Strange new side effects with FOLFIRINOX

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

Strange new side effects with FOLFIRINOX

Postby Kbelo » Mon Nov 19, 2018 3:07 pm

I'm wondering if anyone else has experienced these side effects - I'm 8 rounds (of 12) through FOLFIRINOX and these are new to me.

1. I'm getting strange "pulses" through my ankles and feet, almost like little electrical zaps or currents. It started once a day, about a week ago, now I get dozens per day. Not painful, but strange feeling. Lasts a second or two at a time

2. Any time I blow my nose, there's a reasonable amount of blood on the Kleenex. Not enough to run out of my nose, but any time of day, there's blood in my nostrils. It could be dry air, I suppose, but I've never had this happen before.

If anyone is familiar with these side effects, or knows anything about them (this group was how I discovered what "first bite" was, when trying to figure out that odd sensation) I'd appreciate the insight. Seeing my oncologist tomorrow, round #9 Wednesday

Thanks!
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
2/20 - CT Scan shows NED
8/20 - CT Scan shows NED

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Strange new side effects with FOLFIRINOX

Postby Trying » Mon Nov 19, 2018 7:04 pm

I did get alot of nose bleeds. Some bad. I also had pulsing in my hands
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

margiej
Posts: 103
Joined: Sat Apr 14, 2018 8:46 am

Re: Strange new side effects with FOLFIRINOX

Postby margiej » Tue Nov 20, 2018 8:27 am

I developed L'Hermitte's sign a few weeks after the end of chemo. When I would bend my head down, electric shocks went down from my neck to my feet--painless, but pretty uncomfortable. It was during the worst of my neuropathy. As my neuropathy improved, the electric shocks disappeared. I still have some neuropathy from the oxy, but it is tolerable. I think I would let your doctor know about the electric shocks, he/she might want to adjust your treatment.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
Phuong
Posts: 1496
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: Strange new side effects with FOLFIRINOX

Postby Phuong » Tue Nov 20, 2018 5:12 pm

For the nosebleeds, my NP recommended using a q-tip at night before bed to swipe a little Vaseline in your nose. Hope that helps.
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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

Re: Strange new side effects with FOLFIRINOX

Postby Kbelo » Tue Nov 20, 2018 9:11 pm

My oncologist decided to scale back the Oxaliplatin to see if we could get rid of the strange zaps I'm getting in my feet. Thanks for the Vaseline tip - think I'll give it a try for my nose to see if it helps
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
2/20 - CT Scan shows NED
8/20 - CT Scan shows NED

margiej
Posts: 103
Joined: Sat Apr 14, 2018 8:46 am

Re: Strange new side effects with FOLFIRINOX

Postby margiej » Tue Nov 20, 2018 10:28 pm

I think that's wise to cut the oxy back. I hope your electric shocks subside soon.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Strange new side effects with FOLFIRINOX

Postby mobrouser » Tue Nov 20, 2018 11:26 pm

Kbelo I had the pulsing sensation in my feet after about round 7 or 8. To me it feels like when you're in an elevator that has just stopped and is making adjustments to level with the floor before the door opens. It took a while for me to realize it was related to sudden changes in my blood pressure. It's been 3 months since I finished chemo, yay!!!, and probably 1 month since the pulsing stopped. I told my onc about it when it first happened but she wasn't concerned. At that point my oxali was down to 75%. I now feel it in my hands but not nearly as often.

I also had nose bleeds from round 2 onwards which resulted in the oxali being reduced but I was also on daily blood thinner shots because of a clot after my PICC was put in place. My bleeds, which were quite heavy, usually happened when I went from being outside in the cold winter weather to regular indoor temps but sometimes just a cough or sneeze would start them. I ended up doing Neupogen shots to rebuild platelets. Vaseline in my nose didn't make a difference for me.

The balancing act of giving best treatment vs what the body can take is tough. My onc was I believe quite agressive in her choice in keeping me at 75% for rounds 5 to 12 but I was in full agreement with her.

All the best for tomorrow's infusion. You're almost there!!!

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?


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