Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 12:39 am

Okay, a big meal is not a good idea. I do recall this from the discharge instructions: eat six small meals per day.

In my case, the problem was overflowing diapers. On a positive note, things came out a lot sooner than I expected and things are a lot darker indicating that the diarrhea is starting to fade.

But I spent 2 1/2 hours going to the toilet, cleaning myself up, cleaning up the bathroom, unclogging a toilet and just generally trying to think of where I could get to a point where I didn't have to worry about making a mess wherever I went to do something. At least I have a lot of supplies. Though I should probably get some wipes tomorrow.

So:
- No big meals
- Maybe two small ones spaced apart
- Back into semi-starvation mode
- I will need to factor doing more laundry and spending a couple of hours a day dealing with the aftermath

I hope that this was it and that I don't get this again in the morning. I need to order Chux from Amazon too.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 7:45 am

I had to deal with that for a total of four hours last night and was distraught but my wife calmed me down in a few minutes and I went to sleep and woke up this morning feeling pretty good.

It appears that there was very little left to expel so I'm feeling decent as the food last night gave me fuel and I don't have to worry about bathrooms. At least I hope that I don't. Everything is coming out fairly dark and less liquidy so I think that that's progress. I will take one last dose of Pepto this morning.

I spent a little time cleaning out one of the medicine cabinets and found a bunch of 3x3 sterile pads.

The doctors used 3x4 and the nurses gave me a bunch of 4x12s to take home and I have been cutting down the latter. The reason for the 3x4s is that there's the big stoma hole and then there was a small hole to the right of it which was open. That hole has now closed so I don't need as much coverage. So I'll use up the 4x12s and I have about 45 of the 3x3s which I think should last but I can always get 3x3s from CVS. It seems that drug stores only carry 3x3 in regular gauze and 3x4 only in non-stick gauze. I looked at the pricing of paper tape at Amazon and it's about 1/6th of what the local drugstores cost. I have a package of six rolls in my cart.

I want to put the illeostomy supplies in storage for a bit until I can decide what to do with them so that we're not using current space for the products and better use current space for the reversal stuff. I find it helps a lot to have your supplies stored in a handy way to make any processes more efficient.
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; 9/8: 1.8; 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
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

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susie0915
Posts: 872
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 » Wed Aug 08, 2018 8:59 am

I hope things continue to improve Mike. I am sure your surgeon will advise you to take some fiber to bulk up your stools. That seems to be the first step.
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 9:07 am

I'm in my office right now and I actually feel absolutely great. I have food reserves from last night, I feel reasonably rested, I don't have to worry about bathroom issues for the day and I put on a shirt a size smaller than I usually wear because I've dropped 20 pounds (not necessarily for the right reasons) and I don't have the illeostomy bump. That's quite a reversal from earlier this morning and I suspect that this is going to be a thing of highs and lows. I moved the ostomy supplies bag from the bedroom to the basement and need to bring home the supplies that I have in my office.

I also need to dispose of the excess Xeloda pills - so I'll watch for drug disposal day at the police station.
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; 9/8: 1.8; 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
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

Foreveryoung
Posts: 15
Joined: Thu Jun 22, 2017 9:39 am

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

Postby Foreveryoung » Wed Aug 08, 2018 9:16 am

I would check with surgeon before incorporating fiber back into diet. I was put on a low residue/fiber diet for two weeks after my reversal. Since two weeks just passed, they are allowing me to slowly incorporate fiber back into my diet. I'm still taking colace so I don't strain while having a BM.

Not sure if this helps, I still get 20+ BMs but I only eat big meals. I've been on an intermittent fasting diet since I read about Dr. Yoshinori Ohsumi's 2016 Nobel Prize in Physiology or Medicine.
33 y/o M DX June 2017 (RC lower)
Rectal adenocarcinoma (T3N0M0)
CAPOX - 3 months (OX chemo every three weeks, followed by two weeks daily CAP pills)
chemoRT - 25 daily sessions
LAR robotic with temp loop ileo - April 4, 2018
0/23 Nodes
Illeostomy reversal - July 25, 2018
8.0 cm from AV
4.3 cm from sphincter complex
CEA [2.5 on 8/17; 3.7 on 3/18; 2.8 on 6/18]

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 9:29 am

Foreveryoung wrote:I would check with surgeon before incorporating fiber back into diet. I was put on a low residue/fiber diet for two weeks after my reversal. Since two weeks just passed, they are allowing me to slowly incorporate fiber back into my diet. I'm still taking colace so I don't strain while having a BM.

Not sure if this helps, I still get 20+ BMs but I only eat big meals. I've been on an intermittent fasting diet since I read about Dr. Yoshinori Ohsumi's 2016 Nobel Prize in Physiology or Medicine.


Thanks for the note. My diet is normally high-fiber but I'm very cautious and the default of eating nothing makes that choice easier. I have labs tomorrow and an appointment with the oncologist on Friday. I'm hoping that they don't have to do the normal stuff that was done at the hospital last week. The oncologist's main area of concern is the CEA and it's mine as well. So a lot of anxiety going into that meeting (the number is embargoed from the hospital portal so I can't see it ahead of time). I will have to plan food so that I don't have waste output during those two times. Then meeting with the surgeon for the post-op next Tuesday. It's an hour drive early in the morning and I'll have to do the usual planning so that I don't have to stop to find a bathroom. That can be hard to do at 4 AM.
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; 9/8: 1.8; 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
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

Caat55
Posts: 543
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Aug 08, 2018 9:59 am

Mike,
Your CEA like mine have all been in normal range so what are they looking for with the tests? Spread?
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

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 10:21 am

Caat55 wrote:Mike,
Your CEA like mine have all been in normal range so what are they looking for with the tests? Spread?
S


The last one was above the normal range but normally not enough to worry about. The concern was the trajectory.

It was enough of a concern to order a CT which was clean.
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; 9/8: 1.8; 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
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

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mobrouser
Posts: 110
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Wed Aug 08, 2018 10:38 am

NHMike wrote:.....I also need to dispose of the excess Xeloda pills - so I'll watch for drug disposal day at the police station.


Don't pharmacies in the US take back unused prescription drugs? I did it with meds prescribed before my diagnosis.
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 10:51 am

mobrouser wrote:
NHMike wrote:.....I also need to dispose of the excess Xeloda pills - so I'll watch for drug disposal day at the police station.


Don't pharmacies in the US take back unused prescription drugs? I did it with meds prescribed before my diagnosis.


My insurance company, United Healthcare, requires us to use a Mail Order Pharmacy (which I hated). They had me acknowledge, with every order, that I knew that they wouldn't take back drugs. That's why the local police department does it once a quarter.
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; 9/8: 1.8; 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
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

cbsmith
Posts: 75
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

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

Postby cbsmith » Wed Aug 08, 2018 12:41 pm

In Canada you can take back medicine to any pharmacy regardless of where it was purchased. Not sure if it is the same where you are or not.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 08, 2018 2:53 pm

I had control during the day. Yes, I was wearing a diaper but it turns out that I didn't need to.

I had one time where I felt the urge but waited 30 minutes to go to the bathroom because I was working on something, then went to the bathroom, and a fair amount came out. So I'm about back to before the diarrhea hit. The beginning was small pieces clumped together and some very soft pieces that sometimes stayed together and sometimes came apart. It actually felt like the real thing (before illeostomy). So this is really good. But just for 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; 9/8: 1.8; 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
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

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susie0915
Posts: 872
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 » Wed Aug 08, 2018 3:08 pm

This is good to hear. I was told to hold as long as you can as this will strengthen your muscles as well. Hopefully, this is the start of the road back to some sort of normalcy for you. I'm glad you had a good day.
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

Jannine
Posts: 90
Joined: Wed Jun 20, 2018 7:46 am

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

Postby Jannine » Wed Aug 08, 2018 5:15 pm

I'm so relieved that you had a good day. I have been reading your journey avidly, and I hope things keep improving at a steady pace. It sounds like you're doing what you need to do. I'm rooting for you!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 09, 2018 6:19 am

I set alarms at 12:15 AM and 2:30 AM in case I needed to go to the bathroom and was too tired and I did wake up but no events at it's 7:00 AM now (I'm in the office). In general, my preferred time to arrive is around 5:00 AM and doing that indicates that I have my act together but I'm not quite there yet. The food in my GI system for so long indicates that the GI system is doing its thing and absorbing water or maybe I ate so little that there's nothing pushing on it to come out. And any rate, I feel really good again this morning which is good because I have a ton of work to do.

My manager indicated that I could take this week off but also gave me a list of things that I need to get done in the next two months that's considerable. The office is nicer because it's easier to hydrate and it's a lot neater than my home office right now. I have mail piled up and remnants of treatment supplies and some electronics projects that have been stalled. I hope to address the clutter at home when I have my full strength back in a few weeks.

Yesterday I felt a bit like a musical. There were a few times when walking down hallways quickly where I felt like breaking into a run (in musicals, they break into song). It wouldn't have been really appropriate to run in the office hallways though. But I'm eager to get back to running again - I just know that it's not time yet - I think that my body would handle it just fine except for my abs. So I'll just stick to walking. I will increase the pace but that's about it. I haven't hit the weights yet and I'm so busy that I might just leave them until the end of the month. Getting in and out of the car and getting out of bed is fine now.

The only other main weight issue is doing laundry but I may be able to finesse the issue using more trips with smaller baskets. A large basket of wet laundry can weigh over 30 pounds so carrying that around probably isn't a good idea. I normally bring a laptop in a backpack that weighs about twelve pounds and a duffel bag that weighs between ten and twenty five pounds. This morning it was ten pounds (it has change of clothes, diapers, pads, cleaning wipes, lock, first-aid kit, wired headset, wireless headset and other assorted things). So I brought in at least twenty pounds but no physical stress at all.

We'll see how things go with the first BM today but so far, so good. I think that I would have been at this place last weekend if I didn't get the stomach 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; 9/8: 1.8; 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
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


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