Advice/opinion please

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Chickspeed
Posts: 43
Joined: Sat Jun 17, 2017 5:16 am

Advice/opinion please

Postby Chickspeed » Thu Sep 07, 2017 7:38 pm

My colonoscopy and scans (MRI and CT) proclaimed I had a 5-6 CM growth 10-11 cm from anal verge T2 early T3 3 enlarged lymph nodes noted over all given Ct2 early t3 Nx. I did 25 treatments of chemoradiation (with xeloda). Then after a wait LAR surgery. post op pathology read in part:

Lymph-Vascular Invasion: Not identified
Perineural Invasion: Not identified
Number of Lymph Nodes Involved: 0
distance of invasive carcinoma from closest margin: 20 mm


Stage(PTMN)
pT1: Tumour invades submucosa
Pn0

Comments: Only several malignant glands remain post treatment. They are located in the superficial
submucosa

Diagnosis:
A) Rectal lesion: Minimal residual well differentiated adenocarcinoma (less than 0.1 CM in size)
-involving submucosa
- appears completely excised
-all lymph nodes excised negative for malignacy

proximal a distal anastomotic rings: unremarkable colon tissue identified.

I have been offered optional xeloda for 4 months. The question I am asking.

Would you do the 4 months of chemo or not?
12/15/2016 Mod Diff tumour 5-6 cm 10-12 cm fr AV T3 tumour cea 1.4
12/29/2016 CT no spread ln normal
1/19/2017 MRI confirms mass and shows 3 enlarged LN (suspected to be infection draining)
3/6/2017 25 sessions chemoradiation
6/20/2017 LAR with temp loop ileo
7/10/2017 Path 20mm margins tumour 0.1 CM with microscopic invasion of submucosa
aug-dec 2017 6 rnds xeloda
1/9/2018 CT all clear
1/18/2018 Colonoscopy clear
3/27/2018 ileo reversal
CEA continues to be normal

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Advice/opinion please

Postby susie0915 » Thu Sep 07, 2017 8:28 pm

This is a tough one. After chemoradiation for me all that was left was scar tissue. Surgeon said I may not need chemo after surgery. During my postop check he wanted me to do chemo. No lymph nodes but specimen showed dead cancer cells. After meeting with oncologist her reasoning was even tho small chance of recurrence (stage 2a) if there was, she wouldn't want me to regret not doing chemo. She could not be sure cancer cells didn't get into blood stream. I went ahead with chemo, 6 rounds of Xeloda and oxi. I was disappointed after being told I may not need it. I dont regret it, but deal with some neuropathy which Is manageable. Good Luck it is a tough decision.
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: Advice/opinion please

Postby NHMike » Thu Sep 07, 2017 8:30 pm

Yes. That's the standard treatment though it's usually XELOX, not just Xeloda. In fact your case is extremely close to mine.

Tomorrow is my last day of 28 days (some places do 25, some do 28) of radiation and Xeloda. Surgery in six or seven weeks. A break of about six weeks and then a bunch of months of adjuvant chemo, likely XELOX.
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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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Advice/opinion please

Postby CRguy » Fri Sep 08, 2017 12:46 am

Chickspeed wrote:I have been offered optional xeloda for 4 months. The question I am asking.
Would you do the 4 months of chemo or not?


Yes.

For all the reasons and discussion please read my other 9,143 posts
because at ten years now .... I AM still here.

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Advice/opinion please

Postby WarriorSpouse » Fri Sep 08, 2017 9:31 am

Ditto on what CR Guy posted... Do the chemo and it will be equity in the prevention bank.

There are many on this board who are doing chemo for life and are living a near normal life, with small signs of fatigue, but with awesome results.

There are many posts about this under the search tool in Quick Links. If we don't convince you, maybe those others will.
Best wishes to a speedy new normal and recovery.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Advice/opinion please

Postby susie0915 » Fri Sep 08, 2017 9:44 am

I agree. I didn't regret doing the chemo, and I don't think I ever will. You don't want to wonder what if? You'll know you did all you could to prevent a recurrence.
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

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Advice/opinion please

Postby Robino1 » Fri Sep 08, 2017 10:22 am

I didn't do chemo after my resection. Three years later (right now) I'm battling colon cancer again. In hindsight, I would absolutely do chemo after the resection.

I may or may not have been battling this now. I think I would have had a better chance of not having this recurrence had I done chemo back then.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Advice/opinion please

Postby rockhound » Fri Sep 08, 2017 10:23 am

I agree with everyone else on this about doing the chemo. I was in a very similar situation re: staging, etc. I have Lynch syndrome, so the Folfox that I just went through may not even be that effective, but I wanted to make sure just in case. Rather be overtreated at this point than regret not having done that later on.. My six treatments were reasonably tolerated and I'm actually feeling pretty good, with minor to no neuropathy now (two weeks out after final Folfox round). The hardest thing with the chemo for me was that it happened ~4 weeks after my LAR and I got a port installed the day before surgery. So I went into it a little beat up and between that and emptying my bag a few times a night, good sleep was hard to find.
45 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
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

Chickspeed
Posts: 43
Joined: Sat Jun 17, 2017 5:16 am

Re: Advice/opinion please

Postby Chickspeed » Sat Sep 09, 2017 7:07 am

Hey thanks for the replies. I guess I was just not thinking the other day. So after shaking my head and rattling
the beads loose.

It seems better to take chemo and not need it than not take it and wish I did...

so 6 months of xeloda it is. I had zero side effects while using it during radiation.
12/15/2016 Mod Diff tumour 5-6 cm 10-12 cm fr AV T3 tumour cea 1.4
12/29/2016 CT no spread ln normal
1/19/2017 MRI confirms mass and shows 3 enlarged LN (suspected to be infection draining)
3/6/2017 25 sessions chemoradiation
6/20/2017 LAR with temp loop ileo
7/10/2017 Path 20mm margins tumour 0.1 CM with microscopic invasion of submucosa
aug-dec 2017 6 rnds xeloda
1/9/2018 CT all clear
1/18/2018 Colonoscopy clear
3/27/2018 ileo reversal
CEA continues to be normal

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Advice/opinion please

Postby susie0915 » Sat Sep 09, 2017 7:50 am

I think that is a good decision. I had to do xeloda and oxi which is stronger. I asked the oncologist about doing xeloda only and she felt 6 rounds of xelox would be better. I did fine with xeloda during radiation. Also, with xeloda you don't have to have infusions. Good Luck. No regrets.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Advice/opinion please

Postby mpbser » Sat Sep 09, 2017 2:02 pm

I was originally deadset against chemo for my husband. However, after talking to many doctors, I am now convinced that the data shows that it does increase the rate of disease free survival. I agree with the sentiments written by others above.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Advice/opinion please

Postby Aqx99 » Sat Sep 09, 2017 2:14 pm

NHMike wrote:Yes. That's the standard treatment though it's usually XELOX, not just Xeloda. In fact your case is extremely close to mine.

Tomorrow is my last day of 28 days (some places do 25, some do 28) of radiation and Xeloda. Surgery in six or seven weeks. A break of about six weeks and then a bunch of months of adjuvant chemo, likely XELOX.


Actually, according to the treatment flow charts from the NCCN, Xeloda alone is an approved adjuvant treatment for early stage rectal cancers.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Advice/opinion please

Postby Lee » Sat Sep 09, 2017 2:24 pm

Ditto to what CRGuy said.

I believe you too have come to the same conclusion.

I know I wanted to give 110% from the beginning. I did not want to look back and regret.

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 - 16 years and counting!

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Advice/opinion please

Postby justin case » Sat Sep 09, 2017 4:03 pm

After 3rounds of Folfox, Then Folfox mixed with radiation for 28 days, two surgeries , I still did 12 more rounds of 5FU., 5 years ago ! Ahem, I said 5 years ago !
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012


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