Folfox Again

damama24
damama24 Member Posts: 174 Member
Saw onc on wednesday to go over results of scan last friday. Again reults were a mixed bag. The pelvic mass shrank some but the mets to liver grew some. So it's back to folfox again. Have been on iriontecan and vectibix for the last year and it worked well for awhile but CEA has risen steadily for the last couple of months and then scan in Feb. showed slight growth and the last scan showed more growth. Onc feels the iriontecan no longer affective,so going to try flofox again. I was on folfox once before but only completed 6 rounds before onc changed chemo because I was having problems with folfox. I had terrible fatique, really bad neuropathy and weight loss. But onc wants to try it one more time with some added meds to help with those issues. Onc still wants to try chemo directly to liver but one tumor in liver is pretty big and would like it to shrink before trying. I'm kind of bummed about going back on folfox, I think I can handle all the side effects alright except for the sensitivity to cold. I hate that one, that and having that pump for 48 hours.( my kids had named the pump Ursela). So I guess Ursela will be moving back in for awhile. Oh well at least my hair will grow back in a little faster.I never did lose it while on folfox but the iriontecan sure made me shed.
I start back on folfox next wednesday. I'm going to enjoy all the cold drinks I can until then. Also the weight loss thing might be a blessing in disguise. I've gained 35 lbs in the last year and wouldn't mind if I got rid of most of it.
Deb

Comments

  • daBeachBum
    daBeachBum Member Posts: 164
    Hi Deb
    Deb,

    I'm sorry to hear the news wasn't as good as it might be. I'm glad your pelvic mass has improved.

    I did six treatments of Folfox before my doc chnaged things up with Avastin. I didn't have the same intensity of side effects you had, but I can sympathize with you about the "hot and cold tingles", buzzing fingers, and the need for naps. I have a love/hate relationship with the pump too. It makes getting cleaned up a drag, but I can't be mad since it saved my life. I guess we're "frenemies" :-)

    I hope this round is easier and that it yields amazing results for you!

    Take care,

    Ray
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    ask your onc about canadian clinical trial 4 neuropathy
    tried something similar myself.
    I hope your folfoxed not folfocked.
    Hugs.
    Pete
    ps so much can be done about all the side effects just search folfox here
  • ask your onc about canadian clinical trial 4 neuropathy
    tried something similar myself.
    I hope your folfoxed not folfocked.
    Hugs.
    Pete
    ps so much can be done about all the side effects just search folfox here

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  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    unknown said:

    This comment has been removed by the Moderator

    hi gracie
    what team work.

    You know the practical issue in the chemo wards that i picked up.
    Oh the cal mag adds an hour to the folfox infusion. So its a resource staff issue.
    Sad in a sense that our suffering side effects is such a low priority. You had to insist. You got your cal mag.

    I did not get it. I did it myself with supplements and then got my naturopath on board. Interesting i suspect simultaneous infusion maybe more effective. Remember the irony last folfox treatment the protocol was adopted here. Ah the joy of timing.

    Bit like 5fu better xeloda oral.

    Hugs.
    Pete
  • westie66
    westie66 Member Posts: 642
    unknown said:

    This comment has been removed by the Moderator

    Cal/Mag in Canada
    Hi: First I've heard of adding cal/mag to the oxiliplatin chemo. I'm starting it May 17 and so will definitely ask my oncologist to add it. However, I have to pay big bucks for the oxiliplatin as it is not covered in Ontario. Might be the same with the cal/mag.
    Cheryl
  • westie66 said:

    Cal/Mag in Canada
    Hi: First I've heard of adding cal/mag to the oxiliplatin chemo. I'm starting it May 17 and so will definitely ask my oncologist to add it. However, I have to pay big bucks for the oxiliplatin as it is not covered in Ontario. Might be the same with the cal/mag.
    Cheryl

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  • westie66
    westie66 Member Posts: 642
    unknown said:

    This comment has been removed by the Moderator

    Cal/Mag
    HI: Thanks, Graci. I can only ask but suspect here in Ontario it will cost. I'm sure not looking forward to the treatment as it sounds as everyone has had a rough go of it. The cisplatin/gemiticibine was really not a problem for me but the oxiliplatin/irenotican and 5FU sound just awful. I live alone and have a dog to walk so hope I may be one of the rare ones who don't get those horrible symptoms. Not sure what I'd do as I don't have family here. Can only try I guess.
    Cheryl