Irinotecan tips?

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Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Irinotecan tips?

Postby Mohrfamily » Wed Jul 24, 2019 3:13 pm

DH is going to add irinotecan to his cocktail in 2 weeks so I think this is now FOLFIRI? Plus vectibix.

Any tips on diet, meds to take to help ease side effects? DH is a little scared definitely intimidated by the side effects and their severity. Anything that could ease his mind (and mine) would be helpful.

The symptoms I've heard are similar to FOLFOX but being amped up but they talked about a burning from the inside that is less common but fatal? Help!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Irinotecan tips?

Postby ginabeewell » Wed Jul 24, 2019 5:10 pm

Has he been on Vectibix yet? He should ask to treat the rash prophylactically with Doxycycline and a steroid cream for his face. It appears in 90% of patients and best practice is to treat before it shows up although very few doctors seem to.

It’s definitely the worst side effect I’ve had to deal with.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

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Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Irinotecan tips?

Postby Mohrfamily » Wed Jul 24, 2019 5:35 pm

ginabeewell wrote:Has he been on Vectibix yet?
It’s definitely the worst side effect I’ve had to deal with.


Yes he's covered in rash and using steroid cream and oral meds. We find its more tolerable when he gets a rub down with the cerave? Cream/moisturizers on day 6 after infusion every other day.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Irinotecan tips?

Postby jep » Wed Jul 24, 2019 6:30 pm

ginabeewell wrote:Has he been on Vectibix yet? He should ask to treat the rash prophylactically with Doxycycline and a steroid cream for his face. It appears in 90% of patients and best practice is to treat before it shows up although very few doctors seem to.

It’s definitely the worst side effect I’ve had to deal with.


Yes, absolutely....my husband’s skin was so bad, especially his face....definitely ask questions about this and be proactive with the meds that will battle this side effect...it was very bad for my husband, but cleared up pretty quickly when he finished the Vectibix....
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

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

Re: Irinotecan tips?

Postby juliej » Wed Jul 24, 2019 7:06 pm

As I'm sure you know, Irinotecan often causes serious diarrhea. :( If he starts having stomach or abdominal cramps while he's being infused, ask the nurse for a shot of atropine. It instantly stops the cramping! I had a shot every time I had an infusion of irinotecan. They just shoot it into your IV so no needles! :D

Other tips - if the diarrhea gets bad and Imodium isn't cutting it, try alternating Lomotil and Imodium. That combo seems to work for lots of people. Also, some people are helped more by the "multi-symptom" variety of Imodium since it also helps with gas. You can give that a try too.

Remember that diarrhea causes dehydration, which makes everything feel worse. Get him to drink water with electrolytes or add Nuun tabs to regular water to make an electrolyte drink. Even if he just sips at it all day, make sure he's drinking something all the time.

Hope this helps!
Juliej
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

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Irinotecan tips?

Postby Mohrfamily » Thu Jul 25, 2019 6:39 pm

Thank you everyone I keep mentioning the BRAT diet for diarrhea too
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Irinotecan tips?

Postby Rikimaroo » Thu Jul 25, 2019 6:47 pm

FOLFIRI, always made me throw up on the first day, twice. Sometimes once on the 2nd day. It's absolutely frustrating to do it.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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