How long on Tykerb?

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Faith316
Faith316 Member Posts: 2,431
edited June 2014 in HER2+ (Positive) Breast Cancer

I just completed my third year on Tykerb and still on it.  Just wondering how long others have been on it.

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  • MetropolitanBelle
    MetropolitanBelle Member Posts: 10
    edited August 2012

    Hi Faith!



    Great that you've been on Tykerb this long. I'm on my fourth week and my onco is taking me off it. The side effects are becoming unbearable. I have a terrible and very itchy rash all over my body. I have lost most taste for food. I am constantly nauseous and I've started vomiting. No diarrhea and no hand/foot disease, but my quality of life is terrible. I'd say the Tykerb has been phenomenal at bringing the cancer under control. But at this price, my Doc is looking at other options now.



    So, having read you've been on Tykerb this long I'd say great for you. It is effective. It works, and obviously the side effects were manageable for you.



    How did you manage any of the side effects?



    M.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2012

    I don't have some of the side effects you mentioned.  The ones I have are diarrhea, cracks around the fingernails and on the bottoms of my feet, lots of big toenail issues like repeatedly getting ingrown nails, breakouts on my face and scalp. Thankfully, the side effects are not as bad as they were when I first started the drug.  I guess my body has gotten use to it somewhat.

    For my nail issues, I have a wonderful girl who does my manicures and pedicures and she does a great job trying to take care of especially my toenails.  It hurts me when she does it, (we jokingly call it her doing surgery!) but she takes her time to try and lift the offending corner of the nail that is getting ingrown and clips it a little to relieve the pain and swelling.  It is painful when she does it, but then it feels so much better for another 3 weeks or so and then I have to let her do it again.  However, it is worth it.  She is saving my nails.  When I went to the podiatrist, she would hurriedly clip the corners of the nails without any regards for trying to preserve any normalcy to the shape.  Then, after I had been there several times, she just wanted to remove both of my big toenails totally and be done with it.  I'm thankful that my nail tech cares enough to try and help me.  I also use Clindaymcin antibiotic gel on the toes when they are inflamed and also on the cracks on my hands and feet.  It is nowhere as severe as it was when I was on Xeloda and Tykerb.

    We have discussed before here on the forum the fact that apparently, the people who get the rash/breakouts have the best response to Tykerb for some reason.  I hate it when I have all the breakouts, but if it means the drug is working for me, I can live with it!  I use Clindamycin gel on my face when it breaks out.  I also use Head and Shoulders shampoo when my head is breaking out a lot.  Not the normal type, but the type in the dark blue bottle that has selenium in it.  My oncologist suggested I try it and it seems to help.

    The diarrhea I just live with.  I am also on Metformin and it is actually worse than the Tykerb for this.  But, it is usually in the evenings when I am home that I have the problem, thankfully, and not while I am teaching school!

    I'm sorry you had such a hard time with Tykerb.  I hope your doctor finds something else to help you that you can better tolerate.  Thank you for your reply.  I hope others who are on or have been on Tykerb will also reply as to how long they were on it.

    Good luck.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2013


    Bumping this back up. I am still on Tykerb -- for over 4 years now. Wondering if other people stay on it this long.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited November 2013


    Faith


    I did a year of Tykerb. Are you on Herceptin also? I am stage IV so I am on Herceptin for life. I have been NED for 5 1/2 years now. We did a year of Tykerb with Herceptin .. just because. I had the big toenail issues. I had two surgeries on both toenails and what they ended up doing was taking out a portion of my toenail which ran all the way down the outer edge. This prohibited the toenail from being ingrown . Wow .. it sure hurt getting that surgery though. I had the "Tykerb zits" but mostly on my arms. The diarrhea resolved pretty quite and didn't reoccur. My opinion is that it is way easier to get a Herceptin infusion every three weeks than being on Tykerb. But it might be an insurance thing for you too.


    I think the fingertip splits where was hurt the most.


    Jennifer

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2013


    When I was dx with IDC and DCIS, I first took AC and then I took Herceptin concurrently with Taxol for 12 weeks and then switched to just Herceptin. But, it didn't work for me. In the midst of taking Herceptin and while in the middle of my radiation, I was dx with IBC. My local onc sent me to MDA and they stopped the Herceptin (I had been on it for 9 months by then) and switched me to Xeloda and Tykerb. Xeloda was only for 6 months but have been on Tykerb for over 4 years now.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited November 2013


    Wow, four years is a long time to be on Tykerb. I only say that because the side effects are much harder to deal with than Herceptin. What is your dosage? I started at 1250 mg (5 pills) and then half way through the year I went down to 1000 mg and at the end was only taking 750 mg. I wonder if a reduction in dosage might ease some of the side effects. I am telling you though that those Tykerb Zits kept appearing on my arm for nearly a year after I stopped. My fingers healed up quick but I saw that weird acne for the longest time. It was telltale .. some weird pimples showing up late aternoon and nearly disappearing the by the next morning only to reappear again the next afternoon. I am not sure long term the side effects are much different than Herceptin. You can't argue with success though.


    Jennifer

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2013


    I am on 1500 mg daily.. I do have to get an echocardiogram periodically and they monitor my liver enzymes with bloodwork every couple of months. But, I can do this if it keeps me well!


    Thanks for your replies, Jen!

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2013


    When I was dx with a spread , stage 4 in AugustI began Herceptin ,again, with tykerb (1000mgs daily) Iti s good to see how long it has been working for folks. The spread to my adrenal gland was gone after 9 weeks on the hercpetin/tykerb combo, so I will remain on that combo as long as it works, and you all give me great hope. Echo periodically, blood work every 3 weeks with hercpetin and CT scans about every 9-12 weeks for the present. Diarrhea has been the primary issue, but as Faith said, if it keeps me well, I will deal!


    Be well


    Nel

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  • sblankenship
    sblankenship Member Posts: 4
    edited December 2013

    I need some help.  I have been on Tykerb plus Herceptin infusions for about three months.  Most side effects are manageable, like nausea, and diarrhea, but the fatigue is kicking my butt and it seems to be getting worse.  Any suggestions on how to combat the fatigue?? Supplements, certain foods???  Please help.  Thanks.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited December 2013


    Maybe change up the time of day you take the Tykerb. I suspect it might be the culprit. I used to take mine at night. Herceptin only gives me fatigue later the day of infusion but it goes away. If you regularly have diarrhea make sure you are well hydrated. Chonric Diarrhea is tough on your body. My naturalist put me on a high alkaline low acid diet which helped my GI tract feel better and made me feel better. He also gave me probiotic with a digestive enzyme which helped so much. Tykerb is rough on the GI tract.


    jen

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited December 2013


    I take my tykerb at night. The fatigue is noticeable compared to my typical energy level but my onc assures me that the effects of tykerb will not become cumulative with the fatigue getting worse. I hope he is right, I work, have teens and divorced. Fatigue is not an option. For the diarrhea, my onc suggested a probiotic daily. I began this about 3 weeks ago and it seems to have made this issue far more manageable, not gone, but better.


    Be well


    Nel

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  • SusanK426
    SusanK426 Member Posts: 11
    edited January 2014

    Up until today, I was on Tykerb for 11 months, Herceptin for 3 years (2 prior mets in bone) and just had confirmation today of another metastasis also in bone & clavical (which was the site of my last met 12 months ago.) My Oncologist is submitting approval for the new wonder drug, Kadcyla (TDM1) which replaces Herceptin and includes another drug. It is a targeted therapy and  I've heard the potential side effects are far less than any other options and NO hair loss! Yeah!! 

    While on Tykerb, the diarrhea has been 1-2x/week and controlled with immodium. I did have a rash all over in the beginning on my arms, legs and I think stomach. Once my Onc started me on doxycycline 100 mg/2 daily, no rashes at all since then. 

    I hope this helps. 

    Be well,

    Susan

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