Rectal cancer (Stage 3A) diagnosed late June 2017

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Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Sep 09, 2018 1:24 am

For the reversal they told me to wait 5 weeks bwfore running and doing abdominals. The physioterapist visited me the day after the surgery.

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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 09, 2018 11:36 pm

It's six weeks minus one day. I did some stretching and bodyweight exercises yesterday (no abs stuff) and was a little sore in the legs and a little cramping so I took a Magnesium pill and 1 Nuun. I got in a quarter mile early this morning and it felt grand but I'm going to keep things very light for a while. I will only do abs work on the machine at low levels for a while.

THe last Imodium lasted 36 hours. I was in the bathroom a lot afterwards. I took another one late afternoon and will measure how long it lasts. The experiments don't make for the best in scheduling but they're necessary for me and my body to learn. I'm starting to wonder if I can get Imodium in smaller doses or just cut them in half.
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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Sep 11, 2018 8:05 pm

Yesterday I spent a lot of time in the toilet though it wasn't continuous. It started at 6:00 AM and ran until 9 PM but the intervals got longer and longer. In the evening I was in a moderate amount of pain and rather tired and sleepy. It was expected though - I wanted to see what happened in getting cleaned out after an Imodium and I did get cleaned out. The pain might have been due to not applying enough Cavilon Spray or applying it so that hair got pulled when I sat down. I eventually got to sleep and slept for 8 hours. I did take an Imodium around 8 PM yesterday.

Today was a great day - I got a ton of stuff done and had bowel control. I got in one mile of running and spent about 30 minutes doing weight machines and free weights - all at very low levels. We'll see if I'm sore or not in the morning.

One of the barrier creams arrived today and I'll try it out in the morning after a shower. I think that I'll try to do a mile run per day for a week this week and see how I do. If I can manage that, then maybe 1 1/4 next week.
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: 513
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Tue Sep 11, 2018 10:15 pm

That is great news Mike. Step forward, actually a mile forward. Congrats.
S
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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 13, 2018 1:54 pm

Yesterday was tough but I'm working on my control without the Imodium so that's to be expected. It was manageable but not fun. But I'm getting more sleep than before on the order of 7-8 hours.

I ran a bit over 1.5 miles yesterday and did about an hour of weights and other exercises. The weight amounts were really low though. It actually felt great. I was sweating like mad (it was very humid yesterday) and I think that I got up to 100 ounces of water. I got in about 15 minutes of exercise in the morning and then an hour at lunch today and hope for another hour this evening. It would be nice to do two hours a day and maybe three on the weekends but the main limiting factor is work and life chores.

I had a little soreness around the chest port this morning and was worried that I did something but I poked around and the other side was sore so just normal stuff. It actually feels great to get in a high heartrate sweaty workout after spending so much of my days working on bathroom issues.

I tried the Lantiseptic yesterday and it does work as a barrier cream but it leaves little pieces of itself here and there (in your underwear or the toilet seat. Best described as flakes. I took a shower at the office this morning so I used the Cavilon Spray. The nice thing about the Cavilon Spray is that it is very compact. The Lantiseptic comes in a large and heavy container so I leave it at home. The Calmoseptine and Cavilon Barrier Cream arrived today and I'll try them out as well.

I'm going to update my Garmin running watch to something newer that measures heartrate. I take my heartrate quite often and it's a bit of a nuisance to find my pulse and then watch the time for 15 seconds to half a minute. A watch would track my heartrate all day long and I could just look at a chart on the phone to see whether or not there are any issues and it could warn me when I'm working out if it's getting too high. The new Apple Watch with ECG sounds really cool but I don't think that I need that level of technology, at least I hope that I don't.

Inspiration for hitting the weights is Claudia in the other thread.
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: 300
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Thu Sep 13, 2018 2:46 pm

So cool that you are training strenght! And I am glad I inspired you. In the Alps I lost my Suunto running watch and then I bought a Garmin Fenix 5s. It is measuring hearth rate, sleep, stress and has also some smart watch functions.

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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 13, 2018 3:02 pm

Atoq wrote:So cool that you are training strenght! And I am glad I inspired you. In the Alps I lost my Suunto running watch and then I bought a Garmin Fenix 5s. It is measuring hearth rate, sleep, stress and has also some smart watch functions.

Claudia


I'm trying to decide on a 5 Plus or a 5X Plus. I like the bigger screen in the Plus but it's four ounces which is a lot of weight on the wrist.

5s and 5s Plus are beautiful watches.
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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 13, 2018 4:07 pm

Doctor said no enemas. It looks like everything else is okay.
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

Phillypatient
Posts: 14
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Thu Sep 13, 2018 4:21 pm

Doctor said no enemas.


What was the reason the doctor said no enemas?
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 13, 2018 4:26 pm

Phillypatient wrote:
Doctor said no enemas.


What was the reason the doctor said no enemas?


My doctor is very succinct.

Her reply was two words: No enemas. And that's good enough for me.
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: 838
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 » Thu Sep 13, 2018 6:22 pm

I know some doctors recommend or have no problems with enemas while others are not onboard. It may be too soon after your reversal. I was a year and a half after my reversal before enemas were recommended to me. I went through a couple tests, met with a dietician, and had pelvic floor therapy. The GI at the bowel control clinic at University of Michigan recommended daily miralax or daily enemas to get a good clean out at once, rather than going just a little bit many times a day. It may be something you can talk to your doctor about in the future if you have not been able to get to a place that gives you quality of life. Many do well with just diet, fiber, and Imodium and lomotil. I do know that rectal irrigation (enemas) are becoming accepted by more doctors in the treatment of LARS.
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

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 16, 2018 6:56 pm

susie0915 wrote:I know some doctors recommend or have no problems with enemas while others are not onboard. It may be too soon after your reversal. I was a year and a half after my reversal before enemas were recommended to me. I went through a couple tests, met with a dietician, and had pelvic floor therapy. The GI at the bowel control clinic at University of Michigan recommended daily miralax or daily enemas to get a good clean out at once, rather than going just a little bit many times a day. It may be something you can talk to your doctor about in the future if you have not been able to get to a place that gives you quality of life. Many do well with just diet, fiber, and Imodium and lomotil. I do know that rectal irrigation (enemas) are becoming accepted by more doctors in the treatment of LARS.


I think that the problem is introducing water which changes how the large intestine recovers so maybe it is something that can be used if there isn't a reasonable recovery but it could take a year to find out.
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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 16, 2018 7:09 pm

It was eight days after the last Imodium that I took another one. I wanted to see how well I could manage without it. Things were good for the first five days but they got progressively worse and I took one last night. It allowed me to sleep well last night and I'll take another one early in the morning as I have a 1.25 hour drive. I have an upcoming trip and I will probably take Imodium on a daily basis so that I am more or less functional during the day. I hope that I don't monopolize the bathroom too much (we have two bathrooms for part of the trip).

It's 8:00 PM on Sunday and I'm at the office working on something that I was supposed to finish yesterday. Maintenance work which is higher priority right now, has pushed project work off. I will likely be working while on vacation (high-tech in the US is often like that). I have some oldies blasting away in my office with the door open.

I ordered the Garmin Fenix 5 Plus which does almost everything a watch can (it doesn't have LTE and ECG like Apple's Watch). It arrives in two days and I'm eager to start using it so that I don't have to take my heart rate manually anymore. I've asked my son if he wanted my Forerunner 630 watch and he said that he'd take it. I've asked him if he wanted one many times and he always said not - but I'm guessing that I was assuming that he'd have to pay for it. He asked if it had maps on it and I said no. It has to be used with a phone or PC for maps.

Image

The Garmin 5S/5S Plus is a little smaller and here's an example of the 5S Plus - the 5S models come in some very nice colors. The other two models have fewer choices.

Image

I've run at least a mile for the past five days but won't get any running in today unless I finish early which looks very unlikely right now. It's nice that I'm feeling well enough to put in decent hours at work though.
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

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Mon Sep 17, 2018 4:02 pm

I like also that is calculating your VO2 max. It is nice to track progress!

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: 1674
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 17, 2018 7:07 pm

Atoq wrote:I like also that is calculating your VO2 max. It is nice to track progress!

Claudia


Most reviews for these watches say that you need to be a professional or very dedicated athlete to get the most out of these watches but they have a lot of features for ordinary people too. I'm not really sure what VO2 max is yet but I'll find out eventually. My heartrate was a bit fast today and I took my pulse several times in different places but I wanted to know what it was while driving and there was no way to do that. The watch would allow me to see it at a traffic light.

But yes, I like the motivational effects of these 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


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