Rectal cancer (Stage 3A) diagnosed late June 2017

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Sun Jul 07, 2019 6:14 am

Hi Mike
I saw my surgeon last week and asked him about taking the bicarb
He has no problem with it, in fact he prefers me to go once a day instead of 25times ( because of my fisture) as long as I check my calcium and kidney Which I do and are fine ,, !!!!
I'm only 3 months our and I have no idea how ur coping because I can't deal with clustering and this is my only way of normality, and it's pretty non Invsive
, (and productive)
You should look Into trying it or anyone else who is suffering from clustering or unpredictability,,,

Its givin me back normality
Adele x
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 10, 2019 8:15 am

40 ours of GI peace and it has been so suite. My Garmin says my stress levels are way down this morning at 21. The high was in the mid-60s a few days ago. I expect to go to the bathroom within the next four hours (it will be 48 hours since I started eating on Monday in four hours). I gained about 38 pounds on XELOX and have dropped 36 of it. I will start worrying more about weight loss if and when I get to -48. My clothes are noticeably looser (I've gone down two sizes) and my wife complimented me on how I look (compliments from spouses on appearance have been rare 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; 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: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jul 15, 2019 7:30 am

It was a horrible weekend and this morning but those things happen. Takeaways:

- Get back to fasting more diligently
- Get enough sleep so that I wake up if there's a signal or go back to setting an alarm at 3:00 AM
- Eat smaller meals

The Nopalina seems to be a net benefit in getting things out faster.
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

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Mon Jul 15, 2019 3:27 pm

Mike i can't believe your still having such a rough time this long out, makes me wonder if the bag is the best options when people lose there rectum. It just sucks
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 17, 2019 7:38 am

I fasted from Sunday night to Tuesday night as I had to present at a Planning Board meeting. Then I had a little dinner at 9 PM and woke up at 3 AM because of signaling. Things were not bad and I'm likely empty again. So six hours transit time with Nopalina and an empty GI system. This suggests that I should eat breakfast or lunch and that's it.

I gained 38 pounds on Adjuvant Chemo and have lost 37 in the past year. It strikes me that I could lose another 30 pounds for an overall loss of 1/3rd bodyweight which would imply 1/3rd of the required amount of food. From history though, a weight of 150 pounds would be a waist size of about 26 inches on me. Sounds a bit crazy but those kinds of thoughts run through my mind when I have really bad days.
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

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Wed Jul 17, 2019 9:20 am

Mike I thought I was the only one ever gained weight on adjuvant chemo, lol
I gained 30lb, lost it again and now gained again
( Story of my life ) if I cold fast it would be great and I'm rather fond of a nice glass of vino ( or 5 lol )
But since I'm back on all fiber again I'm sure I'll loose it again.
I've given up work to look after myself now so once I'm back from Spain.
I'll b back to slimming world and hitting the gym
Jesus it takes a while to get back to (new )normal

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 19, 2019 4:46 am

Eleda wrote:Mike I thought I was the only one ever gained weight on adjuvant chemo, lol
I gained 30lb, lost it again and now gained again
( Story of my life ) if I cold fast it would be great and I'm rather fond of a nice glass of vino ( or 5 lol )
But since I'm back on all fiber again I'm sure I'll loose it again.
I've given up work to look after myself now so once I'm back from Spain.
I'll b back to slimming world and hitting the gym
Jesus it takes a while to get back to (new )normal

ADELE X


It is difficult to work with this condition. Right now I set alarms to go to the bathroom twice in the middle of the night to avoid accidents. This reminds me of when I had the ileostomy.

I spoke to my son about his work and they do blood assays now in addition to tumor biopsies. They have been doing this for years. So I guess that there are additional ways to detect cancer and the types. It’s amazing how fast technology moves.
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: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 19, 2019 9:47 am

I was a bit grouchy because of time pressure. I took my son to the train station (1.5 hours), had 2.5 hours in the bathroom and there's a guy that comes into the office to chat for 30-45 minutes every day. My son had a lot of trading questions and I normally would love to answer them because I really want him to get into it but it's just a bad day. Today I did something that I've never done. I locked my door and have headphones on. Most people respect the closed door but this one person just comes into my office and talks about his kids, the stock market, his injuries, his trips and I just have work to get done and I'm already at a disadvantage every day (when I'm not fasting) from LARS. End of rant.
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

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Jul 19, 2019 11:11 am

Mike,
You mentioned it is worse after fasting? Does anything make it better? I have had a rough week after doing well for about a month. I thing it is all the summer veggies we eat every night from the garden. I even took two fiber capsules yesterday to slow, bulk things up, no better. I find the gas to be awful, and sounds that come from deep in my gut that I never had previously. Do you have any of these experiences? What about pain on your tail bone?

Susan
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Fri Jul 19, 2019 11:18 am

Susan
Red wine ( apparently) gives me awful gas
Really bad
And I find too much veggies also
Which for me is difficult because
1x I love them
2 x helps me loose weight , Because I'm a little fat apparently lol


Its hard to defrenciate sometime for me with taking the bicarbe, nothing seems to be. Problem( because I know it's put next morning). Veg, hot sause, burgers etc,,,
I'm going to try take it at night when I get home from holidays to see how that works

Hope ur good Susan

Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Jul 19, 2019 11:21 am

Thanks Adele. I am good, working, busy but the bathroom trips are an issue. For me it is in the evening so I can go to work, hike, travel but prefer to be home for bathroom rooms every night. We haven't gone camping because I don't fancy a thousand trip to the outhouse, etc. The gas is literally explosive at times.
I joked with my family that I am the only person that goes through chemo and doesn't lose weight.
S
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 19, 2019 11:48 am

Caat55 wrote:Mike,
You mentioned it is worse after fasting? Does anything make it better? I have had a rough week after doing well for about a month. I thing it is all the summer veggies we eat every night from the garden. I even took two fiber capsules yesterday to slow, bulk things up, no better. I find the gas to be awful, and sounds that come from deep in my gut that I never had previously. Do you have any of these experiences? What about pain on your tail bone?

Susan


No, it's fine after fasting. It just happened to go through faster than I expected.

Gas is awful today but I'm not giving up beans.

I don't have tail bone pain. But maybe the Squats and Deadlifts help out there.
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

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Fri Jul 19, 2019 12:14 pm

Susan
I was the only one in the chemo room getting fatter bye the week ( IT EAS LIKE SLIMMING WORLD WEIGH IN DAY FOR ME :x ........
This is awfull but ( I think weigh loss is the only plus to cancer ) .emmmm
NO APPARENTLY........ IM still fat lol
Again as I said to Mike truly the bicarbonate, u have nothing to loose but lots of poo lol

Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 19, 2019 12:19 pm

Eleda wrote:Susan
I was the only one in the chemo room getting fatter bye the week ( IT EAS LIKE SLIMMING WORLD WEIGH IN DAY FOR ME :x ........
This is awfull but ( I think weigh loss is the only plus to cancer ) .emmmm
NO APPARENTLY........ IM still fat lol
Again as I said to Mike truly the bicarbonate, u have nothing to loose but lots of poo lol

Adele X


GravelGuy mentioned BioClense which has Sodium Bicarb. I'm not willing to try a lot of things right now because I'm under a lot of pressure at work to get stuff done before leaving (whether by retiring or going out on disability). It is very hard to experiment under time-pressure as something going drastically wrong can be catastrophic. I think that I really needed a long break to try things out but we're just under a lot of pressure to get things done.
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: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jul 20, 2019 9:44 am

I had three Frescas the day before the really awful weekend. Fresca has Apartame and that may be the cause of the big problem days. The building manager likes Fresca so he added it to the drinks stocked at the office. I asked one of the Admins to stock Zevia and we'll see what happens. I have had Zevia in the past and don't recall problems with it.

This was actually a nice week except for Sunday (terrible) and Monday morning. But that's because of all of the fasting.
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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