Folfirinox - Bad tolerance

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brokenwings
Posts: 54
Joined: Mon Jan 07, 2019 1:50 am

Folfirinox - Bad tolerance

Postby brokenwings » Mon Feb 11, 2019 5:30 am

Hi everybody,
I hope you're doing ok.

Unfortunately, chemo is extremely tough on me. :cry: Is it because I'm just physically weak or is this protocol specially aggressive?

I feel tired all of the time for like a week after the infusion (so far, I've had 2). Diarrhea is difficult to manage (my oncologist lowered the dose of Irinotecan but still...) and I'm getting Neulasta (I think that's the American name -I live in France) shots everyday for 5 days after I'm disconnected... Nausea and diarrhea are side effects for that too... My oncologist tells me we can't stop the shots because this protocol is particularly nasty on white cells...
And next week, ta-dah!, he's adding Avastin to my cocktail... Will I survive chemo? :(

Hugs,

Paola
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...

stu
Posts: 1048
Joined: Sat Aug 17, 2013 5:46 pm

Re: Folfirinox - Bad tolerance

Postby stu » Mon Feb 11, 2019 8:00 am

Hi ,

It is a tough treatment for some people . I think it would be reasonable to say we dragged my mum through chemo . She would be in the subgroup of patients that had a bad reaction . Frequently took three of us to get her from the car to bed following and infusion. All sort of thoughts were flying through my head .
Six weeks after finishing chemo she went sea kayaking off the North Coast of Scotland for the first time at 69 . It was fully the chemo that was making her so ill . Thankfully it was also doing a powerful job off knocking down the cancer . Now she tries to use surgery and no chemo where possible but she needed it at the start .

Rest and hydrate we’re about as much as she could manage .

She had a couple of extra rest weeks in between just to help her last the course .
Thinking of you ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Lee
Posts: 5873
Joined: Sun Apr 16, 2006 4:09 pm

Re: Folfirinox - Bad tolerance

Postby Lee » Mon Feb 11, 2019 4:42 pm

brokenwings wrote:Hi everybody,

... Nausea and diarrhea are side effects for that too... :(

Paola


Sorry for what you are going through. Couple of things that helped me. Ginger for nausea, either Ginger Snap cookies, Ginger Ale or Ginger Root. Also I always got an egg cheese breakfast sandwich on way to chemo. I found if I had food in my stomach I was less nausea, thus I tended to snack a lot vs eating 3 larger meals a day. And junk food is better the no food

I'm not real familiar with this and you would need to check it out via the search engine, butt many people on here found success (ie keeping side effects at bay) by fasting prior to chemo. Somehow by fasting, the chemo went straight to the cancer cells and by passed the good cells. Again you can research prior people on this site under the word fasting

Some people found success with nausea by doing some exercise, light walking maybe something to consider.

Can you switch for FOLFOX?

Make sure you are drinking a lot of water prior to chemo.

Good luck, I hope it gets better for you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Kbelo
Posts: 11
Joined: Tue Aug 07, 2018 8:19 am

Re: Folfirinox - Bad tolerance

Postby Kbelo » Mon Feb 18, 2019 4:06 pm

I just finished 12 rounds of FOLFIRINOX last month - it's definitely a tough regime. For nausea and diarrhea I found the first 4 rounds to be the worst, with it evening out by round 8. For nausea I was taking Emend, Ondansetron, and Prochlorazine which helped a lot. Neulasta sucks, I had such bad muscle, bone and joint pain it hurt to be touched for a couple days - but I didn't get sick with a cold, flu or fever at all, even with to school aged kids bringing home germs. I hope it gets better for you! My oncologist prescribed home hydration for me, for 5 days after the 5FU disconnect, so I'd get a litre of saline each day to hydrate and flush out the chemo since eating and drinking was a challenge. It really helped - not sure if this is an option you can explore?

I've been finished the 6 months of FOLFIRINOX for 6 weeks and I am feeling good. Aside from some occasional fatigue and pesky neuropathy in my fingers and feet I am doing well. Take care!
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

brokenwings
Posts: 54
Joined: Mon Jan 07, 2019 1:50 am

Re: Folfirinox - Bad tolerance

Postby brokenwings » Tue Feb 19, 2019 9:57 am

Thanks everybody for your replies and your encouragement.

@Kbelo: 12 rounds of Folfirinox, WOW! I'm still wondering how on earth I'll manage to survive to 6 rounds...

Hugs,

Paola
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...

mariane
Posts: 650
Joined: Sun Sep 13, 2015 6:16 pm

Re: Folfirinox - Bad tolerance

Postby mariane » Tue Feb 19, 2019 2:47 pm

I completed 4 doses of FOLFIRINOX and got switched to FOLFOX for 3 doses, than 7 doses of FOLFIRI, 10 doses of 5FU, and 12 doses of hepatic pump chemo. I have been off chemo for 2.5 years, NED.
I took Neupogen, 3-5 shots as you did with every FOLFIRINOX. My oncologist was very particular about getting chemo regularly , every 14 days, No breaks, no delays to achieve the best possible response. I got complete response so it worked.
FOLFIRINOX was tough. I was progressively more tired every cycle. I lost my hair almost completely. EMEND helped me to control nausea. I was even able to fly on FOLFIRINOX. I walked 6 miles every day, even with chemo attached. I walked and cried sometimes but kept walking to prolong my life. Walking helped me to survive, to stay strong during a long year of chemo with short breaks for my 4 surgeries. I looked at the woods, meadows, changing seasons, and kept walking to NED.
My oncologist - Dr Kemeny was focused on getting the best possible response so I was on hepatic pump chemo just a week after my first surgery. Hardly any breaks during this long year.
However, I think this hard regimen really works. There were many researches confirming this combination FOLFIRINOX + Avastin had best statistics of resection and NED, even cure at the end of the road. You have a good oncologist who is fighting this battle with you and knows what he/she is doing. I know it is hard.
Stay strong and 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!

brokenwings
Posts: 54
Joined: Mon Jan 07, 2019 1:50 am

Re: Folfirinox - Bad tolerance

Postby brokenwings » Thu Feb 21, 2019 2:28 pm

Dear Mariane,

Thank you so much for your message. You really give me hope!!

I'm glad the treatment worked so well on you and you're NED now.

I'll try to "survive" Folfirinox!!

Hugs,

Paola
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...

mariane
Posts: 650
Joined: Sun Sep 13, 2015 6:16 pm

Re: Folfirinox - Bad tolerance

Postby mariane » Fri Feb 22, 2019 10:33 pm

Thank you, Paola! Hugs!
One more thing, hopefully useful. I received Atropin with Irinotecan and it really helped with diarrhea. Honestly with Atropin I had more like constipation. I am in general very sensitive to meds.
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!

brokenwings
Posts: 54
Joined: Mon Jan 07, 2019 1:50 am

Re: Folfirinox - Bad tolerance

Postby brokenwings » Sat Feb 23, 2019 5:43 am

Yes! The shot of Atropin did help a little.
Anyway, now I'm (sadly) on opiods because of intense pain caused by a kidney to bladder stent, so the diarrhea won't be showing up this time I think (as opiods tend to slow transit).

Have a nice weekend. Here in Paris we have another sunny saturday (two in a row, just a miracle!).

Paola
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...

Milk Tea
Posts: 24
Joined: Wed Feb 13, 2019 1:14 pm

Re: Folfirinox - Bad tolerance

Postby Milk Tea » Mon Feb 25, 2019 2:37 pm

Paola,
Please power through it. It was definitely hard but with a lot of encouragement, my husband finished it. He did 6 cycles before and 6 cycles after liver surgery. With one sever diarrhea episode with fever after cycle 4 which made him hospitalized for 3 days. He did it total 12 cycles and have been NED for two years. You can do it too. I am rooting for you.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

brokenwings
Posts: 54
Joined: Mon Jan 07, 2019 1:50 am

Re: Folfirinox - Bad tolerance

Postby brokenwings » Tue Feb 26, 2019 5:42 am

Hello Milk Tea,

How sweet of you to encourage me like that! Emotional support's so important for me in order to get through this rough time...

I'm glad this treatment worked so well on your husband.

Some good news: my CEA wen't down from 8.5 (normal range up to 5) to 6.5 after two chemo cycles. I might be on the right track :)

Hugs,

Paola
DX January 2019
Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay, just after colonoscopy. Emergency surgery. Temporary colostomy. Primary tumour still there (French protocol...)
Folfirinox: 4 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: let's hope my surgeon doesn't find any nasty surprises when he opens me up...


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