Rectal cancer (Stage 3A) diagnosed late June 2017

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Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Tue Jun 19, 2018 12:56 pm

Did they say that the port is no longer needed? I thought usually you keep it for 2 years after doing everything just in case. But I do hope nothing and your done with all this crap.

The neuropathy for me kicked in hard 2-3 months after doing the first 6 rounds of chemo. I am so happy you made it through man, its been quite the journey. Cheers brother!!
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Jun 19, 2018 1:18 pm

The oncologist indicated that it would be removed after four months. The surgeon hasn't said though I haven't discussed it with her yet. I guess that they could always put it on the other side - hopefully that will never have to happen. I can manage with the neuropathy. I haven't dropped anything yet but I did fall down the stairs twice. Toes not giving proper feedback can be a 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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Tue Jun 19, 2018 5:40 pm

My oncologist advised keeping my port for two years, so that’s what I’m doing. I got it in November 2017, so if all goes well I’m getting it out in November 2019.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

mpbser
Posts: 479
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Jun 20, 2018 4:48 am

Two years sounds wise. I'll mention that to my husband.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jun 20, 2018 7:29 am

The hands and feet/neuropathy peaked yesterday. It's often worst in the morning and it's notable when I don't notice it when waking up.

The bigger problem right now is blisters. But those aren't cancer-related problems.
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: 865
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 Jun 20, 2018 7:34 am

NHMike wrote:The hands and feet/neuropathy peaked yesterday. It's often worst in the morning and it's notable when I don't notice it when waking up.

The bigger problem right now is blisters. But those aren't cancer-related problems.

My neuropathy got worse about a month after finishing chemo. That was over 2 years ago. My hands have improved pretty much back to normal. Just the tingling on the bottom of my feet. No pain just annoying. I wear shoes or slippers almost all the time as it's uncomfortable walking on hard surfaces without something on my feet. It doesn't stop me from doing anything, I am still able to do my walking and running with really no problems. I tried acupuncture, didn't seem to really help. I never took the neurontin my oncologist prescribed just didn't want to take it. Hopefully, yours will disappear as with many it does. My oncologist said it can take up to two years.
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

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jun 20, 2018 7:42 am

susie0915 wrote:
NHMike wrote:The hands and feet/neuropathy peaked yesterday. It's often worst in the morning and it's notable when I don't notice it when waking up.

The bigger problem right now is blisters. But those aren't cancer-related problems.

My neuropathy got worse about a month after finishing chemo. That was over 2 years ago. My hands have improved pretty much back to normal. Just the tingling on the bottom of my feet. No pain just annoying. I wear shoes or slippers almost all the time as it's uncomfortable walking on hard surfaces without something on my feet. It doesn't stop me from doing anything, I am still able to do my walking and running with really no problems. I tried acupuncture, didn't seem to really help. I never took the neurontin my oncologist prescribed just didn't want to take it. Hopefully, yours will disappear as with many it does. My oncologist said it can take up to two years.


I think that it's fairly mild with us. I have heard of people that drop things due to the condition. I didn't take anything either as I hate taking drugs which can have their own side-effects. It's there. It affects me a little sometimes with balance but I can type. I really am curious about how it will feel hitting tennis balls. I haven't hit a ball since last fall. I hope to start after spending a few months on general training (stuff I can't do right now) and then start hitting tennis balls.
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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juliej
Posts: 2872
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Thu Jun 21, 2018 6:29 pm

NHMike wrote:I was in a hurry to get the reversal and then the Dana Farber Oncologist said four months so my frame of mind was four months. Then I called the surgeon and she said one month after end of chemo. Most people seem to have it done one month after but I have seen a few people report two months or three months. So now I'm thinking maybe a bit longer than one month, like six weeks. But that's a mental thing.

I arranged an appointment for next week to speak to the surgeon so it's a trip into Boston (I usually leave at 4:15 AM for those) and I suspect she'll tell me about the surgery and maybe I'll have to sign some things though sometimes that's done at an appointment a week before the surgery. I imagine that my anxiety levels will rise as we pick a date and as we get closer to that date. Then the stuff with not eating and the special body wash three days beforehand.

About the reversal surgery prep - don't forget the infamous "leak test" beforehand (a barium enema followed by x-rays). :shock:

Its purpose is to ensure the integrity of the resectioned colon to make sure all plumbing will be operational for the reversal. The radiologist reviews the films afterwards and provides a report to the surgeon within 24 hours. Then they can confirm the surgery date. Once the x-ray is completed the barium drains out of the colon, which takes several minutes. Make sure you stay in the bathroom until it feels like it's all drained out. Also make sure you take back-up pairs of underpants and pads as dripping will most likely continue for awhile after you leave. Forewarned is forearmed.

You might already be doing this, but if not, start doing pelvic floor exercises and Kegels. Strengthening the sphincter muscles will help prevent incontinence after your reversal.

1. Tighten your buttock muscles like you are trying to hold back a bowel movement. Hold this position for five to ten seconds. Release and rest for the same count.
2. Repeat 10 times, four times per day. Practice them while sitting, standing and walking.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jun 21, 2018 7:15 pm

juliej wrote:
NHMike wrote:I was in a hurry to get the reversal and then the Dana Farber Oncologist said four months so my frame of mind was four months. Then I called the surgeon and she said one month after end of chemo. Most people seem to have it done one month after but I have seen a few people report two months or three months. So now I'm thinking maybe a bit longer than one month, like six weeks. But that's a mental thing.

I arranged an appointment for next week to speak to the surgeon so it's a trip into Boston (I usually leave at 4:15 AM for those) and I suspect she'll tell me about the surgery and maybe I'll have to sign some things though sometimes that's done at an appointment a week before the surgery. I imagine that my anxiety levels will rise as we pick a date and as we get closer to that date. Then the stuff with not eating and the special body wash three days beforehand.

About the reversal surgery prep - don't forget the infamous "leak test" beforehand (a barium enema followed by x-rays). :shock:

Its purpose is to ensure the integrity of the resectioned colon to make sure all plumbing will be operational for the reversal. The radiologist reviews the films afterwards and provides a report to the surgeon within 24 hours. Then they can confirm the surgery date. Once the x-ray is completed the barium drains out of the colon, which takes several minutes. Make sure you stay in the bathroom until it feels like it's all drained out. Also make sure you take back-up pairs of underpants and pads as dripping will most likely continue for awhile after you leave. Forewarned is forearmed.

You might already be doing this, but if not, start doing pelvic floor exercises and Kegels. Strengthening the sphincter muscles will help prevent incontinence after your reversal.

1. Tighten your buttock muscles like you are trying to hold back a bowel movement. Hold this position for five to ten seconds. Release and rest for the same count.
2. Repeat 10 times, four times per day. Practice them while sitting, standing and walking.

Juliej


Well that sounds like fun. This is the first I've heard of it though I used to order lots of these when I worked in a hospital (by order, I mean process the paperwork). I better start making up my list. Before surgery, I had everything in Apple Notes so that I could check on things done and to be done at any time. Thanks for the heads-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; 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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Thu Jun 21, 2018 7:25 pm

For me, the dripping after the gastrografin enema (similar to barium, just a different substance) was less dripping and more like an explosion! Definitely bring diapers or pads. I also asked for the smaller tube because of radiation and worry about pain if they inserted the larger tube. Make sure you talk to your surgeon about this procedure - it will need to be done prior to surgery.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Fri Jun 22, 2018 4:19 am

I also had a CT scan with gastrografin enema before surgery.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
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, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 22, 2018 7:10 am

I'm sure that my surgeon will explain it and maybe that's part of what the meeting next week is for. She's been great about explaining things. I'm glad I found out beforehand though. After the meeting next week I should be able to start coming up with a timeline and then filling it in.
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

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Fri Jun 22, 2018 8:59 am

I did the Xray Enema 3 weeks after my liver and LAR resections. It was not bad, but never fun. The real annoyance was after all was done I was on the toilet for like 15 minutes spraying out all the liquid. When I got home same thing, the car ride I could hold, it was 1 hour drive home.

I was on the toilet practically the entire day that day. Keep in mind this is while I had my ileostomy.

Everything was good on the test for me.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 22, 2018 9:15 am

We should make this more generally known - I've been here for a year and this is the first I've heard about it.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Fri Jun 22, 2018 11:38 am

If you want, you can read about my experience on my thread here: viewtopic.php?f=1&t=59411&start=15#p472865

Also, my surgeon told me about this procedure for months before it took place, so I searched for it on this forum and found lots of helpful information.

Hope this helps!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI


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