5FU reactions?

Please feel free to read, share your thoughts, your stories and connect with others!
No Fear
Posts: 6
Joined: Tue Apr 21, 2015 11:05 pm

5FU reactions?

Postby No Fear » Sun Sep 20, 2015 9:28 am

Hello,

Just curious if anyone has had a bad reaction to 5FU like I have? When I was in the pump for the first two rounds of FOLFOX chemo, I experienced severe chest pressure and was sent to the ER because they thought I was going to have a heart attack. I have since switched to Xeloda and then take the Oxiliplaitin by pump, but was put on a long acting nitroglycerin daily pill to help protect my heart and prevent further 'heart attacks'.

I am about to begin FOLFOX round #9 tomorrow, and I am very concerned about any long term damage that this 5FU drug may be doing to my otherwise perfectly healthy heart. My oncologist is very concerned about this as well and has considering ending my chemo at my next appointment because of it. I have had an echo-cardio gram done and no news there (which is good news!), but I am still very concerned about any long term side effects.

Has anyone been through anything similar to this? I have been unable to find much help when I search online.

Thanks!
32 years old, mother of two girls (8,2)
colon cancer stage 3b, 2/55 lymph nodes positive
Diagnosed 4/17/15 with 6cm carcinoma in sigmoid and 5 pre-cancerous polyps
Complete colectomy on 4/24/15, drug induced ileus 3 days after....uggggh
Tested Lynch negative, first person in family to have cancer
Started FOLFOX 6/2/15, 12 rounds

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: 5FU reactions?

Postby Sams wife » Sun Sep 20, 2015 12:49 pm

There is an enzyme deficiency some people have with 5 FU. I can't remember the name either but someone will. And maybe give you a good place to start searching on here. Sorry. I was worried about that with hubby too. I wanted to say they can't digest 5FU but that's not right.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Deborah614
Posts: 23
Joined: Tue Jan 27, 2015 10:24 am
Facebook Username: Deborah Melchi

Re: 5FU reactions?

Postby Deborah614 » Mon Sep 21, 2015 10:14 am

I get esophageal spasms that feel like a heart attack when I am on the 5fu or Xeloda. The spasms are excruciating and for all I've been through since diagnosis, it's the one thing that makes me want to stop treatment. I've had 2 oncologists insist the 5fu or Xeloda do not have this side effect, but I have been to the ER twice thinking I was having a heart attack. I am not a wimp when it comes to pain, but the spasms make me cry. The only thing that helps ease the pain is Mary's Magic Mouthwash that's specially formulated at a compound pharmacy, so I'm suspecting spasms are actually acid reflux from hell. The ER doctors said they give nitroglycerin to stop esophageal spasms, as they do for heart attacks. Maybe you and I are having same side effects? I'm having a terrible time convincing my oncologist that I can't handle xeloda, but had the same spasms during oral xeloda/radiation as I do when getting 5fu.
I really hope you aren't having heart issues. I'm hoping my esophagus isn't being trashed. These are parts we can't afford to lose.
~Deb~
dx 12/17/14
stage 2 rectal cancer T3N0M0
standard treatment 28 days radiation w/xeloda, surgery, 8 rounds Folfox
22 shots neupogen 32 days in hospital for infections
60 years old
mother of 6, grandmother of 10, wife of 1 for 35 years
Jeremiah 29:11
05/28/15 APR, Barbie butt, permanent colostomy
May 2016 Cat scans NED!
May 2016 mammogram
June 2016 invasive ductal carcinoma breast cancer left breast stage1
August3 '16 mastectomy with reconstruction, genetic screening scheduled

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: 5FU reactions?

Postby justin case » Mon Sep 21, 2015 4:13 pm

I'd be more worried about the OXY.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: 5FU reactions?

Postby Annemiek » Tue Sep 22, 2015 2:25 am

i had heart palputations, irregular heartbeats, and they did check a few times, but my heart was always regular when they did. Now I've finished it's gone.
Bar,what do you mean by barbi Butt? ( ideally formed :lol: )

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: 5FU reactions?

Postby NateA » Tue Sep 22, 2015 11:11 am

I am still trying to figure out what chemical causes what...just finished 3rd tx Saturday when 5fu pump came off, and was like!e 80% next day doing stuff and eating (with jaw pain at start of meals). Weird...makes me wonder if this tx really works except my cea has plumetted and my liver numbers are practically normalized..
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

Nik Colon

Re: 5FU reactions?

Postby Nik Colon » Tue Sep 22, 2015 1:31 pm

NateA wrote:I am still trying to figure out what chemical causes what...just finished 3rd tx Saturday when 5fu pump came off, and was like!e 80% next day doing stuff and eating (with jaw pain at start of meals). Weird...makes me wonder if this tx really works except my cea has plumetted and my liver numbers are practically normalized..

First bite pain is normal on oxi, my tumors shrunk in half after 4 tx, only first 3 with oxi, so it worked good for me and also seen the cea drop each time tested

User avatar
ConnieSPK
Posts: 144
Joined: Tue May 07, 2013 6:28 pm
Facebook Username: Connie Perkins Kreienheder
Location: Dardenne Prairie, MO

Re: 5FU reactions?

Postby ConnieSPK » Tue Sep 22, 2015 1:50 pm

This article is a little old, but as a person that experienced different, "rare", 5FU side effects, you might want to read it..
http://www.ro-journal.com/content/pdf/1 ... -7-212.pdf

Regards,

Connie K.
Dx08@54,StgIV Colon,Liver,Lung, ColonSurg,FOLFOX+Beva
09 LiverSurg
10 FOLFIRI+Beva
11 FOLFOX+Beva,ox reaction
12 Bi-lat LungVATS
13 New mets L lung FOLFIRI+Zaltrap,5FU reaction
14 Return mets L lung SBRT,successful
15 Lung Spots, Irinotecan

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: 5FU reactions?

Postby justin case » Tue Sep 22, 2015 6:22 pm

NateA wrote:I am still trying to figure out what chemical causes what...just finished 3rd tx Saturday when 5fu pump came off, and was like!e 80% next day doing stuff and eating (with jaw pain at start of meals). Weird...makes me wonder if this tx really works except my cea has plumetted and my liver numbers are practically normalized..

Oxiloplatin will usually cause pain when you take your first bite or two. It is also the culprit of cold sensitivity, which makes a lot of people unable to drink cold fluids. You are on the best to date cancer fighting program available. I also had the first bite pain, with drinking Gatorade, so I enjoyed Chocolate Ensure more, and it was a benefit in nutrients.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: 5FU reactions?

Postby Mastan » Tue Sep 22, 2015 7:37 pm

I have a lot of chest tightness and restricted breathing on FOLFIRI. Not sure if is the irrinotecan or the 5FU or both. Whatever the case it is an evil side effect.

Mark
Dx 6/2010 rectal CA

JaninOz
Posts: 39
Joined: Sat Apr 12, 2014 5:48 am
Location: Brisbane, Australia

Re: 5FU reactions?

Postby JaninOz » Wed Sep 23, 2015 7:30 am

When having neo adjuvant chemoradiation, I was having 5FU 24/7 via a pump bottle. After a week of shoulder pains, I developed pain in the middle of my chest with associated nausea and clamminess. ECG was going off the chart and then it all suddenly stopped. ER docs clamped off the bottle and I had no more pain. I was told I was having vasospasms. It is a rare, but known, side effect of 5FU. Subsequent cardio testing showed no damage and no issues with my heart. FYI I had a PICC line.

My oncologist changed my routine for the remainder of the chemoradiation to two sessions of three days of IV 5FU over 10 minutes. I also had to take Perapamil to stop spasms. The vasospasms are something he has dealt with previously so he knew of other ways to deliver the chemo, that could be tried.

Adjuvant mop up chemo was done weekly via IV. 5FU only over 10 minutes with nausea meds and leucovorin prior. No Oxy as he believed it would cause more problems than any benefit I received. I had most of the side effects on the common list and a few more just from 5FU, so I was relieved at the no Oxy part!
Dx Feb 14 Rectal
T2N1M0 CT/MRI Stage 3A.
Apr 14 chemoradiation 24/7 infusion 5FU. Vasospasms. Pump removed.
leucovorin/5FU IV success.
Jul 14 LAR. No tumour cells found.
Oct 14 5FU/leucovorin bolus weekly x 13
Apr 15 Reversal
Apr 16 NED. CEA 0.04. Scan/colonoscopy clear

User avatar
Jacques
Posts: 581
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

DPD Deficiency - Dihydropyrimidine Dehydrogenase Deficiency

Postby Jacques » Wed Sep 23, 2015 9:13 am

Sams wife wrote:There is an enzyme deficiency some people have with 5 FU. I can't remember the name either but someone will. And maybe give you a good place to start searching on here...

DPD Deficiency - Dihydropyrimidine Dehydrogenase Deficiency
http://www.dpd-deficiency.com/
http://www.dpd-deficiency.com/downloads/files/dpdquestions1.pdf

No Fear
Posts: 6
Joined: Tue Apr 21, 2015 11:05 pm

Re: 5FU reactions?

Postby No Fear » Wed Sep 23, 2015 1:34 pm

Thank you all so much for your replies. My onc took me off chemo for awhile as my side effects were becoming more severe. The vaso-spasms sound exactly like what I was going through with my chest pain. Glad to hear there wasn't any long term damage from it!
32 years old, mother of two girls (8,2)
colon cancer stage 3b, 2/55 lymph nodes positive
Diagnosed 4/17/15 with 6cm carcinoma in sigmoid and 5 pre-cancerous polyps
Complete colectomy on 4/24/15, drug induced ileus 3 days after....uggggh
Tested Lynch negative, first person in family to have cancer
Started FOLFOX 6/2/15, 12 rounds

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: 5FU reactions?

Postby Sams wife » Wed Sep 23, 2015 5:02 pm

Good. I thought you had already had problems & wondering about damage. Hope my post didn't scare you. But vaso spasms didn't sound very fun either. Sounds pretty scarry actually.

Thanks Jacque. You wouldn't think I'd forget 3 little letters. But I managed too.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: nova17 and 9 guests