Rectal cancer (Stage 3A) diagnosed late June 2017

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MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

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

Postby MeAndMine » Mon Sep 16, 2019 5:12 pm

I'm so sorry about the hit and run last night Mike! Like you needed one more thing to deal with. I'm glad you weren't hurt on top of the headache with the car and the other driver acting like that. It seems there is always something.

I hope you figure out the right combination of fiber etc. to make things easier for you. And hope you get the insurance mess figured out soon so you can move on from that. Hang in there.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Sep 18, 2019 10:52 am

As I wrote in the bowel thread, things have been better the past few days. Taking the Slippery Elm and Nopalina twice a day seems to make things better. The ideal case would be two hours or less in the bathroom. I make a few trips in the morning and a few in the evening and I can live with that. What helps is good signaling and enough time to get to the bathroom. So I'll go with this for a few weeks. I've been doing Miralax on and off and will probably do it daily. Just one dose. Two doses can result in liquidy output while one does does a better job keeping things soft.
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; 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, 2/12 1.2
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
2/19: Clean CT

wife2jeff
Posts: 39
Joined: Thu Sep 12, 2019 11:21 pm

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

Postby wife2jeff » Wed Sep 18, 2019 9:59 pm

How did you find out that you had scar tissue that causes a blockage?
Sounds like your daily regimen is working for you, that's good to hear there is hope for my husband.

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 19, 2019 4:04 am

wife2jeff wrote:How did you find out that you had scar tissue that causes a blockage?
Sounds like your daily regimen is working for you, that's good to hear there is hope for my husband.


I felt nauseous and was throwing up and went to the ER and they did a CT scan and the small intestine was distended just before where the ileostomy was.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Sep 19, 2019 7:20 am

This combination looks very promising (Miralax x1, Slippery Elm x2, Nopalina Capsules x3. This morning had me going to the bathroom for about an hour and twenty minutes overall elapsed time but not in the bathroom the whole time (I was sleeping for part of that time). If I can do this every day, then I'll be pretty happy. I still have the todo list item to write a book on this stuff but I'm buried with other stuff to do.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Sep 20, 2019 5:42 am

Done in about 30 minutes this morning. I also got a good night's sleep. So about four good days in a row. It's actually pretty amazing when you're so used to waking up three to four times in the middle of the night. I am still undecided about the Miralax. I was originally planning to use it just to do a flush or help do a flush but things seem to work with or without it. This morning (I got into work at 5:00 AM) I grabbed my small kit instead of the large kit.

A bunch of this bowel stuff is about confidence. Do you have the confidence to go out into the real world; go out for a run, go to a meeting or drive for an hour? I'm cautiously optimistic - too many setbacks to get too excited about success.
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; 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, 2/12 1.2
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
2/19: Clean CT

Pyro
Posts: 297
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Fri Sep 20, 2019 7:17 am

NHMike wrote:Done in about 30 minutes this morning. I also got a good night's sleep. So about four good days in a row. It's actually pretty amazing when you're so used to waking up three to four times in the middle of the night. I am still undecided about the Miralax. I was originally planning to use it just to do a flush or help do a flush but things seem to work with or without it. This morning (I got into work at 5:00 AM) I grabbed my small kit instead of the large kit.

A bunch of this bowel stuff is about confidence. Do you have the confidence to go out into the real world; go out for a run, go to a meeting or drive for an hour? I'm cautiously optimistic - too many setbacks to get too excited about success.


I have a new solution for constipation I had never heard of before, it wasn’t presented to me until the palliative care nurses showed up to my house. It’s called lactulose, only about 30ml a dose, doesn’t taste too bad and it works within 4 hours. I’ll never try anything else and it doesn’t turn your bowels into a running water faucet. In the US it’s prescription only, I highly recommend it.
Last edited by Pyro on Fri Sep 20, 2019 7:34 am, edited 1 time in total.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

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

Postby Rock_Robster » Fri Sep 20, 2019 7:21 am

Pyro wrote:
NHMike wrote:Done in about 30 minutes this morning. I also got a good night's sleep. So about four good days in a row. It's actually pretty amazing when you're so used to waking up three to four times in the middle of the night. I am still undecided about the Miralax. I was originally planning to use it just to do a flush or help do a flush but things seem to work with or without it. This morning (I got into work at 5:00 AM) I grabbed my small kit instead of the large kit.

A bunch of this bowel stuff is about confidence. Do you have the confidence to go out into the real world; go out for a run, go to a meeting or drive for an hour? I'm cautiously optimistic - too many setbacks to get too excited about success.


I have a new solution for constipation I had never heard of before, it wasn’t presented to me until the palliative care nurses showed up to my house. It’s called lactulose, only about 30ml a dose, doesn’t taste too bad and it works within 4 hours. I’ll never try anything else and it doesn’t turn your vowels into a running water faucet. In the US it’s prescription only, I highly recommend it.

Thanks Pyro, that’s really helpful - I hadn’t heard of it before, but it turns out it’s available over the counter here. I’ll definitely keep in mind.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Sep 20, 2019 7:24 am

Rock_Robster wrote:
Pyro wrote:
NHMike wrote:Done in about 30 minutes this morning. I also got a good night's sleep. So about four good days in a row. It's actually pretty amazing when you're so used to waking up three to four times in the middle of the night. I am still undecided about the Miralax. I was originally planning to use it just to do a flush or help do a flush but things seem to work with or without it. This morning (I got into work at 5:00 AM) I grabbed my small kit instead of the large kit.

A bunch of this bowel stuff is about confidence. Do you have the confidence to go out into the real world; go out for a run, go to a meeting or drive for an hour? I'm cautiously optimistic - too many setbacks to get too excited about success.


I have a new solution for constipation I had never heard of before, it wasn’t presented to me until the palliative care nurses showed up to my house. It’s called lactulose, only about 30ml a dose, doesn’t taste too bad and it works within 4 hours. I’ll never try anything else and it doesn’t turn your vowels into a running water faucet. In the US it’s prescription only, I highly recommend it.

Thanks Pyro, that’s really helpful - I hadn’t heard of it before, but it turns out it’s available over the counter here. I’ll definitely keep in mind.


I had a look and it says that it takes 48 hours to work.

The Nopalina has Senna in it and I think that taking it regularly keeps things soft.
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; 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, 2/12 1.2
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
2/19: Clean CT

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Atoq
Posts: 347
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Fri Sep 20, 2019 11:05 am

So nice that you had 4 days without issues in a row! I hope it is just the start of a new normality.

The hospital adviced lactulose when I was doing radiation.

How is it going with training? Here it is autumn now and raining a lot. I try to run three times a week and do strength twice, but the weather is working against it :)

Best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
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, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Sep 20, 2019 11:59 am

Atoq wrote:So nice that you had 4 days without issues in a row! I hope it is just the start of a new normality.

The hospital adviced lactulose when I was doing radiation.

How is it going with training? Here it is autumn now and raining a lot. I try to run three times a week and do strength twice, but the weather is working against it :)

Best
Claudia


My life will be a lot easier if it's the new normal.

Always good to have a list of medications for GI issues. I bookmarked a page on Lactulose - for when I write my often-delayed book on LARs.

I'm doing something every day whether it's Yoga, Bodyweight, Barbells, stretching, running or tennis. But I'm only running maybe two-three times a week when I'm having a good week. I need to do more cardio but all of the other stuff is easier because I can just run down to the gym and do them for ten minutes and then run back into my office. Or some of them I can do in my office (I just close the door).

We have nighttime temperatures in the 30s and 40s now so my neuropathy has been getting stronger. I need to dig out my cold-weather clothes.

You also bicycle and walk the dogs a lot so you're getting in a lot of activity every day I think.

Question for you: you indicate a colostomy in your signature. Do you still have it or was it removed? I'm curious how runners do with a colostomy bag.
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; 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, 2/12 1.2
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
2/19: Clean CT

Tupelo honey
Posts: 39
Joined: Tue Jul 19, 2016 7:57 pm

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

Postby Tupelo honey » Fri Sep 20, 2019 3:16 pm

NHMike wrote:Done in about 30 minutes this morning. I also got a good night's sleep. So about four good days in a row. It's actually pretty amazing when you're so used to waking up three to four times in the middle of the night. I am still undecided about the Miralax. I was originally planning to use it just to do a flush or help do a flush but things seem to work with or without it. This morning (I got into work at 5:00 AM) I grabbed my small kit instead of the large kit.

A bunch of this bowel stuff is about confidence. Do you have the confidence to go out into the real world; go out for a run, go to a meeting or drive for an hour? I'm cautiously optimistic - too many setbacks to get too excited about success.


It’s different for everyone is the only constant! Miralax is the only one I cannot do without. Sometimes I skip my usual fiber routine on weekends to cut down on bathroom activity, much as you do with your fasting I guess, but if I don’t take my half dose of miralax at least once on Sat night or Sunday morning, it wears off by Tuesday and I’m uncomfortable with hard insistent little milk duds. It seems to have a slow long effectiveness window for me. Takes a day or two to kick in and lasts a day or two after I skip it.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED

User avatar
Atoq
Posts: 347
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sat Sep 21, 2019 8:07 am

Hi! The colostomy was reconnected when they operated the tumor and made an ileostomy instead. They used the same opening (so my ileo was on the left side).

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
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, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 22, 2019 3:41 pm

Atoq wrote:Hi! The colostomy was reconnected when they operated the tumor and made an ileostomy instead. They used the same opening (so my ileo was on the left side).

All the best

Claudia


It sounds like you don't have a bag if I'm reading the timeline correctly.

It would be quite amazing if you could run as fast as you do with a bag on. There were a lot of things I didn't do for fear of it shearing off.
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; 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, 2/12 1.2
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
2/19: Clean CT

User avatar
Atoq
Posts: 347
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Sep 22, 2019 4:17 pm

NHMike wrote:
It sounds like you don't have a bag if I'm reading the timeline correctly.

It would be quite amazing if you could run as fast as you do with a bag on. There were a lot of things I didn't do for fear of it shearing off.


I don’t have a bag (anymore). I ran a relay race in Oslo last year, just to prove myself I could fly, stay overnight and run with the bag. We also won in the category superveteran (over 45) :mrgreen:

I had a belt holding everything in place.

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
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, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2


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