Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 9:44 am

Thanks for the suggestions on leaking. I saw a product called Depends Guard at the supermarket this morning and they looked interesting so I had a look at them on Amazon. They are designed for incontinence and are geared for male anatomy but they go back reasonably far so that there's enough absorbent material. These are definitely overkill for what I'm looking for as I'm just dealing with small leaks.

I also found that they have a product called Depends Shields which are thinner and designed for small bits of leakage so I think that I'm going to look for these at the drug store. They are relatively wide at the back so I don't have to be precise in securing it to underwear or shorts. I will only hopefully need to deal with this problem for another three weeks. At least this time around. I suppose that I may need something similar or more heavy duty down the road.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Sep 03, 2017 10:08 am

Mike:'
The best product for anal discharge is a pad called "Burterfly Pads." They are available on Amazon and are specifically designed to manage the messy nuisance of anal discharge.

You will not find "Butterly Pads" at a local pharmacy or Walgreens or Rite Aide. I have only find Butterfly Pads stocked on Amazon.

The beauty of these pads is their shape, design, and adhesive. These pads are unique and one of a kind. As the name implies, lButterfly Pads" are shaped like a butterfly with wings. The pad folds and tucks up between the buttocks cheeks. A light adhesive keeps them in place. Once positioned, you do not even know they are there.

Fabulous. Fabulous. These pads are fabulous. These pads make a huge emotional difference in trying to contend with anal discharge.

Go to Amazon and type into the search bar: "Butterfly Pads for anal discharge." You will be a happy camper.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 10:17 am

MissMolly wrote:Mike:'
The best product for anal discharge is a pad called "Burterfly Pads." They are available on Amazon and are specifically designed to manage the messy nuisance of anal discharge.

You will not find "Butterly Pads" at a local pharmacy or Walgreens or Rite Aide. I have only find Butterfly Pads stocked on Amazon.

The beauty of these pads is their shape, design, and adhesive. These pads are unique and one of a kind. As the name implies, lButterfly Pads" are shaped like a butterfly with wings. The pad folds and tucks up between the buttocks cheeks. A light adhesive keeps them in place. Once positioned, you do not even know they are there.

Fabulous. Fabulous. These pads are fabulous. These pads make a huge emotional difference in trying to contend with anal discharge.

Go to Amazon and type into the search bar: "Butterfly Pads for anal discharge." You will be a happy camper.
Karen


I did have a look at them and went through the comments. What I noticed is that you have to be fairly careful about the placement as they are fairly small and that these are kind of one use only. That is you change them when you go to the bathroom. They do have the advantage of being flushable.

With the Depends Shields, you don't have to be that careful about placement as it covers a relatively big area and can use one during the day and one at night and it will take care of any incontience issues. I have been pretty close a few times after radiology appointments.

I would like to pick some up today as I have to rearrange the cloth diapers every time I go to the bathroom.

I've been able to figure out the difference between the tumor coming out and regular pooping. With the tumor, there's no real pain. With poop, there's the razor-blade feeling.

The tumor pieces come out fairly frequently, I'd say the urge is there about once an hour. Could just be that the gas is aggravating the tumor feeling too.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Sep 03, 2017 10:35 am

Mike:
The Butterfly Pads do not require a new pad each time you urinate. That is misinformation on the commenters.

I simply remove the Butterfly Pad before I urinate and then replace it afterwards. The adhesive is similar to the adhesive of a Post-It note. The adhesive allows for removal of the pad and then replacement.

I have found the pads to be liberating, emotionally as well as physically. Anal discharge is messy and an unwelcome nuisance. The Butterfly Pads are unlike any women's personal care pad or other panty shield where you have to hope that the panty liner catches and contains the messy discharge. The Butterfly Pad is placed between the cheeks of the buttocks and contains anal discharge at its source.

Butterfly Pads come in both a Men's and a Women's configuration. They are offered in small/medium and medium/large sizing. Even though I am a small person, I use the Women's large size. Once in place, I do not even notice it's placement. It is that discrete.

My ileostomy has been easy for me to adapt and adjust to. The ongoing transient anal discharge has been problematic for me and has given me emotional grief. The Butterfly Pads have given me back a sense of confidence and security. I am a faithful customer and think highly of the product. The pads are defiantly worth a try for anyone annoyed by anal discharge.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 1:29 pm

I got the box of Shields at Walgreens. When unfolded, they are about 7.5 inches long by 5 inches wide at the widest point. The shape is like that of a racer-style bicycle seat. The pad is meant to be worn in the front with the wider side in front. I am wearing it with the wider side in the back. I've played around with the positioning and I think that they will work out. One important aspect is that the location of the anus relative to your underwear can change quite a bit depending on whether you are sitting or standing. I calculated the difference at about three inches for me so I will work out a location such that it provides coverage for that range.

The pads come in a pouch that's 3 inches by 5 inches and it is flat. Inside the pouch is the pad folded up. The pouch will fit in my jeans pocket and it appears that it's provided so that you can be discrete with it and it can be used for disposal. It looks small and flat enough so that I may be able to run with it on. I will have to give that a try.

So this looks like it will work but I'll need to try it for a few days to know for sure. I tossed a few in my backpack and a few in my workout bag so they'll be ready when I need them. I imagine that I will use two a day, more if I workout with them.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 1:56 pm

I had a look at the Butterfly Pads in detail and they work by sticking to your skin and covering the anus. They look about three inches long and slightly narrower in width. So they don't have the issue with the position changing depending on whether your sitting or standing. I am not sure that I want something sticking to the skin down there though as the skin may be burned or have fissures and removing it might be a bit painful.

The other product that I found that's often purchased with the Butterfly Pads on Amazon is called The Clean Seat. This is a pad that's 13 inches long and two inches wide going halfway down, and then the other half is wider and rounder. It's designed to take care of both minor incontinence and anal leaks and coverage is definitely not an issue. From the product description: Incontinence, hemorrhoids, pregnancy discharge, moderate menstrual flow, vaginal discharge, perspiration, post surgery or colonoscopy discharge

The first review comment: This is a very nicely designed discrete product. I am undergoing treatments for rectal cancer which has wreaked havoc with my bowels. This product has served as advertised and saved me from at least two embarrassing situations. One can quibble with the exact design but overall it does the job.

Notes are that the pad is two narrow (one comment is that the person uses two side-by-side) and that the adhesive doesn't work very well. But the concept looks great.

The Depends Shield product runs about $0.26 each (what I paid at Walgreens). The Clean Seat costs $0.34 at Amazon and The Butterfly Pad cost about $0.46 at Amazon. Prices for these products shouldn't be that bad given that they will likely only be needed for four weeks at most.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Sep 03, 2017 5:13 pm

Mike:
You have done some great investigative work on identifying personal care products for managing anal discharge. I have learned about new products from your posts. And I thank you.

Individuals with weakened anal sphincters, individuals with a colitis flare, women post partum and delivery, irritated hemmroids . . . the need for discrete products to contain fecal and anal discharge is a need experienced by many who anguish in silence.

It is advantageous to bring thie topic into the open for discussion. Your posts and research will help others who are reading for themselves or for a friend/family member who is experiencing unwelcomed anal discharge. Kudos to you.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 04, 2017 6:25 pm

My family wanted to go to the beach today and you can imagine how I felt about driving an hour and then maybe spending 20 minutes looking for a parking spot. So I went to the office to do some work and run and went to the bathroom which meant a lot of pain. I then went home and we left for the beach.

I took my special cushion and was in pain for about 30 minutes but then it went away. We lucked out on a parking spot right away in a great location and unpacked and I went to the bathroom where I went for another bought of razor blades.

BTW, the reason for this story is to tell you what I do in public bathrooms or those at work. The problem is that you don't want to try wiping with toilet paper as the friction is painful. So I carry a 12 ounce Nalgene bottle with water and pour it on a wad of toilet paper and dab. This works really well for me while making it possible to use public toilets. I think that I would otherwise have to carry moisturizers wipes with me. I think that the water bottle is a lot easier.

I went back and had some food leftovers and then tried to relax while others went swimming or shopping. And I felt awful while waiting. I went back to the bathroom and it was just a ton of gas. Once out I was fine for the rest of the time at the beach and the drive home. So it was an okay day for me. I have been trying to avoid long trips or a lot of time in public for obvious reasons.
Last edited by NHMike on Mon Sep 04, 2017 6:59 pm, edited 1 time in total.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

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susie0915
Posts: 440
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 Sep 04, 2017 6:50 pm

I think the last two weeks and 10 days after finishing radiation I pretty much stayed home. Good luck with your last three treatments. Just think this time next week you will be on the mend and done with your first phase of treatment.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

rockhound
Posts: 34
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Tue Sep 05, 2017 2:58 pm

Thanks for posting the info about the different pads, etc. I'm scheduled for an illeo take-down in a few weeks and that has been on my mind lately. Been following the site since my Dec. diagnosis, figured it was time to post something...
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

User avatar
susie0915
Posts: 440
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 » Tue Sep 05, 2017 3:33 pm

Rockhound,
Good Luck with your reversal. I'm sure all will go well.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Sep 05, 2017 3:39 pm

rockhound wrote:Thanks for posting the info about the different pads, etc. I'm scheduled for an illeo take-down in a few weeks and that has been on my mind lately. Been following the site since my Dec. diagnosis, figured it was time to post something...


Please see the reversal blog thread. I learned a lot watching the day by day reports of two people posting there.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Sep 06, 2017 6:48 am

Not a good day for working out yesterday. Only 5,500 steps. Too much work and a lot of errands to run.

This morning I started out with a 7-minute stretching routine and then did barbell squats, military press and deadlifts. I haven't done all three of them in quite some time. I dropped the weight on them a while ago. Just doing 65 pounds on the squats and press and 85 on the deadlifts. I usually do a lot more. But those three exercises felt really great and left me wanting more. We have a lot of thunderstorms for the next couple of days, maybe remnants of Harvey passing through so I won't have a lot of opportunities to walk outside.

Also, going into the office for a few hours to answer any questions that people that know that I have cancer may want to ask. I'm going to talk to a group that I work with tomorrow in a meeting just to state it and will answer any questions. But working out can make you feel so good. Even when overall, you don't.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

User avatar
susie0915
Posts: 440
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 » Wed Sep 06, 2017 7:23 am

So glad you're able to do some exercise. I know it can be tough, but does help make you feel better and is so good for your recovery. Only a couple more treatments right? Good Luck. You seem to be doing great. Rest if you need to rest though.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Sep 06, 2017 9:23 am

I feel quite good after working out. I know that I'd feel a lot better if I could workout more but sometimes bathroom stuff or work or life gets in the way. An early morning workout gets my mood and energy up for the rest of the morning.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy


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