Folfox protocols

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Posts: 11
Joined: Mon Dec 31, 2018 9:59 pm
Location: Dallas, Texas

Folfox protocols

Postby texmexflute » Sat Feb 09, 2019 1:14 pm

Hi all!

I'm fairly new to this forum but have been doing a lot of reading. After recovering from liver resection and sbrt, the plan is to do mop-up chemo - 6 more rounds. I was on folfiri + avastin with very few side effects but onc was not happy with the fact that 6 rounds did not impact my liver mets. I have been able to avoid oxaliplatin since my first round of chemo (xeloda) in March 2018 but that is no longer going to fly. I had polio as a baby and have lived with the challenges of mobility impairment since then. Since polio is a neuro-musculature disease we thought it best to avoid the drug that would cause more problems. I'm also a musician - flutist - and didn't want to impact that. But of course, now it's all about staying alive so I'm gonna do what it takes!

So here's what I'm trying to find out. I've read early on about different thing that help mitigate the neurological side effects of folfox, but since that wasn't what I was on I basically read and forgot. Now I want to know! Is there somewhere on the forum where someone has fleshed out all the different things that help? I'm not worried about the gastric issues - my wife says I have an iron gut. I never had gastric issues with irinotecan. I'm most concerned about neuropathy as well as the cold sensitivity.

I'm treated at UTSW and they have been great to this point with how chemo is administered (with the additional infusions for nausea, etc). I also wondered if the administration of folfox is different than folfiri.

Any helps with this would be greatly appreciated!

62 yo Male (polio survivor) DX 2-2018
2-18 right hemi-colectomy (robotic/minimally invasive)
Stage 3b - T4N1Mx
3-18 thru 8-18 xeloda
9-18 scans indicate 4 liver mets
and possibly in omentum/peritoneum
Upgraded to stage 4
9-18 thru 11-18 4 rounds Folfiri + Avastin, 2 rounds Folfiri only
12-26-18 3 liver mets removed (robotic/minimally invasive) + omentum biopsy (no cancer)
1-19 SBRT remaining 2 liver mets that were hard to reach
2-19 begin 6 rounds of mop-up chemo but folfox this time

Posts: 43
Joined: Tue Oct 02, 2018 11:45 pm

Re: Folfox protocols

Postby Nordy1 » Sat Feb 09, 2019 3:53 pm


Im fairly new as well but have done oxaliplatin with leucovorin and fluorouracil but not not folfiri. I had 11 out of 12 rounds and had all the listed side effects and by the end had what was deemed severe neuropathy of my hands and feet. I've been off the chemo since October and I'm gradually getting my hands and feet back and hope to have all of it back by summer. I walk every day on the treadmill and its getting better, I'm getting better. My onc nurse told me that b vitamins may help and Ive been taking them intramuscular every week, not sure if they are part of my improvement or not though. I'm grateful cancer was caught when it was and that medicine has come as far as it has. I would do it again if needed because I owe my family and myself to do my best. My goals and priorities in life have changed (as Im sure everybody does) and rather then me working all the time to retire someday in the future in a comfortable life and help my children when Im gone,- now just trying to find a way to retire and enjoy my family today.

You have obviously gone through a lot both with cancer and polio so I feel confident you will do well.

Im sure some very knowledgeable people here will jump in this topic and help you.
good luck

jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

Tupelo honey
Posts: 42
Joined: Tue Jul 19, 2016 7:57 pm

Re: Folfox protocols

Postby Tupelo honey » Sat Feb 09, 2019 7:19 pm

I was at UTSW too. Here’s a cut and paste of my supplements... I was able to get through the full chemotherapy regime with no reductions in doseage.

... I used Alpha lipoic acid and glutamine from a day or two before infusion to a few days after - prob 5-6 days each cycle. I usually took 15 grams of glutamine powder mixed in water twice a day and 2 - 500 mg pills of ALC twice a day. Plus 100 mg of B6 to protect against Hand Foot Syndrome, which I never got.

I was a bit more concerned about the calcium magnesium combo, as it's been a little controversial. It used to be a standard part of treatment based on a study showing it reduced neuropathy but it's been pretty much discounted as being effective against neuropathy and one study then seemed to show it reduced chemo effectiveness. Then that study was discounted. Perhaps it really was a zero sum game as the general consensus (and my oncologist) has it nowadays but I'd been taking magnesium and calcium anyway so I upped it to the old doses of 1 gram (1000 mg) of each immediately prior to infusion on the day of chemo only.

I do recall that I heard / read any antioxidants were counterproductive to chemo, as they may "protect" the bad cells from intentional damage by the chemotheraputic agents, whose job it is to damage the "bad" (cancer) cells. I did avoid vitamin C in supplementation form.

I don't know whether any of this truly makes a difference, or just helps give us a sense of control during a frightening time. I'll also say I 100% believe there is no 100% one-size-fits-all solution and everyone's causes, treatments and results are going to vary based their individual biology and genetics.

But so far, my outcome has been good and I'll take it. I'm not far enough out from treatment to comment about the overall effectiveness the other ones I took more for their "anti-cancer" (Curcumin, PSK, Celixicob) and "anti-metastatic" (cimetidine, modified citrus pectin) properties but for the above mentioned four I took specifically to address potential neuropathy, whether I was just lucky or not, I can state it 100% worked and I am one of the lucky ones with no lingering symptoms.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

Posts: 44
Joined: Sat Dec 02, 2017 2:04 am

Re: Folfox protocols

Postby Dionca » Sat Feb 09, 2019 7:32 pm

I dug out some of the info (shown below) that I researched while undergoing FOLFOX. I did get permanent neuropathy in my feet, despite taking vitamins. My hands were pretty bad as well, but that went away in time, and they are fine. From reading other accounts, it seems to be the feet, are more impacted than the hands, but of course, it varies from person to person, and you may get neither.

The vitamins/minerals could be taken during chemo, but it's best to check with your dr beforehand, to make sure they don't interfere with chemo or any other medication. For example, I was told not to take vitamin c, because it could "weaken" the effect of the chemo.

The prescription meds don't prevent neuropathy, but can be prescribed to ease the symptoms. They can cause side effects, in some people.

During chemo I took alpha-lipoic acid, B vitamins, milk thistle and calcium, but I still got neuropathy, but who knows, maybe it would have been worse without. I just took them to make sure I was doing all I could.

After chemo, I tried gaberpentin, but I didn't realise it was something you had to take 3 times a day and gradually increase the dose. I didn't find it made a difference, so I stopped taking it after a few weeks.

Alpha-lipoic acid
Acetyl-L-carnitine (an amino acid)
B vitamins (B6, B12, B-complex)
Calcium and Magnesium
Folic acid
Milk Thistle

Lyrica (pregabalin)
Gabapentin (neurotin)
Cymbalta (duloxetine)
Amitriptyline (elavil)

stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi 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 /1.5
recurrence in left lung Feb 2020

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Folfox protocols

Postby O Stoma Mia » Sat Feb 09, 2019 10:08 pm

texmexflute wrote:... I'm also a musician - flutist - and didn't want to impact that. But of course, now it's all about staying alive so I'm gonna do what it takes! ...

Posts: 585
Joined: Fri Apr 06, 2018 11:40 am

Re: Folfox protocols

Postby boxhill » Tue Feb 12, 2019 8:34 pm

I took B complex 100 caps, L-glutamine, and R-Alpha Lipoic Acid during Folfox. I started developing a little neuropathy in my fingertips at Cycle #10, IIRC. Oxy was already cut back in an effort to keep my platelets up, I cut it out entirely for my lat infusion. As is common, it worsened after chemo, but recently it's fading a bit, I think. Still worse than when I was actually on Folfox. My NP says it takes up to 18 months for neuropathy to improve as much as it is going to.

I used to play the flute--obviously not at your level!--and I'm trying to decide if the level of neuropathy I have now would impede me. I think I could play, but it would be very unpleasant. I think it would affect musicality more that movement, if you know what I mean. Mine feels like a constant kind of burning sensitivity/tingling. But everyone is different.

If you go ahead with folfox, I think you should look into reducing the oxy dose early on. I think there is a known cumulative dose at which toxicity, and thus neuropathy, sets in.

Do you know anything about your tumor genetics? If you have been through folfiri, you could be eligible for keytruda.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Posts: 317
Joined: Thu Jul 05, 2018 6:03 pm

Re: Folfox protocols

Postby Gravelyguy » Wed Feb 13, 2019 5:45 am


I made it through a full 12 rounds of Folfox. I finished last March. I have no idea if helped or not as I am a trial group of one, but she sells Plexus health supplements and had me on their vitamins and probiotics starting a little before dx. She had me take a product called Nerve when I went on Folfox. As the name implies, it is supposed to help people with nerve issues.

I never had any hand neuropothy. My feet managed pretty well too. I do continue to have slight tingling on the bottoms of my feet. I only really notice it when I am bare foot. Otherwise, I have no lasting side effects from the Folfox.

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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

User avatar
Posts: 11
Joined: Mon Dec 31, 2018 9:59 pm
Location: Dallas, Texas

Re: Folfox protocols

Postby texmexflute » Sat Feb 16, 2019 9:23 pm

Thanks for the Plexus suggestion. My wife uses the probiotic, so we're looking at the Nerve pills to see if that's something my onc would allow. And knowing you didn't have many problems with folfox is encouraging. Everyone I've read seemed to really struggle with it.

At this point genetics don't come into play KRAS, NRAS, BRAF are all wild. MSS. HER2 non- amplified. Only mutations present are P53 and APC. Also, my tumor was right side.Before liver mets, I did xeloda without oxi (neuropathy concerns). Then liver mets showed up on scans. They wanted to do folfiri with avastin 6 rounds to see how the liver mets would respond, but there was no shrinkage. The largest met was 2.6 cm so not too big. So now for the mop-up after all the liver work they want to go with folfox. Seems like the original gold standard (that we haven't tried yet.) So ultimately, I don't know if Keytruda or any of the other newer meds would work for me. I guess we'll see.

I appreciate all of the responses about what has worked, possibly worked, and what comes after. They give me hope for what is to come!

62 yo Male (polio survivor) DX 2-2018
2-18 right hemi-colectomy (robotic/minimally invasive)
Stage 3b - T4N1Mx
3-18 thru 8-18 xeloda
9-18 scans indicate 4 liver mets
and possibly in omentum/peritoneum
Upgraded to stage 4
9-18 thru 11-18 4 rounds Folfiri + Avastin, 2 rounds Folfiri only
12-26-18 3 liver mets removed (robotic/minimally invasive) + omentum biopsy (no cancer)
1-19 SBRT remaining 2 liver mets that were hard to reach
2-19 begin 6 rounds of mop-up chemo but folfox this time

Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Folfox protocols

Postby Jannine » Sun Feb 17, 2019 9:28 am

You probably already know this, but avoid foods enriched with folic acid while on FOLFOX. In the US this includes most flour, pasta, rice,cereal, and bread. However if you don't mind checking labels, most organic products are not enriched and will not contain extra folic acid. Some imported products won't include it either, but you have to check.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Folfox protocols

Postby AppleTree » Sun Feb 17, 2019 3:07 pm

I am not sure, but I attribute my lack of neuropathy to knitting. I just knit square, cotton dishcloth mostly while on Folfox. I did 12 rounds. Just the very tips (1/4", now about 1/8") of my finger tips got numb.

I also walked the dogs just about every day. I stomped my feet, like a marching soldier. I have very little issue with my feet. The worst is a weird feeling...a little like walking on wet sand.

Maybe these things did help me because my oncologist said I did really well. She seemed surprised. But she was also surprised that my hair fell out on Folfox. I guess it affects everyone differently.
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

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
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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

Who is online

Users browsing this forum: Google [Bot], Smills27 and 4 guests