What to expect from FOLFOX & 5-FU?

Jurav
Jurav Member Posts: 13
edited January 2021 in Colorectal Cancer #1

Hi all,

I started Chemo (FOLFOX & 5-FU) on Dec 14th 2020. 

So far, the side effects they've told me about are:

  • Cold sensitivity
  • Neuropathy
  • Nausia
  • Fatigue

What I have experienced so far:

  • Cold sensitivity - Pretty bad after the treatment, but fades over the next week to 10 days.
  • Neuropathy - Minimal so far, I only get this right after the treatment and it goes away in a day or two.
  • Nausia - Not terrible, but enough to make me not want to eat for a few days after treatment
  • Fatigue - I had this after the first treatment, but after the second treatment, it's not too bad.
  • Diarhea - For a few days after the treatment, but went away.

I did have one very odd reaction after the last treatment. When I got home, i was doing fine, but then that evening my joints started to ache, so I laid down on the couch. I then started to feel really hot, so I checked my temperature and it was 100.8. I called the Oncologist and she said it was not a good idea to go to an emergency room due to COVID and recommended I take Tylenol and try to keep my temp down, and call back if it gets over 101.5. Taking Tylenol and using a wet cloth on my head kept my temp under 99. When I woke up the next morning, My fever was gone and it never came back. I'm still not sure what caused it, either they pumped the Chemo in too fast or maybe it was some 24-hour stomach virus or something.

Has anyone else experienced something like that?

What other side-effects have people experienced that I may come accross?

How bad can I expect the current side-effects to get?

-J

Comments

  • abita
    abita Member Posts: 1,112 Member
    edited January 2021 #2
    I was on folfox. I will say,

    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. 

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Well thats a bit of a giggle

    Really, they have only told you about FOUR side effects?

    There are NUMEROUS side effects - I think I had them all.  I listed my side effects from the top of my head - which felt like needles were being stuck in my whole scalp if anything touched it - to the tips of my toes, which went dark brown around the nails. 

    Every bodies body handles chemo differently. There are folks here who literally breezed throguh chemo, lucky beggars. And others who had their fair share, and then there were those of us who seemed to run the gamut. You will not know where you fall until your neck deep in it. 

    My suggestion, which you may already be doing, is to keep a list of EVERY LITTLE (and big) THING your body is experiencing. Write it down and take that list to your Oncologist. Go over that list at each infusion visit.  I can still see the face on my Oncologist the first time he was introduced to my list. He poked his head through the door and was about to leave, and I'm like 'I don't think so. I have a list'.  Bless him!

    I do have a list of all the side effects I experienced, here on the forum. I could link it if you would like.

    I wish you the best as you continue on with your treatment.     Be sure and tell your Ocologist about the neuropathy. You must not let that get too bad. They can lower the dosage if it is getting bad. 

    Tru

     

  • Jurav
    Jurav Member Posts: 13
    abita said:

    I was on folfox. I will say,

    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. 

    Thanks

    Thanks for the reply Abita.

    I'll keep an eye out for the changes in fingers and lips.

  • Jurav
    Jurav Member Posts: 13
    edited January 2021 #5
    Trubrit said:

    Well thats a bit of a giggle

    Really, they have only told you about FOUR side effects?

    There are NUMEROUS side effects - I think I had them all.  I listed my side effects from the top of my head - which felt like needles were being stuck in my whole scalp if anything touched it - to the tips of my toes, which went dark brown around the nails. 

    Every bodies body handles chemo differently. There are folks here who literally breezed throguh chemo, lucky beggars. And others who had their fair share, and then there were those of us who seemed to run the gamut. You will not know where you fall until your neck deep in it. 

    My suggestion, which you may already be doing, is to keep a list of EVERY LITTLE (and big) THING your body is experiencing. Write it down and take that list to your Oncologist. Go over that list at each infusion visit.  I can still see the face on my Oncologist the first time he was introduced to my list. He poked his head through the door and was about to leave, and I'm like 'I don't think so. I have a list'.  Bless him!

    I do have a list of all the side effects I experienced, here on the forum. I could link it if you would like.

    I wish you the best as you continue on with your treatment.     Be sure and tell your Ocologist about the neuropathy. You must not let that get too bad. They can lower the dosage if it is getting bad. 

    Tru

     

    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.

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    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.

    Wow!

    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
    NewHere Member Posts: 1,390 Member
    edited January 2021 #7
    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

     

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited January 2021 #8
    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

     

    *Shocked face*

    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
    NewHere Member Posts: 1,390 Member
    edited January 2021 #9

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

    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.

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited January 2021 #10
    NewHere said:

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

    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.

    Dechuffed

    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
    SophDan2 Member Posts: 150
    edited January 2021 #11
    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

  • PhillieG
    PhillieG Member Posts: 4,866
    edited January 2021 #12
    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

    Some very good points

    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

  • PhillieG
    PhillieG Member Posts: 4,866
    edited January 2021 #13
    Hi Jurav

    The side effects that you mention having are the main ones. You can look at any medication and find a lengthy list of side effects to the point where it can scare the crap out of a person (maybe not the best analogy since diarrhea is common and we don't need an incentive to crap more). Keep in mind that everyone has different experiences.
    As far as feeling very hot, I don't think that is uncommon. I don't specifically recall if I had it back them but I have experienced it on some of the treatments I've had. I had to go back on Erbitux and Avastin about 8 months or so ago and for the first few treatments I would sweat like crazy the first night until about 2am. Then the sweats would break. I never had the sense to take my temperature so I don't know how hot I actually was but I was familiar with getting the sweats.
    Obviously I can not give medical advice but I would be cautious with Tylenol and pain relievers that contain acetaminophen since the warning label says to use with caution and that prolonged use could cause liver damage. Whenever I need something over the counter I use Aleve or a generic brand that contains Naproxen. It works great and lasts 12 hours but I'm sure it has its own laundry list of side effects. For nausea I agree with Barry. It's the best thing I've tried and the only one that worked for me.
    I hope things don't get too tough.
    Best,
    Phil
     

  • Kaleidoscope49
    Kaleidoscope49 Member Posts: 34
    Hi Jurav

    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