Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 13
Joined: Sat Mar 23, 2019 9:52 pm


Postby Jen43 » Wed Jun 19, 2019 5:21 am

I am going to be starting 6 rounds of folfox soon. I would like to know peoples experience on it good/bad, side effects short and long term.

User avatar
Green Tea
Posts: 297
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara


Postby Green Tea » Wed Jun 19, 2019 6:13 am

FOLFOX side effects management -- including links to 2 FOLFOX diaries containing people's experiences

Mrs E
Posts: 4
Joined: Tue Jun 18, 2019 9:38 pm


Postby Mrs E » Wed Jun 19, 2019 6:48 am

I kept a journal which was very helpful. My reactions and and how i was feeling energy wise followed a similiar pattern after each treatment so it was helpful in planning my kids and work schedules.
My hair thinned but didnt all fall out so a layered haircut hid it, I had sensitivities to cold drinks or touching cold for a few day (watermelon is a good hydration. I went thru chemo during the summer as well) wear a hat in the sun and reapply sunscreen often or you will burn very fast, the mouth sores were difficult but my oncologist gave me a numbing liquid that helped and I decided what I wanted to eat on a day by day basis. The best advice I got was one day at a time dont look at treatment as a whole but individual days otherwise its easy to get overwhelmed. You can do this!
Mom of 4 beautiful kids
2/2016 - diagnosed stage 3b cc
Surgery and ileostomy
6 months folfox and all the fun side effects
12/2016 - reversal of ileostomy
Clean scans so far and prayers for keeping them clean

Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ


Postby Pyro » Wed Jun 19, 2019 8:15 am

I’m not going to sugar coat it, it’s terrible, probably the worst I’ve done. Eat when you can, sleep as much as possible, keep warm water on hand. The Oxi works very well but there is a price to pay for it, and remember the side effects are also cumulative, it just gets worse. You can do it, just tell yourself there’s only a few infusions left.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am


Postby Deb m » Wed Jun 19, 2019 9:16 am

My husband did 12 rounds of it. His worst days were day 4 and 5 of each cycle. He had numbness on his feet and finger tips and sensitivity to cold. He had almost every warned side effect, but it was all very manageable and it all resolved within several months after his last cycle. With the exception of those days 4 & 5, he was able to function almost normally.

My advice is to drink a lot and often. Make protein drinks to be sure you maintain a good calorie count and that you get plenty of nutrition which will both help you feel better. Get plenty of rest. You can do this, just take it one day at a time and before you know it, your walking in for your last dose.

Posts: 423
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey


Postby Beckster » Wed Jun 19, 2019 10:39 am

The one good thing is that you are Stage II...the second is that you are taking the new protocal of 3 months (6 cycles) instead of 12. Researh states that the new protcol lessens side effects... ... lon-cancer
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
LN: 0/24
LVI present
Surgical margins: clear
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7
Clear Colonoscopy 10/17, 11/19 :D

User avatar
Posts: 473
Joined: Wed Oct 24, 2018 10:30 am


Postby ginabeewell » Wed Jun 19, 2019 2:00 pm

Pyro wrote:I’m not going to sugar coat it, it’s terrible, probably the worst I’ve done. Eat when you can, sleep as much as possible, keep warm water on hand. The Oxi works very well but there is a price to pay for it, and remember the side effects are also cumulative, it just gets worse. You can do it, just tell yourself there’s only a few infusions left.

I didn't have quite as much trouble with it, and actually found that my cycles 6-13 were easier than cycles 1-5. (In between those, I had a chemo break due to an infection, and it may have been that I was just stronger after that than I was when I started treatment.)

The Oxi in particular I found to be cumulative. But I got laser treatments at my acupuncture sessions, and that seemed to help somewhat, I don't think the Oxi hit me as hard as it has some people. My last 5 cycles have been without Oxi - and I haven't missed it!

One thing that helped tremendously was getting fluids to stay hydrated. Northwestern allowed me to work with a home nurse to handle those so I didn't have to come in for them, and she taught us how to do it ourselves. I do a bag or two of fluids after I disconnect (like one bag Wed right after disconnect and one Thurs or Fri); and then if I am not feeling great I go back to Northwestern the following week and have them access me for a few more. This is particularly helpful if I have to fly for any reason. If your center will allow you to manage your own disconnect, doing fluids is not that much harder!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Posts: 464
Joined: Mon Oct 01, 2018 4:29 pm


Postby Punky44 » Thu Jun 20, 2019 12:48 am

I think everyone reacts differently to it so it’s hard to know what to expect. Besides thinning hair and some exhaustion toward the end, my mom’s 8 rounds were really nothing too noteworthy in her words.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0
Latest update: 12/17/20: Clear CT; CEA 3.0

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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

Who is online

Users browsing this forum: Google [Bot] and 2 guests