Rectal cancer (Stage 3A) diagnosed late June 2017

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Atoq
Posts: 279
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Mon Aug 06, 2018 8:55 am

It took four weeks for me as well to close the wound and I did not have problems with control from the start, although frequency was higher than normal. Maybe not having adjuvant chemo made the healing easier. My tumor was 5 cm from anal verge. Now I am hiking in the Alps (Dolomiti) and have no problems.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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

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

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

Postby NHMike » Mon Aug 06, 2018 9:37 am

Atoq wrote:It took four weeks for me as well to close the wound and I did not have problems with control from the start, although frequency was higher than normal. Maybe not having adjuvant chemo made the healing easier. My tumor was 5 cm from anal verge. Now I am hiking in the Alps (Dolomiti) and have no problems.

Claudia


I don't think that having Adjuvant Chemo has made it any harder for me right now outside of the large intestine going to sleep. I do think that the stomach bug that I apparently have is a bad combination with the reversal. My tumor was also 5 cm but everyone is different.

I did work on control last night through muscles and that can delay things for short periods of time.

My wife is trying to get me to eat something and I've been avoiding eating anything so that I don't have to make more trips to the bathroom.

I'm going to send a note to the Doctor asking about using Pepto Bismol. It coats the intestines, kills bacteria like E-Coli, reduces inflammation and reduces gastric secretions (these are murder on the skin). My son suggested this as he had the same thing and it cleared it up in a few hours.
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 » Mon Aug 06, 2018 9:41 am

susie0915 wrote: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.


She or one of her doctors said that she would suggest it if things were difficult in the post-op meeting. At the moment, I think that it's going to be challenging getting to the meeting unless I get things under control.
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 » Mon Aug 06, 2018 10:36 am

heiders33 wrote: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.

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.


Thanks. The hole is closing up nicely one week out but I will order additional supplies (gauze and paper tape) to keep up with the bandage changing. It really looks horrible now but it's usually covered with a shirt.
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 » Mon Aug 06, 2018 12:01 pm

heiders33 wrote:
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.


I am worried about having a dent in the abdomen, do you know if packing the wound tighter can help prevent this?

Also can anyone recommend lotions/creams/oils to apply on the wounds from the LAR? My surgeon suggested vitamin E oil, and that's it.
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 » Mon Aug 06, 2018 1:10 pm

Foreveryoung wrote:
heiders33 wrote:
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.

I am worried about having a dent in the abdomen, do you know if packing the wound tighter can help prevent this?

Also can anyone recommend lotions/creams/oils to apply on the wounds from the LAR? My surgeon suggested vitamin E oil, and that's it.


Yeah, I still have those - looks like I've been in a war. I have the feeling that they're going to be with me for a long time. I'm willing to try stuff though.
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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susie0915
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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 » Mon Aug 06, 2018 1:45 pm

NHMike wrote:
susie0915 wrote: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.


She or one of her doctors said that she would suggest it if things were difficult in the post-op meeting. At the moment, I think that it's going to be challenging getting to the meeting unless I get things under control.


You may have something going on in the gut. I had my ileo reversed 5 weeks after resection due to bowel blockage and got c diff in the hospital after the reversal. That was horrible. Once I was put on a antibiotic it didn't take too long to gain control. My issues were more with the frequent small bms. You may want to try Imodium or ask for lomotil to help with loose stools. It is still so early for you, it is hard to tell where you will be.
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

cbsmith
Posts: 64
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

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

Postby cbsmith » Mon Aug 06, 2018 4:56 pm

Your body needs protein in order for muscle and tissue to heal quickly. Not eating for long periods of time may delay the healing process.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

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

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

Postby Caat55 » Mon Aug 06, 2018 5:46 pm

I am sorry to hear your struggles. I camt imagine how frustrated you must be. I tpld my husband about your comment about understanding why pepple get colostomies. This process never is easy is it?
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 » Mon Aug 06, 2018 9:56 pm

cbsmith wrote:Your body needs protein in order for muscle and tissue to heal quickly. Not eating for long periods of time may delay the healing process.


I had a little dinner tonight. I've had maybe 500 calories over the past three days.

The wound healing is going quite well and I'm getting back the ability to do the abs-thingies (like getting out of bed) without problems. I have to use an elbow but it's better than needing help or rolling onto my left.

I took the Pepto Bismol and hopefully that fixes the stomach bug.

I also went to Planet Fitness this evening to get in a couple of miles of walking. It was Free Pizza Monday and they had a lot of pizzas on the table. Very few people actually had any though. I certainly didn't. But I was curious as to what it looked like.
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 » Mon Aug 06, 2018 9:58 pm

Caat55 wrote:I am sorry to hear your struggles. I camt imagine how frustrated you must be. I tpld my husband about your comment about understanding why pepple get colostomies. This process never is easy is it?


One thing about me is that I adapt to difficult things - if I can't fix something, then I try to make living through it more efficient. And there's been a lot of that in the past week. It's pretty amazing how many hard parts there are to cancer treatment.
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 » Mon Aug 06, 2018 9:59 pm

I'm chatting with a friend on bowel stuff (she has it from another disease) and she talked about meds to control various aspects of it. She's seeing a bowel consultant in Boston and she seems to know a lot more about it than I do.
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 » Mon Aug 06, 2018 10:08 pm

NHMike wrote:
cbsmith wrote:Your body needs protein in order for muscle and tissue to heal quickly. Not eating for long periods of time may delay the healing process.


I had a little dinner tonight. I've had maybe 500 calories over the past three days.

The wound healing is going quite well and I'm getting back the ability to do the abs-thingies (like getting out of bed) without problems. I have to use an elbow but it's better than needing help or rolling onto my left.

I took the Pepto Bismol and hopefully that fixes the stomach bug.

I also went to Planet Fitness this evening to get in a couple of miles of walking. It was Free Pizza Monday and they had a lot of pizzas on the table. Very few people actually had any though. I certainly didn't. But I was curious as to what it looked like.



I will echo what smith said, my surgeon/nurses all told me to eat a lot of protein to help with the wound regrowth. Here's what my hospital has to say regarding diet post the reversal

https://www.mskcc.org/cancer-care/patie ... surgery-01
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 » Tue Aug 07, 2018 4:16 am

Much better night. I only had to go five times and they were all minor. Material consumption was one pad and no diapers which is a huge improvement over the previous night.

I did a little experimenting with control and did hold things for a few minutes before letting it go. Hopefully things get better from here. I might take a second dose of the Pepto.
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 » Tue Aug 07, 2018 9:27 am

I had a bunch of incidents later in the morning but things quieted down. I took some more pepto and hope that helps. I will probably take two more doses later.

This morning it's been: 1) Sit down to work, 2) Go to the bathroom after five minutes.

It's been a lot of 1, 2, 1, 2, 1, 2 and sometimes 1, 2, 2, 1, 2, 2, 1, 2, 2. I hop in the shower after every couple of rounds to clean up areas that I can't get with toilet paper.

If it's still a problem tomorrow, then I will move my office into the bathroom.
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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