Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 18, 2019 9:45 am

18 months out from the end of chemo and I think that the Neuropathy issues are fading. It's pretty cold in the Northeast and my cold body bothers me but I don't really notice the toe tingles unless I think about it. They do tingle but I just don't notice it and they aren't painful like they used to be on a cold floor.
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 19, 2019 8:53 am

I took a probiotic on Saturday and one last night. It's possible that these things are great at evacuation as things went really well last night (after running) and this morning (again, after running). My sample size, unfortunately, is very small but I'll continue to take them to see if they're the cause for the improvements last night and this morning.

On probiotics, how often do you typically take them?
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

Gravelyguy
Posts: 263
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Tue Nov 19, 2019 12:04 pm

NHMike wrote:I took a probiotic on Saturday and one last night. It's possible that these things are great at evacuation as things went really well last night (after running) and this morning (again, after running). My sample size, unfortunately, is very small but I'll continue to take them to see if they're the cause for the improvements last night and this morning.

On probiotics, how often do you typically take them?



Hi Mike,

Glad the neuropathy is doing better. I had no issues this summer but now that it is starting to get colder, the bottoms of my feet tingle a little but no real big deal.

As to probiotics, I take them daily and at higher than maintenance dosage. I read some paper on LARS that theorized that the change in the angles of the colon after resection changed the amount of flora and the type that thrives. My theory is that the probiotic helps keep the kinds of bacteria the gut needs around.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 19, 2019 12:17 pm

Gravelyguy wrote:Glad the neuropathy is doing better. I had no issues this summer but now that it is starting to get colder, the bottoms of my feet tingle a little but no real big deal.

As to probiotics, I take them daily and at higher than maintenance dosage. I read some paper on LARS that theorized that the change in the angles of the colon after resection changed the amount of flora and the type that thrives. My theory is that the probiotic helps keep the kinds of bacteria the gut needs around.
Dave


I guess I'll take it daily for now. At some point, I need to consider the Prebiotic as well. It would be nice to replace the pill form with real food but it's a lot more convenient, though more expensive, to use the pills.
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

rachelfromnyc
Posts: 22
Joined: Fri Oct 04, 2019 11:32 am

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

Postby rachelfromnyc » Tue Nov 19, 2019 2:50 pm

Hi Mike- I take probiotics daily in two doses, morning and evening. I also take digestive enzymes before meals.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 19, 2019 2:56 pm

rachelfromnyc wrote:Hi Mike- I take probiotics daily in two doses, morning and evening. I also take digestive enzymes before meals.


I will keep that in mind. I'm going to stick with once a day for now and will have to decide on experiments with prebiotics after current experiments. If the probiotics work out well, then there's less motivation to try 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; 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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Nov 24, 2019 8:38 am

I got in 24 miles of running. Yesterday was a clustering day. It is nearly impossible to run on a clustering day. I took Miralax in the early afternoon and it cleaned me out by nighttime. I hadn't really been taking Miralax as much as I was experimenting with the Probiotic but it's clear that I need to take Miralax daily to prevent accumulation.

I haven't done 24 miles in a week since before diagnosis (previous high was 21) so that's encouraging. I'll try to get in 24 again this week and see how I do. I am trying to do intervals mixed in with low-intensity running. Low-intensity running is where you can just keep going and going. It does improve cardiovascular health and stamina.

Interval training is for higher-intensity and it can make your heart stronger more quickly. It will also burn more calories. But it's not the most pleasant of things to do. Sometimes I just don't feel like I can do it either. My Garmin has something called Recovery Time and you're not supposed to do intense workouts during the recovery time. I guess I can understand the metric. I don't know how it computes Recovery Time though. Sometimes it's as long as 36 hours.
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

CF_69
Posts: 90
Joined: Sat Dec 22, 2018 9:44 pm

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

Postby CF_69 » Sun Nov 24, 2019 11:03 am

I haven’t taken any probiotics but I did start drinking kefir and eating sauerkraut. I think it helped.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Nov 24, 2019 11:21 am

CF_69 wrote:I haven’t taken any probiotics but I did start drinking kefir and eating sauerkraut. I think it helped.


Kefir is a source for probiotics (for those that don't know).
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

CF_69
Posts: 90
Joined: Sat Dec 22, 2018 9:44 pm

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

Postby CF_69 » Sun Nov 24, 2019 3:29 pm

I read they were prebiotics and that your body may not actually like probiotics and could attack the bacteria as an invader but of course I do know that everyone reacts differently and there’s a lot of bro science with health supplements too.

Seemed to help.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Nov 24, 2019 4:46 pm

CF_69 wrote:I read they were prebiotics and that your body may not actually like probiotics and could attack the bacteria as an invader but of course I do know that everyone reacts differently and there’s a lot of bro science with health supplements too.

Seemed to help.


Yes, Prebiotics. I guess spellchecker switched it on me.

There are primarily two types of probiotics in the commercial stuff. Prebiotics feed what you already have in your gut.
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Nov 24, 2019 7:47 pm

I didn't feel like running today but I went to the YMCA and ran a mile around an indoor track (weather was awful today). I much prefer an indoor track to running on the treadmill. My YMCA has limited hours though. Several years ago I did a "streak". Run at least a mile every day for a year. Total miles was 1,542. It was truly a year of running for me (I realize that there are people that run far more than that). Running at least a mile a day would be a good goal for 2020.

I'll get in some Yoga and bodyweight stuff this evening. I usually don't do that much on Sundays as it's an errand day.
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: 352
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Thu Nov 28, 2019 1:50 am

Hi! It is always hard to run after a period of stop. Here it is very icy and I prefer to run outside with my dog while the kids are running indoor. So it is more a matter of balance and trying to see the slippery spots in the darkness. :)

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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Dec 02, 2019 11:28 am

Atoq wrote:Hi! It is always hard to run after a period of stop. Here it is very icy and I prefer to run outside with my dog while the kids are running indoor. So it is more a matter of balance and trying to see the slippery spots in the darkness. :)

All the best

Claudia


I imagine your dog provides a lot of motivation to run.

I got 25 miles in last week. I ran 7 on Wednesday and 8 on Thursday and was wiped out for a few days afterwards. I played tennis on Friday as well but I didn't play so well. So I can do 30 or 40 but my body will protest. So probably a good idea to keep things around 21-28 miles per week.

I got a VO2Max reading from the Garmin at 40. I checked the table and 40 is an Excellent score for my age range. I'd need to get to 44.2 to get to the Superior category. Of course I had a look at the numbers for the 50-59 age range and my score is only Good for that age range. It's also Good for 40-49 and only Fair for 30-39. So I'm in good shape compared to my age peers but I should really work on trying to get it higher to compare myself for say, 40-49. What the table really tells me is that cardiovascular health drops off sharply after 50 years for men which I guess shouldn't be surprising.

I spent about 75 minutes clearing snow this morning. We had about a foot of snow and it was heavy and wet. What I noticed is that it was quite a bit easier this year than last year and I attribute that to the barbell work weight increases this past summer. In general, I haven't noticed the additional strength (outside of moving a window air conditioner), because I normally don't lift a lot of heavy things in regular life. But it is nice to feel the strength when it gets used. I also assume that the additional strength decreases injury risk.

I really do not like running on snow or ice because of the chance for injury. I don't mind running when it's cold or windy so much as I have clothes for that. If you can manage it, then you have a lot more options for running. Though I suppose that when your dog wants to go, you have to go outside.

I got some more wild blueberries this past week. I don't know if they help though I do not have to fast as much if I use Miralax every day.
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

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

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

Postby AmyG » Mon Dec 02, 2019 3:21 pm

Just dropping by to say that I really enjoy reading your updates on your life :D You're an inspiration!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!


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