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 Feb 02, 2018 11:52 am

I had labs done and a meeting with the Oncologist and we decided to skip a week and also go with 80% Oxaliplatin. I had some cold sensitivity, arthritis in my hands and tingling in my fingertips on Wednesday but those appear to be gone now. I also ran 0.3 miles at 4.5 to 5.0 MPH and that felt very good. I'm going to take it easy with the running because of the pouch as I've read where it's possible to lose adhesion because of sweat.

So things are like night and day from today and a week ago.

My CEA report showed that it increased to 2.2 which is a bit of a worry. I sent my oncologist asking if it's a concern.

CEA at diagnosis was 2.7. It went down to 1.7 after Neo-Adjuvant chemoradiation treatment. The low was a lot lower but it was at a different hospital so I discount it. I've read lots of posts where the CEA rises with chemo. My lab considers normal to be 3.8 or below.

I'm also buried at work with projects. It's been infringing on my workout time.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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susie0915
Posts: 847
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Fri Feb 02, 2018 12:18 pm

Glad you're feeling better Mike. Yes my CEA went up during chemo. Was below .5 and went up to 1.1 during chemo, and my oncologist told me that was normal to see a rise during chemo.
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Fri Feb 02, 2018 12:29 pm

Hi Mike,
Glad that you are keeping moving. It helps with the neuropathy and just feeling better. As to the wafer and back adhering, I make sure the bag is empty (important as even a little bit of product can cause pulling and irritation from the wafer) and I tuck it into my shorts to keep it from bouncing too much. So far haven't had an issue with the wafer coming off.

Best,
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.

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Feb 04, 2018 6:56 pm

Mike,
Did you ever find out about the hip pain? My left hip hurts too. Curious.

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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Feb 04, 2018 7:06 pm

James65 wrote:Hi Mike,
Glad that you are keeping moving. It helps with the neuropathy and just feeling better. As to the wafer and back adhering, I make sure the bag is empty (important as even a little bit of product can cause pulling and irritation from the wafer) and I tuck it into my shorts to keep it from bouncing too much. So far haven't had an issue with the wafer coming off.

Best,
James


Hello James,

Thanks for your posts. I feel 100% today (with the bag of course). I was in a cold office yesterday and I'm in one right now and my fingers and hands are in good shape. Of course that will only last until Wednesday morning. But a couple of days being 100% really helps.

The wafer was fine - I changed it yesterday after six days - that's the longest I've had a bag one, and the change took under ten minutes which is about the best I've ever done. What helps is a 15 hour fast.

So yes, I tucked it into my shorts after emptying it out and everything was fine.

I was sore this morning though. Some box exercises on Friday afternoon that I haven't done in several weeks. It's the good type of sore. So back to infusions this week and I hope that I can survive #3. Temps look to be around freezing for a while so that's really good news.

The hip pain went away in a day or two. I'm guessing that I just picked up something that was heavier than I should have picked up and carried. I generally carry my gym bag with my left hand and it can weight up to 25 pounds. This with a backpack that can be up to 15 pounds when I'm carrying a couple of laptops and other gear. I'm going to try doing some abs exercises though I'll keep the counts low. I usually like to start off with 200 but I think I'll try 20 today.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

hawkowl
Posts: 112
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Mon Feb 05, 2018 9:20 am

With the right wafer/barrier you can exercise as much as you like with no fear of leakage. I live in a hot and humid climate and am active most of the day. I have also travelled extensively in the tropics

My secret for bag adhesion: use a moldable convex wafer plus a barrier ring as well as paste to any low areas, secure the edges of the wafer with a non irritating tape such as hypafix, wear a nuhope ostomy support belt to keep gentle pressure on the wafer without interfering with output, and use a stoma wrap such as ostomy secrets to keep the bag from flopping around.

Also, for hirsute men, hair removal is key (I have had laser treatments with great results).

I average 7-9 days per pouch/wafer in spite of being active and swimming and sweating

Good luck!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Mon Feb 05, 2018 9:21 am

That's a good sign that you return to 100 percent relatively soon after an infusion, or during a break. My neuropathy took a long time to dissipate--I still have some in my feet--so hopefully when you get to the end of the marathon you can recover quickly.

Also, exercises that get blood flowing are very good. Walking, running, biking, etc. These help flush toxins and get blood out to feet and fingers in a way that helps neuropathy. Anaerobic exercise, I found, was less helpful.

Keep fighting the good fight.
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.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Feb 05, 2018 9:37 am

hawkowl wrote:With the right wafer/barrier you can exercise as much as you like with no fear of leakage. I live in a hot and humid climate and am active most of the day. I have also travelled extensively in the tropics

My secret for bag adhesion: use a moldable convex wafer plus a barrier ring as well as paste to any low areas, secure the edges of the wafer with a non irritating tape such as hypafix, wear a nuhope ostomy support belt to keep gentle pressure on the wafer without interfering with output, and use a stoma wrap such as ostomy secrets to keep the bag from flopping around.

Also, for hirsute men, hair removal is key (I have had laser treatments with great results).

I average 7-9 days per pouch/wafer in spite of being active and swimming and sweating

Good luck!


You are a very cautious person. I have not tried barriers yet though I have a few samples. What has helped the most is the Cavilon Spray. It's expensive and insurance doesn't cover it but I'll trade healthy skin for a few bucks. I can see where tape would help and I did use band-aids for a while but those caused skin problems. I have looked around for a good tape and there are so many high-tech tapes out there that I couldn't figure out a product though I'll see if the one that you're using works. I have a couple of things to order from Amazon and tape wouldn't be a bad addition.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

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susie0915
Posts: 847
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 Feb 05, 2018 9:39 am

I also still have some neuropathy in my feet. Tolerable, but a little annoying. Just tingling and numbness but does not prohibit me from doing anything. I find the more I move the better it feels.
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Mon Feb 05, 2018 9:48 am

What has helped the most is the Cavilon Spray.


There are also barrier wipes by Smith & Nephew that work very well for protecting the skin and adhesion. They have some alcohol in them, too, and that helps with any skin issues (a bit stingy, but works). I also use a Convatec convex wafer with disposable bag. I've never had an issue with them not sticking, though during summer when I run more I have to change them every three to four days.
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.

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Mon Feb 05, 2018 9:49 am

PS

With the disposable bags, you can pour the product into the toilet and wrap the bag in a plastic bag and toss in the trash. Way better than drianable pouches.
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.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Feb 05, 2018 10:26 am

James65 wrote:
What has helped the most is the Cavilon Spray.


There are also barrier wipes by Smith & Nephew that work very well for protecting the skin and adhesion. They have some alcohol in them, too, and that helps with any skin issues (a bit stingy, but works). I also use a Convatec convex wafer with disposable bag. I've never had an issue with them not sticking, though during summer when I run more I have to change them every three to four days.


I was using the basic Convatec Wipes and the spray just makes the overall process easier and faster. The headaches with the wipes are stinging, making sure that you cover everything, having to use a glove, having to get them out of the package after opening it and the overall stickiness. With Cavilon, I just pump a few times. Dry it off and pump a few more times and done. I did get a box of Cavilon wipes with my last order, covered by insurance for "Just In Case".

I'm also using the Convatec Convex Wafer and it saves me having to cut the wafer to size. My mistake, though, was ordering the beige pouches - the problem with those is that you can't see though them to put the whole thing on. I like to attach the pouch to the wafer before applying.

I like to use the Market Basket Hot Food bags for changing the bag where they sell rotisserie chickens. They do not leak and they are just the right size. They could potentially be used on the road for emptying a bag when a toilet isn't handy.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

hawkowl
Posts: 112
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Mon Feb 05, 2018 10:29 am

Here is a link to the tape I use with great success:

Hypafix Dressing Retention Tape 2 Inch x 10 Yards - Pack of 2 Rolls https://www.amazon.com/dp/B014SUA3MM/re ... EAbRSAHXWT

I definitely prefer drainable bags to disposable ones... quicker for me to drain/rinse/go than to snap off the old bag and snap on a new one. We all have different preference; it just takes time to figure out what is best for you
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Feb 05, 2018 10:38 am

hawkowl wrote:Here is a link to the tape I use with great success:

Hypafix Dressing Retention Tape 2 Inch x 10 Yards - Pack of 2 Rolls https://www.amazon.com/dp/B014SUA3MM/re ... EAbRSAHXWT

I definitely prefer drainable bags to disposable ones... quicker for me to drain/rinse/go than to snap off the old bag and snap on a new one. We all have different preference; it just takes time to figure out what is best for you


I put it in my Amazon cart earlier this morning. I was surprised that the minimum width is 2 inches but I'll try those first. I guess one inch on the wafer tape and the rest on my skin. The price on Amazon is reasonable for the amount that you get. Some of those high-tech hospital tapes cost a small fortune.

I've only used the drainable bags and my philosophy is mainly to use what works. I am open to experimentation but only when I have relatively quiet periods in life (which is almost never). One thing that I noticed about the drainable bags is that the Convatec Natura Convex Beige drain area is more prone to tiny leaks at the edges. I did not see this with the Natura regular clear bags. I am not sure whether it's a problem with the clear vs beige or if there is a size difference in the width of the drain. The flange size on the Convex bags are much smaller for me than on the regular bags. I find that the plastic drain piece on the clear bags is a little bit stiffer than it is on the beige bags. The tiny leaks aren't a real problem - but it would be nice if it weren't there at all. It's possible that the strength of the Velcro isn't as good with the bags that come with smaller flanges. I will get the Convex Clear bags the next time and see if it's better.

Update: just placed the order. I usually batch up a couple of things from Amazon to get the free shipping and I had five items so I hit the button.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Feb 06, 2018 9:20 pm

I hate dealing with BriovaRX. I called my Oncologist on Friday to place the order. They placed the order but I hadn't heard anything Monday afternoon so I called them and they said that they had an issue with the order so I got both on the line and they both said that it was fixed. So I went to place the order and the dosage was wrong so I got the doctor's office and told them and they contacted BriovaRX and said that it was fixed. So I talked to their Consultant and she placed the order. She verified the quantity as well. I then got the pills this afternoon and the quantity was wrong (1/8th the drugs were shipped to me). I spent about 3 hours on the phone yesterday afternoon.

I called them this evening and they said that there was some kind of a screwup and that it's too late to send anything out now but they will work on sending out the remainder tomorrow.

Unfortunately this is the fifth Xeloda order that I've placed and the other four were the same way. I was on the phone with them Thursday through Monday the last time, including over the weekend for five hours. I do not know how they stay in business. It's far easier to just go to the local CVS. But I guess that this is the way that insurance companies like to handle this stuff. It's tough enough dealing with the cancer stuff - having to deal with mail-order pharmacies is just the biggest headache.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal


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