A reaction to what?

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Fluff Bottom
Posts: 61
Joined: Fri Oct 23, 2015 8:13 am

A reaction to what?

Postby Fluff Bottom » Wed Nov 28, 2018 4:09 pm

On 11/14 I had my second FOLFOX infusion with Avastin. I had a reaction that started prior to the Avastin portion that caused my throat to swell and my speech was impaired. I talked like I just had dental work. Went to ER and got Benadryl and steroids.

Oncologist thought the Oxaliplatin was the culprit. Today I had my first infusion of FOLFIRI and had the same reaction near the end. They called my oncologist and gave me Benadryl and steroids which helped.

They did not give me the Avastin and I went home without a pump. I see the oncologist next week.

Anyone have something similar happen? Maybe it’s the 5FU? My body is freakin screwing me this go round :oops:
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

Lee
Posts: 5740
Joined: Sun Apr 16, 2006 4:09 pm

Re: A reaction to what?

Postby Lee » Wed Nov 28, 2018 5:04 pm

It would be great if they could find out for sure which cocktail is causing your allergic reaction.

This was many years ago, a women here did develop an allergic reason to FOLFOX. They were able to give it to her in a hospital setting, at a much slower rate. Maybe they could do this with you too.

So sorry this is happening, good luck, going forward,

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!

dliu
Posts: 41
Joined: Sun Jun 03, 2018 7:16 am

Re: A reaction to what?

Postby dliu » Wed Nov 28, 2018 6:31 pm

I'm not 100% sure this is the same as your reaction, but my mum had a severe reaction after her 4th or 5th FOLFOX infusion. Aside from the canker sores in her mouth, sometimes she would try and drink water and feel like she was choking. I thought it might be the oxaliplatin, but her oncologist did suspect it might have been the 5FU causing sores further down her pharynx. He reduced the 5FU dose, and from then on she never experienced it again.

Other people on this board have reported allergic reactions to oxaliplatin, but what I know for sure is you'll need your oncologist to investigate this further as it's not pleasant at all as a side effect!

Wishing you best of luck in finding out what it is, and wishing you a smoother rest of the treatment.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Fluff Bottom
Posts: 61
Joined: Fri Oct 23, 2015 8:13 am

Re: A reaction to what?

Postby Fluff Bottom » Wed Nov 28, 2018 8:41 pm

Thanks Lee and dliu! I’m trying to do some research before my next appointment.

I came across something called DPD Deficiency, it’s kind of rare, but basically you don’t have the enzymes to process 5FU properly. There are mild and severe cases but can be fatal. I will let you guys know what I find out.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

e_enyedy
Posts: 16
Joined: Sat Nov 25, 2017 5:28 pm

Re: A reaction to what?

Postby e_enyedy » Sat Dec 01, 2018 2:20 pm

My regimen started with prep (anti-emetics)- then Oxaliplatin and Avastin - it went so-so/
Then we switched the sequenceadministering Avastin, leaving Oxaiplatin last - and it went much better.
Maybe this might help

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

Dionca
Posts: 19
Joined: Sat Dec 02, 2017 2:04 am

Re: A reaction to what?

Postby Dionca » Sat Dec 01, 2018 6:45 pm

A few hours after each infusion, I would get a headache and my throat would be sore to the point that it was difficult taking pills, as it felt like my throat was narrowing, and they would get stuck. This did improve a bit after the first few infusions.

I also experienced coughing fits, so my onc recommended a puffer and had me take a chest x-ray (which was normal). However, I don't know if the 5FU or the Oxi caused these symptoms.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (oxi discontinued for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4
neuropathy

Eleda
Posts: 197
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: A reaction to what?

Postby Eleda » Sat Dec 01, 2018 7:40 pm

Fluff bottom happened to me on my first dose,,,,
Couldn't even swallow spit and assumed it was a side effect
But apparently was an alergic reaction!!!!!!
My oncologist stopped my oxi imidiatly,and continued with 2 rounds of 5FU ONLY
then I begged him to reintroduce it so
along with my reacerch to desensitiziation,, to which he eventually ( after consulting peers) agreed,

So extra steroid 2 days prior to Infusion ( 8mg x4days dexa)
Reduced oxi by 20%
Extra anti sick med during infusion
Longer infusion time
Extra antihistamines during infusion
Extra steroid during infusion

Eventually did 6 rounds of FOLFOX
8OF 5FU on its own
Only finished 2 weeks ago
Successfully
Hope this helps
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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