Folfox Allergy

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Mercy110
Posts: 108
Joined: Wed Aug 16, 2017 12:13 am

Folfox Allergy

Postby Mercy110 » Tue Mar 13, 2018 3:14 am

Hi all.
My mum has just started her 10 rounds of Folfox today but having allergic response that her throat enlarged. Onco said this is a very serious side effect that Folfox is no longer an option for her.

The onco gives us a chemo break for 2 months as my mum's CEA is doing good (plz refer to my signature). We are worried as her CEA rose before when she received a 1 month break.

There are two questions for us:
1. Is it normal for my mum to take such a long break now as she had just finished 10 rounds of Folfox instead of standard 12 rounds ?

2. Folfiri will be use after 2 months break. I have heard that folfiri has side effects such as losing hairs and diarrhea. It is very worrisome as my mum is now using stoma. Any suggestions on this drug?

Thanks for any comments in advance.
Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy
2018-08: Folfiri, CT lung met, 2 lymph nodes
2018-10: Folfiri + Avastin

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

Re: Folfox Allergy

Postby AppleTree » Tue Mar 13, 2018 6:38 pm

The only thing I can offer is my own experience. Within the first couple of treatments on Folfox, I lost almost all my hair! My oncologist was very surprised. I guess there are no guarantees. It has been 3.5 weeks since my last Folfox, but my labs showed platlets at 85 yesterday so we are waiting to try again on Friday. It will be #9 of 12 for me.

I do not have a stoma and diarrhea was a real issue with me. I take 4 Lomotol pills a day and have a Sandostatin shot every month and that has worked for me. No salad. No fried food. Smaller portions. I still wear a,Depends when I leave the house...just in case.

Best of luck with the change.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Folfox Allergy

Postby Shana » Tue Mar 13, 2018 10:47 pm

Mercy110 wrote:Hi all.
My mum has just started her 10 rounds of Folfox today but having allergic response that her throat enlarged. Onco said this is a very serious side effect that Folfox is no longer an option for her.

The onco gives us a chemo break for 2 months as my mum's CEA is doing good (plz refer to my signature). We are worried as her CEA rose before when she received a 1 month break.

There are two questions for us:
1. Is it normal for my mum to take such a long break now as she had just finished 10 rounds of Folfox instead of standard 12 rounds ?

2. Folfiri will be use after 2 months break. I have heard that folfiri has side effects such as losing hairs and diarrhea. It is very worrisome as my mum is now using stoma. Any suggestions on this drug?

Thanks for any comments in advance.


Hi Mercy,

I can't comment on Folfiri because I only take Irinotecan which is the Iri part. I also take Cetuximab which is an antibody therapy for KRAS Wild. I experienced severe diarrhea from Irinotecan at first because of the high dosage, the doctor adjusted my dosage until it was tolerable and manageable with lomotil, atropine and tincture of opium when it got really bad. I have been able to manage with diet adjustments and have also increased my dosage by 50% over the past month. I have very few side effects and I also have a stoma which actually made it easier to deal with the diarrhea at first. I had to get hydration for one week before they adjusted my dosage. I also had a bad reaction to Folfox after first and second sessions so I was never given the option of Folfiri.

Good luck to your mum! She's so lucky to have you looking out for her

Best Wishes,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Folfox Allergy

Postby orlar » Wed Mar 14, 2018 9:20 pm

Hi Mercy,

Can't really say what's normal, but I did have 2 months from my last FOLFOX infusion 12/13/17 and starting FOLFIRI + Avastin on 02/14/18 (Valentines Day and Anniversary and made it through dinner fine). I had a post chemo CT scan with results on 12/28/17 which got me to a liver biopsy and 2nd opinion scheduled in Jan. which took some time.

I do not have a stoma so I can't offer any thoughts on that, but I had my 3rd FOLFIRI + Avastin today which they have been giving me an atropine injection each cycle to help. So far I've only had one case of diarrhea on Day 1 of the first 2 cycles (none today) and took 1 Imodium each time with no more issues. As far as hair loss, I lost some hair during FOLFOX, but seem to be losing more on FOLFIRI (went ahead and shaved the beard do to loose hairs). Top of head was thin before chemo, but sides and back still hanging in though thinning.

Unfortunately, the side affects just like our cancers, vary with each individual. They do share several commonalities and some of the longer term members can probably give you a better take. Good luck to your mum and you!

Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56


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