Rectal cancer (Stage 3A) diagnosed late June 2017

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James65
Posts: 364
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
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Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby James65 » Mon Dec 04, 2017 2:15 pm

Hi Mike, been a little while but I've been dropping in every so often to see how things are going for you.

Quick note, I run a lot, about 35 miles per week, and I use a convatec convex wafer with a closed end pouch. When I run, I tuck the pouch into my shorts and that stabilizes it well. I also am careful to start with an empty bag and carry an extra bag just in case. I run mostly on trails in the woods so not a worry about privacy. I also do my best to be sure I won't have a movement while I run. I've found that even a little bit in the bag can be a problem by causing some skin irritation around the stoma.

Best to you,
James
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

rockhound
Posts: 55
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Mon Dec 04, 2017 3:43 pm

NHMike wrote:
I requested a sample. I requested them from other places too but didn't hear anything back. How does the sample request process work (as in the process and how long it takes)? Keep the product suggestions coming.


With the samples, I went online and filled out info forms for Convatec, Hollister, and Coloplast; came home from hospital with Hollister. Each company ended up calling me and then after I tried the Coloplast samples and liked them (plus with input from my great ostomy nurse), I got hooked up with them again to order. The companies were pretty persistant in my experience (still are!).
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

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Dec 04, 2017 4:03 pm

rockhound wrote:
NHMike wrote:
I requested a sample. I requested them from other places too but didn't hear anything back. How does the sample request process work (as in the process and how long it takes)? Keep the product suggestions coming.


With the samples, I went online and filled out info forms for Convatec, Hollister, and Coloplast; came home from hospital with Hollister. Each company ended up calling me and then after I tried the Coloplast samples and liked them (plus with input from my great ostomy nurse), I got hooked up with them again to order. The companies were pretty persistant in my experience (still are!).


Thanks for the information. Unfortunately my phone doesn't work in my office so I guess I'd have to be driving to/from work to get their calls. I've put in three requests for samples and I've received confirmation emails but no phone calls yet. I may try calling them up to ask for samples if the current approach doesn't work.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Dec 05, 2017 8:44 am

I changed the bag this morning in a record 12 minutes (for me). There was no irritation (no sting when I applied the barrier wipes) so two days is a lot better than five. Next change will be in three days. If there's no stinging, then I'll stick with three days. I'm still looking into other products though. No call backs from any of the free sample places yet.

Slept in a recliner last night and this greatly reduced (by 98%) stuff leaking into the other stoma hole and coming out the rear end. The stuff this morning might have been from yesterday as well. The recliner is not as comfortable as the bed but my Garmin Forerunner reported that I got 9 hours and 50 minutes of sleep, 5 hours and 38 minutes of deep sleep and 3 hours and 44 minutes of light sleep so I should feel pretty good today. It was cold last night and the heater was on quite a bit so my throat and eyes were a bit scratchy so I'll need to set up a humidifier as it's only going to get colder in the next week.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

rockhound
Posts: 55
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Tue Dec 05, 2017 2:26 pm

NHMike wrote:I changed the bag this morning in a record 12 minutes (for me). There was no irritation (no sting when I applied the barrier wipes) so two days is a lot better than five. Next change will be in three days. If there's no stinging, then I'll stick with three days. I'm still looking into other products though. No call backs from any of the free sample places yet.

Slept in a recliner last night and this greatly reduced (by 98%) stuff leaking into the other stoma hole and coming out the rear end. The stuff this morning might have been from yesterday as well. The recliner is not as comfortable as the bed but my Garmin Forerunner reported that I got 9 hours and 50 minutes of sleep, 5 hours and 38 minutes of deep sleep and 3 hours and 44 minutes of light sleep so I should feel pretty good today. It was cold last night and the heater was on quite a bit so my throat and eyes were a bit scratchy so I'll need to set up a humidifier as it's only going to get colder in the next week.


The recliner was my friend while I was recovering from surgery and during Folfox chemo. Two days without changing was the max I could really go in the end; anything more and there was just too much irritation and skin breakdown. Lots of trial and error to get to that!
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

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Dec 05, 2017 2:56 pm

I think that it’s the paste on the barrier wipes that’s the limiting factor for me. I think that the flow removes a little and that it can be the amount of stuff flowing that removes enough of it to get to your skin. I typically use three to four wipes. Others here have talked about stronger skin protection and I’d like to try those out. I could go with two days if I had to as insurance would cover that but I think that the time to change and convenience of changing is a factor to. So maybe some of he solid barriers instead of the towel paste last a lot longer.

Your data point is certainly helpful.

I called and left a message with the stoma nurse but no reply. She’s probably really busy as she’s been out for a while with catching up to do. I will see her Thursday at any rate.

I’m going to call the companies that make the products to see if I can get samples that way as the web forms don’t seem to work for me.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

User avatar
O Stoma Mia
Posts: 923
Joined: Sat Jun 22, 2013 6:29 am

Oxaliplatin desensitization

Postby O Stoma Mia » Tue Dec 05, 2017 3:48 pm

NHMike wrote:... I have Oxaliplatin coming up later this month. I'm meeting with the oncologist tomorrow to see how quickly we can get started...

My only suggestion at this point would be if you go with a regimen that involves oxaliplatin, be sure you try to get them to follow a desensitization protocol before administering oxaliplatin so that it doesn't have such a bad effect. In addition, you can argue for a lower dose level of oxaliplatin, and you can argue for the infusions to be spread out over a longer time period (i.e., over 4 or 6 hours instead of over only 2 hours). This gives the patient the same dose of oxaliplatin, but spreads it out over a longer period so that the body has a better chance of absorbing it easily without generating a bad reaction.

Oxaliplatin toxicity and oxaliplatin desensitization protocols

Oxaliplatin desensitization questions
viewtopic.php?f=1&t=35164#p246839
Allergic reaction to Oxi
viewtopic.php?f=1&t=43093#p304849
Desensitization protocol for oxaliplatin
viewtopic.php?f=1&t=57906&p=456018#p456018

Hypersensitivity Reactions to Oxaliplatin and the Application of a Desensitization Protocol (Example)
    Table 1. Oxaliplatin desensitization compounding instructions
    Have the pharmacy make four 10-fold dilutions of oxaliplatin in 100 ml of D5W.
    Starting with the most dilute solution (1:10,000), run each one in over 60 minutes. At the end of this 4-hour desensitization, run the remainder of the
    oxaliplatin in 500 ml D5W in over the usual 2 hours.
    Final dose = ____________________ mg
    Dilute 10% ( _____ mg) of the final dose of oxaliplatin in 100 ml of D5W (label: bag 4).
    Prepare another 10% dilution ( _____________ mg) of the final dose of oxaliplatin in 100 ml of D5W (label this the “compounding bag” to be discarded after
    compounding is completed).
    Remove and discard 10 ml from a 100-ml bag of D5W. Place 10 ml ( ________ mg) from the compounding bag (label: bag 3).
    Remove 1 ml (__________ mg) from the compounding bag; place it into a 100-ml bag of D5W (label: bag 2).
    Remove 0.1 ml (__________________ mg) from the compounding bag; place it into a 100-ml bag of D5W (label: bag 1).
    Place 90% (__________ mg) of the final dose into a 500-ml bag of D5W (label: bag 5)

    Ref : http://theoncologist.alphamedpress.org/content/9/5/546.full.pdf+html
    .
.
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Tue Dec 05, 2017 6:48 pm

Mike:
Ann (aqx99) is giving you sound advice. Especially regarding the use of ostomy paste.

If you are applying a ring of ostomy paste on the surface of the wafer, stop. Cease and decist. Ostomy paste has no adhesive property. It is not Elmer’s glue. Ostomy paste will add to leaks by provide a ready conduit for liquid ileostomy output to undermine the wafer.

You are not alone. Erroneous use of ostomy paste is one of the most frequent pit-falls encountered by individuals new to an ostomy. Almost every new patient ostomy “gift bag” includes a sample of stoma powder and ostomy paste. Neither are essential accessory items. Most people do fine without either.

Use of a barrier ring is the best protection against water leaks. Think of a barrier ring as a gasket in a faucet. Barrier rings encircle the stoma and provide a ready resistance to digestive enzymes that can erode the normal hydrocolloid wafer material. Barrier rings have different names depending on the manufacturer. The most popular is the Ekin Adaptic Ring (by ConvaTec). Other barrier rings go by the name of Brava Adaptic Ring (by Coloplast) and Adapt Ring (by Hollister).

The process of discovering the optimal Ostomy pouching system and accessory products does take time and detective work. Feel free to use the support forum of the United Ostomy Association of America (UOAA). I saw your thread on the UOAA forum asking for comments on how to keep the pouch close to the body for running and sports. Feel free to ask more questions of the members of the UOAA. It is a nice group of individuals. I have learned more from the members of the UOAA then from any ostomy nurse. There is something to be said for the wisdoms learned from living with an ostomy and being an end-user of Ostomy products.

Calling different manufacturers and requesting samples remains the best way to try products in finding the best system for you. Each person has a unique abdominal topography and skin characteristics. Each manufacturer has its own propriety “recipe” that composes the hydrocolloid matrix. Calling into a manufacturer, you will be greeted by a support person who has ostomy awareness and knowledge. Discuss your stoma and what you are looking for in an ostomy pouching system. You can also ask to receive a paper bound catalogue. Sometimes it is preferred to flip through pages of a paper catalogue than prowling the internet and web sites.

Here are the 1-800 numbers for the main ostomy product manufacturers. My favorite products are from Coloplast and CyMed.

Coloplast: 1-800-533-0464 Ask about the Mio and Sensura lines and the Brava adaptic rings and Brava Strips (to anchor edges of the water)

CyMed: 1-800-582-0707 Ask about the Micro-skin wafers

ConvaTec: 1-800-422-8811 Ask about the moleable wafers and Ekin Adaptic Cohesive Rings/Seals (barrier rings)

Hollister: 1-800-323-4060 Ask about the moldeable wafer durahesive wafers specific for ileostomies (longer wear time, stronger withstanding to digestive enzymes).

Best wishes in finding The Best ostomy system for 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: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Dec 05, 2017 8:53 pm

MissMolly wrote:Mike:
Ann (aqx99) is giving you sound advice. Especially regarding the use of ostomy paste.

If you are applying a ring of ostomy paste on the surface of the wafer, stop. Cease and decist. Ostomy paste has no adhesive property. It is not Elmer’s glue. Ostomy paste will add to leaks by provide a ready conduit for liquid ileostomy output to undermine the wafer.

You are not alone. Erroneous use of ostomy paste is one of the most frequent pit-falls encountered by individuals new to an ostomy. Almost every new patient ostomy “gift bag” includes a sample of stoma powder and ostomy paste. Neither are essential accessory items. Most people do fine without either.

Use of a barrier ring is the best protection against water leaks. Think of a barrier ring as a gasket in a faucet. Barrier rings encircle the stoma and provide a ready resistance to digestive enzymes that can erode the normal hydrocolloid wafer material. Barrier rings have different names depending on the manufacturer. The most popular is the Ekin Adaptic Ring (by ConvaTec). Other barrier rings go by the name of Brava Adaptic Ring (by Coloplast) and Adapt Ring (by Hollister).

The process of discovering the optimal Ostomy pouching system and accessory products does take time and detective work. Feel free to use the support forum of the United Ostomy Association of America (UOAA). I saw your thread on the UOAA forum asking for comments on how to keep the pouch close to the body for running and sports. Feel free to ask more questions of the members of the UOAA. It is a nice group of individuals. I have learned more from the members of the UOAA then from any ostomy nurse. There is something to be said for the wisdoms learned from living with an ostomy and being an end-user of Ostomy products.

Calling different manufacturers and requesting samples remains the best way to try products in finding the best system for you. Each person has a unique abdominal topography and skin characteristics. Each manufacturer has its own propriety “recipe” that composes the hydrocolloid matrix. Calling into a manufacturer, you will be greeted by a support person who has ostomy awareness and knowledge. Discuss your stoma and what you are looking for in an ostomy pouching system. You can also ask to receive a paper bound catalogue. Sometimes it is preferred to flip through pages of a paper catalogue than prowling the internet and web sites.

Here are the 1-800 numbers for the main ostomy product manufacturers. My favorite products are from Coloplast and CyMed.

Coloplast: 1-800-533-0464 Ask about the Mio and Sensura lines and the Brava adaptic rings and Brava Strips (to anchor edges of the water)

CyMed: 1-800-582-0707 Ask about the Micro-skin wafers

ConvaTec: 1-800-422-8811 Ask about the moleable wafers and Ekin Adaptic Cohesive Rings/Seals (barrier rings)

Hollister: 1-800-323-4060 Ask about the moldeable wafer durahesive wafers specific for ileostomies (longer wear time, stronger withstanding to digestive enzymes).

Best wishes in finding The Best ostomy system for you,
Karen


I'm somewhat tempted to post a diagram as I don't see how the enzymes can get through the wafer.

I use the barrier wipes to put on a layer of protection for the skin. This stuff wears off with time and enzyme flow so there's a time or flow limit to when it has to be reapplied and this appears to be before five days.

I apply about a 1/4 inch ring of paste on the inner edge of the ring. There is still a considerable amount of wafer remaining to adhere to the skin and I haven't had any leaking problems outside of the bag filling up with stuff and gas. The irritation was due to not reapplying the barrier wipes frequently enough. Perhaps you think that I am applying the paste to the entire wafer surface. I'm not doing this, only a small circle on the inside of the ring.

I talked to the guy from Coloplast about barrier rings. He said that they start to break down as well and that three to four days was a good guideline. I also had a look at some of those strips that are 100 for $62 on Amazon. Some say that they're good for up to seven days but the website says up to 72 hours. These are those 3M strips.

I'm a bit confused by what you're posting as the setup that I have does work - it's just that I was leaving the bag on longer than the materials support.

But I will call up the companies and ask for samples of other things as I do want to do more activity as the chemo permits. I'm on my way out the door to the gym right now before it closes.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Dec 05, 2017 10:12 pm

Let me try a text description.

Let's use circles for simplicity. We have the stoma in the middle. I use barrier wipes to make a protective layer on top of the skin going out one inch from the stoma base.

The wafer is cut 1/4 inch away from the stoma base. So the barrier wipes provide protection going out an inch away.

I put 1/4 inch of barrier paste on the wafer on the inside part of the wafer. This leaves an inch of wafer that sticks to the skin outside of the barrier paste. So there is the protective stuff coating that covers the skin from the stoma base out an inch which is further out than the barrier paste. And there's an inch of wafer attached to the skin or the barrier wipes coating. How does stuff leak out?
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

cbsmith
Posts: 47
Joined: Sat Nov 28, 2015 11:45 am

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

Postby cbsmith » Wed Dec 06, 2017 5:52 am

Try an Eakin Seal instead of the ostomy paste. The ostomy paste isn’t an adhesive so it won’t stick anything together, it I mostly used to fill gaps or indents. I find an Eakin works a lot better and is adhesive. And it will protect the skin around the stoma better than a barrier wipe.
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

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Dec 06, 2017 6:57 am

cbsmith wrote:Try an Eakin Seal instead of the ostomy paste. The ostomy paste isn’t an adhesive so it won’t stick anything together, it I mostly used to fill gaps or indents. I find an Eakin works a lot better and is adhesive. And it will protect the skin around the stoma better than a barrier wipe.


I will give it a shot.

The Coloplast guy explained how barriers are applied and apparently you stretch or form them around the stoma. The nuisance about the barrier wipes is their stickiness so you have to use a glove but, even then, it's a headache tearing open the packets with a glove that has the barrier wipes material on it.

I found a bunch of YouTube videos on this stuff which I've bookmarked. It is quite helpful to see how this stuff is applied and how it works. The manufacturer videos have constructed videos showing how the stuff works.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Aqx99
Posts: 279
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Location: Pfafftown, NC

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

Postby Aqx99 » Wed Dec 06, 2017 10:42 am

You may want to look into crusting to help heal the areas of irritation you have. There are some good videos on YouTube about it. Basically, you layer stoma powder and barrier wipes to form a crust over the raw area that protects it so it can heal, but still allows the adhesive to stick. It has worked well for me.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

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Shana
Posts: 156
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed Dec 06, 2017 4:39 pm

Aqx99 wrote:You may want to look into crusting to help heal the areas of irritation you have. There are some good videos on YouTube about it. Basically, you layer stoma powder and barrier wipes to form a crust over the raw area that protects it so it can heal, but still allows the adhesive to stick. It has worked well for me.


This worked for me too. My ostomy nurse gave me a bottle of barrier spray instead of wipes, much easier to apply so I switched to that instead of the wipes. I also use Hollister adapt barrier ring which I stretch to fit the flange before affixing to skin. I've had a stoma for 6 months now and learned what works best for me over time.

Good luck Mike, your documented journey is truly epic and I'm so glad to hear how well you are doing!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Wed Dec 06, 2017 4:45 pm

Mike:
Instead of individual packets of skin protectant, you can always use Cavilon Liquid Skin Protectant. It comes in a small 4 Oz. Spray bottle. Cavilon is hands-down The Best skin protectant and a trusted favorite of those with permanent ileostomies. Not all skin protectants are equal in quality. You can purchase Cavilon Liquid Skin Protectant from Amazon or from your Ostomy supply provider. It retails for $15.

Marathon Liquid Skin Protectant is the best for healing skin irritated or excoriated by exposure to urine or liquid ileaotomy output. It is an advanced wound care product. Available through Amazon and a few of the Ostomy supply companies (but not all).

I would encourage you to rethink your use of Ostomy paste as you describe. There is no advantage to the ring of Ostomy paste that you are applying. Ostomy paste is like grout. It is meant to fill dips, creases, and divots in the skin to make a level surface for applying a wafer. Ostomy paste is more similar to tooth paste than to a glue. The ring of paste that you are applying lessens the total area of skin contact with the hydrocolloid water and will add to the incidence of leaks. You will be best served with use of a barrier ring (Ekin Cohesive Adaptic Ring or Hollister Adapt Adaptic Ring or Coloplast Brava Ring) and NO Ostomy paste.
Karen
Last edited by MissMolly on Wed Dec 06, 2017 4:54 pm, edited 4 times in total.
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.


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