Rectal cancer (Stage 3A) diagnosed late June 2017

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Gravelyguy
Posts: 60
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Sun Oct 14, 2018 9:25 pm

Glad the control is coming back, Mike!

It is strange how that sneaks up on you. I am to the point that I am not even bringing my emergency supplies sling bag with me much anymore. I am still not quite to normal but 90% of the time am back to feeling pretty normal. I haven’t worn a man diaper in months. I do wear padding but only for just in case.

I am a cross country coach and bathrooms can be at a premium at meets but no real issues.

It will keep getting better!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Oct 15, 2018 10:05 am

It turned out to be a tough weekend but probably being tired from the running. 15 miles does not seem like much and I ran 40 miles easily the week before diagnosis - but it's really tough on the comeback trail.

I did plan to run yesterday but my daughter got stuck in the bathroom. The door bolt mechanism froze and it took us 2.5 hours to get her out. None of the usual tricks worked - credit card, butter knife, screwdriver to unlock from the outside. The mechanism freezing up is relatively rare but it is a potential design fault. I found a post on the internet - basically use a big screwdriver to crack open the bolt assembly and then use pliers and screwdrivers to pull out the pieces and the door opens. Then I went to Home Depot to pick up a replacement set.
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Oct 30, 2018 6:50 pm

Things seem to still be ups and downs but I'm making progress. Imodium two days in a row control things quite well and then the stools are harder the third day but that may be a formula for decreasing the duration of bathroom trips.

I ran three miles yesterday and two miles today and that felt good. I've also been doing barbell workouts regularly and miscellaneous other exercises. I did feel some stoma-area stress for a while but these seem to be abating. I don't know whether it was surface skin stuff of below or just normal soreness from exercise though I could get tweaks just getting off the sofa or out of bed.

I've been focusing on getting more sleep and getting my resting heartrate down and making progress on both of these. I think that the shorter days help because there are more dark hours and it's easier to sleep. Running will get the heartrate down and it has the side benefit of shaking your intestines so that the flow is better. I can better predict bowel timing too though I'm only running in the gym or on an indoor track these days as I'm only ten to twenty seconds from a bathroom.

There's been so much bowel stuff to deal with in the beginning and it's nice to be able to focus on other aspects of health that will improve quality of life.
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Oct 31, 2018 8:19 am

One of those mornings. I went to a car maintenance appointment with my laptop and bag intending to work while waiting for my car. I had one of those mornings and they only had one bathroom stall and I used it for quite a while so someone wanted to clean the bathroom so I exited and hoped for the best. That didn't happen but I didn't want to tie up the place so I just went back to the office (ten minutes away) and did a thorough cleanup. It's a personal reminder to keep my bag stocked. I suspect that I should have taken an Imodium this morning.

I have a dentist appointment next week. My plan is to not eat anything for 18 hours before the appointment and take an Imodium that morning. Same thing with my doctors appointments the following week. These adaptations are not pleasant sometimes.
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 02, 2018 9:56 pm

I decided to remove the barrier products from my bathroom kit - that's Cavilon Spray, and Cavilon Cream and Neoprene Gloves to apply any creams. I haven't needed the barrier products in a month and think that I can manage things without them. I've also been beefing up the strength stuff in increasing weight loads - not what I was doing before but enough to see progress. You can tell when you're building muscle when you get fine, little cuts here and there.

I'm trying to work in abs exercises - try something and stop if it hurts. There are some machines at Planet Fitness which are helpful - abs machine, rotary torso, adductors, abductors. I do crunches at home and in my office and just today tried Russian Twists. Also did a plank but could only hold it for 15 seconds before I started to worry. There are several other exercises that I used to do on a regular basis (mountain climbers, brazilian crunch, side planks, etc.) but will have to add back very slowly if at all. I will certainly ask the surgeon about this stuff as it would seem like the area should have healed by now - but maybe it's one of those things that takes quite some 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; 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: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Nov 04, 2018 11:56 pm

Mike,
Ab work. I notice my stomach is a little bulgy on ileoside, concerned that doing ab work could cause some issues, hernia at site of stoma. Did you notice anything like that, here it mentioned anywhere?
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 05, 2018 10:38 am

Caat55 wrote:Mike,
Ab work. I notice my stomach is a little bulgy on ileoside, concerned that doing ab work could cause some issues, hernia at site of stoma. Did you notice anything like that, here it mentioned anywhere?
S


It's a concern. I think that the skin needs to heal up and it looks like it's going to take quite a while. I had expected it to be healed up by now but it looks like a long, slow process. My fitness center manager (who had hernia surgery this past spring) and someone else mentioned it to me a while ago. She gave me the card of a PT with expertise in this area but I haven't called her - just too much going on in my life with work and home stuff. One big thing on my todo list is house maintenance. Tomorrow is my first dentist appointment in a year too. I went just before chemo started late 2017.

Strength gains are coming pretty fast with the barbell exercises. I'm getting to 85% with some exercises and 65% with others - these are barbell exercises. I never really did bodybuilding levels of weight - just enough to get an overall good muscle workout. Doing four barbell exercises is a good way to get a lot of coverage in a short period of time if you have a good setup.

Image

Squats

Image

Bench Press

Image

Shoulder Press

Image
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 06, 2018 10:24 am

I ordered a bunch of Imodium tablets and opened one of the new ones and it was a lot smaller. It turns out that I had been buying Imodium which has two ingredients (anti-diarrhea and anti-gas). The stuff I just bought was Imodium A-D which is just anti-diarrhea.

Also, I've been finding more papers on LARS and I may be able to put together something with more research documentation with these papers. The research papers may be useful for some but they tend to not be friendly to the average reader.
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Nov 10, 2018 5:42 pm

I've been increasing the weight resistance and am up to 150 pounds on the deadlift and 75 pounds on the shoulder press and squats. It's not a lot of weight but it's quite a bit more than when I started out.

I also did side planks today for 20 seconds. That's pretty weak but I haven't done them in a long time. So I'm adding exercises here and there - but I'm being very cautious.

One thing that I've noticed is that there seems to be a relationship between exercise and how the body manages the GI system. It feels like running has a similar effect to Imodium in that it draws water out of waste and slows the process down. That isn't necessarily bad on providing control but it can make it harder to evacuate.

Yesterday I went about ten hours without Depends at work - I can generally feel when I'll have control for a while and it just kept going and going. But I got home and then needed to go and for quite some time.

So there are still struggles but the increased strength adds a lot of confidence in general. I am running but not consistently enough. It's hard to get in strength, cardio and flexibility every day.

Someone I went through treatment with (relatively similar timeline) developed brain cancer. He had a long surgery and most of it was removed and he has another surgery scheduled to remove the rest. It wasn't related to the CRC though. It was only caught on a complete body scan - so he was lucky. I can't help but worry about this stuff when I see examples; and we do have too many of those 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; 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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 12, 2018 1:15 pm

One of those morning, fortunately I have the day off. I'm on a 32 hour fast as I have doctors appointments tomorrow morning and have to travel for them. It will be nice to have had a cleanout - I think that one a week or maybe two might be a regular thing.

Temperatures at night are below freezing now so it's generally colder. I'm going with two pairs of socks when outside and that seems sufficient. My toes still get somewhat numb on cold surfaces without socks. If you do go with two pairs of socks, I recommend sizing up your shoes. I have several pairs that are 1/2 size bigger than usual for when I have a lot of blisters on my feet and these work well with two pairs of socks.
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

Gravelyguy
Posts: 60
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Mon Nov 12, 2018 4:12 pm

Mike, I have noticed something and wondering if you have too. I am a teacher so most of the time am walking around but it seems like days that I am doing more paperwork, so sitting down, I have more bowel issues. I also seem to be able to "reset" things by laying flat for a little while. I noticed this in particular this past weekend as I drove for 6 hours and had more frequency than I usually do.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 12, 2018 5:05 pm

Yup. Most of my accidents happen while driving. Happened thus morning but contained by pads.
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: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 13, 2018 9:41 am

Stopped in to see the Oncologist at Dana Farber at 7:30 and the doctor was a no-show. The weather was challenging this morning and a lot of doctors weren't in. I then went to see the surgeon and everything looks fine and we talked about LARS and she pushed me to try the fiber again. I noticed Nopalina at Rikamaroo's thread and will look into that as well. The surgeon's assistant said that things are better at six months and I don't doubt that but it's a bit maddening at how slowly the body recovers. I asked how long it would take the port scar to not look like a cut and she said a year. She said that the ostomy site looks fine but it looks awful to me. I'm back at DFCI waiting for the oncologist. My guess is that a lot of people were bumped an hour to 90 minutes.
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

Gravelyguy
Posts: 60
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Tue Nov 13, 2018 11:52 am

I have a bowl of oatmeal for breakfast and that seems to work. I tried it earlier and it it seemed to make things worse. So might be something to revisit.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 13, 2018 1:09 pm

Gravelyguy wrote:I have a bowl of oatmeal for breakfast and that seems to work. I tried it earlier and it it seemed to make things worse. So might be something to revisit.

Dave


I think most of us will give just about anything a try.

The oncologist wanted my imaging - so I have to get it locally and mail it to him. I was a bit surprised at that - apparently he goes through the imaging himself instead of just reading the pathology report.

One of the subway lines was out this morning which was why many doctors were late.

He ordered bloodwork and everything was normal. I did not see CEA numbers and I don't know whether or not those were ordered but my local hospital usually took one to three days to get those results back. I would think that Dana Farber could turn around a CEA in under a day though. Some tests may be embargoed too (patient can't see them until doctor releases them).

CT scan in three months along with bloodwork. This will be nine months after the last one. He likes to do imaging once a year instead of twice a year.

So I guess I can concentrate on other stuff for a few months.
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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