Coping with FOLFOX - first doses

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Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Coping with FOLFOX - first doses

Postby Rock_Robster » Fri Nov 23, 2018 1:09 am

Hi all, I have a quick question about my early FOLFOX experiences. I had my first Oxaliplatin dose on Monday then a 48-hour 5FU infusion. I received steroids on the Monday and then Maxolon to take home for the nausea. I was ok on the Monday/Tuesday (mainly due to the steroids, I think), then by Wednesday I was really unwell all the time - nauseous, *extremely* fatigued, anxious, hot/cold sweats/shakes, etc. I only vomited once (then got IV zofran) but was absolutely useless the rest of the time. I feel so soft when I hear about people who went to work on this stuff!!

It’s Friday now and I’m beginning to feel more human - I can eat small meals, go for walks, mostly awake all day, etc. But wow that was a rough couple of days.

Anyway the nurse has doubled my Maxolon and also gave me zofran to take home for the nausea. They’ve also given me Ativan for the anxiety, and my onc has added Emend before the chemo next time. He said he could also look at giving me some extra days of steroids to help, or cutting my chemo dose if need be (I really don’t want to do that!).

I’m hoping this gets better, but from what I hear the effects are cumulative and tend to worsen? Any experiences or suggestions for my situation are greatly appreciated! Thank you :)
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Coping with FOLFOX - first doses

Postby martd » Fri Nov 23, 2018 1:55 am

For me the two days after disconnect I was wiped out, fatigue and nauseous. By the third day I started feeling better. I tried different things for the nausea, what worked the best was eating small snacks when I felt it coming on. Crackers and toast was good for me when I wanted something quick. It seems keeping food in my stomach helped. Your onc can try different nausea meds also, some work good for some people but not for others. Also when you find something that works try and stay ahead of it, as soon as you feel it coming take the meds, or whatever works. I worked also while going through it but it was rough and miserable, so you're definitely not soft. Just keep trying different things, and also I would have rounds where it completely wiped me out then other times it wasn't bad at all.

Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: Coping with FOLFOX - first doses

Postby Nohogirl » Fri Nov 23, 2018 2:19 am

My husband had 2 of his 8 chemo cycles so far and he was having the same symptoms you had mentioned. He is normally feeling fine on the day of his infusion/Monday and the days he is connected to his pump, but on day 3, Wednesday (the day his pump is being unhooked) he starts feeling really sick. Nausea, weakness, jaw pain, headaches, refusing to eat. By the end of Friday his starts feeling better and by Sunday he is back to his normal self. What really helps him on his critical days is the medical cannabis oil. It controls his nausea, increases the appetite and he is able to sleep at nights.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Coping with FOLFOX - first doses

Postby Koreysue » Fri Nov 23, 2018 2:20 am

I also felt the worst on disconnect day and the day after. Everyone reacts differently to the chemo, so no need to feel bad about that. Stay on the nausea meds, and let your body rest when you need to. Walking when I felt up to it seemed to help me mentally.
Korey
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

dliu
Posts: 66
Joined: Sun Jun 03, 2018 7:16 am

Re: Coping with FOLFOX - first doses

Postby dliu » Fri Nov 23, 2018 5:57 am

It was never really cumulative for my mum: she had a different set of side effects each time, so it was really a wheel of fortune kind of thing. She was never sick right after the infusions, but the worse side effects started later (i.e. on the weekend, if infusions were Mon-Tue-Wed). She had some better cycles when the oncologist upped her steroid dose, so I think that might help - although it might be problematic for insomnia/anxiety.

I think it's perfectly normal to feel tired, and there were times my mum had to sleep all day in order to feel good again. Tiredness is the side effect that was most cumulative in our case.

Take it easy on yourself and get rest when you need to - it might seem like you're not doing much, but your body is climbing Everest!
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

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Coping with FOLFOX - first doses

Postby cartech78 » Fri Nov 23, 2018 11:34 am

I had my first Folfox last Monday as well. I got a little sensitivity to cold drinks and I was super worn out for a couple days after being disconnected from the pump. I went to work through it all but there was a day where i told myself”should of stayed home today”. This coming Tuesday is my next round and im gonna do it while taking a curcumin supplement as I read a study it made folfox more effective. There is also some info out there that it could decrease some side effects. My ONC won’t know about it because he is a no supplement during chemo type of guy as most are. I hope your next round is easier on you.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Coping with FOLFOX - first doses

Postby Gravelyguy » Fri Nov 23, 2018 12:22 pm

I was very fatigued by the chemo. As others have said the day I got unhooked and then the next couple were the worst. I taught only mornings through it all and was shot by the time I was done. The fatigue and the neuropathy were the only things that seemed to be cumulative for me. I was nauseous after the first round but like others said eating a little bit even when I didn’t want to kept most of it at bay. Also staying hydrated really helped.

Hang in there,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Coping with FOLFOX - first doses

Postby Tim UK » Fri Nov 23, 2018 5:15 pm

Hey

Big shout out from London to Melbourne. My wife's family are all there ... I love it.

I'd say watch out for the steroids. You mentioned anxiety. I was on dexamethasone, and a doctor friend said that it can give you almost bipolar type mood swings (from super high energy to rock bottom lows). I looked it up, and it's true. But had not been mentioned. I switched to that 3-dose big fat pill (Emend, I think) and came off the dex entirely. Much better.

Best wishes
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

PetesStupidBowel
Posts: 3
Joined: Mon Jul 30, 2018 5:45 am

Re: Coping with FOLFOX - first doses

Postby PetesStupidBowel » Sun Nov 25, 2018 6:11 am

Rock_Robster - my experience was very similar to yours - OK for the first couple of days due to the steroids, then the day after disconnect I felt like crap and then slowly got better.

The first couple of rounds I was feeling good after four or five days, but this stretched out to a full week after round eight (ish). During my 'good' week I was able to live a relatively normal life, going to work and what not. The bad week was mostly spent in bed or on the couch.

If you have tiles / floorboards, then get some slippers to wear around the house. Even though we're coming into summer, your feet may get sensitive to the cold. Walking around the house in shorts, t-shirt, moccies and gloves is a great look in summer :) If you haven't been told yet, stay out of the sun. I got told off in no uncertain terms by one of the nurses for getting sunburned.

One thing that wasn't mentioned to me was that it's completely normal for treatment to be delayed a week (or two) if your bloods are low. After mine were consistently low, the bolus of 5-FU was dropped and I just had the take home baby bottle infuser. Also don't wait to feel nauseous before taking Maxolon, on day three, I just started taking three a day to keep on top of it - don't worry about running out, they'll give you a bottle every time you have chemo (I had to ask to them to stop because I has unopened jars in the cupboard).

User avatar
Maggie Nell
Posts: 1150
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Coping with FOLFOX - first doses

Postby Maggie Nell » Sun Nov 25, 2018 12:33 pm

You went for walks... how many times did you get caught in the rain without an umbrella last week, Rock-Robster?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.


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