Rectal cancer (Stage 3A) diagnosed late June 2017

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Jun 10, 2018 8:59 am

NHMike wrote:
I'm impressed with the ladies here that get in 17,000 steps per day. I've been trying to do that for the office contest and I've done it for six days straight but it requires some planning to get it all in. It also requires clothes, shoes, and foot care.

In my case I did not have adjuvant chemo, so once recovered from surgery, it is just downhill. I also have two dogs that need at least one long walk in the forest per day. And two kids who are a bit spoiled and ask all the time for something :wink:

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

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Sun Jun 10, 2018 11:00 am

I can't imagine going through chemo 12 rounds straight man. It's rough doing it already as it is for me, doing another six rounds for a total of 12. Hang in there, your almost done. I can't wait to be here. The chemo is so hard to do, sometimes I want to give up. My numbess in hands and feet is so annoying. The closing up of the throat feeling is the worse. I can't wait to be done!!
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jun 10, 2018 11:13 am

Atoq wrote:
NHMike wrote:
I'm impressed with the ladies here that get in 17,000 steps per day. I've been trying to do that for the office contest and I've done it for six days straight but it requires some planning to get it all in. It also requires clothes, shoes, and foot care.

In my case I did not have adjuvant chemo, so once recovered from surgery, it is just downhill. I also have two dogs that need at least one long walk in the forest per day. And two kids who are a bit spoiled and ask all the time for something :wink:

Claudia


Our fitness center manager sent out statistics and the average person does about 3,000 - 4,000 steps per day. Last year our contest was 10,000 steps per day. This year it's 12,000 steps per day. I talked to other co-workers and a few said that it's too much. I'd guess that most people couldn't imagine doing 10,000 steps per day. I live in a suburban area and that may be a factor. I've read that people do a lot more walking in big cities so they may get higher numbers. I work in a small building but there's a huge office park next to it and a huge apartment complex and they both have very nice walking paths and a lot of people do use them but I'd guess that all of the people walking are around 15% of the populations in the buildings. The sedentary office lifestyle kind of promotes itself.
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

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Sun Jun 10, 2018 11:35 am

I had a fitbit once and the recommended steps was 10,000. I use an apple watch now and I try to stand at least 12 hours a stay and get in as much steps as I can. Typically 3k LOL...need to do more.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Jun 10, 2018 12:30 pm

Here it is 1930 now and my clock says 25239 steps.I have been out almost all day and had two long walks with the dog. I remember when I came to Norway in 2003 I was so impressed by all these people wallking, running, biking, skiing. In Italy is much less common, but here it is quite common to bike to work even in winter with spikes on your tires.


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: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jun 10, 2018 9:36 pm

Atoq wrote:Here it is 1930 now and my clock says 25239 steps.I have been out almost all day and had two long walks with the dog. I remember when I came to Norway in 2003 I was so impressed by all these people wallking, running, biking, skiing. In Italy is much less common, but here it is quite common to bike to work even in winter with spikes on your tires.


Claudia


I had a look at some US stats and some country stats and every country is under 10K and a lot are under 5K. My part of the country (New England) does quite well in the summer around 8,000 but not so well in the winter. 25K is a lot of steps for one day and I get the feeling that that's typical. I can see why you had a quick recovery with that level of activity. I'm sure walking a dog takes more effort than just walking too. I will likely get in about 17K today - I think that's probably my limit for something that I can maintain and it takes effort to do that many.
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: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 15, 2018 10:15 am

The left of this chart is nine days after Oxaliplatin.

I was thinking last week as to how would it be possible to get 25 or 27 thousand after Claudia's post and then I just worked on it.

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

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Fri Jun 15, 2018 4:20 pm

Yes! :mrgreen: Congratulations! Today I have only done 9669 because I was at work and then we had a summer party and did not walk the dogs :D But tomorrow I will try to compensate for it.

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

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sun Jun 17, 2018 12:10 am

Congratulations on your end of chemo!
And thank you for documenting your jourmey in this thread. It will be very useful for future Stage III rectal cancer patients.

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jun 17, 2018 3:26 am

Atoq wrote:Yes! :mrgreen: Congratulations! Today I have only done 9669 because I was at work and then we had a summer party and did not walk the dogs :D But tomorrow I will try to compensate for it.

Claudia


I kind of crashed and burned with only 32K yesterday and I'm not going to worry about steps at all today. It's time to get back to Yoga and weights and just do a decent number of steps like 15K or so.

The neuropathy (Xeloda-style) is quite strong this weekend - it's back with a vengeance. I think that it normally peaks 5-8 days after finishing the cycle so it's a little reminder that it isn't done with me yet.

I had to change the bag last night and it took 13 minutes but it wasn't as smooth as I'd normally like. There was some stinging during the day yesterday - the usual sure sign that it had been on too long. The additional walking likely loosened it up as well. The larger wafers are more comfortable in fitting the stoma but they are also noticeably heavier and more bulky too. I have to be careful in mundane tasks like putting on socks.
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

mpbser
Posts: 479
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Mon Jun 18, 2018 6:09 am

Congratulations on ending the long year journey. I hope all your side effect symptoms disappear soon.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon Jun 18, 2018 1:33 pm

Good for you Mike. I have the change down to 5 minutes when my fingers work. Still not my favorite thing honestly, but hate meds more.
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
CT NED 9/2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jun 18, 2018 2:11 pm

Caat55 wrote:Good for you Mike. I have the change down to 5 minutes when my fingers work. Still not my favorite thing honestly, but hate meds more.


My absolutely best time was around 9 minutes. Perhaps due to using a two-piece and using paste. I can only do it around 9-11 minutes if there is no output. If there is output, then it takes longer; sometimes much longer.
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

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Mon Jun 18, 2018 4:51 pm

Bag change has been quite quick for me. About 5-7 minutes right out of the shower. I usually shower with the bag on then change it afterwards. 9th round of Folfox this Wednesday. Neuropathy has been a bit rough, numbess in hands and feet is worse at night, more feet then hands. Typing on keyboard you feel it more on the hands.

Mike are you done with your chemo soon? i can't wait to be done and get reversal, even though the bag is not to bad, I miss sleeping on my tummy. Plus I don't want to go in the pool with it and my kids like when parents are in there with them.

I walked my dogs today with my daughter (10 year old) to my Mom's house and back, round trip 4k steps. LOL....I need to do more, I will be more active once I am done with this. I am going to do the Body Beast workout.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Jun 19, 2018 8:19 am

Rikimaroo wrote:Bag change has been quite quick for me. About 5-7 minutes right out of the shower. I usually shower with the bag on then change it afterwards. 9th round of Folfox this Wednesday. Neuropathy has been a bit rough, numbess in hands and feet is worse at night, more feet then hands. Typing on keyboard you feel it more on the hands.

Mike are you done with your chemo soon? i can't wait to be done and get reversal, even though the bag is not to bad, I miss sleeping on my tummy. Plus I don't want to go in the pool with it and my kids like when parents are in there with them.

I walked my dogs today with my daughter (10 year old) to my Mom's house and back, round trip 4k steps. LOL....I need to do more, I will be more active once I am done with this. I am going to do the Body Beast workout.


I finished chemo last Wednesday but the neuropathy remains. It usually peaks 5-8 days after the last pills so I'm hoping that it starts to decline in the next day or so and that it's gone in another week or two. I was in a hurry to get the reversal and then the Dana Farber Oncologist said four months so my frame of mind was four months. Then I called the surgeon and she said one month after end of chemo. Most people seem to have it done one month after but I have seen a few people report two months or three months. So now I'm thinking maybe a bit longer than one month, like six weeks. But that's a mental thing.

I arranged an appointment for next week to speak to the surgeon so it's a trip into Boston (I usually leave at 4:15 AM for those) and I suspect she'll tell me about the surgery and maybe I'll have to sign some things though sometimes that's done at an appointment a week before the surgery. I imagine that my anxiety levels will rise as we pick a date and as we get closer to that date. Then the stuff with not eating and the special body wash three days beforehand.

I really need a vacation. Without the body hardware. She will remove the port too. I need to find out if she needs the model number of the port. I don't recall where I put the paperwork describing it but I would imagine that there might be some variation in how you do it based on the model and manufacturer.
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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