More chemo?

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skb
Posts: 49
Joined: Tue Mar 28, 2017 2:00 pm

Re: More chemo?

Postby skb » Wed Aug 23, 2017 11:48 am

I am a patient who started on the adjuvant chemo after having a 'complete response' and deferring surgery indefinitely. My images showed no trace of primary tumor. Biopsy from the area showed no cancer.

However I did not want to even debate with my doctor regarding additional chemo because I thought I had won the lottery by deferring radical surgery and by finding a doctor who confidently practices Wait-and-Watch .

I had the first infusion few days ago (5FU plus oxaliplatin) and I am dealing with several side effects. The surgery to place the port was in the morning and the infusion started in the afternoon. Some of the side effects are (in decreasing order of trouble caused for me)

(i) feels like there is a tiny frog in my throat- stuck there. :cry: Can't swallow or spit out. Perhaps caused by constriction of throat
(ii) Constipation caused by anti nausea medicine
(iii) burping, feeling of nausea- I was given several pills for that
(iv) extreme throat sensitivity to cold- feels like shards of glass in my throat- this is easy to handle. Just dont eat or drink cold stuff.
(v) tingling in fingers

I can deal with all of these. Dont know how I will feel after several rounds of this. Still going to work. Staying positive.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED
12/19 Clean CT, NED

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: More chemo?

Postby susie0915 » Wed Aug 23, 2017 12:30 pm

I did xelox after surgery. Most of my side effects were diarrhea, as my surgeon reversed my ileo early due to a bowel blockage 4 weeks after surgery caused by scar tissue. He said if he was going in to remove scar tissue he would reverse ileo if xray showed everything was healed. After the reversal I got c-diff, so that was fun right after reversal. I also had first bite syndrome for about a day after each infusion. The first bite I took of something would cause pain from ear down jawline. Then any bite after was fine. My neuropathy really didn't kick in until about a month after I finished my six rounds. Sixteen months later still have tingling and numbness in feet, but better. My hands are much better. I did have raynauds before cancer diagnosis so when it's cold my finger tips get numb. But I don't drop things like I did after chemo. The worse for me was the diarrhea. The oncologist will adjust dosages as side effects persist. My oncologist reduced both the xeloda and oxi although they do like to be sure it is in therapeutic range so I think there is a point where they can't reduce. It is also based on your weight, as I lost a lot of weight during chemo because of diarrhea I didn't really have any problems with the xeloda during chemoradiation. More just skin issues from radiation. Just know there are many options you can discuss with the oncologist, especially if you already are dealing with neuropathy and you were not going to have chemo initially.
Good Luck
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

benben
Posts: 314
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: More chemo?

Postby benben » Wed Aug 23, 2017 1:37 pm

Basil,

I was a bit concerned about your no chemo post surgery.
I understand the 6 rounds of folfox did wonders on your tumor, sounds like complete dissipation of the tumor.
That said how were margins on the pathology report? Did they find any dead cancer cells in the margins?
Even with complete response of the tumor having 1 lymphnode infected prior could be cause for concern.
Cancer cells can be dormant for some time.

There are so many factors and unknowns to consider when going through treatment and more treatments etc.

For your sake I hope the ONC and surgeon make a decision fully based on your possible outcomes.

Switching to a softer approach may be beneficial to you, such as 5-FU with luke, or Xeloda.
My experience with Folfox so far is that neuropathy is increasing after 7 doses. It's much more difficult for me to play bar chords on guitar right now for example.
I suggested to my ONC after 8 treatments stopping OXI completely and doing just 5FU with luke. His initial response was that he didn't think that 5FU alone was very effective.
However, he has switched his tune last phone call I had with him. Now thinks it may be beneficial to complete the last 4 rounds with just 5FU... I don't know. I was shooting for 8 rounds.
I'm down to 75% OXI and that did decrease my fatigue and other symptoms a little, but neuropathy is still increasing. Sounds like it may increase for a couple months post treatment, at least in your case.
I have had low neutrophils since round 1 and low platelets since treatment 5. The constant monitoring and injections to me is worse than the other physical symptoms including neuropathy - but now that I'm starting
to lose a little bit of motor function of hands and feet are starting to get a bit numb in the toes - I'm ready to end the OXI.

hoping the best for you, whatever that ends up being.
Cancer and therapy are strange. One day one thing happens the next day it may be a complete 180.
It's difficult to balance everything.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
6/19 CT - NED (2 years!)

Basil
Posts: 268
Joined: Thu Mar 16, 2017 12:33 pm

Re: More chemo?

Postby Basil » Wed Aug 23, 2017 7:16 pm

Thank you everyone for your responses.

My oncologist does want to talk next week about further chemo. Don't know if it would be FOLFOX or something else. I had neuropathy after round two and it's annoying/uncomfortable day-to-day.

I understand it's standard to have adjuvant chemo, but I had three months preadjuvant chemo. That's not chemo rad or anything reduced - it was six full doses of FOLFOX. According to the IDEA study, based on my risk factor (low), rounds 6-12 would have a negligible therapeutic effect.

And, for those asking, my n1 was based on the MRI at dx, which showed it to be inflamed. My path report was completely clear. No cancer and no dead cancer cells. Just some scar tissue and normal cells. Surgeon's office said we will never know if the LN had cancer or not but it certainly didn't at resection.

Anyway, not making any decisions until next week but it's a bummer going from "you're done!" to "hold your horses" without having any change in condition. That condition is NED by the way :) according to my doctors.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

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

Re: More chemo?

Postby Maia » Wed Aug 23, 2017 8:47 pm

Basil, just in case: an immunotherapy trial for those NED at high risk of recurrence. 4 inmunizations. A fellow, Maellous, had this done.
viewtopic.php?f=1&t=56485
If the locations do not suit you: http://www.corpangelnetwork.org/home
Just putting this out there, just in case.

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: More chemo?

Postby NHMike » Wed Aug 23, 2017 9:12 pm

Basil wrote:Thank you everyone for your responses.

My oncologist does want to talk next week about further chemo. Don't know if it would be FOLFOX or something else. I had neuropathy after round two and it's annoying/uncomfortable day-to-day.

I understand it's standard to have adjuvant chemo, but I had three months preadjuvant chemo. That's not chemo rad or anything reduced - it was six full doses of FOLFOX. According to the IDEA study, based on my risk factor (low), rounds 6-12 would have a negligible therapeutic effect.

And, for those asking, my n1 was based on the MRI at dx, which showed it to be inflamed. My path report was completely clear. No cancer and no dead cancer cells. Just some scar tissue and normal cells. Surgeon's office said we will never know if the LN had cancer or not but it certainly didn't at resection.

Anyway, not making any decisions until next week but it's a bummer going from "you're done!" to "hold your horses" without having any change in condition. That condition is NED by the way :) according to my doctors.


I'm sorry you ran into this and it's scary for all of us - that you can be done and then not done. I've taken to hoping for the best but being prepared for the worst. I was thinking that I'm going with Xeloda - surgery - XELOX. You're just getting it in the reverse order. Did the Oxi do it's think on the pre-surgical side?

I'd love the CRC immunizations I think. But you have to be stage 4 to get into that trial (DFCI Oncologist told me that). It takes three months to make the vaccine as it's custom for every patient and I can't imagine what it costs. Wouldn't it be great if that were like the MMR immunizations and if you could get it at the local CVS? Please keep us informed.
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

Basil
Posts: 268
Joined: Thu Mar 16, 2017 12:33 pm

Re: More chemo?

Postby Basil » Wed Aug 23, 2017 9:58 pm

The oxi definitely worked. Based on the path report, I wax NED even before surgery. The question is whether it's worth risking further neuropathy for adjuvant treatment.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

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

Re: More chemo?

Postby Maia » Thu Aug 24, 2017 4:47 am

NHMike wrote:I'd love the CRC immunizations I think. But you have to be stage 4 to get into that trial (DFCI Oncologist told me that). It takes three months to make the vaccine as it's custom for every patient and I can't imagine what it costs.


If you are referring to the trial I was mentioning, # NCT02960594, https://clinicaltrials.gov/ct2/show/NCT02960594, I beg to differ. That trial is for' ''Adults With Solid Tumors at High Risk of Relapse'' and that includes also Stage III CRC, at least. Our fellow Maelleous, stage III, underwent that trial, given he couldn't get chemotherapy after surgery, because a deficiency to process 5-FU.
Also, there are other immuno trials, ongoing but not recruiting, for stage III, like https://clinicaltrials.gov/ct2/show/NCT01890213
Statements about clinical trials being last resource or only available to stage IV patients are inaccurate.
The agents provided in the frame of a clinical trial have not cost for the patients.

Basil
Posts: 268
Joined: Thu Mar 16, 2017 12:33 pm

Re: More chemo?

Postby Basil » Thu Aug 31, 2017 6:48 pm

My meeting with my onc was delayed because Harvey shut the city down this week. Last week my case was presented to "conference" for further input from other doctors at MDA. I do not know the constitution, number or credentials of the colorectal conference participants, only that they present unique or interesting cases to get additional input from the doctors there. They're unanimous opinion was no further chemo.

Still going to meet with the onc next week and the surgeon after that before making a final decision.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

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

Re: More chemo?

Postby Robino1 » Thu Aug 31, 2017 6:59 pm

Basil wrote:My meeting with my onc was delayed because Harvey shut the city down this week. Last week my case was presented to "conference" for further input from other doctors at MDA. I do not know the constitution, number or credentials of the colorectal conference participants, only that they present unique or interesting cases to get additional input from the doctors there. They're unanimous opinion was no further chemo.

Still going to meet with the onc next week and the surgeon after that before making a final decision.


It's still excellent news!! Congratulations! :)
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

Cured
Posts: 555
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Location: MO

Re: More chemo?

Postby Cured » Thu Aug 31, 2017 7:13 pm

Basil, You are truly blessed to have zero lymph node involvement. I was impressed by what JJH said - the clilnical trial and all. Knowledge builds upon knowledge.

To me it sounds weird to do FOLFOX before surgery. Was that an element of the trial? It sounds like it worked though. Although the Oxy is miserable, it does help to kill those micro-tumors which were in the bloodstream of those of us with nodes which were found with cancer. Would I be cancer free if I never did the FOLFOX? I am cured 9 years now.

I don't know how another round of FOLFOIX would help. My Surgeon was also my personal doctor in charge of my treatment and I did what he said. His Patients have positive outcomes at twice the average. It sounds like you have the right guy.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Basil
Posts: 268
Joined: Thu Mar 16, 2017 12:33 pm

Re: More chemo?

Postby Basil » Fri Sep 01, 2017 6:32 pm

I won't name my doctor because I don't want to suggest opening a discussion of individual physicians but I will say that his resume is among the best you will find anywhere. And I mean anywhere. I have the utmost confidence in his expertise and judgment. I am happy that his treatment plan (I.e. Congrats basil! You're done!) was shared by other docs at conference. I have not made any final decision but am thinking I'm going to be looking for that bell at infusion when I get my port flushed next week.

As to the trial, it is three months FOLFOX, surgery and the remaining three months FOLFOX post surgery. The intervening factor was the IDEA study, which found that three months FOLFOX had similar therapeutic results as the full six. So the initial three months of FOLFOX completely destroyed the tumor and, if it was cancerous at all, the cancer in the lymph node. That's certainly not a typical response but in my case six rounds of oxi and 5Fu caused a complete path response.

Maybe someday, maybe someday soon, that will be the SOC for stage iii.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

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

Re: More chemo?

Postby Maia » Sat Sep 02, 2017 4:25 pm

Congrats, Basil!!! This if fantastic!! Kudos to your doc and here to the trial protocol to become SOC.

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: More chemo?

Postby JJH » Sat Sep 02, 2017 11:45 pm

Basil wrote:... I have an appointment Wednesday afternoon to discuss whether additional adjuvant chemo is worthwhile. My PCP says it's not. We'll see. MDA should be taking outpatient by then.

Basil wrote:All outpatient at MDA is cancelled tomorrow.

Basil wrote:My meeting with my onc was delayed because Harvey shut the city down this week...
Still going to meet with the onc next week and the surgeon after that before making a final decision.

Basil - When you eventually meet with your doctor(s) this week, I think you should be prepared for this meeting in case it turns out to be an end-of-treatment meeting. In other words, if the net result of your next meeting is that you and your doctor(s) decide "No more chemo needed", then you will be at the transition between active treatment and the five-year surveillance period (after you have had your ileostomy reversal, of course).

This transition is an important event because it represents a shift from treatment-guided decisions to surveillance-guided decisions. The treatments you have had so far have been surgery and FOLFOX chemo, directed by a surgeon and an oncologist. After you have made the transition into the followup period, however, there is no longer any direct need for a surgeon and no direct need for an oncologist apart from scheduling and interpreting periodic tests. The main focus for a Stage II or Stage III followup patient would be in other areas related to long-term effects of previous treatment -- for example long-term, delayed effects of chemo or surgery. These problems may require other kinds of expertise, and other kinds of specialists such as dermatologists, urologists, proctologists, gastro-enterologists, neurologists, cardiologists, endocrinologists, physical therapists, etc., for resolution.

Thus, for a Stage I, Stage II. or Stage III followup patient, it is important for this transition to be acknowledged openly and for explicit plans to be made to orient the patient's medical team in a different direction in order to be prepared for this new and different sort of challenge -- the challenge of dealing with various treatment-induced disorders.

Normally at this transition stage the patient is given two documents: (1) A treatment summary document giving details of DX and all DX-related treatments, and (2) A customized follow-up care plan with a schedule for the next five years:

https://www.asco.org/sites/new-www.asco.org/files/content-files/practice-and-guidelines/documents/colorectal-cancer-treatment-summary-and-survivorship-care-plan.docx

https://www.livestrong.org/we-can-help/healthy-living-after-treatment/late-effects-of-cancer-treatment

http://www.healthline.com/health/cancer/effects-on-body

http://www.cancer.net/survivorship/long-term-side-effects-cancer-treatment

http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-colorectal-cancer

Good luck on your meetings this next week. Let us know the outcome.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: More chemo?

Postby NHMike » Sun Sep 03, 2017 6:12 am

JJH wrote:
Basil wrote:... I have an appointment Wednesday afternoon to discuss whether additional adjuvant chemo is worthwhile. My PCP says it's not. We'll see. MDA should be taking outpatient by then.

Basil wrote:All outpatient at MDA is cancelled tomorrow.

Basil wrote:My meeting with my onc was delayed because Harvey shut the city down this week...
Still going to meet with the onc next week and the surgeon after that before making a final decision.

Basil - When you eventually meet with your doctor(s) this week, I think you should be prepared for this meeting in case it turns out to be an end-of-treatment meeting. In other words, if the net result of your next meeting is that you and your doctor(s) decide "No more chemo needed", then you will be at the transition between active treatment and the five-year surveillance period (after you have had your ileostomy reversal, of course).

This transition is an important event because it represents a shift from treatment-guided decisions to surveillance-guided decisions. The treatments you have had so far have been surgery and FOLFOX chemo, directed by a surgeon and an oncologist. After you have made the transition into the followup period, however, there is no longer any direct need for a surgeon and no direct need for an oncologist apart from scheduling and interpreting periodic tests. The main focus for a Stage II or Stage III followup patient would be in other areas related to long-term effects of previous treatment -- for example long-term, delayed effects of chemo or surgery. These problems may require other kinds of expertise, and other kinds of specialists such as dermatologists, urologists, proctologists, gastro-enterologists, neurologists, cardiologists, endocrinologists, physical therapists, etc., for resolution.

Thus, for a Stage I, Stage II. or Stage III followup patient, it is important for this transition to be acknowledged openly and for explicit plans to be made to orient the patient's medical team in a different direction in order to be prepared for this new and different sort of challenge -- the challenge of dealing with various treatment-induced disorders.

Normally at this transition stage the patient is given two documents: (1) A treatment summary document giving details of DX and all DX-related treatments, and (2) A customized follow-up care plan with a schedule for the next five years:

https://www.asco.org/sites/new-www.asco.org/files/content-files/practice-and-guidelines/documents/colorectal-cancer-treatment-summary-and-survivorship-care-plan.docx

https://www.livestrong.org/we-can-help/healthy-living-after-treatment/late-effects-of-cancer-treatment

http://www.healthline.com/health/cancer/effects-on-body

Thanks for your post. I haven't given any thought at all to this sort of thing - too many things to think about in the near-term. It's good to take a peek at the longer term to have it in the back of my mind.
http://www.cancer.net/survivorship/long-term-side-effects-cancer-treatment

http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-colorectal-cancer

Good luck on your meetings this next week. Let us know the outcome.
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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