Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 12, 2018 1:37 pm

Caat55 wrote:
NHMike wrote:I noticed a leak in my bag two days ago - slow but annoying. It appears to be due to a misaligned Velcro strip not sealing the bottom of the bag all of the way. I put some Hypafix tape to try to contain it but I think that I'm just going to change it now. The annoying thing is that the next bag has the same issue. So I checked the rest of the box and they all have it. I imagine the other box has the problem as well. That's the problem with modern manufacturing. If there's an error, then they'll all have the same error. It only started happening on the sixth day so I'll have to change the bag more frequently.


I had a similar issue, my vendor sent a new box free of charge. I have gotten quick with changing appliance, 5 minutes. I use a wax ring and stoma powder maybe that's why it is so quick. So much easier to change then to risk a problem for me anyway, I am too active for risks.

S


The wafer and bag are $32 a piece so I expected better. I think, though, that I might just wind up with another box of them with the same problem unless they've fixed it. I wish that the velcro spanned the whole width of the drain instead of leaving so much open space.
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

benben
Posts: 268
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Fri Jul 13, 2018 6:43 pm

NHMike wrote:I found a study indicating that CEA went down with exercise but I doubt that they were talking about the exercise levels that some do here. All of the walking I do does cause some inflammation - I get a little chondromalacia (knee-tracking issues) from time to time and it results in losing cartilage in under the kneecap. My toes are a wreck too. But I don't know if it's causing these levels. If it keeps going up, then I'll be worried.

Of course one way to prove that it's the exercise is to stop doing it - but it's hard for me to not exercise.



I received word back from my cancer center today on intensive exercise in correlation with scans and CEA.

Intensive exercise can increase CEA levels, but generally only slightly and generally only if muscle tissue has been broken down such as during heavy weight training.
Exercise over extended periods of time should in fact lower CEA levels as general overall body health increases from the benefit of continued exercise.

CT Scans should not be effected by exercise. PET scans can be effected by intense exercise and is best to not exercise for 48 hours prior to a PET scan.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 13, 2018 7:21 pm

benben wrote:
NHMike wrote:I found a study indicating that CEA went down with exercise but I doubt that they were talking about the exercise levels that some do here. All of the walking I do does cause some inflammation - I get a little chondromalacia (knee-tracking issues) from time to time and it results in losing cartilage in under the kneecap. My toes are a wreck too. But I don't know if it's causing these levels. If it keeps going up, then I'll be worried.

Of course one way to prove that it's the exercise is to stop doing it - but it's hard for me to not exercise.



I received word back from my cancer center today on intensive exercise in correlation with scans and CEA.

Intensive exercise can increase CEA levels, but generally only slightly and generally only if muscle tissue has been broken down such as during heavy weight training.
Exercise over extended periods of time should in fact lower CEA levels as general overall body health increases from the benefit of continued exercise.

CT Scans should not be effected by exercise. PET scans can be effected by intense exercise and is best to not exercise for 48 hours prior to a PET scan.


I'm walking (with a bit of running) about 100 miles per week but I wouldn't call it intense exercise. Just a lot of low-intensity cardio. I haven't done weights or high-intensity cardio. All of that walking, though, is brutal on the skin on the toes and feet and puts some stress on the ankle and knees and I feel the joint stuff a little bit from time to time but a little rest and it's fine. The thing is that the chart of my amount of activity correlates well with the CEA chart.

I'll try to get another CEA in a few weeks. I think that insurance covers one a month at the most unless while on chemo.
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

benben
Posts: 268
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Fri Jul 13, 2018 7:44 pm

NHMike wrote:
I'm walking (with a bit of running) about 100 miles per week but I wouldn't call it intense exercise. Just a lot of low-intensity cardio. I haven't done weights or high-intensity cardio. All of that walking, though, is brutal on the skin on the toes and feet and puts some stress on the ankle and knees and I feel the joint stuff a little bit from time to time but a little rest and it's fine. The thing is that the chart of my amount of activity correlates well with the CEA chart.

I'll try to get another CEA in a few weeks. I think that insurance covers one a month at the most unless while on chemo.


Well I'd venture to guess that while your body is still under the effects of chemo that CEA levels may increase even more with exercise.
The skin issue should start to resolve itself soon. I remember while not getting oxaliplatin I still had some skin issues, so most likely 5FU related.
But all of that resolved about 1-2 months after chemo ended.

100 miles per week walking is no small amount while under chemo effect. Even at a very brisk 3.5 miles per hour that's about 29 hours of walking per week. That's great for where you are now.
I'm doing 120 miles bike riding per week (start the day with a 20 mile river loop) and get a few 1200-2000 ft climbs in per month as well as back into the weight training. I was mostly concerned about my upcoming CT scan as I'm doing a 5000 ft mountain climb next weekend, but wanted to share what my center reported. Glad to know it shouldn't effect the CT scan. Of course scanxiety is here regardless.

Keep up the good work Mike. You should really start to see a shift in improvements 2-3 months outside of treatment.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED


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