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Kadcyla intolerance and switch to Herceptine

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Docy
Docy Member Posts: 20

Hi,

I like to know if any one stopped Kadcyla due to side effects and went on Herceptine only

If so did you got total one year treatment and are then any long hollers that switched to Herceptine.

I’m having lot of muscle and joint pains throughout the cycle and my platelets are trending down below 100 thousand. My MO says I may not be able to finish the course and she says in that event I only need total 6 months of adjuvant chemo with Herceptine.But what I’m reading is , in the event if Kadcyla stopped, one should still finish the one year treatment with Herceptin.

Appreciate any comments.

Thanks.


Comments

  • sarah_78
    sarah_78 Member Posts: 119
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    Hi Docy,

    I am about to have my surgery and have a feeling I will be in your shoes very soon. All I am reading about Kadcyla is insane side effects *sigh*. Some even say it is worst than TC, which is already hard for me.

    As far as I know completing 1 year of Herceptin is together with the first part, you were given Herceptin with T and C together right? On my plan it is written 1 year total (meaning 18 cycles with 3 weeks in between), I did 6 cycles together with TC, so 12 cycles left. Hope that makes sense.

    Did you get any treatment right before surgery? I am a bit confused if they will stop or not.

  • minustwo
    minustwo Member Posts: 13,078
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    I had herceptin & Perjeta along with the taxotere & carboplatin for rounds. After surgery & rads, I opted for Herceptin only for the rest of a year. That was 7 years ago & so far I'm still NED.

  • Docy
    Docy Member Posts: 20
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    thank you Sarah and Minus Two for your reply.

    I had TCH, not received projects.

    While on adjuvant chemo I had severe fatigue and GI issues, but no pain. until I devoloped pain in my mid thighs from stress fractures from chemo, steroids and Boniva ( osteoporosis medication) requiring rod placements in by both femurs, after I had lumpectomy. If I did not have this pain I would say the originalchemo watery manageable. Now this severe pain in both shoulders, back and ofcouse my lower legs also from surgery, my life has become miserable and I would say my experience Kadcyla worse than TCH.

    I’m not still sure if I need get only 12 Or 18 with adjuvant. Very conflicting information per my review.

    Minus Two, thank you for sharing your story. That gives me lot of hope that I may be able to switch to Herceptine.

    Did you get 18 treatments after surgery?

  • minustwo
    minustwo Member Posts: 13,078
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    Docy - if I remember correctly - I got a total of 17 Herceptin treatments, including those I got with the initial chemo (TCHP) prior to chemo. So18 total is a reasonable number.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    I think your oncologist means one year combined. Kadcyla is chemo called emtansine mixed with Herceptin. So of the oncologist is saying one year of Herceptin, that may include Kadcyla. The KATHERINE trial participants that stopped Kadcyla early finished with Herceptin to complete a years worth of adjuvant treatment.

  • racheldog
    racheldog Member Posts: 209
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    Docy, I stopped Kadcyla after 4 treatments. Was a strong , healthy person before that and Kadcyla caused a mild to moderate lung pneumonitis. I stopped! Never was a smoker, or had asthma or even got allergies. No way was I going to destroy my lungs from that drug. There are many articles about Kadcyla causing lung damage---look at the fine print. I did finish out with Herceptin, which for many is easy. I did ok on that but cannot say that was fun to do either. All of this is so difficult.

  • sarah_78
    sarah_78 Member Posts: 119
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    I am reading Destiny Breast05 study sets 14 more treatments after surgery on Kadcyla arm. So maybe 14 is the golden standard now.

    I started feeling like this treatment will never end Sad

  • Docy
    Docy Member Posts: 20
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    Thank you so much all of you for above responses.

    Yes. MO was counting one year total. (18) including both neo and adjuvant chemo.

    I can not argue with her. I wan to try stay on Herceptine total 1 year in adjuvant setting if I can not continue with Kadcyla.

    I will send a note my other onco, that I did second opinion and hopefully she will answer.

    Thanks again for all your support. Lots xxx