Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 12, 2019 3:49 pm

Sad news today. A coworker was diagnosed with Lung Cancer a few months before I was diagnosed and we were going through things together. He had drugs to shrink and control the tumor but it wouldn't eradicate it and surgery wasn't an option. So he was taking the drugs to control it until, hopefully, science could find a way to either kill or remove the tumor. He had some additional symptoms this spring and it looks like it has mutated and metastasized to his spine. He's undergoing treatment for it. I heard this second-hand for the manager who has replaced him and didn't have further details but this sort of thing isn't good.
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

Jannine
Posts: 185
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

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

Postby Jannine » Mon Aug 12, 2019 7:53 pm

Ugh I am so sorry to hear about your coworker. That sucks.

I'm glad you were able to get some tennis play in. Sorry you're still having to learn about your options for dealing with all the clustering problems. I guess it's good that there are options, but getting informed can take a while when the products aren't readily available.

I really hope things improve for you. The information you're sharing here is invaluable to others who are be in the same boat, I am sure. I feel 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
7/19 CT scan clear

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 13, 2019 9:45 am

Oncologist visit - bloodwork looks great and he told me that I look like I'm 45. CT in 6 months which is a one-month schedule. In 2020, we go to 2 visits a year instead of 4.
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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juliej
Posts: 3052
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Wed Aug 14, 2019 6:45 pm

NHMike wrote:In 2020, we go to 2 visits a year instead of 4.

The switch from 4 visits a year to twice a year is the day you start feeling like cancer might be in your rear-view mirror. It's funny how the difference between 3 months and 6 months feels so long, like you can finally breathe. Bet you're looking forward to it!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 14, 2019 7:36 pm

juliej wrote:
NHMike wrote:In 2020, we go to 2 visits a year instead of 4.

The switch from 4 visits a year to twice a year is the day you start feeling like cancer might be in your rear-view mirror. It's funny how the difference between 3 months and 6 months feels so long, like you can finally breathe. Bet you're looking forward to it!

Juliej


I don't think about cancer personally that much because I'm so busy.

I read the visit report.

One of the things mentioned was that my cancer was low-grade. I believe that that's a good thing but I should look it up. He also wrote my letters/numbers. Nobody actually had done this before in a place where I saw it. I assumed III B from what I read and III B is confirmed.

The report also said that I had acellular mucen pools as part of pathology. I looked this up and they are something that shows up and the concern is that they are cancerous but the consensus seems to indicate that they are a result of radiation treatment. I found this in a small study which had this conclusion. The study did recommend further study.

My colonoscopy interval is three years now. I will ask about this the next visit as I thought that it should be annual for several years.

The doctor also estimated my ECOG score as zero. I hadn't heard of it so I looked it up. It's the Eastern Cooperative Oncology Group Performance Status.

0: Fully active, able to carry on all pre-disease performance without restriction
1: Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
2: Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours
3: Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours
4: Completely disabled; cannot carry on any selfcare; totally confined to bed or chair
5: Dead

I looked up his bio out of curiousity and he's also a professor at Harvard Medical School like my surgeon. The visit summary was quite long and detailed. He spends a full day seeing patients and writes up the visit notes in the evening - I had him as the last appointment of the day one time and we chatted - he works a lot of hours.
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 15, 2019 3:08 pm

I think that I have a private message to read but my mailbox is full but I can't figure out how to delete messages.
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 23, 2019 5:30 am

I've been working about twelve hours a day this week trying to get a subproject finished so that I can go back to working on the other projects. There's a ton of stuff I want to get done before leaving.

I ran four miles on Tuesday, three on Wednesday and five yesterday. I really haven't run that much consistently for quite some time and the downside of running is that I don't feel like doing strength-training. Yesterday I only got four and a half hours of sleep. I arrived at the office at 5:00 AM and ran five miles and left the office around 7:00 PM, worked for a while at home and then had some dinner.

This morning, though, I feel great. Tons of energy and walking and carrying heavy things is easy. So there's a benefit to consistent cardio. Consistent cardio has been missing because of the LARs. If I want to run, I have to plan the GI stuff so that I can run without having to worry about going to the bathroom. Today I'm going back to doing balance, flexibility and strength work and will hopefully get a lot of sleep tonight.

My wife tweaked her back on Monday and she was in bed all day on Monday and Tuesday and I had to help her get up, go to the bathroom, etc. She is back up and walking around and doing some light things but still resting a lot. I've tried to convince her to do strength and core work but she generally just likes to walk but maybe I can get her to do some core work to prevent injuries. It's a left-lower-back injury. I have one of these from my twenties but I haven't had any problems with it in decades because of regular core work. The body needs regular stress and maintenance.

This getting old stuff is tough.
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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Atoq
Posts: 352
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Fri Aug 23, 2019 2:51 pm

Hi,
I agree, it really helps with pain in the neck or the back to do core training. I did not run today but walked a lot (32000 steps) with my dog. Have you tried eating wild blueberries? It can really help the intestine.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 25, 2019 7:34 am

Atoq wrote:Hi,
I agree, it really helps with pain in the neck or the back to do core training. I did not run today but walked a lot (32000 steps) with my dog. Have you tried eating wild blueberries? It can really help the intestine.

Claudia


Nice to hear from you Claudia.

32K steps is 16 miles and that is a lot of walking. I recall that a few of us were doing 15K-30K last summer. You need really good shoes to do that kind of distance.

I got in 20 miles of running for the week, an average of four miles Tuesday through Saturday. It felt really, really good. I always amazed at how fast the body can improve with exercise. The weather here has turned cooler (in the 60s last night and it will be in the 40s tonight). It makes it easier to choose what to wear as I prefer cooler temperatures. I would like to get back to running regularly but need to set a target distance per week and I haven't decided what that will be. 15-20 wouldn't be bad for now. I'd really like to do 30 but I don't know if I have the time for that.

I would have to look around for wild blueberries. The season may already be over here. We usually buy industrial blueberries and berries in general at Costco. I don't really pay much attention to what we're getting but I do know that berries are generally good for you. I will have to look around to see if I can find them.

thanks,
michael
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 09, 2019 7:57 pm

I wasn't able to find wild blueberries. The season is long over. There were blueberries in the supermarket this week but they are from Peru and I'm not getting imported industrial fruit when we have wild blueberries from Maine and Vermont in the summer.

I had a blockage last Wednesday and it's finally over this morning. Fasting a lot helps. It was a moderate amount of pain for a few days and it slowly decreased over time. The fasting makes it possible to go for a few days of the week without having to go to the bathroom more than once or twice a day.
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

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

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

Postby MeAndMine » Tue Sep 10, 2019 4:37 am

I had a blockage last Wednesday and it's finally over this morning.

I'm glad you finally got through that! What causes a blockage? Mine is the tumor doing the blocking right now. How does your weight do with fasting? I feel so much better when I'm not eating, I'd rather skip the food but my weight is on a downward spiral.

Do you think someone might sell frozen wild blueberries that are from your area? My daughter used to make a blueberry smoothie with peanut butter and yogurt to drink for breakfast.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Sep 10, 2019 5:44 am

MeAndMine wrote:
I had a blockage last Wednesday and it's finally over this morning.

I'm glad you finally got through that! What causes a blockage? Mine is the tumor doing the blocking right now. How does your weight do with fasting? I feel so much better when I'm not eating, I'd rather skip the food but my weight is on a downward spiral.

Do you think someone might sell frozen wild blueberries that are from your area? My daughter used to make a blueberry smoothie with peanut butter and yogurt to drink for breakfast.


The blockages are caused by scar tissue from surgery. The scar tissue can be surgically removed but it could just grow back again. My weight has been declining with 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

Caat55
Posts: 673
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Sep 14, 2019 1:30 pm

Mike
Sorry to hear you are still dealing with blockages. I have a routine of just little bits for a day or two and then a clean out. I have found that a lot of tomatoes, which are a bonanza in my garden, are very hard on system. The figs which are ripe now are quite effective at clean outs as is red wine.

The fiber capsules seems to be effective, I take one a day, next day two, one, two. I am pretty lucky that is seems clean outs are at night but that can also interfere with needed sleep.

I really need to get back at core work. Got the walking down but just haven't added yoga back in. sound like you and Claudia are in great shape again. Cheers!!!
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Sep 14, 2019 4:48 pm

Caat55 wrote:Mike
Sorry to hear you are still dealing with blockages. I have a routine of just little bits for a day or two and then a clean out. I have found that a lot of tomatoes, which are a bonanza in my garden, are very hard on system. The figs which are ripe now are quite effective at clean outs as is red wine.

The fiber capsules seems to be effective, I take one a day, next day two, one, two. I am pretty lucky that is seems clean outs are at night but that can also interfere with needed sleep.

I really need to get back at core work. Got the walking down but just haven't added yoga back in. sound like you and Claudia are in great shape again. Cheers!!!
Susan


I'm pragmatic and just deal with the problems. I think that the mind can get used to a lot of stuff.

Core work is great stuff. I ran six miles yesterday. I haven't done that since before diagnosis. Claudia is a beast with her 10K speeds. I have been working on core and muscles. I have a long ways to go on cardio.
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: 2338
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Sep 16, 2019 2:32 pm

Last week was pretty good. It often is after a blockage as, unpleasant as they are, they result in a cleanout which means peace for two days.

I got hit on the highway last night and the other driver took off. So i have to get the car appraised and wait until the police identify him, if possible, so that my insurance company can get his information and get the process started. Life can be a series of headaches.

I need to do a steadier job on fiber, slippery elm and Miralax. I know that there are a lot of folks out there struggling.
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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