O.K. Semi-colon's, I need your help

tkd3g
tkd3g Member Posts: 767
edited March 2014 in Colorectal Cancer #1
I am having a hell of a time with this oxy/5FU/Leuc treatment. I have only had 3 treatments with my 4th coming up on Monday.

Except for the nausea, I have gotten every side effect you can get ( and a couple the nurses haven't heard of ).

They stay with me longer and get worse with each treatment.

I am seriously thinking that I may need to switch to a different drug. Those of you here don't seem to be having much of a problem with this combination of drugs. I wonder if I am not hyper-sensitive to them? I sailed thru 6 weeks of a continuous 5FU regament. Very few side effects at all.

I will be discussing this with the oncologist Monday before treatment. I am the last person that would say stop the drugs. I hold out as long as possible. ( She even remarked that she was very surprised that they never had to lower the dose or stop the 5FU treatments)

I guess what I need from you guys and gals is a bit of feedback. Particularly those that maybe had to stop this particular treatment. What other options do I have, in terms of drugs? Anyone have the same experience ( many many side effects?) They are tolerable right now, but definately getting worse each time.

To add, they told me I am on a lower than usual dose because they didn't feel I needed the higher dose. I guess this is because I am stage 3 and had extremely good results with pre-surgical chemoradiation and the surgery.

Any thoughts? Comments?

I'm not a woos! I fight really hard! Everyone tells me I am so strong, yet I feel somewhat like a failure here. I mean, I could probably suffer thru this mess. I guess it comes down to the fact that I am scared to have another treatment. What is going to happen? Do I wait till my throat closes and I can't breathe anymore? (sarcasim) I am so confused. I don't want to give up, but I don't think I can take too much more of this.

Sorry to ramble. If anyone has any words of advice, I would really appreciate them.

Thank you all. I am so happy to have found you all.

Barb

Comments

  • jsabol
    jsabol Member Posts: 1,145 Member
    #2
    Hi Barb, So sorry that you have to go through this. My treatment for early stage III was just 5FU and leuco, but I did reach a point near the end of my treaments where I had some really nasty side effects, particularly diarrhea. They spaced out 2 of my treaments, with my onc assuring me that the extra week between doses did not affect the end results.
    Keep up the discussion with your onc. Some side effects may be "just" a nuisance, but some may be dangerous from the toxicity in your system. Hope they can figure this out, and get you back on track.
    No one here would ever mistake you for a "woos". Hang in there! Judy
  • spongebob
    spongebob Member Posts: 2,565 Member
    #3
    Ahoy, Barb -

    Just came in from a "Soogie Party" - that's where we getthe entire crew together (a bunch of in shape, shirtless, 20-something guys Andrea) and break out the fire hoses and buckets of soap (bio-degradable, Emily) and wash all the salt off the ship. We spend as much time hosing each other down as we do hosing the ship down. It's calm (for right now, jeanne will be marching past us tomorrow night), sunny and very pleasant.

    OK... now that I've taken your mind off your symptoms...

    You know Barb, chemo treats everyone differently - Look at Bob bsrules. Talk about an acute reaction. It builds up in our system so the effects are cummulative. It's important to be willing to say "enough". You gotta have some quality with that life. You're on a low dose - you had good response to the 5FU/Leu regime. That kicks sopme people butts - so you know you're not a wus.

    There are other regimes out there. You willfind one that doesn't have such a nasty effect on your body. I say take it as long as you can take it and then lookfor something else. The meds will still be in your system working even after you stop.

    Hang in there and know we're here for you.

    Now, go have a good cup o' coffee!

    - "George" (you know what I mean!)
  • allsmiles
    allsmiles Member Posts: 25
    #4
    Barb,
    I know you are anything but a Woos! My poor hubby got through 6 weeks of oxy/5fu/leuc prior to surgery. After reecovering from surgery he had a terrible time with the chemo. Only got through 8 cycles and I mean he barely got through 8 of the 12. He had terrible symptoms...just too much toxicity for his system. I wish they had switched. Definitely not to scare you but his came back while on this chemo regime. Insist on scans and as we all do...do your homework. Best of luck!
    Grace
  • rwkeach
    rwkeach Member Posts: 17
    #5
    Hi Barb,
    Thought I should add my 2 cents worth to your post. I was on the same regimen, 5FU, Leucovorin and Oxaliplatin. And like you each time the side effects got a little worse, to the point where my husband told me that I should quit Chemo, he said the cure was killing me.
    During my 10th treatment I had a violent allergic reaction (Hives, throat swelling shut, couldn't breathe etc) It took the doctor and about 5 nurses quite a while to set things straight. Of course now I wonder if my previous difficulties were a precursor for this allergic reaction.
    I am now on 5FU, Leucovorin and Camptosar (CPT11). What a difference!!! I feel like I want to live! I'm actually making plans for a cancer free future, where before I wasn't able to even think about that.
    So check with your oncologist and ask about allergies, mine was totally surprised that I would have a reaction this late in the game.
    Hope all goes well with you.
    Regine
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
    Hi Barb,
    I didn't have the oxy-combo, so I can't help you out there. But let me add my two-cents worth. My first chemo involved 5FU and levamisole. I had an allergic reaction to the levamisole (just a skin rash, but my onc told me if I'd continued, I could have gone into aniphlactic (sp?) shock - and I can never have it again. He switched me to 5FU alone, and then later to 5FU/leuc. He was able to quote me statistics showing it wouldn't make a significant difference for someone in my situation. What I took away from the experience was this: there are always other options available -- and your drs. shd be able to discuss these with you. Reactions to the various chemo drugs and cocktails seem quite idiosyncratic.... I know you are a tough cookie!
    Sending best wishes your way,
    Tara
  • jrasnic
    jrasnic Member Posts: 14
    #7
    Hi Barb,
    My husband just finished the folfox treatment about a month ago. He claims that it is the toughest thing he has ever done. It is so true that every person has different reactions to the drugs -- and I can't tell you how many times I read this message board and heard about people sailing through the oxal. treatment and thought to myself -- Wow, they sure are having an easier time than my husband -- what's that about? His first treatment wasn't too bad -- but it just got worse and worse from there. Every treatment would keep him down for about five days. Some days he would just cry because every inch of his body hurt so bad. After 10 treatments they had to pull him off of it because of serious neuropathy. They then told him that 10 was the most anyone had ever completed at our Cancercare. It is a tough drug!! Don't let anyone pretend it's not. I just wanted you to know that you are not alone in suffering through the treatments. But all in all -- Mike feels like the suffering was worth it. But at the same time, do talk to your doctor about treatment options. Again, I just wanted you to know that you're not crazy -- it's some bad stuff!

    All my best,
    Jackie
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #8
    jrasnic said:

    Hi Barb,
    My husband just finished the folfox treatment about a month ago. He claims that it is the toughest thing he has ever done. It is so true that every person has different reactions to the drugs -- and I can't tell you how many times I read this message board and heard about people sailing through the oxal. treatment and thought to myself -- Wow, they sure are having an easier time than my husband -- what's that about? His first treatment wasn't too bad -- but it just got worse and worse from there. Every treatment would keep him down for about five days. Some days he would just cry because every inch of his body hurt so bad. After 10 treatments they had to pull him off of it because of serious neuropathy. They then told him that 10 was the most anyone had ever completed at our Cancercare. It is a tough drug!! Don't let anyone pretend it's not. I just wanted you to know that you are not alone in suffering through the treatments. But all in all -- Mike feels like the suffering was worth it. But at the same time, do talk to your doctor about treatment options. Again, I just wanted you to know that you're not crazy -- it's some bad stuff!

    All my best,
    Jackie

    Hiya Barb--wow!--you got thru the 5fu/leuc. ok!
    I had a rotten time on it and the last 2 months I had some bad crying sessions. I really didn't want to do those last 2 months, believe me!(True!--you oughta be calling ME a woos!)
    So I was basically like Judy--some pretty bad reactions just on plain old 5fu/leuc. It just goes to show how varied reactions are Barb. Hope the guys at the clinic work this out for you 'cos the oxy part doesn't seem to like yah!
    Our best from oz--luv n huggs--kanga n Jen
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #9
    I can feel your pain. Last year I tolerasted my pre-op 5FU chemo and rad. fine. The post-op 5FU and leukovorin was another story. I received only 4 out of the 12 treatments. I had diarrhea so bad that i was in the hospital on TPN (IV nutrition) for 3 weeks and had to stop the treatments. I was very upset, but was told the chemo can kill you. It has been 15 months since my surgery and so far no sign of it coming back. Good luck with what you decide.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #10
    Hi Barbara,

    I finished my last Folfox treatment in July and I know how each one gets a little tougher.

    My liver levels were affected around the 7th or 8th treatment, and my oncologist started giving me the oxaliplatin over three hours rather than two. It made a world of difference for me. Perhaps there are some slight variations in administration of these medicines that can minimize your side effect.

    We are thinking of you. Let of know.

    Kay
  • cmfarr
    cmfarr Member Posts: 3
    #11
    i'm on the same treatment :(.... not fun! ive had nausea, sever headaches, and often have been rejected for treatment because of low platelets but i've completed 10 cycles and am now doing radiation with 5fu infusion. i've tried to convince my oncologist to lighten up but because i had so many lymph nodes involved he refused. apparently everyone reacts very differently and it is wise to take the most agressive approch tolorable (i hope!). that which you survive makes you stronger.

    all the best

    cathleen

Discussion Boards