Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 22, 2018 12:14 pm

heiders33 wrote: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!


I'll have a look (bookmarked). I mentioned it to my manager and she says that she's had several of them (Crohn's) and said some were awful and some were easy. I'll definitely read 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; 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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susie0915
Posts: 945
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 » Fri Jun 22, 2018 12:41 pm

Yep the barium enema is fun. I had it in the hospital 4 weeks after by resection when I had my bowel blockage. My surgeon told me if he had to do surgery to remove scar tissue causing the blockage he would reverse my ileo right there. Since the blockage didn't resolve within a week of walking with an ng tube, I had to have surgery. First was the barium test to be sure everything was healed. Yep there is alot of leakage after. Since I was already in the hospital it wasn't too bad. I'm sure your surgeon will talk to you about scheduling it before reversal surgery. Can't believe you're done with treatment, time did fly by, but probably not fast enough for you. It was along year for me I remember. Since I had my reversal before adjuvant therapy that phase was eliminated. Keep us updated
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jun 24, 2018 5:41 pm

1.5 weeks out from chemo and most of the tingles are gone. I still have them in my toes though. The fingers have some numbness but I can generally function with them. Hoping to get all of my feeling back there.
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

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

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

Postby SpringerSpanielMommy » Sun Jun 24, 2018 7:15 pm

Mike, I am happy for you moving soon to the next phase of treatment, I have read your story and am grateful that you have shared for those of us coming behind you. I wish you the very best.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Jun 26, 2018 9:03 pm

I had the appointment with the surgeon today and she laid out what most of the folks here already told me. She had either an intern or resident in there as well - he asked me questions before the doctor came in. I have the reversal the last Monday of July and the preop stuff the week before. They are going to do the Barium Enema then. The surgeon said that they don't actually use Barium anymore and she gave me the name of the chemical. I received a packet which I need to decode into a timeline.

She said that I should ask my oncologist about the port as to whether to leave it on or take it out. If he says take it out, then the surgeon can do that as well. I don't have to do the colonoscopy prep for this surgery. Just no food after midnight. The hospital stay is 2 days and she offered me a choice of two hospitals - The Faulkner - and I'd get a private room there, or B&W which has semi-private rooms unless I want to spend $400/night for a private room. I just don't want another roommate with something really infectious that they were going to call the CDC in for.

I'm getting a lot of walking in, typically 100 miles per week for the past two weeks.

I really would rather run though.
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: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jun 28, 2018 11:16 am

Something I've learned through a lot of walking.

If you eat dinner and do a lot of walking (say 2-3 hours), a lot of the stuff that you ate will head into the bag over time meaning that you don't have to worry as much about the bag filling up overnight (gas and output). I've been waking up only once a night instead of twice with the big walking project. It makes a nice difference in sleep quality.
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: 412
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Thu Jun 28, 2018 11:50 am

Yes, it also helps to eat dinner early :)

Atoq
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
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 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Thu Jun 28, 2018 6:05 pm

NHMike wrote:I had the appointment with the surgeon today and she laid out what most of the folks here already told me. She had either an intern or resident in there as well - he asked me questions before the doctor came in. I have the reversal the last Monday of July and the preop stuff the week before. They are going to do the Barium Enema then. The surgeon said that they don't actually use Barium anymore and she gave me the name of the chemical. I received a packet which I need to decode into a timeline.

She said that I should ask my oncologist about the port as to whether to leave it on or take it out. If he says take it out, then the surgeon can do that as well. I don't have to do the colonoscopy prep for this surgery. Just no food after midnight. The hospital stay is 2 days and she offered me a choice of two hospitals - The Faulkner - and I'd get a private room there, or B&W which has semi-private rooms unless I want to spend $400/night for a private room. I just don't want another roommate with something really infectious that they were going to call the CDC in for.

Sounds like you have a good roadmap now! :D

It appears they are planning to use an iodine-based (rather than barium-sulfate) contrast for your leak test, probably something like Gastrografin.

And I quite imagine your oncologist will recommend removing your port during the reversal surgery since you're finished with treatment. You're already knocked out anyway so it's handy. Many times they pull in an IR doc to remove it so don't be surprised if that happens.

Great mileage on your walking! Keep up the good work. You'll be back to running soon!

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 12/18/2019, CEA<1

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susie0915
Posts: 945
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 » Fri Jun 29, 2018 12:33 pm

I always eat my dinner early. I find that even after reversal it helps with sleep. Not needing to get up during the night to go to the bathroom.
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 29, 2018 12:46 pm

juliej wrote:Sounds like you have a good roadmap now! :D

It appears they are planning to use an iodine-based (rather than barium-sulfate) contrast for your leak test, probably something like Gastrografin.

And I quite imagine your oncologist will recommend removing your port during the reversal surgery since you're finished with treatment. You're already knocked out anyway so it's handy. Many times they pull in an IR doc to remove it so don't be surprised if that happens.

Great mileage on your walking! Keep up the good work. You'll be back to running soon!

Juliej


Yup, that's what it will be. I only remembered that it had a funny name.

I have labs next Tuesday and see the oncologist on Thursday. I have CEA anxiety.
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

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

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

Postby SpringerSpanielMommy » Sun Jul 01, 2018 5:20 pm

Praying for you to have great CEA results and excellent visit on Tuesday!
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Jul 01, 2018 5:39 pm

You got this Mike. I am taking notes.
S
Do at 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, 5/20

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Sun Jul 01, 2018 9:31 pm

Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sun Jul 01, 2018 11:34 pm

Rikimaroo wrote:Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.

Hi Rikimaroo
I totally get how your feeling, I have only one last round and am terrified. The damage this is doing to my body in places and ways no one but I see and feel is awful. I just want a life with my family and this to be done. It takes me a full two weeks to feel sort of right after an infusion, my taste buds and tongue never are right, nor is my tolerance of cold, blowing air.
Hold on.
Susan
Do at 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, 5/20

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 04, 2018 8:25 am

Rikimaroo wrote:Glad to see your moving on Mike. Very happy for you my friend. I have done 9 rounds of Chemo so far and I told my Onc I need a break, extra week off, but I don't want to do anymore. It's so tough and I am having a hard time handling it. Especially the nueropathy in my hands and feet. My last treatment was 6/20 and still have neuropathy, your lucky MIke yours is going away.

From what I reading its 9 treatments vs 12 is very negligible and would not make a difference. Just want to get over this nightmare get my reversal and move on.


It definitely gets harder as you move on and you worry about permanent effects. My neuropathy issues never really cleared up in the later cycles, they just declined. I still have the tingles three weeks after the end of the Xeloda and the stiff finger joints but it's manageable. If they keep declining slowly, then I can live with that.
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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