Folfiri

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Markdale
Posts: 118
Joined: Wed Dec 02, 2020 4:45 pm

Folfiri

Postby Markdale » Wed Oct 02, 2024 4:39 am

I’m on my 3 Rd round of folfiri and I’m not handling it well. I initially did folfoxiri and handled it so much my better. I’m taking the anti nausea meds but it helps very little I vomit at least 5 times on day 1 and 2. Does anyone have any advice or similiar experience? I was expecting this to be much easier than folfoxiri.

Mark
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Folfiri

Postby utahgal7 » Wed Oct 02, 2024 5:16 am

Mark,

Have you reached out to your care team yet to let them know your meds aren't working? I would keep asking for anti-nausea meds. I was super sick on FOLFIRI too. What worked for me was Ativan prior to infusion and alternating Zofran and Compazine after infusion. Also, taking Olanzapine once daily helped. Also, other tricks I learned was sniffing isopropyl alcohol wipes or bottle helped with nausea. Ginger candy and sucking on raw lemon wedges were very helpful. I have a CC friend who gets Emend with her infusion and that helped her with FOLFIRI nausea and vomiting. You have to get Emend before nausea sets in though because it won't usually work after.

Good luck to you. I hope you feel better really soon.

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

Markdale
Posts: 118
Joined: Wed Dec 02, 2020 4:45 pm

Re: Folfiri

Postby Markdale » Thu Oct 03, 2024 1:37 am

Thanks Paige.
Hope you’re doing well
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

roadrunner
Posts: 516
Joined: Sun Jan 12, 2020 8:46 pm

Re: Folfiri

Postby roadrunner » Thu Oct 03, 2024 12:58 pm

Mark: I hope you get a handle on this soon. I also second Paige’s comments about being aggressive and proactive with the anti-nausea meds. I’ve used them sporadically throughout my chemos, and I think I may have used them proactively with FOLFIRI, which went pretty well for me. I assume you’re already taking something, but there are different medications with different mechanisms of action and different strengths. One thing to watch is any effect on motility, as diarrhea is usually the most limiting factor with FOLFIRI, and oncologists try hard to protect against that. Anyway, I just wish you luck with it—that much nausea and vomiting must be miserable.

[Edited to add: I went back and read your original post, and saw the worst nausea/vomiting was right after/during infusion. I wonder what anti-nausea stuff they’re using in the infusion? The stuff I got was really good, my nausea didn’t kick in until it wore off after a day or two (kind of the opposite of your situation, it seems, though my nausea was never too bad). This is definitely a medication/dose questions for your oncs.]
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

roarR40s
Posts: 6
Joined: Wed Jul 10, 2024 2:43 am

Re: Folfiri

Postby roarR40s » Fri Oct 04, 2024 3:33 am

Hi Mark,
Greetings from Australia, and really hope your treatment is going well as it can be.
My late husband was also on FOLFIRI, prior to that FOLFIRI with BEV, and he was really prone to bad nausea on those regimes but not to point of vomiting 4/5 times a day.
I second all the advice given before, especially the medication/ and pre-med given on the day of the chemo.
My husband took a pre-med tablet which was a combo of Netupitant 300mg +Palonosetron 500mg. He was also given a double-dose of steroids / Dexamethasone which can help with day 1 and 2. It wasn't until they added Olanzapine were he really got on top his nausea. And when he started chemo and got really bad nausea I remember they were also adding infusions of Metoclopramide on the day initially. I guess there are many anti-nausea cocktails out there, and the oncologist really should be onto it! I have heard that oncologists are master-prescribers of anti-nausea meds but shit prescribers of hope. This was very true in our case. But yeah, the oncologist really should onto it as there is a cocktail out there that works for you.
Good luck.

CL

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Folfiri

Postby utahgal7 » Fri Oct 04, 2024 7:40 am

Mark,

One other thing that I thought of that you might want to ask your care team about is scopolamine patches. They work for motion sickness and they might work for chemo nausea too. If your doctor is ok with it, you would want to apply the patch at least 24 hours prior to your next infusion. The patch will likely not work after nausea starts. I am sure you already know this but "getting ahead" of the nausea and vomiting is key.

Let us know if anything worked for you.

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

Markdale
Posts: 118
Joined: Wed Dec 02, 2020 4:45 pm

Re: Folfiri

Postby Markdale » Wed Oct 16, 2024 4:19 pm

Thanks for the responses. I doubled my dexa dose this cycle and I have tolerated the folfiri much better.
Thank you
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Folfiri

Postby utahgal7 » Wed Nov 13, 2024 8:15 am

Mark,

I hope your FOLFIRI treatments are going well and I hope you have been able to have lasting relief from nausea and vomiting.

Take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

Markdale
Posts: 118
Joined: Wed Dec 02, 2020 4:45 pm

Re: Folfiri

Postby Markdale » Wed Nov 13, 2024 7:12 pm

Thanks Paige, this cycle has been bearable, I got cyclizine which has helped a lot and I doubled my other anti nausea meds. Hope everything is going aswell as possible for you

Mark
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.


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