Started Folfox for the second time today

damama24
damama24 Member Posts: 174 Member
in Colorectal Cancer #1
Well started back on folfox + avastin today. Everything went smoothly, no problems. But about half way through oxi infusion I could feel the cold sensitivity starting, It wasn't painful or anything could just feel the subtle change as I was drinking cold water. I did get the cal/mag infusion both before and after the oxi.I also take some supplements that may help with both cold sensitivity and neuropathy. Came home with all the goodies to disconnect myself from the pump on friday, am so glad the nurses trained me on how to do it and they are OK with me doing it myself.Saves me an hours drive to the treatment center.
I'm just hoping I can stay with the Folfox longer this time. I only made it 6 rounds the first time before onc was concerned about the side effects I was having and switched me to Iriontecan and vectibix. I did well on that combo for about 10 months when scans and rising CEA showed it was no longer affective. So back to Folfox, it worked well while I was on it the first time. Hoping it works well again and I have fewer issues.
Hope everyone is having a good day,weather here is finally warming up and I'm loving it.
Deb

Comments

  • janie1
    janie1 Member Posts: 753 Member
    #2
    Hi Deb. The first time with
    Hi Deb. The first time with the Folfox, what other side effects were you having other than the cold sensitivity, that he felt it necessary to stop the folfox?
  • damama24
    damama24 Member Posts: 174 Member
    #3
    janie1 said:

    Hi Deb. The first time with
    Hi Deb. The first time with the Folfox, what other side effects were you having other than the cold sensitivity, that he felt it necessary to stop the folfox?

    Folfox side effects
    The biggest side effect I experienced the first time on folfox was neuropathy so bad I was losing the ability to walk. My feet and lower legs became so numb I could almost no longer lift my feet. Plus I had major fatique that I had trouble with everyday self care. My onc felt that the oxi was to much for me even after reducing it. I did stay on the rest of the folfox combo( minus the oxi) and started feeling much better. But my cancer showed progression and onc wanted to try different chemo instead of going back to the oxi. The new chemo worked great for awhile but once again cancer showed progression. It was decided by me and onc to give the folfox another try. Hoping the extra meds and supplements help minimize the side effects this time.
    Deb
  • luvmum
    luvmum Member Posts: 457 Member
    #4
    Dear Deb
    I hope you are coping the Folfox + avastin well this time. My mum started Folfox + avastin again 2 days ago. She is very tired and also has cold sensitive. it's very hot here but she is wearing long sleeves and gloves =( She also has running nose (not sure if this is from this treatment or not). Today is only the 2nd day of her treatment (she is still having the 5-FU infusion with her), she has lost her appetite already!
    Her hands turn rough too... I try to put as much hand cream and foot cream on her as possible.
    I hope you and my mum will respond well to this regimen!
    Love Dora
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #5
    damama24 said:

    Folfox side effects
    The biggest side effect I experienced the first time on folfox was neuropathy so bad I was losing the ability to walk. My feet and lower legs became so numb I could almost no longer lift my feet. Plus I had major fatique that I had trouble with everyday self care. My onc felt that the oxi was to much for me even after reducing it. I did stay on the rest of the folfox combo( minus the oxi) and started feeling much better. But my cancer showed progression and onc wanted to try different chemo instead of going back to the oxi. The new chemo worked great for awhile but once again cancer showed progression. It was decided by me and onc to give the folfox another try. Hoping the extra meds and supplements help minimize the side effects this time.
    Deb

    i used milk thistle during my folfox
    hi deb,
    this helped my liver. doctor lenz seemed ok with it, some oncs are some not.
    just goodluck this time on folfox.
    hugs,
    pete
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #6
    damama24 said:

    Folfox side effects
    The biggest side effect I experienced the first time on folfox was neuropathy so bad I was losing the ability to walk. My feet and lower legs became so numb I could almost no longer lift my feet. Plus I had major fatique that I had trouble with everyday self care. My onc felt that the oxi was to much for me even after reducing it. I did stay on the rest of the folfox combo( minus the oxi) and started feeling much better. But my cancer showed progression and onc wanted to try different chemo instead of going back to the oxi. The new chemo worked great for awhile but once again cancer showed progression. It was decided by me and onc to give the folfox another try. Hoping the extra meds and supplements help minimize the side effects this time.
    Deb

    My cold touch sensitivity
    My cold touch sensitivity went away about 1 month after stopping FolFox. (The burning feeling when touching something cold.) The lips tingeling went away also.

    I still have difficulties getting physically warm. The Neuropathy is still bad. I saw my Onc yesterday and he told me it will take months for the neuropathy to go away. My feet feel asleep and my hands are numb.

    On the positive, my appetite is back, and foods are tasting the way they used to! The bloating is starting to go away also! woo hoo
    Best Always, mike

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