Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 25, 2018 10:27 am

Caat55 wrote:Wow you are impressive. Last round of chemo kicked my butt, motivation to exercise. I have been busy wrapping up schoolyear and outside house projects. We get summer temps over 100 regularly in June so need to get it soon. I am going to start back aggressively with yoga as it helps with bladder/bowel control.


Well, I'm done with the Oxaliplatin so it's doable. I don't think that I could do it if I was still doing Oxaliplatin. This is the third week so I caught up on the stuff that I didn't do the first two weeks which is normal for me with these cycles.

It's unlikely that we'll get 100 degree temperatures in general. Maybe one or two days like that every five to ten years. I would either workout indoors or go walking in the 20 miles of trails near one of my YMCAs. I need to keep up with the Yoga too. It helps the balance and other muscles. It's impractical for me to do cardio (1-2 hours), strength training with free weights and body weight, strength training machines, Yoga and flexibility every day. I can pick from three of those at best now that work is fairly quiet. On bad weeks, I get two or three workouts for the whole week.

I ordered pouches and wafers a size up. I was using 1 3/4 flange, 1 1/4 stoma and my stoma got bigger so the entire stoma isn't inside the whole (there's a small pice that sticks out a few mm from the skin that it covered by the wafer). So this time I have 2 1/4 flange, 1 1/2 stoma. I really do prefer the 1 3/4 flange as it makes it easier with clothing but my only option on going up was 1 3/4 flange, 1 3/8 stoma and I'd rather it be a bit bigger as being bigger is better for being active. So I'll try the bigger stuff this afternoon when I change the bag.

I'd consider outside house projects as unstructured exercise.
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: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat May 26, 2018 7:10 am

It's been eleven days since the last bag change and I just opened the boxes of the new stuff that arrived yesterday. Convatec made a design change to the pouches. There's now a second piece of plastic that starts just under the flange and goes up to the top. The bottom is open. My guess is that this is an attempt to prevent the filter from getting wet from the inside rendering it useless. We'll see whether or not it works. I guess the idea is that stuff will flow under the flap when you are prone and that gas will go up through the filter when you aren't.

This bag looks like my really old ones with the larger size.
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: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat May 26, 2018 8:59 am

Bag change was easy as there was no output. There was a tiny bit of stuff under the wager and a two small spots (2 mm) under the Hypafix tape. So there was a little leakage underneath the wafer but no stinging and no mess.

Putting on the new stuff was a piece of cake - took about ten minutes which is the best I can do on bag changes. Convatec made another small change on the wafers. They added a tab to the slipper paper covering the sticky side of the wafer. I guess that this may help to remove it. I didn't have problems with the old ones but they may be helpful to some people. I also consolidated the pouches and wafers as I had multiple boxes of things with some used up. I'm trying to keep my supplies in a shopping bag and a lot of it doesn't fit. I keep some spare boxes at the office too. I'm really happy in that I have the sized wafers instead of having to cut to fit - it saves me about five minutes of time in the change.
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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Atoq
Posts: 315
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat May 26, 2018 2:17 pm

I use a one piece solution and it takes me a minute to cut it, I just use a pen to make the oval shape and cut each time I need to change the bag (every other day). I have never tried the two pieces so it is difficult to figure out how it works.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
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
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat May 26, 2018 7:16 pm

Atoq wrote:I use a one piece solution and it takes me a minute to cut it, I just use a pen to make the oval shape and cut each time I need to change the bag (every other day). I have never tried the two pieces so it is difficult to figure out how it works.

Claudia


I would guess that a two-piece system would be less work because you don't have to worry about the backing or other side. It's just something that I couldn't do efficiently though doing it every other day would provide a lot of practice.
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: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 28, 2018 12:04 pm

Trying to bounce back on fitness now that Oxaliplatin is out of the way.

Image
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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue May 29, 2018 9:47 am

We are heading to New York. There were a few days last visit where my Fitbit recorded between 11 and 13 miles . Ready to role. Only doing Xeloda this round as Dr. And I had a miscommunication and chemo spot was given away. That's okay by me.

Keep on Trucking Mike!
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: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 29, 2018 9:56 am

Caat55 wrote:We are heading to New York. There were a few days last visit where my Fitbit recorded between 11 and 13 miles . Ready to role. Only doing Xeloda this round as Dr. And I had a miscommunication and chemo spot was given away. That's okay by me.

Keep on Trucking Mike!


Have a good trip. It's good for mental health. I'm Xeloda-only starting tomorrow's cycle and I'm going to try to get up to 2-miles of running a day (in addition to the walking). It was very hard with the Oxaliplatin. Basically feel like crap for two weeks, then start to feel better 1/2 week later and then it's time to start over again. Oxaliplatin killed my running.
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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue May 29, 2018 10:04 am

I can relate. Couldn't do my hill walk last round , just no umpff.. good luck.
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: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 30, 2018 6:31 am

CEA up to 3.2 (crap). Normal is below 3.8.

RBC, WBC, H&H a little below normal levels.

Minor accident at the office. The top of the wafer popped open. I held it in place, got back to the office and applied a few pieces of Hypafix tape and it seems to be holding. I'll change it at home this evening. I do have spares at the office and I have my emergency kit if I have to change it here but I've never done it this way before.
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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed May 30, 2018 10:21 pm

Got in 20000 steps, 8.9 miles today. Feels good. No one could tell by my energy and activity level I had cancer. Keep going forward.
When I go out at home, usually have my kit in car. It's different here, not going to carry supplies, change of clothes for a just in case. Wearing my osteoscecrets belt as security.

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

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Thu May 31, 2018 8:39 am

Caat55 wrote:Got in 20000 steps, 8.9 miles today. Feels good. No one could tell by my energy and activity level I had cancer. Keep going forward.
When I go out at home, usually have my kit in car. It's different here, not going to carry supplies, change of clothes for a just in case. Wearing my osteoscecrets belt as security.

Susan


Sounds amazing! 11000 steps is my post cancer record so far but I took a yoga class yesterday at Napa hotel/spa, it was outdoors overlooking the vineyards with a mindfullness theme. It felt good to be able to do most of the poses and feel "normal" I definitely need to do more stretching, I wasn't nearly as flexible as most... but so glad to be able to partake! Keep on enjoying!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu May 31, 2018 7:01 pm

Caat55 wrote:Got in 20000 steps, 8.9 miles today. Feels good. No one could tell by my energy and activity level I had cancer. Keep going forward.
When I go out at home, usually have my kit in car. It's different here, not going to carry supplies, change of clothes for a just in case. Wearing my osteoscecrets belt as security.

Susan


That's a lot of steps. I got in a big number yesterday as well but it was helped along by the running - running means that your steps take less 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

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu May 31, 2018 7:02 pm

Shana wrote:
Caat55 wrote:Got in 20000 steps, 8.9 miles today. Feels good. No one could tell by my energy and activity level I had cancer. Keep going forward.
When I go out at home, usually have my kit in car. It's different here, not going to carry supplies, change of clothes for a just in case. Wearing my osteoscecrets belt as security.

Susan


Sounds amazing! 11000 steps is my post cancer record so far but I took a yoga class yesterday at Napa hotel/spa, it was outdoors overlooking the vineyards with a mindfullness theme. It felt good to be able to do most of the poses and feel "normal" I definitely need to do more stretching, I wasn't nearly as flexible as most... but so glad to be able to partake! Keep on enjoying!

Shana


It's hard to do it all - cardio, strength-training, flexibility, balance.

I find that Yoga improves my flexibility while also doing some of the other things.
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

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu May 31, 2018 10:33 pm

Shana wrote:
Caat55 wrote:Got in 20000 steps, 8.9 miles today. Feels good. No one could tell by my energy and activity level I had cancer. Keep going forward.
When I go out at home, usually have my kit in car. It's different here, not going to carry supplies, change of clothes for a just in case. Wearing my osteoscecrets belt as security.

Susan


Sounds amazing! 11000 steps is my post cancer record so far but I took a yoga class yesterday at Napa hotel/spa, it was outdoors overlooking the vineyards with a mindfullness theme. It felt good to be able to do most of the poses and feel "normal" I definitely need to do more stretching, I wasn't nearly as flexible as most... but so glad to be able to partake! Keep on enjoying!

Shana

Good for you. I want to start again now that schools out. 8 miles today, tired city feet.

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


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