Question About Herceptin

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kellysblevins
kellysblevins Member Posts: 11

I just had my first round of Herceptin after being part of the ALLTO trial that failed (I was in the 25% of people who received Tykerb alone in this trial). My last chemo was 2 years ago and my last Tykerb dose was almost 18 months ago so the Herceptin I am now getting is a "stand-alone." 

My question is: do the side effects get any easier or do you find them to be the same with each round? Last Tuesday was my first round and I have had nausea, vomiting, extreme fatigue, and decreased appetite since getting the med. My AC and Taxol were hard, but I never got sick to my stomach and the fatigue did not knock me down like this has. I'm just wondering what I should expect from here on out.

Thanks gals! 

Comments

  • turtle108
    turtle108 Member Posts: 12
    edited September 2011

    the first time is the worst, for sure- you may feel ill the second time too, but after that there are not many side effects at all- runny nose- maybe slight fatigue, but nothing too bad- I am able to carry on with my life just fine immediately after the Herceptin infusion-  I think that my reaction is pretty typical- good luck to you! 

  • pejkug3
    pejkug3 Member Posts: 902
    edited September 2011
    I can't compare my first few rounds since they were done with chemo.  But I'm on #11 (had it last week) and my main SE is diarrhea and possibly some minor joint stiffness.

    Your first one is a loading dose.  Are you on an every three weeks schedule or a aweekly schedule?
  • ma111
    ma111 Member Posts: 1,376
    edited September 2011

    I agree with the above about the loading dose. I am on my 2nd round of Herceptin and notice more SE from the chemo. Also, have your onc call in some meds to treat the vomiting and diarrhea. That will be very helpful.

  • shadow2356
    shadow2356 Member Posts: 393
    edited September 2011

    The dose will go down. I finished my year of herceptin in Nov, 2010. I had the most side effects the first few treatments. I then had bone and joint pain. It was uncomfotable but I could still do my normal activities. I had a runny nose most of the time as well. Once I finished it took a number of months, but every side effect is gone. There were times when I considered stopping herceptin while I was doing it. I did not stop and I am very happy I did not. I think when you look back it doesn't seem so bad and it does go a lot faster than you think.

    Good luck and I wish you strength in your fight.

  • kellysblevins
    kellysblevins Member Posts: 11
    edited September 2011

    Thanks ladies! I was so sick with nausea and vomiting for the first 7 days after treatment that I ended up getting IVF twice back at the hospital. Nothing was staying down, but today has been different. They finally figured out the right "cocktail" of nausea meds for me and I haven't vomited since last night! Still quesy, but I can take quesy. I wear a patch called Scopalomine behind my ear now, take Compazine and Ativan for the nausea during the day if needed and Phenergan suppository at night if needed. The bone pain, chills, and achiness stopped on the third day after treatment.

    My doctor did say if I have it this bad the next time that we will consider cutting the dose in half and me coming every 2 weeks instead of every 3.  

  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2011

    I guess that I am very lucky since I have been on Herceptin for 7 years with no problems.

    Herceptin and Gemzar put my liver mets in remission.  And Herceptin alone kept me in remission for 6 years.

    Now I have an active lymph node behind my sternum.  Will get a PET scan next week to see if it has spread.

    Herceptin is a wonder drug and I hope it gets easier for you.

    Denise

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