These are the two creams that she is using. 1.Captemonsine (hope I spelled that right) than she said it wasn't working anymore so than nurse suggested 2.) Aquaphor. I sure hope that she build strength as before she could actually travel to the grocery store or maybe shop for maybe 2 hours. Now, she won't leave the home at all, not even to Target. The dr. said as long as she is taking the nerve med, she cannot drive. Thank goodness I live right next door, I can care for her. It's hard being in the middle. My mom is healing much better than last year. She never took the narcotics and she is healing much better. I will keep ya posted. <3
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileostomy reversal 07/24/18
First BM after reversal 07/25/18
Me: 1st Colonoscopy age 38. 08/17 Benign polp.

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Mon Aug 06, 2018 6:48 am

NHMike wrote:Anyone have a rough idea as to how long it took for the hole to close up?


If I recall correctly, it took me about four weeks for the hole to close up completely. Now I have a dent in abomen that looks a little ridiculous, but I think that's due to where the ileostomy was located.

NHMike wrote:For those that acquired control, how long did it take?


It didn't take me too long to gain control, maybe a couple of weeks. However, I think my tumor was higher up than yours, which may make a difference. I'm sorry you're having these issues. I agree with mobrouser about what diet to try right now.
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 inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4


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