What to expect from FOLFOX & 5-FU?

I was on folfox. I will say, speak to your doctor and ask if you can take immodium. I had some rough times, and then finally started taking immodium when I needed it and it really works.

I don't take my temp, but I definitely feel really hot after chemo. If you are close to your surgery, you should still keep on eye on your temp. 

One side effect they never mention is this weird lockjaw pain. It is fleeting, so push through it if you get it. Also, the 5fu caused my fingers to get darker, as well as lines in my palms, and my lips. It went away. 

Jurav said:

Thanks

Thanks Tru,

I do keep a list of changes. My Oncologist has a web page where you can record everything about your status on a daily basis.

Yes, they only really listed those four as issues to expect, even my Healthcare Provider Specialist only listed those things as well.

They did say there may be other things, but that those would be the most common and most troublesome.

I've looked at the lists of Side-Effects for it on many web sites and I see there are other less common things, but I was wondering if anyone experienced something outside of the listed known side-effects, like the temperature spike I had after my last treatment.

I like that your Oncologist has a web site you can go to daily. That is fantastic!  It sounds like you have a great team working with you. 

Tru

NewHere said:

FOLFOX

Hi

I am generally what Tru refers to as a "lucky bugger" in the chemo department.  FOLFOX caused me the cold sensivity issue and I also had neuropathy.  Those were the two big ones.   The neuopathy resolved for the most part, but I still have some.  (It was pretty bad for about a year and a half after I had my last treament.) 

I also had pretty much every other possible symptom, but limited  for the most part.  Never vomited, though nauseaous now and again.  Would eat ginger snaps.  Diaharea once.  The chemo seemed to have an exacerbated a possible abcess in my tooth, so had a root canal (My teeth are otherwise really good shape.)  I had the hiccups a few times.  That was annoying.  Lasted for awhile.  

As others mentioned, keep close attention on the neuropathy.  The neurapathy is caused by the OX portion of FOLFOX (Oxaliplatin).  My oncologist would not use it in more than 10 out of 12 the scheduled FOLFOX sessions (so max 10 FOLFOX, 2 5-FU really) due to the anti-cancer benefits are outweighed by the risk of permamant neuropathy issues.  He targerted a minumum of 8 FOLFOX if possible.  There is also studies/discussions for years now that 6 FOLFOX sessions works as well as 12.  All that is a roundabout way of saying that do not feel intimidated/scared by bringing up the neuropathy issue out of any concern of "hurting" your treatments.

(Note that the 5-FU is the FOL part of FOLFOX in case what I mentioned seemed a bit off).

 

#####

PS to Tru (Long running joke we have going on)  I am so chuffed I could use lucky bugger in a post today

 

I beleive I said BEGGAR.  

Of course, beggar is just a substitue. I am knowelgable enough to have used any number of intellegent words.

Tisk, tisk, New. You are a tease. 

P.S. I do believe you were literraly New Here on the forum, when you commented on my extensive list of side effects. See, I didn't scare you off. 

Tru

NewHere said:

Yes, it was Beggar.  Shows what happens if I read too quickly or at all 

I am now dechuffed.  That will me in the nex edition of the Merriam-Webster English English dictionary, and not the Merriam-Webster 'Murican English Dictionary.  You are welcome.

I must rememer that one. But please don't be dechuffed. Being chuffed is a good feeling. We all need to be chuffed at something. 

Tru

SophDan2 said:

Hi Jurav

You have come to the right forum for information.

I have been NED for 3 1/4 years now. I had all of the side affects that you have described. What stuck out in your comments with me, was the fact that the nausea made you not want to eat for a few days. In my opinion (for me anyways), I was determined to eat 3 meals a days, even though I could taste anything but a metallic taste (from the oxi). Instead of taking the prescribed nausea meds, I took edibles. Which took care of the nausea, made me hungry and I slept like a baby. I only used it 5 times out of my 12 treatments.

The other thing to really keep your eyes on is the neuropathy. In the beginning, as you have said, it goes away after a couple of days. I had 12 sessions for 48 hours each every 2 weeks (a total of 6 months). By the time I got to #8 the neuropathy was lasting 9 to 10 days into that 2 week period. My Onc said for #10 & #11 we'll cut the Oxi in half. We agreed to eliminate the Oxi for #12.  Today I still have just a tinge of neuropathy in my feet; I can only imagine how much more the neuropathy there would be if I hadn't cut it back toward the last few treatments.

It sounds like you have a good team around you, just remember, you are part of that team and have a say in the treatment.

Before you know it, you'll be 3 1/4 years out!

 

Good luck,

 

Barry

Hi Barry, you make some very good points. One is that you are part of that team and have a say in the treatment. That's is always important to keep in mind. It does sound like Jurav does have a very good team as you said but ultimately it's our lives and you can either help drive things or just cast your fate to the wind.
I also agree 100% with the edibles. They initially prescribed Emend which was pretty expensive and didn't really do squat. Edibles weren't around in 2004 so I would take a puff here and there (YES, I did inhale!) and it worked like a charm. I was able to withstand all of the rounds of oxy but it wasn't easy. I still have a little residual neuropathy but it doesn't cause me discomfort.
Currently, I'm on Erbitux and Avastin for a lung met and an abdominal wall met and I use edibles. Unfortunately, I have to drive out of state to get them but it's well worth it. Congratulations on your NEDness! Keep on doing what you're doing.
Best
Phil

Hello - I did 8 rounds of FOLFOX and then came home with 48 the pump of 5-FU each round. I experienced much of the same side effects you mentioned. The nausea never got so bad that I wouldn't eat, but I will say that I forced myself to eat sometimes simply because I knew I had to keep my strength up. 
I didn't get the fevers until about round 5 or 6. Lasted 24-36 hours and then would just go away. Was never bad enough that I had to go back to the dr. Controlled with cold compresses and advil. Just had to be careful with the Advil dosages because the nurses told me it could cause a false reading on my platelet counts - which could delay my next chemo treatment. Never became an issue since the fevers were gone long before my next set of labs. 
The biggest issue I dealt with (other than the hypersensitivity to cold) was the effects to my hands and feet. Swelling, redness, pain on skin at the joints, peeling. Make sure to moisturize REALLY WELL, even when you think it is fine. I use Aquaphor at night and cover with cotton gloves and socks and then CeraVe during the day. It's so important to keep that skin moisturized so that it does not crack. I'm still dealing with this part as now I am on oral chemo Xeloda which is basically 5-FU while doing radiation. 
Best to you