10 the Folfox 5FU tomorrow

SophDan2
SophDan2 Member Posts: 150 Member

Hi All,

Been a while since my last posting. Tomorrow I will be receiving my 10th of 12 Folfox 5FU treatments, for my Stage 3 C Colon Cancer. Met with oncology doctor this morning. Based upon the information shared with the doctor about side effects from treatment #9, it was decided to lower the Oxi by 35%. I have been very clear throughout all of the treratments, that I do not want to end up with neuropathy for the rest of life (however long that might be). Has anyone else made a decision like mine at this stage of the treatments? I want to get through all 12 of the treatments, but want to fend off life long neuropathy. If you were to look at me, I do not look sick, but inside the side effects are becoming tough to deal with, hence the reduction of the Oxi.

Any feedback would be appreciated.

Thanks,

Barry

Comments

  • Woodytele
    Woodytele Member Posts: 163
    Same here

    I had it reduced by about the same amount, then stopped Oxi altogether at #14.  It was starting to affect my feet, hands, etc...My Onc said I went further than most.  A lot of people sop around 8/9 or so. 

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    I stopped at nine

    buthad the Oxy reduced at seven or eight. Unfortunately, I still have neuropathy and I'm four years out from treatment.  My Oncologist doesn't agree with me, but I honestly believe that my neuropathy was caused by an overdose of 5FU. Its a long story, which I'll cut short. Lets just say, I was on the pump during radiation, 24/7. The pump broke. I was without chemo for 8 hours. The Onc cranked my timed infusion to ever 15 seconds instead of every 60 seconds (or was it 30? So long ago now). It was then that the neuropathy blew up. My hands went purple over night, and my feet felt like they were swollen to the size of balloons. 

    So, long story short, I don't think its always the Oxy that causes neuropathy. 

    The 5FU was cut short by a week once he saw how bad I looked.

    Good luck with your decisions. I live with my neurpathy, but it is not painful, just numb and tingly. 

    Tru

  • Cindy225
    Cindy225 Member Posts: 172
    Stopped at 8

    In total I had 8 cycles of Oxi and 12 cycles of 5FU.  My oncologist felt the goal was 8 for Oxi and 6 the minimum for the best outcome.  My last disconnect was June 9 and I still have neuropathy.  It's not overwhelming just more annoying; can't do buttons, jewelry clasps and my feet feel like there's always something in my shoes and there never is.  The new normal that likely over time will subside.  You're so close to being done with chemo Barry! Yay!

    Cindy

  • mozart13
    mozart13 Member Posts: 118
    Neuropathy

    I developed neuropathy after 3rd treatment of folfox, dose of oxi dropped to 65%, neuropathy went away, my oncologist told me that I had excellent response, also that was the peak of my radiation treatment, about 17 weeks post is the peak.

    After 7th dose of folfox neuropathy  came back, after 8th became permanent, folfox dropped, last 2 rounds on xeloda pills.

    Neurpathy is annoying, you kind of learn to live with it, I drop things here and there, things just slip beetwen fingers.

    Initial plan was to get at least 8 rounds of folfox and than switch to xeloda, so the plan worked.

    Good luck to you!

  • SophDan2
    SophDan2 Member Posts: 150 Member
    Thanks to you all for your feedback.

    Just got back from my treatment (#10), with the pump connected until Friday. After reading all of your responses, I feel that the decision to reduce Oxi to 65% was a good one. Hopefully, I can make it through #12, even if I further reduce the Oxi for #11.

    This is certainly a very strange dance that we are (have) gone through.

    Thanks again

    Barry

  • Tunadog
    Tunadog Member Posts: 235
    Went thru complete course of Oxaliplatin and Xeloda...

    Went thru complete course of Oxaliplatin and Xeloda reducing the Oxaliplatin for the last two treatments. 

    I "coasted" for two months after completing treatment and then the Neuropathy set in.

    I'm 95% recovered in my hands and about 75-85% in my feet. Feeling improvement every day.

    Good Luck

  • SophDan2
    SophDan2 Member Posts: 150 Member
    edited October 2017 #8
    Tunadog said:

    Went thru complete course of Oxaliplatin and Xeloda...

    Went thru complete course of Oxaliplatin and Xeloda reducing the Oxaliplatin for the last two treatments. 

    I "coasted" for two months after completing treatment and then the Neuropathy set in.

    I'm 95% recovered in my hands and about 75-85% in my feet. Feeling improvement every day.

    Good Luck

    Question

    Have you gone through post treatment testing yet, to see if the you are cancer free? I was told that they do the post treatment testing after 3 months. So, you didn't feel the neuropathy at the end of your treatment, but it showed up 2 months later?

    Thx for your feedback Tunadog

  • aoccc2015
    aoccc2015 Member Posts: 37
    Had 12 Oxy and 6 months later

    Had 12 Oxy and 6 months later still feels like my hands and feet are asleep. I think it did some great work because after i dropped it from the pump/avastin trio, new things popped up. Never notice it while im working or walking but after walking for 9 hours my feet feel destroyed. At least the other stuff like cold sensitivity is gone. I doubt the feeling it ever come back but ill take it again if they let me,  I cant use my hands or feet dead anyway.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Lowering the Oxy

    Your fortunate that they lowered it.  My doctor wouldn't lower it and she said it was only "listed" as a nuisance so she wouldn't do it and now my neuropathy is perment and now I'm on medication everyday because of it.  I'm glad that you are on top of things.  Wishing you the best.

    Kim

  • Tunadog
    Tunadog Member Posts: 235
    edited October 2017 #11
    SophDan2 said:

    Question

    Have you gone through post treatment testing yet, to see if the you are cancer free? I was told that they do the post treatment testing after 3 months. So, you didn't feel the neuropathy at the end of your treatment, but it showed up 2 months later?

    Thx for your feedback Tunadog

    Post treatment testing

    After Oxaliplatin and Xeloda treatment I had a PET/CT which was pretty clear. Months latter I had a recurrence in my rectum. I'm now on Xeloda and Avastin.

    I get blood test 2-3 times a month and monitor CEA levels. I have had a few PET/CT scans. The Chemotherapy is controlling growth and spread. I will have another scan before the end of the year. Because of the Radiation marker used, you can only have so many PET/CT scans with contrast.

    As for my Neuropathy, I can't drive now but the feeling is returning. I had a little at first and got worse for two months before it started getting better. That was around a year and two months ago.

    Best of Luck to you 

  • SophDan2
    SophDan2 Member Posts: 150 Member
    Tunadog said:

    Post treatment testing

    After Oxaliplatin and Xeloda treatment I had a PET/CT which was pretty clear. Months latter I had a recurrence in my rectum. I'm now on Xeloda and Avastin.

    I get blood test 2-3 times a month and monitor CEA levels. I have had a few PET/CT scans. The Chemotherapy is controlling growth and spread. I will have another scan before the end of the year. Because of the Radiation marker used, you can only have so many PET/CT scans with contrast.

    As for my Neuropathy, I can't drive now but the feeling is returning. I had a little at first and got worse for two months before it started getting better. That was around a year and two months ago.

    Best of Luck to you 

    Thanks again Tunadog

    Thanks again Tunadog

  • SophDan2
    SophDan2 Member Posts: 150 Member

    Lowering the Oxy

    Your fortunate that they lowered it.  My doctor wouldn't lower it and she said it was only "listed" as a nuisance so she wouldn't do it and now my neuropathy is perment and now I'm on medication everyday because of it.  I'm glad that you are on top of things.  Wishing you the best.

    Kim

    Thanks Kim (my wife's name by the way)

    I'm glad my doctor was on top of my concerns. As I said, I have informed everyone involved with my teatment, right from day 1, my biggest concern was life long neuropathy. I am the kind of person that kn owledge is power. I have educated myself, all along, about what it is that I have , the treatments, the side effects and the percentages.

    Thanks again

  • SophDan2
    SophDan2 Member Posts: 150 Member
    aoccc2015 said:

    Had 12 Oxy and 6 months later

    Had 12 Oxy and 6 months later still feels like my hands and feet are asleep. I think it did some great work because after i dropped it from the pump/avastin trio, new things popped up. Never notice it while im working or walking but after walking for 9 hours my feet feel destroyed. At least the other stuff like cold sensitivity is gone. I doubt the feeling it ever come back but ill take it again if they let me,  I cant use my hands or feet dead anyway.

    Your statement reinforces my decision was the right one to make.

    Your statement reinforces my decision was the right one to make.

    Thanks again for your feedback

  • beaumontdave
    beaumontdave Member Posts: 1,223 Member
    edited October 2017 #15
    Hang in there Barry, two more

    Hang in there Barry, two more treatments and you get to go to Vegas[well I did anyway]. My feet felt numb/funny, my hands were extra clumsy, and any drink was ordered straight up, no ice. Still it was an exultant feeling, like I'd been set free. I'm glad I was in the moment, not knowing the hurdles to come. The neuropathy went away, as much as I can tell, and I did the full regime. By six months out, most of the nerve stuff had faded, but it was a year and a half before I felt that I was "normal" again, so don't be worried if it takes awhile to fade.....................................Dave

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    SophDan2 said:

    Thanks Kim (my wife's name by the way)

    I'm glad my doctor was on top of my concerns. As I said, I have informed everyone involved with my teatment, right from day 1, my biggest concern was life long neuropathy. I am the kind of person that kn owledge is power. I have educated myself, all along, about what it is that I have , the treatments, the side effects and the percentages.

    Thanks again

    Great Name - Kim

    Actually I'm named after Kim Novak who I've never seen in a movie but that is what my parents named me after.  Glad to hear your doctor listened to you.  I'm wishing my would have after telling her I'm not feeling well.  You are the ones that doctors need to listen to - mine just didn't.  Wishing you the best going forward.

    Kim

  • dancer2
    dancer2 Member Posts: 49
    edited October 2017 #17
    I had 9 treatments of

    I had 9 treatments of oxaliplatin with 5fu pump, leucovorin, and erbitux started on the third treatment....after the ox was dropped because of h/f neuropathy i had three more treatments with the rest for a total of 12. Then had to stop going to LA every other week and started again with the dr. i had before where i live. Only three weeks in between the time of stopping the la trip and getting treatment here, and now i have had three treatments of 5fu/erbitux and after the last treatment where the pump was used the doctor told me she was giving me a break from 5fu for six weeks and is giving me erbitux alone for the nx 3d treatments. Doc stopped the 5fu because of the neuropathy...I'm stage 4, mets to liver (2), some small ones in lungs and a couple of aortacaval lymph nodes glow......last pt showed nothing new, suv was significantly reduced in all areas yet  nothing has gone, only shrunk a weed bit....i was wondering how long they can keep you on the drugs they know can give you neuropathy...before going to LA I had 8 treatments with avastin, not sure what was in the pump folfox or folfiri, and that didn't do anything...good for me the doc in LA sent tissue from liver met to see what it reacted to and then i was given the immuno drug erbitux which did start things to shrink a bit. The surgeon remarked in my records after the pt scan before the last one that if the suv rate was reduced in all areas surgery on liver and nodes was viable but the once was agreeable and i have been wanting surgery, if for anything to get the crap out of me....the onco isn't on the surgery side either??? Right now i am tired of always hinting of surgery to the onco's and being told i am not a candidate that the chemo will get them..........how long does this go on? Anyone been in this kind of scenario? Not giving up, just need to know who has had what seems like never ending chemo?

  • Joan M
    Joan M Member Posts: 409 Member
    edited October 2017 #18
    I had 8 rounds of folfox then

    I had 8 rounds of folfox then went on maintainence chemo of Avastin and Xeloda for 13 months.  My oncologist said the xeloda isn't working anymore because the tumors in my lungs have grown.  He wants me to go in Folfiri for basically the rest of my life or until it stops working for me.  I had gall bladder problems the end of August but the surgeon didnt want to operate on me since I had been on AVastin for so long.  I had a gallbladder tube put in and no chemo for 2 months now.  I still have the tube in and need the gall bladder surgery.  I find out monday when the surgery will be performed, and go back on chemo after that heals. 

    Any side effects from the folfox went away after a couple months.  But the neuropathy can be long term for some people who are on it more than the 8 rounds.  That is what I was told so glad they stopped it at 8 for me.  

    Joan

  • Joan M
    Joan M Member Posts: 409 Member
    dancer2 said:

    I had 9 treatments of

    I had 9 treatments of oxaliplatin with 5fu pump, leucovorin, and erbitux started on the third treatment....after the ox was dropped because of h/f neuropathy i had three more treatments with the rest for a total of 12. Then had to stop going to LA every other week and started again with the dr. i had before where i live. Only three weeks in between the time of stopping the la trip and getting treatment here, and now i have had three treatments of 5fu/erbitux and after the last treatment where the pump was used the doctor told me she was giving me a break from 5fu for six weeks and is giving me erbitux alone for the nx 3d treatments. Doc stopped the 5fu because of the neuropathy...I'm stage 4, mets to liver (2), some small ones in lungs and a couple of aortacaval lymph nodes glow......last pt showed nothing new, suv was significantly reduced in all areas yet  nothing has gone, only shrunk a weed bit....i was wondering how long they can keep you on the drugs they know can give you neuropathy...before going to LA I had 8 treatments with avastin, not sure what was in the pump folfox or folfiri, and that didn't do anything...good for me the doc in LA sent tissue from liver met to see what it reacted to and then i was given the immuno drug erbitux which did start things to shrink a bit. The surgeon remarked in my records after the pt scan before the last one that if the suv rate was reduced in all areas surgery on liver and nodes was viable but the once was agreeable and i have been wanting surgery, if for anything to get the crap out of me....the onco isn't on the surgery side either??? Right now i am tired of always hinting of surgery to the onco's and being told i am not a candidate that the chemo will get them..........how long does this go on? Anyone been in this kind of scenario? Not giving up, just need to know who has had what seems like never ending chemo?

    Dancer, I've heard the same - no surgery for me either

    But I did have ablation on a couple tumors and also had the Y90 theraspheres on the left lobe of my liver.  Maybe you can ask your doctor about those procedures.