Tykerb experience?

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Penny0607
Penny0607 Member Posts: 4
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi. Who out there is taking Tykerb? Are you on it alone, or with Xoloda? What are your symptoms? Side effects? I'm switching from Herceptin (with a Gemzar chaser) to Tykerb alone. My onc is concerned about weight loss, but I'm hoping this effect will be less troublesome than the nausea the Gemzar caused. Thanks for your help on this.

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  • my2boys
    my2boys Member Posts: 339
    edited July 2010

    Hi Penny,

    I am on Tykerb.....750 mg. per day.  I am also in the sixth week of a twelve week Taxol/Herceptin regimen.  I just completed A/C X4.

    The only side effect I have with the Tykerb is diarreha.  I need to take lomodil to manage it.  As a matter of fact, I am being reduced to 500 mg. per day until my 12 weeks of Taxol are done, this is so that the diarreha will be more manageable.  There has been little or no weight loss with Tykerb.  The only symptom is the nasty diarreha.....not painful, just annoying. 

    I am hoping that once I finish the Taxol, they will up my dosage to 1,000 mg. of Tykerb per day for the remainder of my year.  I will continue on Tykerb/Herceptin for a year and then just Herceptin for an indefinite time.  My body should eventually adjust to Tykerb and I will be home free.

    Good luck with the Tykerb and rest assured that if you have severe diarreha, they will play with the dosages until they get it right.  Good luck.

    Anne

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  • lovetosail
    lovetosail Member Posts: 544
    edited July 2010

    I did Tykerb for 18 weeks.  diarrhea was my main complaint - for me manageable with immodium.  I also got a rash - looked like pimples all over my chin and forehead.  It all stopped within a week of going off the drug.

    Good luck!

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited August 2013

    I am taking Tykerb alone and participating in a clinical trial that investigates how women with early breast cancer respond to Tykerb alone as opposed to Herceptin either by itself or in the combination of Herceptin and Tykerb. My doctors think that Tykerb might even replace Herceptin eventually, as it is able to enter the brain and treat it as well. I started chemo last month and had my second chemo today. I started taking Tykerb three weeks ago with chemo ( i have 4 more chemo cycles) and will  go on taking Tykerb for a year. Same side effects: diarrhea, rash and lots of pimples. I haven't had such painful pimples since I was a teenager. But whatever it takes, right? Pimples will go away, hair will grow back, and though, my right breast is gone, all I want is my life back, so that I can at last go back to my studies and finish my master's degree....

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  • Cricketlynn
    Cricketlynn Member Posts: 7
    edited May 2013

    Hi. I'am on tykerb only. I have stage 4 with liver mets. I used to be on the herceptin alone, but ended up with a bad rash. I became allergic to it. I'am on 1000mgs of tykerb daily. The only problem so far is a small rash on my hands. I just started it 4 weeks ago. They slowly started it by gradually working up to 1000 mgs. I get my blood tests Friday to see if its helping. I already started feeling better, 2 days after starting in 1000 mgs. But I just keep losing weight...that's my problem. I have a great appetite too! Oh we'll, maybe things will get better in time. I hope you do we'll on the tykerb. It is hard to tell what side affects we will have, all of our body's handle medicines differently. Good luck! And I will say a pray for you.

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  • nickythebean
    nickythebean Member Posts: 50
    edited May 2013

    I was on 1000 mg Tykerb, Herceptin, and Taxol for neo adjuvant chemo. Tykerb caused horrible and embarrassing acne-like pimples, and severe diarrhea. I started having a LOT of bright red blood in my stools, and ended up being hospitalized for a week with ischemic colitis. They immediately took me off of Tykerb and it cleared up. I finished 8 of the 12 weeks they had planned for me. I was very disappointed because I really felt like the Tykerb was a great drug. I was willing to live with ALL of the side effects, but it just went too far and became serious. I would go on it again if I needed to. Whatever weight loss I might have experienced with Tykerb was counterbalanced by the Herceptin and steroids, so I ended up gaining weight. :( Good luck to you!!

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