Oxaliplatin meltdown

cheryltaco
cheryltaco Member Posts: 39
edited March 2014 in Colorectal Cancer #1
Ok, I'm really struggling with the chemo drug Oxaliplatin. It didn't seem to bother me much the first time around but I guess it has a cumualitive effect and now I have so many awful symptoms I can barely tolerate it. I'm seriously thinking of telling my oncologist no more! I s there anyone else out there that has made the decision to call it quits on the chemo or has your doctor changed drugs? If so what were you placed on?

Comments

  • sladich
    sladich Member Posts: 429 Member
    #2
    I completed the 12 treatments of Folfox (oxaliplatin). It was hard. Can your onc reduce the dosage? Are you on Folfox 4 or Folfox 6?

    Debbie
  • jams67
    jams67 Member Posts: 925 Member
    #3
    Be sure to tell your onc about the problems you are having. I completed 11 of the 12 treatments, but I have permanant neuropathy in my hands and feet. When I mentioned the nuropathy to my onc she took me off of the chemo. I wish I had mentioned it sooner and maybe they could have at least reduced the doseage.
    Jo Ann
  • vinny3
    vinny3 Member Posts: 928 Member
    #4
    I stopped after the 9th of 12 planned cycles of Folfox due to the neuropathy. I still have a little bit of numbness in my fingertips and feet but it is not bad. It has been over a year since I last had chemo. Be sure to tell your onc. The dosage may be lowered or if it is too bad another drug may be considered.

    ****
  • cahalstead
    cahalstead Member Posts: 118
    #5
    Boy do I know what you're saying. I managed to get through 5 treatments, had too many side effects with the neuropathy. The numbness I could deal with it was the inability to control my legs. My brain wanted the legs to move but I had to stand up and tell them to move, balance was off and legs were really weak. My onc reduced the dosage but not much difference so he told me "no more". He said he wanted to kill the cancer--not me. I did the 5fu for the rest of the treatments (12). As he said, we don't know, maybe we only need 5 to do the trick. Be real careful with the oxy, it's tough!!!

    Char
  • rmap59
    rmap59 Member Posts: 266
    #6
    Hi Cheryl,
    I feel your pain. I took oxy 200mg for four treatments. After the first I was ready to quit but when I told my onc he said next time we will take more time infusing it through the IV. So instead of 2 hours, he made it 3 hours. That helped a lot, it still was rough but I was lucky to just have 4, I also took xeloda for 12 weeks which has its own set of side effects. My onc nurses cheered me on and told me what good medicine it was so somehow I continued on, however had to hire an accupuncturist for the neuropathy and headaches, it worked. Drank as much water as I could hold and tried to walk when I could. I was also fortunate that I did not have a full time job, just one or two days a week and some weeks none. Hang in there if you can and let the onc nurses know what happens, dont be shy to call when you dont understand something or you have pain and discomfort. At one time I was taking 17 meds a day for the pain and discomfort.

    Trust in the Lord, Robin
  • claud1951
    claud1951 Member Posts: 424 Member
    #7
    Cheryl,

    I hear ya! I was on that for only 3 or 4 treatments and had to get off. Told them of all the side effects (I was also on Xeloda, like Robin).

    Onc put me on Camptosar/Irinotecan for the IV then the 5FU pump. That cocktail worked for me.
    I don't think you are ever without side effects but this was one I could handle much better.

    Two weeks ago, found out that I am now, NED!

    Good luck and let the Nurses/Onc know what you are going through.

    Claudia
  • kirsten1
    kirsten1 Member Posts: 23
    #8
    I called it quits after 1 treatment!!! I was soooo sick with so many side effects. I was convinced to be admitted every other week to have IV hydration and IV anti-nausea and antianxiety drugs around the clock. Sounds extreme, but am proud to say I got through 8 rounds successfully!!! Finished this past October... I have to admit I was kicking and crying every step of the way. The drugs really do effect every one so differently.
  • hoagiemom
    hoagiemom Member Posts: 87 Member
    #9
    kirsten1 said:

    I called it quits after 1 treatment!!! I was soooo sick with so many side effects. I was convinced to be admitted every other week to have IV hydration and IV anti-nausea and antianxiety drugs around the clock. Sounds extreme, but am proud to say I got through 8 rounds successfully!!! Finished this past October... I have to admit I was kicking and crying every step of the way. The drugs really do effect every one so differently.

    I feel your pain. The first few weren't bad but as the treatment went on the harder it got. I made it with 10 cycles of the Oxy and finished with 5fu for my last 2. I still have neuropathy but it is workable. I agree with the other stay strong. I feel we have to fight this aggressively
    before you know it this will be over.

    Michelle
  • changing
    changing Member Posts: 134
    #10
    same here! Had to have doses decreased after 2 treatments. Finished 12 but with lower doses and lots of anti nausea meds.
  • KierstenRx
    KierstenRx Member Posts: 249
    #11
    Agree with everyone else here that Oxaliplatin is tough. Had a 25% dose reduction after my first treatment. Completed all 8 treatments. I had no tingling in my feet only my hands during treatment. However, the neuropathy became very bad in my feet about 3 weeks after completion. I would recommend talking over the issues with your oncologist. Better to discuss things now before it gets worse. Best of luck with you and I'll keep you in my thoughts.

    Kiersten
  • m120407
    m120407 Member Posts: 8
    #12
    I understand completely. In 2005 and 2006 I had a total of 18 treatments. I had to learn to drink my water at room temperature and to wear gloves whenever I went into the refrigerator or freezer. The worst side effect is the neuropathy that I still have! You should definitely discuss with your Oncologist as he/she can explain the pros and cons of quitting.
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #13
    Hi Cheryl, Am sorry you are experiencing such side effects. How many treatments did you have previously with the oxal? We were told by hubby's onc that usually people experience cumulative side effects by treatment 9 or 10 and dosages usually need to be adjusted or discontinued. He completed 9 cycles and is curently NED after liver resection.(along with xeloda and avastin) Definately check with your onc. There are other regimens as Claud mentioned. Also, really push those liquids after treatment. It really helps flush your system. Good luck and God Bless
    Diane
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #14
    hi cheryl,

    There is a website you can go to for information:

    www.cancerdecisions.com

    Punch in oxaliplatin in the "search" and a whole bunch of articles and research of options pops up.

    I hope this helps.

    peace, emily
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #15
    Hi Cheryl,

    There is some things you should take for the neuropathy now before it gets worse. I wish I had known. See what the doc thinks of B complex for the neuropathy. Oxiplatin is hard. I did 9/12 folfox treatments and had to stop because of the neuropathy and it through my blood sugars out of wack horrible. Also someone mentioned the camptosar. That is almost the same type of drug as the Oxiplatin but not so much neuropathy I believe. Ask your onc about that too. Don't just suffer. Please ask your onc and the nurses. They are all so helpful. HUGS.

    Lisa F.
  • NWGirl
    NWGirl Member Posts: 122 Member
    #16
    You'll get a laugh out of this...I read all these posts and thought WOW!! That's an awful drug, thank heavens I don't have that in my chemo cocktail. Hey, what am I taking anyway? So I pulled out the brochures from my doctor...oh crap, I AM TAKING THIS DRUG!!! I've only had 2 treatments (2nd being today). The first treatment I was nauseas for 8 days. Neuropathy wasn't bad, but for now it seems to be hitting my tongue (of all places) but not much else (yet).

    I'm trying Emend for the nausea and so far so good. I'm crossing my fingers on that.

    Thank you for all the posts, I will monitor this one really carefully and keep my doctor/nurses informed of any and all problems. I'm fortunate in that my chemo doctor and nurses are fabulous and drill me every time I come in on what's going on and ask me tons of questions about potential side effects.
  • cheryltaco
    cheryltaco Member Posts: 39
    #17
    NWGirl said:

    You'll get a laugh out of this...I read all these posts and thought WOW!! That's an awful drug, thank heavens I don't have that in my chemo cocktail. Hey, what am I taking anyway? So I pulled out the brochures from my doctor...oh crap, I AM TAKING THIS DRUG!!! I've only had 2 treatments (2nd being today). The first treatment I was nauseas for 8 days. Neuropathy wasn't bad, but for now it seems to be hitting my tongue (of all places) but not much else (yet).

    I'm trying Emend for the nausea and so far so good. I'm crossing my fingers on that.

    Thank you for all the posts, I will monitor this one really carefully and keep my doctor/nurses informed of any and all problems. I'm fortunate in that my chemo doctor and nurses are fabulous and drill me every time I come in on what's going on and ask me tons of questions about potential side effects.

    Thanks so much for all your posts. NWGirl, I didn't have many symptoms until about the 4th or 5th time. Now, I have terrible neuropathy, nausea, and bathroom issues (which can be controlled with meds). The worst part is there is a feeling of pressure on my chest,and I have difficulty breathing at times. For a day or two after treatment I have difficulty forming words, and walking. My lips swell, and my throat feels as though it is closing, and I have a hard time drinking liquids and staying hydrated. All these things are a real challenge to me, especially since I teach fitness classes on a daily basis!!! I haven't found anyone that has experienced the more extreme symptoms which leads me to believe I may be having some sort of allergic reaction to the drug. Never the less, I have decided enough is enough (thanks to 2bhealed for the helpful website). I am open to trying something new, so we will see what the onc says. Blessings to all, Cheryl
  • NWGirl
    NWGirl Member Posts: 122 Member
    #18
    cheryltaco said:

    Thanks so much for all your posts. NWGirl, I didn't have many symptoms until about the 4th or 5th time. Now, I have terrible neuropathy, nausea, and bathroom issues (which can be controlled with meds). The worst part is there is a feeling of pressure on my chest,and I have difficulty breathing at times. For a day or two after treatment I have difficulty forming words, and walking. My lips swell, and my throat feels as though it is closing, and I have a hard time drinking liquids and staying hydrated. All these things are a real challenge to me, especially since I teach fitness classes on a daily basis!!! I haven't found anyone that has experienced the more extreme symptoms which leads me to believe I may be having some sort of allergic reaction to the drug. Never the less, I have decided enough is enough (thanks to 2bhealed for the helpful website). I am open to trying something new, so we will see what the onc says. Blessings to all, Cheryl

    Those types of symptoms are frightening. Please keep us posted as to what your doctor says and your future treatment. With so many of us on this drug, I'm sure many people will benefit from your sharing these experiences with us. In some respects I'm glad I have an ileostomy during chemo - it doesn't hurt at all coming out. Gross, but no pain. I had chemo yesterday and am using 'Emend' for nausea - it is making a night/day difference from my first treatment. So far no nausea - what a blessing. But my eyes are wide open and I know these things can get worse as the treatments continue. I wish you all the best in future treatments - it doesn't seem it could get much worse!!! My prayers are with you.

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