FOLFOX side effects??? I dont know...can you tell me?

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  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member

    Just finished fourth round of FOLFOX
    Round four is over and the pump was removed without incident. Each round seems to get more interesting with different little twists to hold my attention. In this case the nausea has been more persistent and troubling. Numbness (neuropathy) in the fingers is a little more intense but not debilitating. The chemicals affect the ability to swallow and drinking or eating cold things is like swallowing broken glass. Also, I found it tender to chew at times. Interestingly my lips and face seem to have some numbness as well which the Oncologist says he has not seen before and attributes to diabetes. Speaking of diabetes, the PCM doubled my meds to try and hold the blood glucose down. He said that the increase is not to be alarmed about over the short haul but not good over a long time.

    Just got the date for the next scan...July 11, 2012 @ 0825 with a surgical consult to follow at 11:00. SCANXIETY to the max right now for us as we wait for the results. The Oncologist has scheduled two more rounds of Chemo post scan as well as more blood work just in case.

    Hope this is helpful...((Hugs of caring))

    Jaw Pain, Facial Numbness, sinus and numbness around teeth
    FatBob2010,
    My Mayo Oncologist had not heard of facial numbness either. After my 5th Folfox Treatment, I had an episode of "eye slammed shut", Jaw pain and jaw locked up" when I felt cold snow on my cheek Day One after finishing Oxy while I was on the 5FU Pump. I now have a damaged facial Nerve that causes my eye to be dry, my sinuses to hurt and drip, teeth feel like I had novacain at the dentist, and jaw pain. I am 1 year from finishing Folfox and I still have nueropathy on my hands and feet. But the facial nerve damage is most irritating.

    My oncologist had not seen this but a fellow Oncologist had a patient with the same issues. It is an oxy effect not diabetes.

    Prayers for a good scan July 11th.
    NB
  • mskautz
    mskautz Member Posts: 30

    Jaw Pain, Facial Numbness, sinus and numbness around teeth
    FatBob2010,
    My Mayo Oncologist had not heard of facial numbness either. After my 5th Folfox Treatment, I had an episode of "eye slammed shut", Jaw pain and jaw locked up" when I felt cold snow on my cheek Day One after finishing Oxy while I was on the 5FU Pump. I now have a damaged facial Nerve that causes my eye to be dry, my sinuses to hurt and drip, teeth feel like I had novacain at the dentist, and jaw pain. I am 1 year from finishing Folfox and I still have nueropathy on my hands and feet. But the facial nerve damage is most irritating.

    My oncologist had not seen this but a fellow Oncologist had a patient with the same issues. It is an oxy effect not diabetes.

    Prayers for a good scan July 11th.
    NB

    side effects
    Had my first round 2 weeks ago, my second is scheduled for the 3rd. I had the jaw pain and asked the nurse about it, she said it was because I triggered the nerve by eating something cold. I had had a turkey sandwich with cold tomato the first day. It went away after about a week but it would happen every time I ate something for the first 4 to 5 bites. Also for awhile when I would drink something cold it felt like I had something stuck in my throat on top, a sharp pain. Had the bleeding once or twice, very sore butt, have almost fallen 3 times, didn't know loss of balance was a symptom. Constipation was bad for a couple days, but if not that I have to deal with the other too much! Hair was thinning before chemo, Dr. said it was probably stress, now its really coming out, will shave it in a couple weeks. Had the heartburn and take Tums. didn't ask my Dr. about that, is Tums ok? The nurse said I would get extremely tired the day after the pump was removed but I got that that day and slept the day away. Had the nausea but the nurse said it's because I didn't take the nausea medicine right cause I thought I was supposed to take it if I got nausea, not before..dumb me. So if I got all these symtoms with the very first round I'm really in for hell I suppose cause I got lots more ahead of me, 5 1/2 more months. Some days I would feel ok but then I get real tired off and on, is this normal?? Does the hot weather add to the feeling of crappiness?
  • Phil64
    Phil64 Member Posts: 838 Member
    mskautz said:

    side effects
    Had my first round 2 weeks ago, my second is scheduled for the 3rd. I had the jaw pain and asked the nurse about it, she said it was because I triggered the nerve by eating something cold. I had had a turkey sandwich with cold tomato the first day. It went away after about a week but it would happen every time I ate something for the first 4 to 5 bites. Also for awhile when I would drink something cold it felt like I had something stuck in my throat on top, a sharp pain. Had the bleeding once or twice, very sore butt, have almost fallen 3 times, didn't know loss of balance was a symptom. Constipation was bad for a couple days, but if not that I have to deal with the other too much! Hair was thinning before chemo, Dr. said it was probably stress, now its really coming out, will shave it in a couple weeks. Had the heartburn and take Tums. didn't ask my Dr. about that, is Tums ok? The nurse said I would get extremely tired the day after the pump was removed but I got that that day and slept the day away. Had the nausea but the nurse said it's because I didn't take the nausea medicine right cause I thought I was supposed to take it if I got nausea, not before..dumb me. So if I got all these symtoms with the very first round I'm really in for hell I suppose cause I got lots more ahead of me, 5 1/2 more months. Some days I would feel ok but then I get real tired off and on, is this normal?? Does the hot weather add to the feeling of crappiness?

    My first FolFox treatment
    My first FolFox treatment was on 6/21/12. And it did come with some of the side-effects. The Sunday following treatment was definitely a day of rest. I was completely exhausted and slept the entire day. But as the week unfolded I felt progressively better. I was able to eat cold things (cold sensitivity seemed to go away). I was able to exercise. I was even thinking about golfing as it seemed like I was doing pretty good.

    We had a pool party this past Sunday (7/1). This heat has been crazy in Michigan and so I decided to take a cautious dip in the cool pool. It felt good to swim.
    Later in the evening, after eating dinner, I started to feel aches and pains and chills. It felt like a flu bug was starting to come on. The muscle aches and chills and fatigue continued through Monday and Tuesday. I also had some bad constipation as well.

    So now I’m wondering:

    Was the flu like symptoms a side-effect from the FolFox? Maybe I should not have gone in the pool? Maybe it was a combination of the cool pool and hot sun (although I didn’t spend too much time in the sun and I had 50 power sun block). Or maybe I was actually battling a flu virus?

    Also, round 2 of chemo is scheduled for Thursday and I have some anxiety as I understand that the side-effects may worsen as the treatments progress.

    Another side question – Is it okay to have a beer or two during threatment? Like and mid points between treatments when I’m hopefully feeling pretty good?

    I could ask the doctor, but I thought I’d ask the veterans first. And my wife won’t let me have a beer until I get the green light.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Phil64 said:

    My first FolFox treatment
    My first FolFox treatment was on 6/21/12. And it did come with some of the side-effects. The Sunday following treatment was definitely a day of rest. I was completely exhausted and slept the entire day. But as the week unfolded I felt progressively better. I was able to eat cold things (cold sensitivity seemed to go away). I was able to exercise. I was even thinking about golfing as it seemed like I was doing pretty good.

    We had a pool party this past Sunday (7/1). This heat has been crazy in Michigan and so I decided to take a cautious dip in the cool pool. It felt good to swim.
    Later in the evening, after eating dinner, I started to feel aches and pains and chills. It felt like a flu bug was starting to come on. The muscle aches and chills and fatigue continued through Monday and Tuesday. I also had some bad constipation as well.

    So now I’m wondering:

    Was the flu like symptoms a side-effect from the FolFox? Maybe I should not have gone in the pool? Maybe it was a combination of the cool pool and hot sun (although I didn’t spend too much time in the sun and I had 50 power sun block). Or maybe I was actually battling a flu virus?

    Also, round 2 of chemo is scheduled for Thursday and I have some anxiety as I understand that the side-effects may worsen as the treatments progress.

    Another side question – Is it okay to have a beer or two during threatment? Like and mid points between treatments when I’m hopefully feeling pretty good?

    I could ask the doctor, but I thought I’d ask the veterans first. And my wife won’t let me have a beer until I get the green light.

    hmmm
    Pools can have lots of things swimming in them without too much chlorine.
  • LazrTekr
    LazrTekr Member Posts: 4
    Side Effects: My Experience

     

    Hi all! New to the site.

    I was diagnosed with S4a Colon Cancer in November of 2012 and went through a colon resection to remove the tumor, along with 6" of my colon, 21 lymph nodes (10 were cancerous) and unfortunately, they could not resect the liver (met tumors) because they are on both sides. I am so lucky the surgery went well and I was back to work in 2 weeks.

    I have done 9 rounds of FolFox so far and the first 4 were a cake walk. Other than the cold sensitivity, it wasn't bad. After the 4th and on, it has gotten much worse. Heartburn (belching and hiccups), mouth sores, slight neuropathy, exhaustion and most annoying now, the rectal pain from constipation/diarrhea. Started Avastin on my 7th cycle of chemo and that has affected by taste greatly. Add that to the mouth sores and lack of appetite and you have a trifecta of reasons not to eat.

    My ONC gave me Acyclovir for mouth sores and that has really helped keep them at bay and taking an antacid/acid reflux pill has helped with the heartburn issue. I have also begun using "finishing wipes" at the toilet. These again have helped but no amount anything is going to negate the fact that I am inflamed inside, using the bathroom often, and this is causing a lot of pain. At this rate, I am going to call my ONC and see about getting pain meds like some of the others that have commented about rectal pain.

    My liver tumos have been reduced by 2/3rds at my last scan, after 6 cycles of FolFox and doing well.  I start cycle 9 next week and cannot wait for cycle 12 (finished?)!

     

    Thanks for listening and hope all goes well with everyone!

     

    Brian

     

  • PatchAdams
    PatchAdams Member Posts: 271
    LazrTekr said:

    Side Effects: My Experience

     

    Hi all! New to the site.

    I was diagnosed with S4a Colon Cancer in November of 2012 and went through a colon resection to remove the tumor, along with 6" of my colon, 21 lymph nodes (10 were cancerous) and unfortunately, they could not resect the liver (met tumors) because they are on both sides. I am so lucky the surgery went well and I was back to work in 2 weeks.

    I have done 9 rounds of FolFox so far and the first 4 were a cake walk. Other than the cold sensitivity, it wasn't bad. After the 4th and on, it has gotten much worse. Heartburn (belching and hiccups), mouth sores, slight neuropathy, exhaustion and most annoying now, the rectal pain from constipation/diarrhea. Started Avastin on my 7th cycle of chemo and that has affected by taste greatly. Add that to the mouth sores and lack of appetite and you have a trifecta of reasons not to eat.

    My ONC gave me Acyclovir for mouth sores and that has really helped keep them at bay and taking an antacid/acid reflux pill has helped with the heartburn issue. I have also begun using "finishing wipes" at the toilet. These again have helped but no amount anything is going to negate the fact that I am inflamed inside, using the bathroom often, and this is causing a lot of pain. At this rate, I am going to call my ONC and see about getting pain meds like some of the others that have commented about rectal pain.

    My liver tumos have been reduced by 2/3rds at my last scan, after 6 cycles of FolFox and doing well.  I start cycle 9 next week and cannot wait for cycle 12 (finished?)!

     

    Thanks for listening and hope all goes well with everyone!

     

    Brian

     

    Brian

    This is a very old thread and several, including the lady who began this thread, have since died.  Please start a new thread and take note of dates when searching.  

  • LazrTekr
    LazrTekr Member Posts: 4

    Brian

    This is a very old thread and several, including the lady who began this thread, have since died.  Please start a new thread and take note of dates when searching.  

    Patch,
     Thank you for the

    Patch,

     Thank you for the information and I apologize.

  • zazaka
    zazaka Member Posts: 2
    RobinKaye said:

    Belching
    During my husbands last three rounds he had the belching, sounded almost like hiccups and it was all.the.time! Drove the poor man crazy. I'm surprised you're on steroids the whole time, Jim only had them at infusion and they made him feel good until they wore off two days later when the pump was disconnected.

    Robin

    So called hiccups

    I have just had one FOLFOX treatent 9 days ago and I can't stop with the hiccups or what I call spams........does this ever go away??  Doctor told me the problem is the chemical Oxaliplatin and they are going to reduce the dosage by half at the next infusion scheduled for May 21.  Unless I still have this issue in which case they will delay one week........thank you anyone...Zack

  • renw
    renw Member Posts: 282 Member

    Brian

    This is a very old thread and several, including the lady who began this thread, have since died.  Please start a new thread and take note of dates when searching.  

    Every time an old thread like

    Every time an old thread like this pops up along with comments from old-timers, it provides a chilling reminder of just how ruthless and unforgiving this disease can be. This thread talks about starting folfox and is less than a year old.

  • zazaka
    zazaka Member Posts: 2
    steved said:

    Oxaliplatin
    Oxaliplatin is a bit of a nasty drug for some of us- I tend to tolerate chemo well but had to stop oxaliplatin after an allergic reaction and have to say I qas quite pleased as was struggling with the developing neuropathy. As for other effects mouth ones are very common, gastritis symptoms are very common (and I can't see any interaction between it and cimetidine- though there are some in vitro (test tube studies) that suggest cimetidine may reduce the toxicity of oxaliplatin while others suggest it helps stop tumour meetastasising, so not sure what to make of that (probably on balance not a good or bad thing).

    The rectal bleeding is more concerning- it is a rare reported side effect of oxaliplatin (the teechnical term on the bottle and leaflets is hematochezia). It could also be something unrelated eg piles, so best to get checked out on that front.

    Report all side effects to your team and enjoy all that food!

    steve

    So Steved........how long did it take for your ONC

    So how long did it take for your ONC to stop the Oxaliplatin.......my issue is sever hiccups or spasms......Baclofen does and does not work.........did they have to replace it with some other drug........

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    zazaka said:

    So Steved........how long did it take for your ONC

    So how long did it take for your ONC to stop the Oxaliplatin.......my issue is sever hiccups or spasms......Baclofen does and does not work.........did they have to replace it with some other drug........

    Again

    This thread is old, a few deceased.  Please PM the person or start a new thread.  and look at dates before posting old threads.  Thanks

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    renw said:

    Every time an old thread like

    Every time an old thread like this pops up along with comments from old-timers, it provides a chilling reminder of just how ruthless and unforgiving this disease can be. This thread talks about starting folfox and is less than a year old.

    Just to clarify (sorry to keep this thread going),

    Idlehunters was not starting FOLFOX for the first time.  She was dealing with recurrence (you'll note she joined in 2009).

    This is one reason I would say the old threads should not be revived, as it can give a skewed perspective on things.