Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 7:48 pm

I got in. The Facebook Group also has a website now with LARS management tips:

https://livingwithlars.com/

I still want to write a book when I have the time.
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: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 8:03 pm

They have a user guide at https://livingwithlars.com/?fbclid=IwAR ... ViXwT4DGi0

The group doesn't appear to be as active as it was the last time I was there. The owners of the group are from NH - though it's a big state.
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: 648
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 03, 2019 8:07 pm

Mike,
What kind of problems are you still having? I am two weeks out. Not going too far or too long away from house but so far so good.
Susan
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

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 8:10 pm

Clustering and being tied to the bathroom; or not having control at times. Obstructions - average of about once a 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; 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: 648
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 03, 2019 9:16 pm

At my appointment yesterday, telemedicine, a squatty stool and psyllium . Start small. I am just so grateful to sleep all night but that’s also when stuff sneaks out. She suggested changing what I eat and when as well. Sticking to low residual diet and adding a few things every day.
I planned this for the end of school year so that when leave is done I only have to work about 16-20 hours a week until August.
Susan
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

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 03, 2019 9:22 pm

Caat55 wrote:At my appointment yesterday, telemedicine, a squatty stool and psyllium . Start small. I am just so grateful to sleep all night but that’s also when stuff sneaks out. She suggested changing what I eat and when as well. Sticking to low residual diet and adding a few things every day.
I planned this for the end of school year so that when leave is done I only have to work about 16-20 hours a week until August.
Susan


You're a college professor?
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: 648
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 03, 2019 11:43 pm

No, a pediatric occupational therapist I see kids full time during the school year, part time in summer. Birth to 21, so it can be physical, unpredictable work. After chemo I had a lot of pain, struggled to get on and off floor, struggled with squatting but found that turmeric tablets helped. I know there is an answering with this bowel stuff but so much changes on a daily basis, food, exercise, water and tension. Stress is a contributing factor I am sure.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

User avatar
susie0915
Posts: 917
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 » Sat May 04, 2019 7:04 am

Mike,
I wonder if you spoke with your surgeon again about trying enemas now that you are coming up on a year out from reversal. I have been using them everyday for 2 years with very good success. It's only a few cups of tap water, takes about 30-40 minutes and I'm good for the day. It has allowed me to have a normal life. I know many want to try to get LARS under control naturally, I tried for 15 months. When the GI at the bowel control clinic suggested enemas I had never even thought about it. Another suggestion he had was to take miralax daily with the idea of getting a clean out at one time. I chose the enemas as I had more control of when I used the bathroom. I told my surgeon, oncologist, and general practitioner and all were fine with me doing them. Just a suggestion, I know how frustrating LARS can be.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6
5/19 CT NED, CEA <.5

Eleda
Posts: 286
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 » Sat May 04, 2019 9:26 am

Hi Susie,
I think u mentioned in another post not to use fleet enemas...!!!!
Can I ask why???
I'm under pressure ATM with work and taking bicarbonate every morning otherwise I can't leave the house with clustering,, and sore bits from wiping,,,
I know it's early days and prob shouldn't but I've no choice ATM
Thanks 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: 648
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun May 05, 2019 12:43 pm

One of my friends who had a reversal said she felt the single worst problem for her was stress. She noticed that it made everything worse and then things keep building on it. I definitely notice pain inside where staples are I assume but the bidet helps with the clean up and actually seems to stimulate things for an almost immediate 2nd bm so I don't even get up.

Susan
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

User avatar
susie0915
Posts: 917
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 » Sun May 05, 2019 5:17 pm

Eleda wrote:Hi Susie,
I think u mentioned in another post not to use fleet enemas...!!!!
Can I ask why???
I'm under pressure ATM with work and taking bicarbonate every morning otherwise I can't leave the house with clustering,, and sore bits from wiping,,,
I know it's early days and prob shouldn't but I've no choice ATM
Thanks Adele X


Plain water is all that is needed and safe for everyday. The chemicals in fleet enemas used daily could harm the colon. I think it would be okay to empty the fleet bottles and replace with water and use that way. I have been using everyday for 2 years and works very well. Only takes 30-45 minutes in the morning and done for the day until next morning. I began doing them 15 months after reversal. There are other posts here from others that use enemas as well. Typing enemas in the subject section should give you more information. Irrigation is becoming more accepted as a solution for those suffering from LARS. The facebook page for those suffering from LARS is very helpful as well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6
5/19 CT NED, CEA <.5

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 07, 2019 2:27 pm

Caat55 wrote:No, a pediatric occupational therapist I see kids full time during the school year, part time in summer. Birth to 21, so it can be physical, unpredictable work. After chemo I had a lot of pain, struggled to get on and off floor, struggled with squatting but found that turmeric tablets helped. I know there is an answering with this bowel stuff but so much changes on a daily basis, food, exercise, water and tension. Stress is a contributing factor I am sure.
S


I think that a big part of my problem was not taking a long break after the reversal - basically diving back into life didn't give me time to explore the approaches to improve quality of life. I can manage but it isn't easy. I think that a lot of other busy people have the same problem.
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: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 07, 2019 2:31 pm

susie0915 wrote:Mike,
I wonder if you spoke with your surgeon again about trying enemas now that you are coming up on a year out from reversal. I have been using them everyday for 2 years with very good success. It's only a few cups of tap water, takes about 30-40 minutes and I'm good for the day. It has allowed me to have a normal life. I know many want to try to get LARS under control naturally, I tried for 15 months. When the GI at the bowel control clinic suggested enemas I had never even thought about it. Another suggestion he had was to take miralax daily with the idea of getting a clean out at one time. I chose the enemas as I had more control of when I used the bathroom. I told my surgeon, oncologist, and general practitioner and all were fine with me doing them. Just a suggestion, I know how frustrating LARS can be.


I see her next week and will ask her about it.

BTW, I have tried out a few bags recently.

I have the little Coloplast sample bag that I've used since August I think. It holds my three peristaltsis bottles, some wipes, some pads and a plastic bag. It's quite compact. I was putting it in a gym bag with an adult diaper, more bottles and a lot of pads but the gym bag was too big and everything just sprawled in the one big compartment. I tried a camera bag but it wasn't tall enough for the bottles and I bought a medical bag which is somewhat large but it works well. It has bottle holders for four bottles so they don't lie on the side and leak and there's room for two diapers and a package of wipes. There's a compartment in the front for pads and bags and an open pocket in the back where I put a phone or an iPad. So this is my bathroom bag and I've been using it for two days and it works better than the others.

It means I can reclaim my gym bag for going to the gym.
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: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 07, 2019 2:33 pm

Eleda wrote:Hi Susie,
I think u mentioned in another post not to use fleet enemas...!!!!
Can I ask why???
I'm under pressure ATM with work and taking bicarbonate every morning otherwise I can't leave the house with clustering,, and sore bits from wiping,,,
I know it's early days and prob shouldn't but I've no choice ATM
Thanks Adele X


I carry the peristaltsis bottles so it's like a portable bidet - it greatly reduces friction.

I have a barrier cream that I use if things get really raw but I haven't had to use it since 2018.
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: 1940
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 07, 2019 2:34 pm

I scheduled the colonoscopy for June. I see the oncologist next week - he might yell at me as he told me to get one three months ago. It was just a hectic three months which I didn't look forward to. At any rate, it's scheduled. It should be fairly easy as I'm fasting one to two days on a regular basis now.
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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