Colon cancer: my treatment and side effects

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Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Fri Oct 12, 2018 2:55 pm

Just got home from the hospital after getting infusion #8. Not so great news. My platelets are down to 96. So they gave me the regular Oxali/Leucovorin dose and also the 5FU take-home bottle, but I didn't get the 5FU bolus/push, and next infusion they're going to cut both drugs down by 25% to try to keep from having to delay any treatments. I'm glad that I don't need to delay treatments yet, but ugh. It makes me nervous, that I won't be getting the full amount. I would rather do that than have to delay, I'm sure, but still.

Maybe with the Oxali dose reduction I'll avoid getting any neuropathy before I'm done with chemo. We'll see.

Apparently the canisters they have been giving me for 5FU are no longer available, so instead I got a bigger-around double bladder doser thing without a hard exterior. They put that in a heart rate monitor bag since the new thing didn't fit in my bag for the canister. Kinda weird but I guess it works. I am nervous about maybe banging it into something and damaging the bladder, though.

I hope my chances of beating this aren't going to be tanked by reducing the chemo dosage.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Sat Oct 27, 2018 5:30 pm

Had my 9th infusion yesterday. With no bolus at infusion #8, my platelets went back up from 96 to 125, a nice improvement. My liver enzymes are at the lowest they've been since early August, too; one is just a hair inside of normal range, and the other is less than 2x normal.

This round my chemo was cut down by 25% across the board (bolus restored but cut by 25%, as well as Oxali and 5FU cut back). This was to prevent my platelets from dipping too low. The cold sensitivity seems just as bad as normal, although I'm noticing less of a tremor in my hands and calves than usual for today. My appetite is about as blah as it usually is, too. None of my symptoms seem notably worse. Still no sign of neuropathy so far.

Having trouble believing I only have 3 more infusions left after this. I hope it's all been super effective!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

margiej
Posts: 50
Joined: Sat Apr 14, 2018 8:46 am

Re: Colon cancer: my treatment and side effects

Postby margiej » Sat Oct 27, 2018 5:44 pm

So glad your treatment is going well. You got this!
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

AppleTree
Posts: 240
Joined: Fri Mar 18, 2016 8:16 am

Re: Colon cancer: my treatment and side effects

Postby AppleTree » Sat Oct 27, 2018 11:46 pm

Toward the end, my treatments were every 3 weeks because my platelets were too low. I am almost positive in Europe you get 8 treatments of Folfox. I keep thinking this because when I was in Austria I am pretty sure they were talking about 8. I came back to the USA. Once I passed 8 I felt a little more relieved and figured anything above was "extra". I did not mind skipping a week at the end, quite possibly it helped me with neuropathy. 6 months out and it feels like I am walking on wet sand or that my socks are bunched up in my shoes. Weird, but certainly tolerable!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Sun Oct 28, 2018 9:12 am

AppleTree, that's how I feel about it too. I know they are looking at whether 7 or 8 doses of FOLFOX is sufficient compared to 12, and the common wisdom seems to be that making it to at least 7 or 8 is best. I did talk to my oncologist about potentially cutting out the oxaliplatin after that, but she felt that my additional risk because of the 2nd noncontiguous tumor deposit they found (close to my original tumor, fortunately) makes it important for me to complete all 12 rounds. Not a hard sell for me at this point, since I don't have neuropathy yet and my side effects haven't been bad. Hoping everything holds steady for me. I know neuropathy can show up after treatment ends, I hope it's a slow onset for me if it does happen, so we can adjust accordingly.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Colon cancer: my treatment and side effects

Postby Caat55 » Tue Oct 30, 2018 8:15 pm

Jannine
My tingling in feet showed up about one month off chemo. It is different than the tingling, painful feeling from cold but definitely the cold makes it worse. It isn't always an issue. I do hope it goes away but I can live with it.
S
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

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Fri Nov 09, 2018 8:32 pm

Well, today -- infusion #10 -- has been weird.

I got the same 25% cut in dosage as before, as I expected. My neuropathy showed up a week after Infusion 9, a week ago today, and has held steady and has only been mildly tingly in my feet and a little numb in my fingers when I rub them together. I did speak with my oncologist's nurse, and she said this is what they do when it's very mild and not painful. They had seen the note I entered in the system a week ago about my neuropathy. My oncologist is at a conference so was not there to see me (this was an off week for me to see her). I will see her the next time I go in for an infusion.

We finished up by 12:30pm, which was by far the earliest we've ever gotten out of there. We got lab results back very fast and also the chemo drug request went through very quickly. We ate downtown at a local deli/grill my husband likes, and then came home. When I got home I felt really lousy and my stomach felt off, so after I did a small work thing that was time sensitive and needed to be turned in today, I went to bed around 3pm. I woke up shortly before 8. I feel a whole lot better, but I hope I don't just lie awake most of the night. I had intended to drink lots of water to flush out the toxins today, so I'm now trying to catch up on that. I do think I needed the sleep, so I'm hopeful it'll be fine. I'll probably go to bed a bit late.

I was really surprised to sleep so long on an infusion afternoon; normally I don't get tired until disconnect day.

(Edited because it looks like I hadn't mentioned my onset of neuropathy in this thread yet)
Last edited by Jannine on Fri Nov 09, 2018 9:20 pm, edited 2 times in total.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

Punky44
Posts: 72
Joined: Mon Oct 01, 2018 4:29 pm

Re: Colon cancer: my treatment and side effects

Postby Punky44 » Fri Nov 09, 2018 8:35 pm

Thank you so much for sharing your experience after each infusion. My mom just started her first round on Monday. I know everyone will react differently but it helps to get some insight into another’s experience.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—1 down, 7 to go!

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Fri Nov 09, 2018 9:26 pm

Good luck to your mom, Punky! And I'm glad this is helpful. That's pretty much why I'm writing this. Other people's experiences have been so helpful for me to hear about, to get perspective and understand where my side effects fit in on the spectrum of "not so bad" vs. "TALK TO YOUR DOCTOR ASAP." It also helps me to know how most doctors tend to handle side effects. Then I have an idea of whether what we're hearing fits in with what others have heard, or if the approach seems oddly out of whack with what others like us report.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4


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