Just got post-surgery results and they aren't good

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Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Just got post-surgery results and they aren't good

Postby Achilles Torn » Wed Jun 28, 2017 10:23 am

It sounds like you are making a tough choice whether or not to go with Oxi. Having just completed 12 rounds of infusion FolFox + Bev my experience was it was tough but doable. In my case (stage IV with unresectable tumours) the possibility of increased survival benefit made it a no brainer. I can see how it is tough for those who have had a complete resection of tumours (not sure from this thread if that is the case for your husband) to take on a drug that may or may not help them to cure. Perhaps I am an optimist but I swing to the "may" rather than the "may not" when it comes to these things.

AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

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

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed Jun 28, 2017 1:14 pm

Absolutely, AT.

We will certainly know more when we get Friday's liver MRI done. We also will need to figure out whether or not the additional tumor(s) that were found this morning in his colon are resectable or not. The findings are pretty bad:

- Two 3 to 7 mm polyps in the cecum. Resected and retrieved.
- One 1.5 cm polyp in proximal ascending colon. Complete resection. Partial retrieval. (That's interesting... a complete resection but partial retrieval. hmmm?)
- Likely malignant, nearly completely obstructing tumor at 55 cm proximal to anus. Biopsied. (We are so surprised that the surgeon could not [did not] feel this when he had the colon in his hands and "squeezed" it to feel for additional malignancies.)
- One 2 cm polyp at 40 cm proximal to anus. Resected and retrieved.
- A thickened fold concerning for malignant infiltration at 25 cm proximal to anus. The lesion took up almost half the circumference of the colon in this area. Biopsied.

-Christine
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

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Just got post-surgery results and they aren't good

Postby Jacques » Wed Jun 28, 2017 3:27 pm

mpbser wrote:Absolutely, AT.

We will certainly know more when we get Friday's liver MRI done. We also will need to figure out whether or not the additional tumor(s) that were found this morning in his colon are resectable or not. The findings are pretty bad:

- Two 3 to 7 mm polyps in the cecum. Resected and retrieved.
- One 1.5 cm polyp in proximal ascending colon. Complete resection. Partial retrieval. (That's interesting... a complete resection but partial retrieval. hmmm?)
- Likely malignant, nearly completely obstructing tumor at 55 cm proximal to anus. Biopsied. (We are so surprised that the surgeon could not [did not] feel this when he had the colon in his hands and "squeezed" it to feel for additional malignancies.)
- One 2 cm polyp at 40 cm proximal to anus. Resected and retrieved.
- A thickened fold concerning for malignant infiltration at 25 cm proximal to anus. The lesion took up almost half the circumference of the colon in this area. Biopsied.

-Christine

I don't understand why these 4 polyps and the obstructing tumor were not found in the original pre-DX colonoscopy. Could it be that the original colonoscopy never examined anything past the T3 tumor found in the sigmoid colon area? Do you have a copy of the original colonoscopy report? Did it say that it examined the whole colon all the way to the caecum?

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Just got post-surgery results and they aren't good

Postby ams5796 » Wed Jun 28, 2017 3:49 pm

Of course, Xeloda would be inferior to Folfox or Xelox. You asked for a non IV option and she gave you one in Xeloda, but told you that it is inferior to Xelox or Folfox. Both of those would require IV, but Xelox would not require a pump.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed Jun 28, 2017 4:20 pm

Jacques, The first colonoscopy was incomplete. She only went to the first tumor and stopped because 1) husband was under conscious sedation and it was causing him discomfort and 2) she didn't want to risk going further. Husband is frustrated because she WAS able to get past this tumor and it isn't any smaller than tumor #1.

ams5796, I think you are confusing two different conversations/appointments we had with the oncologist:

* At the first appointment, husband asked if there was a non-IV or pump (I don't think I was clear in my earlier posting on this) alternative and she said Xeloda. She gave us the information sheets for Folfox and for Xeloda. Husband asked if she was aware of any side by side research studies comparing the two. She said there was none. [I went home that day and checked to see if this was accurate. It wasn't. Not only inaccurate, but studies have shown Xeloda (oral) is just as effective as 5-FU (IV). This forum has many links to such studies. Thank you!]. She made no statements as to the efficacy and safety of one over the other. The conversation was such that Xeloda would be an acceptable substitute for Folfox.

* At the second appointment, her recommendation was different although none of the variables had changed. She now said that the preferred treatment, if non-pump, was Xelox and referred to Xeloda as "inferior." She did not say what it was inferior to. We asked for studies to support this claim and have yet to see one.
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Just got post-surgery results and they aren't good

Postby MissMolly » Wed Jun 28, 2017 4:27 pm

Christine:
It sounds as though this has been a tumultuous day for both you and your husband in receiving the additional polyps and findings from this mornings thorough colonoscopy. Take some time to just "be" with one another and allow the cascade of information settle.

You have mentioned several times that your husband's surgeon assured you that he physically "squeezed" the adjacent area of intestinal real estate during the sigmoid resection - the surgeon proclaiming that he felt no masses with his hands.

Your husband had a laparoscopic sigmoid resection. I do not see how the surgeon could have had his hands palpating your hisbans's length of intestine with a purely laparoscopic approach. A laparoscopic and/or robot assisted surgery gains access to the abdomen through punch-hole and minimalist 1-2 inch incisions through which instrumental trocars are inserted. A laparoscopic approach is incongruent with access enabling a surgeon's hands to be in the operative field.

Bottom Line: I question the surgeon's comment that he squeezed and fully palpated your husband' length of adjacent intestine to the resected area.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Just got post-surgery results and they aren't good

Postby ams5796 » Wed Jun 28, 2017 4:28 pm

I'm not confused. Of course, Xeloda is inferior to Xelox.

It sure sounds like you have issues with this oncologist.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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

Re: Just got post-surgery results and they aren't good

Postby mpbser » Wed Jun 28, 2017 5:03 pm

Thanks, MissMolly. I will explain more at a later time.

ams5796, "Xeloda is inferior to Xelox." Please substantiate this claim. As I have stated, many studies linked to on this forum say otherwise.
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

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Just got post-surgery results and they aren't good

Postby Bev G » Wed Jun 28, 2017 5:39 pm

Xeloda is metabolized further down the metabolic pathway to 5FU. As you have now read, other than some side effects differences (eg hand/foot syndrome), they really are pretty much the same drugs. In my experience here, over the past 7 years, selection of the route of 5FU is dependent upon how people feel about swallowing many pills vs living with the 5FU pump for 46 hours.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Just got post-surgery results and they aren't good

Postby Maia » Wed Jun 28, 2017 5:53 pm

mpbser wrote:"Xeloda is inferior to Xelox." Please substantiate this claim. As I have stated, many studies linked to on this forum say otherwise.


Xeloda is a brand name of capecitabine, a pill, which is a 5-FU precursor. Xeloda is, basically, 'just' 5-FU.

Hence, all the literature saying that 5-FU is inferior than '5-FU combined with other agent' would demonstrate that.

Xelox = Xeloda + Oxaliplatin. Xelox is also called Capox = capecitabine + oxaliplatin

Expressed in other way:
Xelox would be equivalent to Folfox.
Xeloda is inferior to Xelox because the former is one drug (capecitabine), while the later is that drug combined with other agent --a platinum-base chemotherapy (capecitabine + oxaliplatin).

ppanamared
Posts: 12
Joined: Wed Jun 28, 2017 5:47 pm

Re: Just got post-surgery results and they aren't good

Postby ppanamared » Wed Jun 28, 2017 5:55 pm

At first I thought the pump would be in the way for 3 days but after i started shoving it in my front pocket and routing the tube under, it wasn't so annoying. They even gave me a kit so i could take it out of my port by myself. Fun times.

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Just got post-surgery results and they aren't good

Postby LeonW » Wed Jun 28, 2017 6:17 pm

"Xeloda is inferior to Xelox." Please substantiate

See: NCCN Guidelines Colon Cancer (version 1.2017)
page 7: Evidence Blocks for Primary Treatment for Clinical T4b, or Locally Unresectable, or Medically Inoperable

The blocks on that page evaluate the recommended treatments for:
    E = Efficacy of Regimen/Agent
    S = Safety of Regimen/Agent
    Q = Quality of Evidence
    C = Consistency of Evidence
    A = Affordability of Regimen/Agent
scoring scale: 1 (lowest) to 5 (highest)

. . . . . . . . . . . . . . . . . . . . . . . . Efficacy . . . . . Safety . . . . Evidence Quality . . . . Evidence Consistency . . . . Affordability
Bolus 5-FU/leucovorin/RT . . . . . . . . .2 . . . . . . . . . . 2 . . . . . . . . . . 3 . . . . . . . . . . . . . . . . 3 . . . . . . . . . . . . . . 3 . . . .
Capecitabine/RT . . . . . . . . . . . . . . 3 . . . . . . . . . . 3 . . . . . . . . . . 2 . . . . . . . . . . . . . . . . 3 . . . . . . . . . . . . . . 2 . . . .
Infusional 5-FU/RT . . . . . . . . . . . . . 3 . . . . . . . . . . 3 . . . . . . . . . . 3 . . . . . . . . . . . . . . . . 3 . . . . . . . . . . . . . . 3 . . . .
CapeOx . . . . . . . . . . . . . . . . . . . . 3 . . . . . . . . . . 3 . . . . . . . . . . 3 . . . . . . . . . . . . . . . . 3 . . . . . . . . . . . . . . 3 . . . .
FOLFOX . . . . . . . . . . . . . . . . . . . . 3 . . . . . . . . . . 2 . . . . . . . . . . 3 . . . . . . . . . . . . . . . . 3 . . . . . . . . . . . . . . 3 . . . .

Hence: Evidence that CapOx works is stronger (Quality of Evidence) than Xeloda
Capox is less expensive

I've seen some specific studies that substantiate the difference, but the above NCCN Guidelines summarizes nicely and is readily available.

Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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

Re: Just got post-surgery results and they aren't good

Postby juliej » Wed Jun 28, 2017 6:27 pm

mpbser wrote:At the first appointment, husband asked if there was a non-IV or pump (I don't think I was clear in my earlier posting on this) alternative and she said Xeloda. She gave us the information sheets for Folfox and for Xeloda. Husband asked if she was aware of any side by side research studies comparing the two. She said there was none. [I went home that day and checked to see if this was accurate. It wasn't. Not only inaccurate, but studies have shown Xeloda (oral) is just as effective as 5-FU (IV). This forum has many links to such studies. Thank you!]. She made no statements as to the efficacy and safety of one over the other. The conversation was such that Xeloda would be an acceptable substitute for Folfox.

Maia is right. I think the confusion is over XELODA vs. XELOX.

XELODA, which is an oral version of 5FU, would NOT be an acceptable substitute for Folfox since Folfox also includes Oxaliplatin. XELOX, however, is Xeloda + Oxaliplatin. It's what I had for my treatment along with Avastin.

mpbser wrote:At the second appointment, her recommendation was different although none of the variables had changed. She now said that the preferred treatment, if non-pump, was Xelox and referred to Xeloda as "inferior." She did not say what it was inferior to. We asked for studies to support this claim and have yet to see one.

The only thing I can think of is that she meant that taking Xeloda alone was inferior, which is correct for a Stage IV patient, since the addition of Oxaliplatin is a more aggressive treatment. Hence, her recommendation of XELOX.
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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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Just got post-surgery results and they aren't good

Postby LeonW » Wed Jun 28, 2017 7:06 pm

Xeloda is inferior to Xelox." Please substantiate

The Lancet - December 2014:
Volume 15, No. 13, p1481–1492 wrote:Combination therapy with oxaliplatin provided consistently improved outcomes without adversely affecting post-relapse survival in the adjuvant treatment of stage III colon cancer, irrespective of whether the fluoropyrimidine backbone was capecitabine or leucovorin and fluorouracil. These data add to the existing evidence that oxaliplatin plus capecitabine or leucovorin and fluorouracil is the standard of care for the adjuvant treatment of stage III colon cancer.
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Just got post-surgery results and they aren't good

Postby ams5796 » Wed Jun 28, 2017 7:17 pm

Christine,

I'm sure there are no links on this forum that dispute the claim that Xeloda is inferior to Xelox. That makes no sense and I think you're confused. Many folks above have explained the difference between 5FU, Xeloda, and Xelox. I hope that helps.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met


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