Rectal cancer (Stage 3A) diagnosed late June 2017

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

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

Postby NHMike » Tue May 21, 2019 8:27 pm

I tried the Napolina capsules today so this is the third time that I've taken it. The first time was in the evening and the other two times were in the morning. The Napolina results in going to the bathroom about 8-10 hours later and, I think, doing a cleanout. The two times I took it in the morning, it did end up in a cleanout, but there was about four hours of clustering. The advantage of Nopalina is that it clears things out in a relatively short period of time. My digestive system normally takes about 36-48 hours to cleanout.

Most doctors that have suggested fiber have said that it takes a while for the fiber to work as the body has to get used to it. The doctors haven't had LARS though so for them, it's theoretical. Nopalina is flax seed, oat bran, wheat bran, senna leaves, psyllium husk and fruit extracts (for flavor I think). So I will try taking it in the mornings for several days and then try taking it at night for a week.

One person on the Facebook LARS group takes celery juice in the morning which provides a cleanout for her. I did some searching on it and didn't find any peer-reviewed research on it but some doctors and article indicating that it can be used to fight constipation. It suggested several other benefits but I will take them with a grain of salt absent peer-reviewed research. I do plan on trying it for a week. My wife said that I just need to bring it home and she'll make juice for me.

I spent a little time on the book and wrote this as the introductory paragraph. I just wanted to throw something up and want to do the outline next. Unfortunately I just have so many interesting areas that I'd like to cover.

Rectal Cancer survivors may have a variety of difficulties in elimination after a typical course of treatment. The difficulties start with the surgery called the ileostomy reversal or ileostomy takedown. The patient finds frequent diarrhea and a lack of control in elimination. The waste is also caustic and this results in burning and soreness.

There were two threads on the LARS forum about getting SSDI and the process that they went through. Exciting stuff on the forum. I still need to look at how it works at my company as I think that we have private insurance and I don't know how it works.
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: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon May 27, 2019 12:39 pm

Mike,
Did you ever have any internal pain, at site of anastamosis? My tailbone area is the place I have discomfort, just like after surgery. If so how long did it last? Anyone else want to weigh in here I would appreciate it. I find sitting down gets to be pretty uncomfortable, drove into Bay Area, about 2 and 1/2 hours, dropped off daughter at airport, did some shopping and drove home(actually husband did all the driving) and wow it knocked me out.
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

Eleda
Posts: 325
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 » Mon May 27, 2019 1:17 pm

I have a slight sting at the anastomosis site when passing poo or when it's dropped down into the rectum, nothing that is very bad, sometimes bleeding if I've had a day off clustering ( which are rare atm :D )

And a sting at the site of the illeostomy site when having to force a poo( all normal at this stage still id imagine!!!!
Pain in the tail bone shouldn't relate to ur surgery I wouldn't imagine :shock:
I've a full pain n my back that I normally would ignore, but its not going away so I'm going to the doc Wednesday,,,
I would have it checked out Susan because as we know we worry about the slightest thing after DX, so put ur mine at ease and go see someone about it
Sorry I'm of no help

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

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

Postby NHMike » Mon May 27, 2019 5:31 pm

Caat55 wrote:Mike,
Did you ever have any internal pain, at site of anastamosis? My tailbone area is the place I have discomfort, just like after surgery. If so how long did it last? Anyone else want to weigh in here I would appreciate it. I find sitting down gets to be pretty uncomfortable, drove into Bay Area, about 2 and 1/2 hours, dropped off daughter at airport, did some shopping and drove home(actually husband did all the driving) and wow it knocked me out.
S


I had that after surgery and I suspect that it was severed nerves firing. I do not recall how long it lasted but it was for quite a while and then those nerves quieted down.

I bought a special seat cushion that takes the pressure off of the tailbone and I used it while driving and sitting for long periods of time. It's on my office chair at home so I'm using it right 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

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Mon May 27, 2019 5:39 pm

Caat55 wrote:Mike,
Did you ever have any internal pain, at site of anastamosis? My tailbone area is the place I have discomfort, just like after surgery. If so how long did it last? Anyone else want to weigh in here I would appreciate it. I find sitting down gets to be pretty uncomfortable, drove into Bay Area, about 2 and 1/2 hours, dropped off daughter at airport, did some shopping and drove home(actually husband did all the driving) and wow it knocked me out.
S


I'm not sure if this is the same, my tail bone felt like it had been broken following my surgery. It's started hurting about 10 days following my surgery. I had to get one of those special donut hole cushion. Surgeon said it could take up to 4 months for the pain to go away. At it's worst, I could only sit for 15 mins, but it did go away, completely. Today I can sit on the cement chair and be fine.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Mon May 27, 2019 6:55 pm

Thanks everyone, I knew I could count on you. I have a special cushion I will use. Funny how many chairs I sit in that have little or no padding that I hadn't really noticed before or at least since radiation.
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

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

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

Postby NHMike » Wed May 29, 2019 3:01 pm

I had a horrible weekend with clustering and sleeping all the time but it appears that I came down with the flu.

The Nopalina Capsules seem to work better for me than the powder. It worked nicely last night (about an hour in the bathroom and done). I'm not 100% from the flu yet. I originally thought that it was allergies but someone came into the office with the flu two weeks ago (no sick days) and I interacted with the person for a while. Also, CDC map indicates that the flu is widespread in MA and regional in NH. MA is the only state in the country where flu is still widespread.
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: 80
Joined: Sat Dec 22, 2018 9:44 pm

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

Postby CF_69 » Wed May 29, 2019 6:35 pm

I’ve had horrible back pain that started a few weeks after surgery. More like pain in my left hip and calf. Tingling all up and down the leg too. I can’t walk very far without needing to stop. I lie on ice packs whenever I am home. Whenever I drive anywhere I turn on the heated seats.

I went to the hospital because initially I thought it could be a blockage, as I tend to be on the constipated end of the spectrum. I’ve told my surgeon, my two oncologists, and I’ve been to the regular doctor twice. Finally they are going to send me for an MRI to see what’s going on.

I’ve been going to a chiropractor/acupuncture physician for a few weeks as well. It is helping a little bit, mostly relaxing the tight muscles, but the pain is still pretty intense.

Post surgery walking seems to be what caused the flare up. I certainly wasn’t pushing myself too hard in the physical activity area.

I had a LAR just over two months ago. No ileostomy. As I said I have been more constipated than anything else. I actually had the biggest bowel clearance in quite some time last night. It was quite a bit of work to get it out but for the past two months I would pass what was waiting and that was it. I would have to stand up, shower and sometimes make it back to bed before the second act would begin.

I think the pain is the sacral nerve and has to be related to the surgery and constipation. I did have radiation x 25 too, so add that to the mix.

I’m eagerly awaiting the MRI and hope that they can figure out the cause of the pain and of course find me a solution.

It’s definitely having more of an impact on me than anything else at this point.

My tumour was in the sigmoid/rectosigmoid junction. I have just over half my rectum left, and no sigmoid according to the surgeon.

I did have a CT scan before surgery and an MRI on my liver / abdomen post surgery with no evidence of Mets. I had some small cysts they wanted to get a better look at. I would hope that they would have seen anything sinister in my back / hip if there were anything there.

I’m trying McKenzie stretches but it’s very painful to do and very hard to tell if they are helping at all.
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

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Wed May 29, 2019 10:09 pm

Late to the party but I too had a lot of pain initially whenever I sat down. I can’t remember when it passed but it took some time. I still drive with my cushion and I avoid hard seats at all cost. They seem to activate my bowels quite frequently. :roll:

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

Gloriamazz
Posts: 65
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

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

Postby Gloriamazz » Thu May 30, 2019 7:27 pm

Gravelyguy wrote:Late to the party but I too had a lot of pain initially whenever I sat down. I can’t remember when it passed but it took some time. I still drive with my cushion and I avoid hard seats at all cost. They seem to activate my bowels quite frequently. :roll:

Dave


Hi Dave, I wishI had Chemo after my LAR maybe I would not be sitting here with stage 4 colorectal cancel that is recurrent on my pelvis and several nodules in my lungs (2 old ones growing)and (2 new ones). Dr said tumor too low reason for all this pain

Good luck
June 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 31, 2019 9:45 am

Gravelyguy wrote:Late to the party but I too had a lot of pain initially whenever I sat down. I can’t remember when it passed but it took some time. I still drive with my cushion and I avoid hard seats at all cost. They seem to activate my bowels quite frequently. :roll:

Dave

Ditto that. Mike... are you running, exercising? I know how important that is to you. Oddly, I am eating and walking but finally losing weight. Hopefully not muscle as I haven’t been doing strength or core weeks for 6 weeks. Going to go back to Yoga with Adrienne today and start rebuilding. What are you doing for exercise, mental well being with all these obstructions?
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

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Fri May 31, 2019 10:38 am

Hi Dave, I wishI had Chemo after my LAR maybe I would not be sitting here with stage 4 colorectal cancel that is recurrent on my pelvis and several nodules in my lungs (2 old ones growing)and (2 new ones). Dr said tumor too low reason for all this pain

Good luck
Gloria,



So sorry you have to go back through all this. Are you at a major cancer center? If not I would get to one.

Praying for you.

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

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

Postby NHMike » Sun Jun 02, 2019 9:14 pm

Caat55 wrote:
Gravelyguy wrote:Late to the party but I too had a lot of pain initially whenever I sat down. I can’t remember when it passed but it took some time. I still drive with my cushion and I avoid hard seats at all cost. They seem to activate my bowels quite frequently. :roll:

Dave

Ditto that. Mike... are you running, exercising? I know how important that is to you. Oddly, I am eating and walking but finally losing weight. Hopefully not muscle as I haven’t been doing strength or core weeks for 6 weeks. Going to go back to Yoga with Adrienne today and start rebuilding. What are you doing for exercise, mental well being with all these obstructions?
S


My head is clear, I ran and played tennis today and did a lot of floorwork and machines yesterday that I hadn't done in a while. So I was sore this morning but it was a good sore. I have been getting thinner but maintaining weight. I've been doing heavier weights on the barbell.

Being able to workout means that I'm making progress. I just wish that I had more time for things. The clustering takes time from life.

I fasted from Thursday night until Saturday afternoon and haven't gone since Friday morning. I skipped the Nopalina and it looks like things will exit 36 hours. So the experiments with Nopalina were interesting. If I take it, then things pass 8-10 hours later with potentially a lot of clustering. If I don't take it, then things exit 36-48 hours later. So it gives me some flexibility on timing.
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 » Tue Jun 11, 2019 8:02 am

Colonoscopy was clean yesterday. I was still weak and tired this morning from the prep and procedure. I was in at 2:30 but they didn't have a bed for me so I sat around waiting for half an hour. There was no sedation this time but I did see the procedure on the monitor. I was dressed and heading out by 4:15 - they said to normally expect it to take about three hours. We walked a mile to the T station and walked another 1/2 mile. I was very hungry and tired and had a moderate dinner and got about ten hours of sleep.

Many may have anxiety about colonoscopies, especially the first time or if there are presenting issues - I was basically too tired to be anxious. It's been a marathon of stuff to do for 2019 for me and things are finally slowing down in life so I can have some down time. My oncologist has been bugging me about the colonoscopy for a while as my last one was two years ago.

I fast for three or four days a week regularly so I can manage the colonoscopy issue with the lack of calories. The cleaning out process, though, still tires me out.
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 » Tue Jun 11, 2019 8:25 am

I just read the attending report and everything looked normal. It's always interesting to see what they gave you for drugs.

The recommendation was for the next Colonoscopy in three years. I'll see what the oncologist recommends. I'm two years out from diagnosis and I think that annual is standard but I've seen protocols change quite a bit since I was diagnosed so there may be less testing in the future.

A cup of coffee with cream and I'm feeling a lot less tired from when I woke up.
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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