Folfiri and Nausea

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tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Folfiri and Nausea

Postby tater » Tue Dec 03, 2019 4:28 pm

Hey I need some help with my wife. My wife did FOLFOX about two years ago and had zero issues. She did her first round of FOLFIRI yesterday and it is kicking her butt. She is so nauseated and feeling sick, I have never seen her like this. Its weird because the Onc. said that the side effects should be the same as when she was on FOLFOX. What has others experience been with the two or with just FOLFIRI? What can I do to help her? She has prescription I'm not sure for what, but can you take more than one nausea drug? We have a call into the Onc. but curious what others have seen and done.

Thanks in advance.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Fluff Bottom
Posts: 77
Joined: Fri Oct 23, 2015 8:13 am

Re: Folfiri and Nausea

Postby Fluff Bottom » Tue Dec 03, 2019 5:15 pm

Hi Tater, when I was on FOLFIRI I had a time with nausea. Please check with your oncologist first but Nauzene and Emetrol helped me more than any prescription meds did. They are both over the counter. You can buy them on Amazon or Walmart. My Walmart was out of stock regularly though. Hope you are able to find relief for your wife.
10/26/15-Colonoscopy-Mass in Sigmoid
adenocarcinoma mucinous type components.
Lynch Neg
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port, FOLFOX
12 rounds FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia=mets
9/18/18 PET mets to lungs, liver, peri
10/23/18-rapid growth of mets
BRAF V600, KRAS Wild, MSS
Back on FOLFOX=reaction
FOLFIRI until it failed
Tafinlar/Mekinist=Kidney Failure
Mets to uterus, adrenal gland
Low dose Stivarga/Opdivo. Possible liver toxicity.

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: Folfiri and Nausea

Postby tater » Tue Dec 03, 2019 6:31 pm

Fluff Bottom wrote:Hi Tater, when I was on FOLFIRI I had a time with nausea. Please check with your oncologist first but Nauzene and Emetrol helped me more than any prescription meds did. They are both over the counter. You can buy them on Amazon or Walmart. My Walmart was out of stock regularly though. Hope you are able to find relief for your wife.



thanks, so you said you had a time, was a time during the cycle that was worse or were their specific cycles that were worse than others?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Fluff Bottom
Posts: 77
Joined: Fri Oct 23, 2015 8:13 am

Re: Folfiri and Nausea

Postby Fluff Bottom » Tue Dec 03, 2019 7:10 pm

My memory isn’t what it used to be but it seems like the nausea was less predictable for me than on FOLFOX. I was only on it a few months before it stopped working.

Sorry I can’t remember more details.
10/26/15-Colonoscopy-Mass in Sigmoid
adenocarcinoma mucinous type components.
Lynch Neg
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port, FOLFOX
12 rounds FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia=mets
9/18/18 PET mets to lungs, liver, peri
10/23/18-rapid growth of mets
BRAF V600, KRAS Wild, MSS
Back on FOLFOX=reaction
FOLFIRI until it failed
Tafinlar/Mekinist=Kidney Failure
Mets to uterus, adrenal gland
Low dose Stivarga/Opdivo. Possible liver toxicity.

Rikimaroo
Posts: 280
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Folfiri and Nausea

Postby Rikimaroo » Tue Dec 03, 2019 8:52 pm

Hi Tater,

I am currently doing 5 rounds of FolFIRI. I get the infusion on a Wednesday and get disconnected from the Pump on Friday. On the first day of infusion when I get home I throw up twice, 2nd day throw up twice or once, Friday throw up once and Saturday maybe throw up, but most likely not. I salivate and spit nonstop. I am fatigued and feel overall totally crappy.

I am going to tell you there is absolutely nothing you can do about it. I am a male. I tried Zofran, numerous times and it doesn't help. Your body is going to do what its going to do. Oh the other thing after the chemo has kind of run its course, I burn when I pee, like 1 week out and it hurts for two days doing it. The irritation/burn lingers, and it makes it hard to sleep. I also pee several times at night. After 5 days from Chemo things start getting better, but still not fun. Not to mention diarrhea.

Sorry I can't help you because I can't help myself. Your Oncologist is full of shit, because FolFIRI is harder then Folfox, its the next line of defense after trying FOLFOX. I did Folfox and my issues were jaw cramping first bite syndrome, cold sensitivity, nueropathy and thats it. Nausea was a non issue. Don't get me wrong FOLFOX sucked too. FOLFIRI seems worse though. I got 3 more rounds.

It's hard to eat/drink when doing chemo. You just don't want to eat/drink, but you have to force yourself too. Also on FOLFIRI my hair falls out on 2nd treatment, like clockwork. It doesn't thin, it falls out. So I have my wife shave me bald. I still look good LOL...FOLFOX my hair thinned, never fell out.

I hope she is almost done. Good Luck Buddy!! Sorry we are going through this.
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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

Kbelo
Posts: 20
Joined: Tue Aug 07, 2018 8:19 am

Re: Folfiri and Nausea

Postby Kbelo » Sat Dec 07, 2019 8:41 am

I did FOLFIRINOX (FOLFOX + Irenotecan) and was horribly dick for the first couple of rounds until I started taking EMend. It's a 3 day pill pack you start the day of chemo and continue for 2 more days. After that I no longer vomitted. All told I think I was on 2-3 anti-nauseants, so you can be on more than one. I'd take a capsule of CBD oil in the evenings too. I'd still feel nauseated at times, but No longer was vomitting, which was a win. Good luck to you, I hope you find something that works!
Stage 3B CC - diagnosed at 40
Bowel resection May 2018
28 nodes removed 1 with cancer traces
FOLFIRINOX started July 2018 for 6 months, finished Jan 2019.
1/19 - CT Scan shows NED
2/19 - CT Scan shows NED
5/19 - CT Scan shows NED
8/19 - CT scan + MRI show NED

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Folfiri and Nausea

Postby radnyc » Sat Dec 07, 2019 9:09 am

Folfiri made me feel a lot worse than folfox. Had that sick feeling right away. But it’s an effective treatment, talk to your onc, I ended up having to take strong anti nausea meds all the time. Stay strong.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

rachelfromnyc
Posts: 33
Joined: Fri Oct 04, 2019 11:32 am

Re: Folfiri and Nausea

Postby rachelfromnyc » Sat Dec 07, 2019 11:01 am

Folrifi was worse for me also. I barely had anything on Folfox. Strangely, side effects have been less severe the more infusions I get. After the last treatment, I had fatigue and slept 12 hours the night of disconnect. I do however, take anti nausea (ondansetron or prochlorperazine maleate) and anti diarrhea (immodium or loperamide hydrochloride) meds for a day or two even if I don't have the symptoms.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

Rock_Robster
Posts: 497
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Folfiri and Nausea

Postby Rock_Robster » Sun Dec 08, 2019 7:16 am

So I had nausea pretty badly on both FOLFOX and FOLFIRI.

My anti-nausea regime ended up being:

- Emend (aprepitant) tablet 1 hour before infusion
- Aloxi (palonosetron) IV at infusion, plus the usual dexamethasone
- Zofran (ondansetron) wafers every 6 hours for about 2-3 days
- Maxalon (metoclopramide) tablets every 4 hours as needed between the Zofran

Once Akynzeo (netupitant + palonosetron) tablets became available here, this replaced the Emend tablet and the IV Aloxi.

This, plus THC/CBD oil, meant I had pretty much no nausea, and a reasonable appetite.

In short, there’s lots that can be done pharmaceutically, and a number of the drugs are safe to combine. It’s worth sticking at to get the right combination.

Best of luck,
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

michelle c
Posts: 1894
Joined: Wed Dec 02, 2009 3:58 am

Re: Folfiri and Nausea

Postby michelle c » Thu Dec 12, 2019 5:55 am

Hello,

I had 12 treatments of FOLFIRI and after the first one I wondered how I would ever get through 12. The nausea was terrible and it also gave me an odd sensation in my upper abdomen. My oncologist advised me that FOLFIRI it very hard on the digestive system and neutrophils. Unfortunately, no nausea meds helped much. My worst days were the night of the infusion and the next two days. I would start to improve after my infusion was removed on day 3. Each treatment was slightly different for me as I didn’t always feel quite the same from treatment to treatment. I was too sick to do anything on those three days. I did get through the 12 treatments. It wasn’t a walk in the park but somehow I got through. Best wishes to your wife.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

MetastaticEquilibria
Posts: 74
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Folfiri and Nausea

Postby MetastaticEquilibria » Thu Dec 12, 2019 6:47 am

FOLFIRI was much worse for me than FOLFOX.
Emend helped. Also had dexamethasone for first couple of days. This combo generally worked well enough to keep me from throwing up, though the dexamethasone gave me hiccups.

Besides nausea, though, FOLFIRI generally left me feeling crappy and listless for at least the first week after infusion. Not much way around that as far as I know, unfortunately.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Claudine
Posts: 355
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Folfiri and Nausea

Postby Claudine » Thu Dec 12, 2019 11:26 am

Interesting how people have such different reactions to the same treatment. My husband was completely clobbered by Xeloda/Oxaliplatin but so far Folfiri has been a breeze (by comparison), even after 18 cycles.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Folfiri and Nausea

Postby AlexandraZ » Thu Dec 12, 2019 3:00 pm

My boyfriend had a harder time on FOLFIRI too. He had quite a bit of nausea and heartburn and just looked sick as a dog for the first few days. His skin also turned a sickly pale grayish color and it smelled like chemicals. FOLFOX is a lot less noticeable. I even had him check to make sure the 5-FU pump was working yesterday, because I thought he was feeling too well and it was suspicious!

But it seems different for everyone. We tried a lot of different things while he was on FOLFIRI. Ginger tea helped with his nausea. During infusions he wore those pressure point bracelets you can wear if you get seasick and they seemed to help too. When it got bad he used the anti-emetics the hospital gave us but sometimes simple natural stuff gave him relief. Aloe vera juice was soothing on his digestive tract. I forget all the things we did, but I think you learn more with each infusion and get familiar with what makes it better and what makes it worse.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Kbelo
Posts: 20
Joined: Tue Aug 07, 2018 8:19 am

Re: Folfiri and Nausea

Postby Kbelo » Mon Dec 16, 2019 9:59 pm

I did FOLFIRINOX (FOLFOX + Irenotecan) and was horribly sick for the first couple of rounds until I started taking EMend. It's a 3 day pill pack you start the day of chemo and continue for 2 more days. After that I no longer vomitted. All told I think I was on 2-3 anti-nauseants, so you can be on more than one. I'd take a capsule of CBD oil in the evenings too. I'd still feel nauseated at times, but No longer was vomitting, which was a win. Good luck to you, I hope you find something that works!
Stage 3B CC - diagnosed at 40
Bowel resection May 2018
28 nodes removed 1 with cancer traces
FOLFIRINOX started July 2018 for 6 months, finished Jan 2019.
1/19 - CT Scan shows NED
2/19 - CT Scan shows NED
5/19 - CT Scan shows NED
8/19 - CT scan + MRI show NED

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: Folfiri and Nausea

Postby tater » Wed Dec 18, 2019 9:22 am

thanks everyone for your responses it has helped. She gets unplugged today. The second session has gone a lot better. They pushed it into her slower and she went in better prepared. Don;t get me wrong she still feels it but it is normal chemo sick for her. SHe's thinking that the hair might be starting to thin now.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


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