FOLFIRI: The good, the bad, and the ugly truths

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Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

FOLFIRI: The good, the bad, and the ugly truths

Postby Mohrfamily » Sun Feb 23, 2020 8:08 am

We are prepping for FOLFIRI and our oncologist is still fighting the insurance company to add vectibix. Tell me everything, if you made a switch from FOLFOX what was different? What helped you get through the side effects you had, what side effects you had. I'm going to miss the patient education this week.
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

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

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby AlexandraZ » Sun Feb 23, 2020 8:16 am

For my boyfriend, FOLFIRI was rougher. But of course it's different from person to person. On FOLFIRI he had bad nausea and severe malaise. On FOLFOX he felt bad too, but never quite as intensely as he did on FOLFIRI. However, he got sick with the flu and various fevers while on FOLFOX, and that never happened on FOLFIRI. Best wishes to you two! FOLFIRI worked great on my boyfriend and shrank his mets by 40-60%. FOLFOX only kept them stable. Of course that may have something to do with the fact that second line chemo apparently is rarely as effective as first line chemo. But again, it seems to vary widely from person to person.
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!

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

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby Rock_Robster » Sun Feb 23, 2020 8:45 am

Mohrfamily wrote:We are prepping for FOLFIRI and our oncologist is still fighting the insurance company to add vectibix. Tell me everything, if you made a switch from FOLFOX what was different? What helped you get through the side effects you had, what side effects you had. I'm going to miss the patient education this week.

Hi Mohrfamily,

I found FOLFIRI easier than FOLFOX. I didn’t miss the nerve damage and cold sensitivity at all, and the nausea was less. My digestion found it a bit tougher and I had some mild diarrhea (easily controlled with Imodium), and I think I was more fatigued (but that could also be because it was later in my treatment). I also found the atropine they gave with it made me feel weird, but that was fairly short-lasting. Stay hydrated on this one - extra fluids is never a bad idea. My neutrophils took a beating so I started on Neulasta too (with its own fun side effects, but it definitely worked!).

Good 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!

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby JJH » Sun Feb 23, 2020 11:40 am

Last edited by JJH on Sun Feb 23, 2020 10:53 pm, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby Claudine » Sun Feb 23, 2020 11:46 am

Xelox gave my husband permanent neuropathy in his feet, exhausted him, and did not work at all.
Folfiri : after 18 cycles they were getting a bit rougher than at the beginning, but nothing by comparison, AND THEY WORKED. Main side effects were hair loss (he never got bald though, his hair and beard just thinned a lot); a little nosebleed but not bad; damage to the mucous membrane of his mouth so he could not eat spicy food ; a little nausea the day after disconnecting the 46-hour chemo pump, but not bad.
Overall it was much easier for him than Xelox. I hope it’s the same for your husband!
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

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby Mohrfamily » Sun Feb 23, 2020 1:58 pm

Thanks for the feedback so far. DH is eager(as one can be in this situation) to get started. Side effects aside he's in to beat it!
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

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

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby AlexandraZ » Sun Feb 23, 2020 4:14 pm

Mohrfamily wrote:Thanks for the feedback so far. DH is eager(as one can be in this situation) to get started. Side effects aside he's in to beat it!


That's great! You can do it!

I agree with Rob about the fluids. Jesper drank about 4 liters a day while on FOLFIRI, he was drinking all the time.

Jesper never had trouble with his white blood counts or platelets on FOLFIRI, but that could also be because it was the first chemo he got.
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!

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby JJH » Sun Feb 23, 2020 11:02 pm

Mohrfamily wrote:... He just switched hospitals for treatment and it's much closer now ...

Is this the hospital where DH is being treated now, or is it a different one?

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/cancer

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/colon-cancer-surgery
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Mohrfamily
Posts: 249
Joined: Tue May 22, 2018 4:04 pm

Re: FOLFIRI: The good, the bad, and the ugly truths

Postby Mohrfamily » Mon Feb 24, 2020 5:24 am

JJH wrote:
Mohrfamily wrote:... He just switched hospitals for treatment and it's much closer now ...

Is this the hospital where DH is being treated now, or is it a different one?

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/cancer

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/colon-cancer-surgery

That is who we just left. The infusion staff are terrible no regard for my hubby. A rise in marker numbers being viewed by someone but no one reached out to tell us sooner to do SOMETHING more.
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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