No more Oxi!!

P_I_T_A
P_I_T_A Member Posts: 133
edited March 2014 in Colorectal Cancer #1
Had the worst Tx week to date. Took over a week to rebound. Constant tingling in my fingers and just all of a sudden started some on the bottoms of my feet. Convinced onc to drop the Oxi. He said it was a reasonable request. Being NED before Tx and only 1 lymph involvement, he said chances are I've already reaped the benefit from the previous Oxi treatments. I wanted to throw everything I could at it, but I just can't take anymore or want to risk permenant nerve damage. Onc said there's no real studies showing the effectiveness of the full 12 doses compared to shorter ones. Wonder why that is?? Anyway, 3 more Tx and no Oxi, there is a light at the end of the tunnel!!

-DJ

Comments

  • coloCan
    coloCan Member Posts: 1,944 Member
    You'll find as I did, that chemo is much easier to deal with
    without the oxy, which also did a number on me, both pre- and post- operation.First time around, it didn't really get to me til last scheduled dose; this time it almost did me in on 4th dose. Onc agreed with me to delete it from Folfox as I was /(am)terrified of the uncontrollable shaking, while alternating between freezing and burning up, with cold and hot sweats. Don't know what to call this effect but thats what did me in, not the fatigue,neuropathy, loss of appetite,aversion to things cold,etc.
    Without the oxy,I find the chemo much easier to take, tho I'm wondering if I should have it (oxy)added to final two doses under assumption it won't hit me after only two more doses.
    I too have three more doses to go. Wish you best of results with your treatment(s) its been a nasty battle, hasn't it?.......Steve
  • Julie 44
    Julie 44 Member Posts: 476 Member
    Hey
    DJ,
    I don't blame you one bit for stopping the Oxi...Nasty stuff...I had my last Oxi treatment in April and still have feet problems..Numbness and there always feels like my sock is bunched up by my toes but its not. I also have terrible heel pain I have been put on vit.B6 and gabaplentin(something like that) and none of it has helped....So you did the smart thing wish I had done that...Now this time I am not on Oxi. Which I guess is a day late and a dollar short but...Good luck with the rest of your treatments....JULIE
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    No more oxi for me either
    I started getting neuropathy after first treatment of Folfox. Onc went down on dose 4th go around. When I went in for 6th round my left hand was completely involved and both legs & feet. She said "No more!" She explained that for stage II cancer she just couldn't put me through possible permanent disability.I started Xeloda this past Tuesday and so far it is feeling very, very mild compared to Folfox.The neuropathy is still bad after a week off of all chemo and then 3 days of Xeloda but I believe she told me it could take quite awhile for it to go away , if it does go away.

    Had my port taken out today.Glad that little alien is gone & have my fingers crossed that I'll never need another one.

    I'm glad that you were able to make it farther into the treatment than I did. I felt like such a failure that day. I had been so determined to go all 12 rounds no matter what....but I was starting to think about getting a cane or walker. I think my doc was smarter than me on this call.

    Best wishes to you.

    -Pat
  • victory10
    victory10 Member Posts: 75
    lower dose of oxi
    My oncologist lowered my dose for the 6th round and it was like the first found. just really tired and a little nuropothy but not nearly as bad. I couldn't even drink room temperature water so I am glad he agreed to lower my dose! I had 2 out of 37 lymph nodes positive which I really believe that I don't need all 12 treatments but I am just submitting to the process and asking God to get me through it with no negative long term side effects. So far HE is honoring my request :)
  • Crow71
    Crow71 Member Posts: 679 Member
    victory10 said:

    lower dose of oxi
    My oncologist lowered my dose for the 6th round and it was like the first found. just really tired and a little nuropothy but not nearly as bad. I couldn't even drink room temperature water so I am glad he agreed to lower my dose! I had 2 out of 37 lymph nodes positive which I really believe that I don't need all 12 treatments but I am just submitting to the process and asking God to get me through it with no negative long term side effects. So far HE is honoring my request :)

    My Onc also reduced the
    My Onc also reduced the dosage after the 6th treatment. I was able to get through all 12 treatments, but just barely. The last one really knocked me for a loop. I may have Oxy again at some point, but I hope not. - Roger
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    I had my 5-FU reduced by 20% Tx#8. I had my oyx reduced this time Tx#9, by 20%. The allergic reactions are less, and the neuropathy isn't as bad this time. I was disconnected this afternoon.

    I ALWAYS take over a week to rebound - even with my Neuopgen shots. So I don't consider I'm done with 9 yet. Towards the end of next week I will say I am 3/4 done, 9 down and 3 to go. But I have to get through some really bad days first.

    I am stage IIIc at the least, and possibly Stage IV - gotta throw everything at it I can. My oncologist agreed to reductions and then each time we'll reassess. If the neuropathy doesn't get any worse than it is today (disconnect day), then I'll get it again next Tx. If it gets as bad or worse as last time, I'm stopping it. I have been in remission for RSD/CRPS for over a year, but the neuropathy from oxy seems to be triggering it again. Now that is scary for me.

    My onc says the studies show the most benefit from oxy is the first 8 Tx if you can tough them out at full dose. The additional benefit from the last 4 is a balancing act against side effects.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    my oncologist said...
    I stopped oxi at session 7. Research indicates eight sessions to be optimal and the ones after that have shown no significant benefit. By missing the last session, statistically I lost something like .7% on the five year charts. I still suffer with significant neuropathy, but I am alive and doing pretty well.

    The end of the treatment deserves a celebration. Give yourself a week or so to recoup and then invite a bunch of friends over and party!
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Jaylo969 said:

    No more oxi for me either
    I started getting neuropathy after first treatment of Folfox. Onc went down on dose 4th go around. When I went in for 6th round my left hand was completely involved and both legs & feet. She said "No more!" She explained that for stage II cancer she just couldn't put me through possible permanent disability.I started Xeloda this past Tuesday and so far it is feeling very, very mild compared to Folfox.The neuropathy is still bad after a week off of all chemo and then 3 days of Xeloda but I believe she told me it could take quite awhile for it to go away , if it does go away.

    Had my port taken out today.Glad that little alien is gone & have my fingers crossed that I'll never need another one.

    I'm glad that you were able to make it farther into the treatment than I did. I felt like such a failure that day. I had been so determined to go all 12 rounds no matter what....but I was starting to think about getting a cane or walker. I think my doc was smarter than me on this call.

    Best wishes to you.

    -Pat

    port
    You had your port taken out - congrats on your first day of FREEDOM! Mine was removed last week.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member

    port
    You had your port taken out - congrats on your first day of FREEDOM! Mine was removed last week.

    Rick
    Was it more painful having it removed than having it put in for you? I feel like they took a shovel and dug my port out!Getting ready right now to take the big bandage off and see what they have done.I didn't use pain meds when I had it put in but I sure have been doing the hydrocodone dance this weekend!

    Congrats on having yours removed.One more milestone accomplished.

    -Pat