Anybody on just Tykerb?

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

I just completed 6 months of Xeloda and Tykerb for my IBC which is my second dx.  The first was DCIS and IDC and I did AC and Taxol and Herceptin then, but had a recurrence as IBC while still taking Herceptin and while still doing radiation.

I was referred to MD Anderson Cancer Center for their IBC program and my oncologist there stopped the Herceptin since it obviously didn't work for me and switched me to Xeloda and Tykerb.  I finished the Xeloda in January and just had a mastectomy 3 weeks ago.  But, my onc wants me to stay on Tykerb for at least a year, maybe two years and maybe even indefinitely.  He says my situation is unusual and there is no established protocol for something like this.   He says for now just stay on Tykerb and get through the recovery from surgery and he'll decide later how long he wants me to stay on it.

Tykerb and Xeloda are always given together.  I haven't heard of anybody just taking Tykerb without Xeloda.  So, 3 questions:

-- Do any of you just take Tykerb?

-- How long have you (or did you) stay on it?

--What was your dosage?  (I was taking 1250 mg of Tykerb daily while I was still on Xeloda, but after the Xeloda ended in January, he upped my dosage to 1500mg of Tykerb daily.)

Thanks for any replies!

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited February 2010

    After I finished my chemo, I started taking Tykerb.   I am still on Herceptin (and will be for life .. Stage IV) but my oncologist wanted me to take Tykerb also for year as it crosses the brain/blood barrier.  I started with 1000 mg (4 pills) and took this for about seven months.   I started having real issues with hot and cold sensitivity.   Sun and warm water put me into an itching/burning frenzy.  So, she backed it off to 750 mgs a day.  I just finished in January.    I didn't have really any major problems with the Tykerb.   My biggest compalin was the splitting finger tips.. you may already notice this.   I did get a nightly rash which pretty much kept to my arms. . It sort of looked like zits.   I didn't have a big problem with diarrhea... a little at first but I got it in check and it stayed that way.   I have been hearing Tykerb being added to the protocol with success especially in alot of earlier stage cancers.  

    Good luck with it.  You are taking a hefty dose but since Herceptin didn't work, I would think it is appropriate and I would definately do it.

    Jennifer

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  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2010

    When I was on Xeloda and Tykerb, I had major hand and foot syndrome which is the splitting fingertips you mentioned.  I also had it on my feet.  It got to the point that it really limited what I could do with my hands and was also painful when I walked.  Now that I am off the Xeloda, the hand and foot syndrome is going away for the most part.  Thank goodness.  In my case, it was mostly caused by the Xeloda.  So far after 7 months of Tykerb, I have not noticed any rash nor hot and cold sensitivity.  Maybe I'll luck out and these side effects won't be a problem for me.  I, too, had some diarrhea issues especially at the beginning.  Not as bad now although I still have some days worse than others.  Thanks for your reply and good luck to you.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited February 2010

    Like Jennifer- I am on tykerb and herceptin, which will be for life since we are stage IV. I had a reaction, so I only take 4 pills of tykerb a day - 1000mg.  That is a good dose for me since I was having constant diarrhea on 1250mg a day.  I started a thread called herceptin and tykerb - double whammy (or something like that) on this forum were I detail all my SE and how I deal with them :> 

    Tykerb is good stuff and I am glad you are on it.  May you have a zillion years with NED!!!  lisa

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  • krcll
    krcll Member Posts: 343
    edited February 2010

    I am on the ALTTO trial and got the arm with only the Tykerb. I have gotten it first with 3 months of Taxol (only 2 more weeks left!!) and then will continue for 9 months more alone. When I started the Tykerb/Taxol, I took 6 pills a day. After a few weeks I was getting some rashes and my diarrhea was fairly extreme. Just at that time, the ALTTO people decided that 3 pills a day whilst on Taxol was enough, so I got to reduce. I don't really think I have any SE's right now from the Tykreb, though it is hard to know what is Taxol and what is Taxol. I am having SOB and problems with my liver enzymes- could be from either.

    In 2 weeks, I will be done with Taxol, so the Tykerb dosage will go up to 6 pills a day again. I hope you are doing well with the Tykerb!

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