FOLFOX Treatment Diary

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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Tue Jul 05, 2016 1:35 pm

Went to get my bi-weekly lab work to make sure I am still alive enough for the next treatment cycle. I really don't like going to the Oncologists office, even though they are the nicest people around. Just going into the parking lot 'tightens my colon' so to speak.

The results of the lab show everything running hot, straight and normal.
I have been feeling pretty much normal the last few days. For the 4th holiday my wife and I went to our ranch. We made a brisket, drank a little beer and watched the cows. It was very nice and peaceful.

The surgeon won't release me to do strenuous exercise until next week - I feel perfectly well but want to be a compliant patient and truly don't need a self induced hernia on top of all of this.... so I mostly got to boss my wife around and took naps as needed.

CRguy - I had read your going-ons as well as Nik. It was very helpful and it inspired me to give it a go. I haven't noticed the Decadron/Zofran causing any issues. My 'habits' have changed fairly dramatically and I am not sure yet what the new normal is. I used to be a once a day in the morning. Regular as clockwork. Post surgery recovery it's been 3 times a day or more...

I have read that the 'roids cause sleep problems and mood swings - but I havnt noticed that yet. Although when I feel twitchy in the evening I will sometime take an Ativan or even a Phenergan to help with sleep.
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: FOLFOX Treatment Diary

Postby Soccermom2boys » Tue Jul 05, 2016 11:36 pm

First of all, love your tag line "Embrace the Suck"--if that's not the truth! What caught me on your last post was how you hated going to the cancer center even though the people there couldn't be nicer. I feel exactly the same way. I would go to every round of chemo with an internal sulking and no matter how much I hated submitting myself to the poisoning, those nurses that run the infusion center are absolute angels and always managed to make me smile when I didn't think I had it in me.

Glad to hear all of your blood work is keeping you on schedule (I hated making any more trips than was necessary to the cancer center so I did all of my chemo blood work at a Lab Corp near my house on the way home from work). Good to hear you also were able to enjoy some relaxation and down time with your wife on the ranch--those are the moments you need to power you through the tough times.

Hope you get the all clear to return to some activities to help you heal mentally as well as physically--any time you can get back to doing what you were previously is a big hurdle. Keep on keeping on, you sound like you are doing well with all that has been thrown at you! :)
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Yelin
Posts: 12
Joined: Wed Jul 06, 2016 5:04 am

Re: FOLFOX Treatment Diary

Postby Yelin » Wed Jul 06, 2016 7:43 am

I am on the same boat with you, four cycles done, how can you manage to be so strong, I am not....

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: FOLFOX Treatment Diary

Postby teresajj1 » Wed Jul 06, 2016 8:07 pm

Yep this is the right place & it's good to share your experience in detail for newbies. We know more about the experience better than the nurses or doctors anyway. Unfortunately, for me treatment did get worse as far as side affects go. I also, find it harder & harder to drive to chemo every 2 weeks & continue putting these toxins in my body. Best thing to do is try & stay positive. During treatment I sleep a lot and eat whatever I want & drink a ton of water. Then after a few days (4-5)I start to feel better & go back to healthy food, supplements, exercise, & work. And maybe a glass or 2 of Wine a Couple of Days on my off week to keep me from going insane. Good luck on your journey & thanks for sharing.
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo

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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Tue Jul 12, 2016 5:10 pm

Alright - I finished ridin' the pump for my second 'treatment' (I love the euphemism of calling it a treatment). So the actual infusion day seemed to go a lot faster this time but it was still about 4 hours. There are a few people on the same schedule - we give each other a wan smile and thats about it. In reality this is a path you have take alone at the end of the day.

I can't really tell if the 'roids are causing any sleeplessness or tweaking, I just don't feel right is all I can say. I have noticed all the prep meds are causing a fair bit of constipation. I am planning on miralaxing starting the day before. Probably will also take an Ativan to make life easier for my wife. In addition I have noticed that I get wicked reflux the evening when I get home. This is something that I never had BCC (before colon cancer) so I will probably take a Pepcid that morning as well. The Doc and the nurses say the Oxaliplatin is what is causing most of the misery.

No neuropathy this go round - although I woke up in the middle of the night and my hand was asleep - I said shit its started and then realized I was just laying on it. The cold sensitvity was more noticeable this time to the point that I had to use a dishtowel to hold my beer when I opened it. (I am sticking to Guinness Stout for its healthful properties) and I really had to let it warm up a bit before drinking it.

For me the nadir seems to be the second day after the infusion. Had low grade queasiness that was handled by Phenergan and/or Zofran and just a strange feeling of tiredness. I went to work as normal but had to go home after the pump was dc'd and take a nap. Since I am done on Friday my weekends are spent recovering and again it is just this feeling of fatigue. Its not specific - just there.

One thing I noticed more this cycle was the feeling that my mouth had been burned by too hot pizza. Which sort of makes sense as those cells are rapid turnover and would be affected. I attribute that to food not tasting right - its because your tastebuds are zapped.

I have gotten pretty good with the pump. For my shower I take a bight on the pack, lash it to the bits and then run out the line to loo'ard. (I have been re-reading my Patrick O'Brien). For work I just wear shorts with cargo pockets and I can stuff the pump there so as not to scare the normals.

Only 10 more to go!

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

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

Re: FOLFOX Treatment Diary

Postby juliej » Tue Jul 12, 2016 6:09 pm

The dexy gave me major insomnia and twitchiness. However, I got so much done after an infusion that when I finally crashed two days later I was ahead on everything! :D

I sympathize with the constipation. That's from the anti-emetics they're giving you in the pre-meds. It's easy to swing the other way so be careful about miralax. I took 2 Senokot tablets the night before the infusion and then 3 Colace the following day. Your reflux problem is definitely from the Oxaliplatin. Instead of Pepcid you should consider taking Cimetidine (brand name=Tagamet) since there are several studies showing Cimetidine increases survival of colorectal cancer patients. Ask your onc if you can switch.

I remember the burned mouth feeling. You're right that it's from death of mouth/tongue cells. Kind of creepy if you think about it too long. No mouth sores? If you start getting them, buy some kefir (The Greek Gods, Helios and Lifeway are good brands) and hold a small amount in your mouth for a few minutes before swallowing it. It seems to rebalance the PH plus the probiotics kill any bad bacteria hanging out there.

“Never mind manoeuvres, always go at them.”
― Patrick O'Brian, Master and Commander
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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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Thu Jul 14, 2016 12:40 pm

JulieJ - you were right about the miralax. I should have taken it on infusion day and not waited three days. Whoo doggies....
The interesting/weird thing is that today I woke up feeling pretty darn good. Had a normal breakfast of toast and coffee and then about thirty minutes later started to get really queasy. Not really super nauseous but just a real icky feeling in my tummy area.

Finally went ahead and took a Zofran which seem to calm things down after about 20 or so minutes, but it is not gone away completely. Not too hungry at lunch time - I had half a peanut butter, apple and banana sandwich. I would have thought that 6 days post pump I wouldnt still be feeling that way and the day before nothing at all... the only real difference is that I didn't take a Phenergan last night before bed.

Just when I think I have the pattern all figured out.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

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

Re: FOLFOX Treatment Diary

Postby juliej » Thu Jul 14, 2016 4:45 pm

Could have been the missing Phenergan. Could have been a quirk of the treatment cycle. At the beginning I kept a journal thinking I'd see a pattern and use it to determine my worst/best days and plan activities accordingly. After a few similar (nearly identical) cycles, it threw a curve ball. That's when I discovered there was very little consistency except for certain things like the neuropathy getting worse as the number of cycles increased. I'd keep my hydration, meds, hours of sleep, exercise, etc. the same, but some cycles would just be worse for no damn reason -- or better for no damn reason.

I became a big fan of Goldfish crackers for the sudden nausea. Looked like I was buying for triplet toddlers when I went to the store! :D I took a zip-lock bag of them with me everywhere and nibbled a few when I got those sudden icky stomach sensations. You might give them a try.
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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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Fri Jul 15, 2016 11:22 am

JulieJ - the gold fish idea is a good one. I will have to keep some in my pack. I am starting to understand the lack of pattern you mentioned as you will see below.

Today I woke up feeling perfectly fine. No queasiness, ready for breakfast. I started the ritual of french press coffee making - what was that? A bit of the 'Downtown Push Down'. I have learned post colectomy both to never trust a fart and when the push down comes head straight to the dooser. What ensued was what I like to call the 'Dire Rear' or in some quarters - 'Hot Bootie' or perhaps 'Rectal Vomiting'. Well isn't this a fresh slice.

So what to do, what to do... The Onc says its not unusual that this would happen mid cycle, however I had no real problem last cycle. He also said (and I have read it here) get right in front of it with Imodium, don't wait until it gets too bad and you have to go to the hospital. So with that in mind I went and took one. Live better chemically I always say. It seems to have quietened everything down - but made me fall smooth asleep after breakfast

Its now lunch time and I am not super hungry but will see what looks good at the little store next to the office. I wish there was a Krispy Kreme nearby

-Andy

“Should I feel better if I were to vomit?’ asked Jagiello. ‘I doubt it,’ said Stephen. ‘It has done nothing for the Colonel.”
― Patrick O'Brian, The Surgeon's Mate
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

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

Re: FOLFOX Treatment Diary

Postby juliej » Fri Jul 15, 2016 6:09 pm

My favorite is "Hot Bootie" :D

Yes, all of us here have learned not to trust a fart (and to carry backup underwear at all times)! Your onc is right: take two Imodium immediately. Add some Gas-X to calm things down more. Take another Imodium after each loose stool. Ignore the package directions on limits. There are no limits for patients on chemo. And watch your electrolytes after diarrhea. Buy Nunn tablets, dissolve one in a bottle of water, and drink it. Or you can drink some type of sports drink, although I found their high sugar content just aggravated things.

Also, make sure your potassium levels aren't getting too low from the diarrhea. That happened to me once and I ended up staying another hour getting infused with IV potassium. Not fun. You can check your levels on your lab reports. Potassium-rich foods include bananas, dried apricots, sweet potatoes, coconut water. Not Krispy Kreme donuts, unfortunately. :D

“borborygmus,”
― Patrick O'Brian, Desolation Island
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

User avatar
DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Thu Jul 28, 2016 11:55 am

Only 9 more to go.

So there is a bit of a pattern emerging. I am sure now the dexamethasone is the culprit causing major tweaking after infusion. For me I get amazing tremors in my hands (like if you want your martini shaken not stirred I am your man) and voice, wicked bad reflux, and irritability with hyper-vigilance (like I am a 3 tour Marine fresh back from the 'Sandbox'). This go round I loaded up on Tagamet (thanks JulieJ) and Ativan both of which knocked the systems back down to tolerable. I also started taking Zofran on the 3rd day post to keep the queasiness at bay which abated about day 5 post. Now I know day 7 I got queasy again out of the blue, back on the Zofran and then day 8 boom - the 'Dire Rear' - just like the last cycle. This time it took more Imodium the put the revolution down - but things have quietened significantly. I am just glad I wasn't heading to or at the office. I am going to stay home today.

This cycle I have had a lot more fatigue - thats the only way to describe it. Its more than just needing a nap. Its a generalized lack of get up and go. I went to our Pilates class on Monday (5 days post) it felt pretty good but at the 30 minute mark I had to throw in the towel literally I was so light headed I was afraid of passing out. Still I am glad I went. Had to go sit downstairs at the gym for 30 minutes until I was sure I could drive home. I didn't do too well at work because of it. I had motivation issues on top of the need to sleep. The good thing is that I can work from home.

The cold sensitivity is a bit worse but still fairly tolerable. I was eating some grapes and each one felt as if it was frozen but of course it wasn't. No real peripheral neuropathy as of yet although the is a definite 'feeling' in my hands and feet. The way I describe it is that it feels like when you have been in the bathtub too long and you prune up - although there is no visible pruning. I am sure this is the incipient stage of neuropathy.

The mouth still feels like its been scalded by too hot pizza. It seemed to abate the last few days of the cycle but of course came back right after the infusion.

One more weird side affect that manifested this time was some pretty intense cramping in both of my calfs. That started the night after infusion and lasted about 3 days. I am eating plenty of banana's etc for potassium. Some research has indicated that is part of the neuropathy pattern.

That would be locking the horse after the stable door is gone, a very foolish thing to do.
Patrick O'Brian
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

User avatar
DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Fri Jul 29, 2016 9:02 am

Wow - yesterday was a day for sure. Had the 'Dire Rear' like nobodies business. Took immodium after each bout. Last cycle it was one and done, but not this time. Then the gut cramps started. They were bad enough to make me sweat a little bit until they passed. I have read that immodium can cause that. Took some GasX and then finally 1mg of Ativan. The Ativan seemed to bring the pain level down from unbearable to merely uncomfortable. Took .5mg of Ativan at bed time and was able to sleep most of the night. So far today the hot bootie seems to be under control and the cramps while still there are fairly mild.

Sheesh. This isn't for the faint of heart.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: FOLFOX Treatment Diary

Postby Soccermom2boys » Fri Jul 29, 2016 1:46 pm

I am glad to hear today is treating you much better than yesterday! Gotta say that I love reading your posts between the "hot bootie" and "dire rear" and the martini shaking, you had me cracking up! Sad what we endure to get some humor, but always good when we can find the humor in such circumstances! You are a quarter of the way through with "treatments" (I like Writergirl's euphemism of "fluffypuff" the best--woo hoo! Keep on posting, I am enjoying your perspective on surviving FOLFOX as I have been through eight rounds of it myself I can appreciate it all. Hope the weekend brings relief and a rebound back to some normalcy. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: FOLFOX Treatment Diary

Postby NateA » Fri Jul 29, 2016 3:39 pm

In the shirt thing...run your tubs thru the bottom, doesn't tweak the shirt, and seems more comfy to me. Glad your doing this, new folks can use this for sure.

Regards
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

User avatar
DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Mon Aug 01, 2016 11:29 am

What a weekend (that started on Thursday) sheesh. The lower abdominal cramps continued to get worse, coming in waves about every 15 minutes or so. They were bad enough to cause some manly groans (soft) and break in to a sweat.

The hot bootie has subsided pretty much but that maybe because it was so hard to make myself eat anything. Tried to see if any of the meds I had would help at all. Ativan - didnt really help, Phenergan no go. So I 'gutted' it out till Friday morning when I said to myself - lets not wait until everybody is gone from the Oncologists office and then decide this wont work. I called and they had me come in to visit with the PA. They did full labs (which were distressingly normal). She said try hot-water bottle, Advil and if it didnt get better call the after hours number. In hind sight I should have said - what about Lomotil, doesn't it have anti-spasmodic properties? It would have saved a lot of misery. Perhaps I was too stoic. Its just a flesh wound...

Saturday was more of the same - perhaps a bit better. However Sunday was back on the rack. I called the after hours Doc who called in the Lomotil and 15 minutes later I had a text from hour CVS that it was ready for pick up. Took two as prescribed and thirty minutes later whew! It wasn't quite magic but it was pretty dramatic relief. Ended up sleeping most of the day. Had a bit of breakthrough cramping before the next dose but held out to get on schedule. Took two more doses and now Monday morning feeling almost normal. Made some cream of wheat for breakfast which tasted nice. Might even have to poop.

My lesson learned - don't wait so long before getting help. When you are on chemo you are not crying wolf. What should have been rest days before the next beat down were spent in pain and not eating.

"Wittles is up' said Killick" ~ Patrick O'Brian
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019


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