Rectal cancer (Stage 3A) diagnosed late June 2017

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ocstacy
Posts: 261
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

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

Postby ocstacy » Tue Aug 07, 2018 3:23 pm

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.


Hi mike,

Sounds a like what my mama is going through. She had to stop Metamucil and take Immodium for Diarrea. I got her Aquaphor to help her pain on her rear. She said she is so sore down there from going so much. What do you use for cream or ointment? We bought her "Calmoseptine" as I heard that worked well, but she said that it didn't help her soreness. So then I bought her Aquaphor and that seems to help. She pretty much needs to stay at home due to the bathroom issues. She is only only 2 weeks post op, and I know she needs to at least have one more to heal. Are you taking that nerve medication? Anyhow, hope you are healing well, but sounds like you both are on the same road to recovery. I just miss going out with my mom. She still feels uncomfortable leaving and she has to wear pads for protection. My mom will never wear a diaper. :0(
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.

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 3:46 pm

ocstacy wrote:
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.


Hi mike,

Sounds a like what my mama is going through. She had to stop Metamucil and take Immodium for Diarrea. I got her Aquaphor to help her pain on her rear. She said she is so sore down there from going so much. What do you use for cream or ointment? We bought her "Calmoseptine" as I heard that worked well, but she said that it didn't help her soreness. So then I bought her Aquaphor and that seems to help. She pretty much needs to stay at home due to the bathroom issues. She is only only 2 weeks post op, and I know she needs to at least have one more to heal. Are you taking that nerve medication? Anyhow, hope you are healing well, but sounds like you both are on the same road to recovery. I just miss going out with my mom. She still feels uncomfortable leaving and she has to wear pads for protection. My mom will never wear a diaper. :0(


I'm not using any creams for soreness. In general, things are okay if I can get three or four hours of sleep (the skin heals). I'm actually in the office right now. I came in to talk to someone but they were busy so I may come back tomorrow or Friday. It's very tricky stuff. I am not taking the nerve medication - Gabapentin I presume. I'm just living with the neuropathy hoping that it declines over time. These days, I usually wear a diaper and put a pad in it. Most accidents will be contained by the pad so I can reuse greatly decreasing waste and cost. I'm purely pragmatic - if something works I'll give it a shot.

I'm using diet-timing right now. Eat once a day so that the output is predictable with-regards-to-time. It's definitely challenging 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

Eleda
Posts: 133
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 » Tue Aug 07, 2018 4:00 pm

Can u not take immodium Mike to thicken Ur output therefore reducing frequency and liquidity??? And someone also recommend in a previous post a keto diet helped hugely!!!!
I'm beginning to dread the reversal period now!!!!!
Looks like a tough ride :| :| :|
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

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

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

Postby Foreveryoung » Tue Aug 07, 2018 4:15 pm

I just had a follow up with my surgeon, two weeks post the ileostomy reversal. He said he generally doesn't like using immodium and would recommend slowly incorporating psyllium husk (1 teaspoon a day) to my diet starting next week.

Also he said don't use soap down there. That area doesn't need to be super clean. Desitin has worked wonders for me, and warm water toilet paper has been my weapon of choice. I'm going through almost a roll a day (20+ BMs daily), but just ordered a Toto bidet.

One thing to note, I've been showering with my wound covered. But the nurse said that I should be showering with the wound open and have soap/water run over it. This will speed up recovery and helps with granulation.
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]

Eleda
Posts: 133
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 » Tue Aug 07, 2018 4:26 pm

Yes the husk is a good idea,,
Showering with the open wound????
Sweet baby Jesus!!!!!! I dunno ????
Sounds excruciating :?
And the sitz bath should be great n this case too,,
I've a press full of imodium and miralax,,, depending on what I needed, but fortunately ATM neither,, as in doing mop up,,,,,, I did use the adult pull ups and found them great after surgery ( random jelly type leeks )
I hope it resolves soon for u
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

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 4:36 pm

Eleda wrote:Can u not take immodium Mike to thicken Ur output therefore reducing frequency and liquidity??? And someone also recommend in a previous post a keto diet helped hugely!!!!
I'm beginning to dread the reversal period now!!!!!
Looks like a tough ride :| :| :|


I think that mine is complicated by a stomach bug. Things were getting better last Wednesday and Thursday, and then it all fell apart Friday evening. The stool was getting darker and firmer and it would have been easier to manage (not easy but easier). Today, some of the darker stool came back and I suspect that that's due to the Pepto Bismol. I'm going to take another two doses and hope that kills the stomach bug. Whatever the bug is - it's mild, because it hasn't slowed me down much.

I think that the surgeon will recommend Immodium for control at the post-op meeting and I think that one of her residents hinted at this. But I don't know that it will help if I have a stomach bug.

Most people that I've read have a challenging time with the reversal. A very few have no problems with it and I think that you have everyone in-between with some having it so hard that they go to a colostomy. I can see this working but I have a hump to get over.

On the positive side, a lot of the things that used to cause abs twinges no longer do. I can get out of bed without much extra effort and I can get in and out of the car without thinking about levers and limbs.
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 4:39 pm

Foreveryoung wrote:I just had a follow up with my surgeon, two weeks post the ileostomy reversal. He said he generally doesn't like using immodium and would recommend slowly incorporating psyllium husk (1 teaspoon a day) to my diet starting next week.

Also he said don't use soap down there. That area doesn't need to be super clean. Desitin has worked wonders for me, and warm water toilet paper has been my weapon of choice. I'm going through almost a roll a day (20+ BMs daily), but just ordered a Toto bidet.

One thing to note, I've been showering with my wound covered. But the nurse said that I should be showering with the wound open and have soap/water run over it. This will speed up recovery and helps with granulation.


Hmm. I guess I'll see what my surgeon says but I wouldn't expect anything different or else she would have recommended it after surgery.

There are some times when I will just fill a bucket with water and pour it out with a plastic bowl over my lower parts. I use shampoo when I take a shower. I try to do more of the rinses because they are quicker.

A roll a day sounds about right. I was thinking of buying a water bottle with a squirt nozzle.
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 » Tue Aug 07, 2018 4:46 pm

I thought you are using a bidet? I went ahead and purchased one based on your post, set to arrive on Thursday.
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 4:49 pm

Foreveryoung wrote:I thought you are using a bidet? I went ahead and purchased one based on your post, set to arrive on Thursday.


I had one in the hospital room.
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

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

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

Postby heiders33 » Tue Aug 07, 2018 5:07 pm

I showered with my wound uncovered. It helped clean the area and actually felt pretty good.
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

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 5:15 pm

heiders33 wrote:I showered with my wound uncovered. It helped clean the area and actually felt pretty good.


The doctors put a piece of tape on it that allowed air to flow below and above the gauze and indicated that I could shower with it like this and let the water get in the gauze. The nurse taped the top and the bottom so air could flow in the middle and I guess that water could get in that way. So both designs were intended for it to breathe and that includes water.

The doctors didn't tell me about showering with the gauze off 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

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

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

Postby Caat55 » Tue Aug 07, 2018 6:35 pm

I have concerned about my skin, wiping, breakdown post reversal. I went to a local surgeon, Board certified, rather than the 6 to 8 hour nightmare of traffic to Stanford. He said my skin is too fragile to even do the barium enema. He recommended two more months of healing and then to come back. I will let my Stanford doctor know what's up. He said that every thing is looking so good with CEA, response to treatment, not to rush into reversal.
I can live with ileo for a bit. I couldn't take what you are going through Mike.


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

Eleda
Posts: 133
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 » Tue Aug 07, 2018 7:02 pm

Susan is that from the radiation Ur skin is still that bad??????
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

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

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

Postby Caat55 » Tue Aug 07, 2018 7:23 pm

Eleda wrote:Susan is that from the radiation Ur skin is still that bad??????

Yes. I am very fair skinned. Damage was healing then surgery and chemo and nack again.

Susan.
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 » Tue Aug 07, 2018 9:07 pm

I had a real dinner with lots of protein and fiber. Total of about 1,000 calories. We’ll see how much I have to pay for it in the morning.

Bought Depends from Costco along with two boxes of pads. These should last a week under the worst case scenario.
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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