Any of you Stage III girls take Tykerb?

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Faith316
Faith316 Member Posts: 2,431
edited June 2014 in Stage III Breast Cancer

Anybody who is stage III take Tykerb?  Unless I missed it, I haven't noticed anybody.  Seems to me that only Stage IV ladies are on it. 

I am stage III   IBC and I have been on Tykerb for the past 8 months and will continue to be on it indefinitely at this point.  I was also on Xeloda for 6 of those months but ended that in January.  My oncologist wanted it stopped before my mx which was 3 weeks ago.  (I previously took AC, Taxol, Herceptin and had radiation for my original dx of IDC in 4/08.  But, when none of these did the trick and my cancer resurfaced in 6/09 as IBC, I was referred to MD Anderson Cancer Center and my oncologist there switched me to Xeloda and Tykerb.)

I hesitate to post a question on the Stage IV forum as I do not want to offend any of the Stage IV ladies.  That is their special place.  But, since they are the  only ones who also take Tykerb that I am aware of ...........

So, I thought I'd check again and see if there are any Stage III people who take it first.  It is a little awkward.  The point of this forum is to be able to connect with people who are experiencing the same type of treatments as you are so you can discuss things, ask/answer questions, find out what they did about some of the same side effects you might be having, etc.  But, when you don't really belong in the forum where other women are taking the same type of chemo as you, it kind of defeats a big point of being on the forum.

Anybody?

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Comments

  • lovetosail
    lovetosail Member Posts: 544
    edited March 2010

    Hi - I am stage II and on Tykerb - but it's part of a clinical trial.  I think it is not often given to earlier than stage IV, but I think it will start to be after some (promising) results from various trials are in.

    Hope posting here when I am not stage III was okay .... given the way you phrased your question I hope it so ;-)

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  • allisontom911
    allisontom911 Member Posts: 425
    edited March 2010

    I am not on it but was going to ask my Onc about it at our next appt.

    I dont think the gals on stage IV would get offended. I will certainly keep you posted on what my onc tells me. Did your onc say why you were on it, was it a preventative thing?

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  • Gayleebug
    Gayleebug Member Posts: 166
    edited March 2010

    I'm not, Faith, and can't say I have seen anyone other than the stage IV ladies on it.  But if I may ask .... what is the reason you were prescribed it as a stage III-er?

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

    No, not preventative.  I had active cancer (IBC) when I started on it.  Adriamycin, Cytoxin, Taxol, Herceptin and radiation didn't work for me.  My IBC started while I was still taking Herceptin and was in the middle of my radiation treatments.  My original dx was IDC.  My doctor thinks that it most likely wasn't a recurrence for me, but that all of those other drugs and radiation just didn't phase the cancer at all and it progressed into the dermal lymphatics of my breast as IBC.  So, definitely not preventative.  But, the good part is that it worked great for me and all pathology, mammograms, ultrasounds and 4 PET/CT scans in the past 6 months have all shown NED!  I'm no longer on Xeloda, but will stay on Tykerb.  As far as I'm concerned, Xeloda and Tykerb are lifesavers!  At least for me.  It typically is only used for stage IV breast cancer, though.

    Thanks for your responses.  Anybody else?

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

    Gayleebug --  I must have been posting the same time as you were.  The reason I was put on it even though just stage III is because nothing else was working for me.

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  • Gayleebug
    Gayleebug Member Posts: 166
    edited March 2010

    I'm sure we were!  I hope you get some positive responses in this stage III forum.  However, if you preface your reason up front when posting in stage IV, I'm sure the ladies there will not get offended.

    Hugs,

    Gayle

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2010

    I have had it in the past, but have reverted to herceptin. I've read your post several times, and can't actually figure out what it is you want to know? As stage 1V I'm happy to help if I can, but at the same time I think-as you acknowledge-that our situations are likely to be very different, so not sure that I (or anyone else at this stage) would be much help to you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Hi Faith,  I am not on Tykerb.  I just want to say your apprehension to post on Stage IV is not something be worried about.  They are all a caring and informative group of ladies, some of which started out stage III.  You may get some answers from them that will help you.

    image

    Barb

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    Hi Faith!

    Yes, I'm on Tykerb!!!! I have really missed having someone to compare notes with, as well, on the stage III forum! We had a thread going about swelling of our faces on Tykerb, with chainsawz from stage IV and chinit0 (for his/her mother) from stage III. But they are both on Herceptin as well, so it is hard to know which SE's are from Tykerb. I have read some about Tykerb on the stage IV forum, but they usually take it with Xeloda and that has it's own SE's as well. 

    I am on the ALTTO trial and am on the arm with only Tykerb. It has made me a little nervous as I would have preferred to be on the Tykerb + Herceptin arm, but there you go.... I am thrilled to hear that you are doing so well on the Tykerb! Think about having all that treatment first and it not working.... I suppose it shows how very individual all of our BCs are and that with all the research they do, there just is no guarantee. But now you have found your perfect drug- great!

    I am now on Taxol as well as Tykerb- 2 weeks more- then only Tykerb. What SE's have you been having? I am on 3 pills a day until done with Taxol, then up to 6. I am assuming most of my SE's now come from Taxol but am interested in what to expect. I have had elevated liver enzymes for awhile (ALT 100-160) which they think is the Tykerb, and if they don't come down I may have to go off the trial . I will find out tomorrow. 

    There must be more Stage II or III women on Tykerb out there. The ALTTO trial already has around 6,000 women in it world-wide, so that means 1,500 on the Tykerb only arm and another 3,000 on the 2 arms with Tykerb and Herceptin. 

    Fatih, I propose that we make this a sort of "Tykerb home" for less-than-stage-IVs. Of course, any stage IVs are more than welcome, but as the type of treatment is different, it may not be so interesting. 

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    lovetosail- Sorry, I somehow just overlooked your post! So there are 3 of us so far- great! I assume you are on the ALTTO trial. Which arm? How are you doing? You say that there promising results of trials- have the results already come out? I would love to know of any results. I am still a little nervous being only on Tykerb and getting no Herceptin.

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

    Faith - I am on tykerb (and herceptin) and like krcll have been posting on the HER2/neu Positive Breast Cancer forum on this website - even tho I am stage IV because not many other stage IV'ers are taking that med.  It seems there are more people from all stages on it because of the ALTTO trial so I have someone to compare notes with!   I posted a thread on the her2+ forum called herceptin - tykerb double whammy where we talk about SE and how to deal with them.  I'm sure there are also other threads on there about tykerb and it's lovely SE and I know other stage iv'ers on tykerb jump over there to post :>   lisa

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

    When I first started Xeloda and Tykerb in July 2009, I had the rash/acne thing on my face after I had been on it for a couple of weeks.  Used some Clindamycin and it cleared up.  I stopped taking Xeloda in January but have continued on the Tykerb.  My dosage was changed from 1250 mg to 1500 mg. daily.  About a week ago, the rash/acne thing started up again (although what I read is that it is not actually acne), but this time it is not only on my face but also on my scalp and quite itchy.  I have read several articles recently that actually say having the rash is a good sign that the drug is working and as weird as it sounds, the worse your rash the better!   

    I had an appointment with my local oncologist this morning and he suggested using Head and Shoulders shampoo but not the normal type of H & S with pyrithione zinc.  It is the type with selenium.  I bought some today and I will try it tomorrow. 

    Just wondered if any of you have had this side effect and if you found anything that helped.

    (Not on Herceptin anymore --- it didn't work for me.)

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  • bejuce
    bejuce Member Posts: 97
    edited March 2010

    I took Tykerb daily for 12 weeks with Taxotere every three weeks as part of a trial at Stanford.  I had a rash on my face that looked like a very bad and patchy sunburn, but it got better with an amazing lotion I bought at Whole Foods called Suki oil or something like that.  It's all natural and organic and did wonders for my face.  I hightly recommend it!

    Good luck!

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  • lovetosail
    lovetosail Member Posts: 544
    edited March 2010

    Hi krcll,

     I'm not on the ALTTO trial, I am in a neo-adjuvant trial called TRIO-B7.  The design is similar - 3 arms: TCH, TCH+TY, TC+TY, where "TY" is of course Tykerb, T is taxotere, C is carboplatin and H is herceptin. The first 20 patients were not randomized but put in the TCH+TY arm - I was patient #20!  That's the arm I wanted so I was psyched. My onc is one of the PI's of the trial and tells me that many of the early enrollees in the TCH+TY arm are seeing "pathologic complete response", which means the tumor disappeared by the end of treatment (confirmed by surgery).  I have 4 more weeks on the trial (treatment was 6 cycles, each separated by 3 weeks), then surgery in 4-6weeks after the trial is over.

    My SE's from Tykerb have been diarrhea and a rash on my face (which has mostly disappeared).  Diarrhea is manageable with occasional immodium. My dose is 1000mg daily.  My tumor has shrunk considerably.  The nurse practioner says that to her it is indistinguishable from normal breast tissue (I have fairly lumpy breasts) - I can still find it ;-) - although it has reduced in size and changed consistency.

    Best of luck to all of your with your treatments!

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  • krcll
    krcll Member Posts: 343
    edited March 2010

    chainsawz- I'll head over to the "double whammy" thread and have a look. Thanks for the tip!

    faith- Congratulations on the rash! I wish I could help with a tip but I mostly just got a reddish swelling of my face and neck. My dose was reduced to 3 pills so it all went away. In 2 weeks, when I am up to 6 pills a day again, we'll see what happens.

    bejuce- Thanks for the tip for us fellow Tykerb'ers. I'm writing everything down in case I need it.

    lovetosail- What fantastic results with the TCH+TY arm! And so lucky that you got on that arm! Do you know how the TC+TY arm is doing, especially in relation to the TCH arm? 

    Well, off to the pottie ;-)

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

    I also had the awful pimply rash on my scalp, that was there for a week or so before it started to retreat :<  The I use Suki facial moisture and the clindamyacin gel on my face and that keeps it under control.  About two weeks ago I got horrible rash all over that looked like acne on steriods!! It came with a fever of 103, so they reduced my dose of tykerb from 1250 to 1000, and it went away and I have had much less rash and hardly any diarrhea now (yay! no more poop soup!)  I always heard about the rash indicating a better response, but I have read posts from people like ElaineD on the stage IV who had the rash and then progression so that confuses me.  I do know this is good stuff and I plan to be on it for a very, very long time!!   

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  • lovetosail
    lovetosail Member Posts: 544
    edited March 2010
    kcrll - my onc didn't have results yet for the TC+Ty arm.  She did tell me that had I been in that arm, she would have made sure I got a full year of herceptin afterwards.
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