Switching from FOLFOX to FOLFIRI due to neuropathy

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Switching from FOLFOX to FOLFIRI due to neuropathy

Postby Stardust » Mon Feb 22, 2016 1:24 am

So I've been on folfox from July of last year (dx was in June) until Thanksgiving - it was doing a kickass job of killing the cancer but it was giving me really bad neuropathy so the doctor took me off of it at around Thanksgiving in hopes that the neuropathy would go away - but it's only gotten worse. I have very little sense of touch in my hands anymore and the same in my feet, with numbness all the way up to my knees and sometimes higher.

The doc said that when I go back on, it will be FOLFIRI instead of FOLFOX. From what I understand the main issues are 1) Diarrhea 2) Hair loss 3) Diarrhea 4) Major white blood cell loss 5) Diarrhea. :|

Is that pretty much accurate? How bad is the diarrhea, really? I am still working full time - will I have to stop? (I work in an office) I just want to know what to expect, from people who have been there!

Dx Rectal cancer stage IV met to lungs - 6/8/2015
Radiation to shrink the tumor 6/16 - 6/30/2015
Starting chemo FOLFOX 7/10/2015
Ended FOLFOX 11/26/15 due to Oxaliplatin side effects and bad neuropathy.
Restarted chemo w/just Avastin & Xeloda 5/2016. Been on that regimen for 1 1/2 years, still have low CEAs. Let's hope it keeps working!

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby midlifemom » Mon Feb 22, 2016 6:44 am

Of course everyone reacts differently. Butt, I have found folfiri to be easier than Folfox. Less fatigue, no neuropathy and no cold sensitivity!
Of course, there is diarrhea. Butt, there's also anti-diarrhea meds. Some folks, by the sounds of it, take 10 pills a day. I typically take 3-5 pills per two weeks. The beginning was worse for me, then I got into the pattern of when I needed which med.
My biggest warning on folfiri - NEVER trust a fart and carry extra underwear.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby Felicitym23 » Mon Feb 22, 2016 7:00 am

Gosh I don't know what to say. But I am still on Folfox and I have terrible diahorea. To the point I take sometimes 6 tablets a day. I hope if they have to swap me that Folfiri will give me back my feelings in my hands and feet and stop the running to the toilet.

I feel for you.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Nik Colon

Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby Nik Colon » Mon Feb 22, 2016 8:46 am

I lost my hair, but didn't have the diarrhea, which could have been due to taking oxycodone tho as pain killers are known to cause constipation.

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby jhocno197 » Mon Feb 22, 2016 10:49 am

It's different for everyone. My husband did have diarrhea while on FOLFIRI, but it was conpletely manageable with Immodium.
He had some hair thinning, but not very noticeable.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby mike218 » Mon Feb 22, 2016 1:03 pm

I'm on round 5 with Folfiri (after 12 rounds of Folfox last year) -I found the fatigue MUCH worse with Folfiri (I was actually able to work during the infusion on Folfox after awhile), now wiped out for days, diarrhea seems to be 5-6 days post treatment and then not a big issue because I've been to sick to eat-I have noticed some different neuropathy -not the numbness and tingling which had resolved to a tolerable level ,just sense of numbness but it has gone away after treatment and was sporadic at best-like everyone keeps saying -to each his own

Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby KElizabeth » Mon Feb 22, 2016 3:28 pm

I feel much better on the furi than the fox. I have to take 5 to ten imodium a day on maybe 4 days per cycle, but it mostly affects me at night do hasn't been too bad at work.
My hair is gone and that's just fine. I don't really miss it and can easily forget that it's gone. The fatigue is minimal, and nausea has not been too bad either. Really, infusion day is the only real bad day. I usually feel crapptastic on infusion day, but wake up better the following morning. I suggest asking for atropine during infusion to help with the flushing and cramps.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Nik Colon

Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby Nik Colon » Mon Feb 22, 2016 6:54 pm

KElizabeth wrote:I suggest asking for atropine during infusion to help with the flushing and cramps.

Atropine is good for diarrhea also. I did it with first one but got constipated so had to stop.

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby CrossfitChick1980 » Mon Feb 22, 2016 9:35 pm

My husband has 3 more rounds of FOLFIRI left. His hair is thinning up top and instead of diarrhea, he is troubled by hard stools, sometimes constipation. He takes miralax to get ahead of it. Besides that, he is tolerating FOLFIRI much better than he tolerated FOLFOX. Hardly any fatigue except for a couple of days after infusion.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby mariane » Tue Feb 23, 2016 2:21 pm

Folfiri is considered better by Dr kemeny for lung things. Although she considers oxali more aggressive med for CRC altogether.
I receive atropine and have to battle constipation rather lately than run to the can.
Good luck!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby wwroam » Wed Feb 24, 2016 6:33 pm

I would seriously question abandoning Oxaliplatin.
If you already have neuropathy it is unlikely to improve much.
If the experience of my SO is anything to go by, the neuropathy may plateau. She has now had 18 rounds of Oxi.She had bad reactions after the 14th and 15th rounds but the last 3 rounds have been under a de-sensitization programs and have gone well. I have encountered no other people who have had so much Oxi as she has. Our oncologist ( he is my old oncologist as well), is very reluctant to give up on Oxi because it works. Tumours and CEA stable.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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Re: Switching from FOLFOX to FOLFIRI due to neuropathy

Postby kandj » Thu Feb 25, 2016 9:51 am

Hubby has had 4 rounds of FOLFIRI (after 7 rounds of FOLFOX) and he only really had one bad bout of the runs the first time. He does get Atropine right before they give him the irinotecan. I have noticed his hair thinning a little. Luckily he has always had a thick head of hair, so it is less noticeable to most. He had the neuropathy go away after stopping FOLFOX, but it has come back. Not cold sensitive, but numbness in his finger tips and the soles of his feet.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

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