Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 16, 2018 3:40 pm

Read the post again and he said that the reversal and port removal would be at the same time.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Wed May 16, 2018 4:05 pm

NHMike wrote:Read the post again and he said that the reversal and port removal would be at the same time.


I would take that as a good sign, that they got it all. Congratulations

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!

rockhound
Posts: 106
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Wed May 16, 2018 4:33 pm

Lee wrote:
NHMike wrote: . . . I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. . .


I can understand the stoma, butt are they going to take both the bag and the port out at the same time? This was a long time ago (14 yrs ago), butt i had to wait 2 yrs to get my port out. This type of surgery results in scar tissue. If (and God forbid) your cancer does come back, putting a port back in the same location could be a problem. There have been a few people on this board who had this problem and ended up having the port put in on the other side.

I though most doctor would hold off a year or two. Again this was a while ago and lot could have changed.

Good luck,

Lee


It depends on the situation. I had my port removed during my reversal. I know things could go where I need a port again, but my oncology team and surgeon were all in favor of this, since I was/am not super high risk. It was fine with me also.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 16, 2018 5:24 pm

Lee wrote:
NHMike wrote:Read the post again and he said that the reversal and port removal would be at the same time.


I would take that as a good sign, that they got it all. Congratulations

Lee


The DFCI oncologist told me that I had a PCR and that I was in the best part of the 69% survival rate last fall. I haven't looked at survival rates WRT to PCRs so I'm cautious there. It's just that I just want to get on with life but I guess that there's a benefit to being cautious. I have to let others know so that they can plan.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

heiders33
Posts: 200
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed May 16, 2018 6:38 pm

My reversal was about a month after chemo ended. It had nothing to do with the timing of the scans, but rather waiting for my blood counts to go up. I'm not sure why your oncologist thinks you have to wait to have a scan before having the reversal. What does your surgeon say?

My oncologist told me to wait two years before having my port taken out (I had it installed last fall). He said the highest risk of recurrence is in the first two years.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 16, 2018 7:57 pm

heiders33 wrote:My reversal was about a month after chemo ended. It had nothing to do with the timing of the scans, but rather waiting for my blood counts to go up. I'm not sure why your oncologist thinks you have to wait to have a scan before having the reversal. What does your surgeon say?

My oncologist told me to wait two years before having my port taken out (I had it installed last fall). He said the highest risk of recurrence is in the first two years.


I have the feeling that the surgeon would want it done sooner. She wanted to do it this month I think. Her idea was that I do 1/2 chemo (4 rounds instead of 8) and that we schedule things sooner. I have the feeling that the oncologist and surgeon don't see eye to eye on it. I understand why the oncologist wants to wait. If anything escaped, it would take a while to show up. But I've seen people get reversals after a month recovery from chemo many times. I've seen some wait two months. I don't recall a three-month wait before.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

heiders33
Posts: 200
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed May 16, 2018 8:42 pm

I'm still not understanding why your oncologist would want to wait that long. I'm not sure what potential spread has to do with an ileostomy reversal, unless I am missing something? My oncologist's only input into my surgery timing was monitoring my bloodwork to make sure I was ready for surgery. Beyond that, it was basically a decision between my surgeon and me as to when to schedule the surgery.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

rockhound
Posts: 106
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Wed May 16, 2018 10:45 pm

NHMike wrote:
heiders33 wrote:My reversal was about a month after chemo ended. It had nothing to do with the timing of the scans, but rather waiting for my blood counts to go up. I'm not sure why your oncologist thinks you have to wait to have a scan before having the reversal. What does your surgeon say?

My oncologist told me to wait two years before having my port taken out (I had it installed last fall). He said the highest risk of recurrence is in the first two years.


I have the feeling that the surgeon would want it done sooner. She wanted to do it this month I think. Her idea was that I do 1/2 chemo (4 rounds instead of 8) and that we schedule things sooner. I have the feeling that the oncologist and surgeon don't see eye to eye on it. I understand why the oncologist wants to wait. If anything escaped, it would take a while to show up. But I've seen people get reversals after a month recovery from chemo many times. I've seen some wait two months. I don't recall a three-month wait before.


Ask them about the reversal timing again- I get putting off the port removal, but don't get postponing the reversal unless there is some other underlying reason. I had mine 4 weeks after my last chemo round - surgeon wanted it even faster, but onc. thought that was best, they both agreed ultimately. Reversal faster is better for your GI system. The less time it is out of service, the better.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED

Caat55
Posts: 345
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu May 17, 2018 12:29 am

My oncologist said a few months, probably to make healing easier without chemo in system

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

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat May 19, 2018 12:02 pm

I've gotten in 10K+ steps the past four days and have been hitting the weight machines. They've tired me out quite a bit which makes for really good sleep but sometimes I just want to fall asleep standing. So I'm working on the physical stuff to get into shape for the surgery. Four months is a lot of time for training. It actually does feel great though.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 23, 2018 3:16 pm

10 Steps for the past 8 days and trying to make that number permanent, at least for a while. Last Xeloda was this morning for a week and I feel pretty good. I'm going to the gym at 5:00 AM which I haven't done in a very long time. Also doing the weight machines almost daily. The weather supports nice walks outside too.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

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O Stoma Mia
Posts: 1275
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Wed May 23, 2018 9:52 pm

It is good that you are continuining your exercise program, since the pelvic floor group of muscles needs to be rehabilitated before reversal since they have not been used for normal bowel movements for many months now.

Be sure that your exercise routine includes the Kegel type of exercises designed to strengthen the particular pelvic floor muscles that are involved in synchronous bowel movement activity.

These exercises need to be done regularly now, before reversal. It doesn't work to defer them until after reversal, because after reversal these types of exercises just trigger an urgent need to go to the toilet.

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu May 24, 2018 7:44 am

Spent an hour at the gym from 5:30 to 6:30 and it was good. I could only get in 45 minutes early this week because I had appointments Monday, Tuesday and Wednesday. One thing that I discovered was the Optane 4700. I used the treadmills and was watching some rather fit people using this machine - it looks like an elliptical but people were using running motions on it. My local YMCA has a bunch of different types of equipment and it's not always obvious how to use them or what they do. They only have four of them but I hopped on and tried one out - and they are great. You get a running motion and side sticks if you want to work your arms. I found that my heartrate was back up to the levels that they are normally when I'm running (150-160 BPM). I like this machine because it's easy on the knees and the bag - it feels like I can run with this machine more easily than I can walk on a normal treadmill. I just need to get to the gym early enough to get one.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

NHMike
Posts: 1232
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri May 25, 2018 8:11 am

I got in an hour of cardio this morning and it was nice, though painful (big toe, left foot). I trimmed the big toenail afterwards and it feels a lot better.

I checked the bag in the office and found that I had some leaking. I'm not sure how it happened (I did do some running) but there's no stinging and the leak was contained by the Hypafix tape. I have a roll in the office so I can take replace it but I might just change the bag when I get home. I really love this tape, both for the illeostomy and for using to bandage large cuts and bruises.

We have a summer contest - the minimum requirements are to walk 24 miles per week for 12 weeks. We had this contest last year but it was 20 mile a week for 8 weeks. It should be a good contest to help get me back in shape for the reversal. I'll have to be mindful to keep up with the strength training though.

The nice weather is inspiring for getting outside too.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Caat55
Posts: 345
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri May 25, 2018 10:13 am

Wow you are impressive. Last round of chemo kicked my butt, motivation to exercise. I have been busy wrapping up schoolyear and outside house projects. We get summer temps over 100 regularly in June so need to get it soon. I am going to start back aggressively with yoga as it helps with bladder/bowel control.
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


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