discouraging side effects on kadcyla

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debsing
debsing Member Posts: 89
edited November 2018 in Stage IV/Metastatic Breast Cancer ONLY


while I have every reason to believe kadcyla is working for me, the side effects are pretty bad. I have extreme fatigue, chills from time to time, nausea, (that zofran doesn't touch sometimes) and no appetite.. I'm only a tiny bit over a week past my second treatment and hope like hell I don't have to stop this treatment because it has worked wonders for some. Anyone else been through this on a treatment, kadcyla in particular?

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  • stagefree
    stagefree Member Posts: 2,780
    edited October 2013


    for delicate stomach, I can suggest stomach ulcer meds (approved by onc) to support Zofran. ı used another nausıa med with Zofran while on Taxotete. Sure you are hydrated enough?? And should eat whatever you can tolerate, empty stomach not good.


    As for fatigue, it's a standard package with most chemos, sonhave to accept it. Life after dx is not to be expected as before. It takes time, but you will get used to the new normal.


    Not have any experience with that one but have had all SEs you've mentioned. Ad long as your MO says it's normal, it IS normal. After all, this is cancerland😒..


    Ebru

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  • Brooklyn
    Brooklyn Member Posts: 36
    edited October 2013


    I just finished my 12th cycle of Kadcyla and I have to say my side effects are vary from cycle to cycle. After my 11th treatment I was incredibly nauseous for days and was in bed for a couple days also... The zofran helped a little but not for very long... I was dreading this latest treatment because I was finally feeling better but surprisingly I feel great this time! No nausea and little fatigue and if I think back over all the treatments it really always varied... I hope this is somewhat helpful and you feel better very soon! I also started on nexium daily and that seems to have helped too.


    ~ Brooke

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  • debsing
    debsing Member Posts: 89
    edited October 2013


    thank you for your feedback! It was all very helpful! I hope it'll be working long enough to have 11 treatments!

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  • hotandcold
    hotandcold Member Posts: 205
    edited October 2013


    Just had my 6th Kydcyla. Same side effects as you debsing. What was finally a turn around for me was when my onc give me Zofran, hydration and potassium (mine was low) in an IV bag a week later after my chemo. I needed hydration because I had such bad nausea. The pill form of Zofran doesn't seem to work for me but the liquid does. Fatigue, chills,nausea and no appetite are some of my symptoms too. Dr. (onc) kept telling me that the other two women in his practice who are on it are doing super with very few and mild side effects. Not me.

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  • debsing
    debsing Member Posts: 89
    edited October 2013


    Yea its like "thanks, way to make me feel normal". I'm super tired on kadcyla

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  • Quaatsi
    Quaatsi Member Posts: 385
    edited October 2018

    I am about to start on Kadcyla as my tumor marker is rising and I am having cancer cells once again build up in the pleural space. Been down this whole road way too many times for way too long (31 years of cancer). How is everyone doing on it?

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited October 2018

    I was on Kadcyla for quite a while. After time, I started developing post-infusion reaction. My oncologist did the following:

    -slowed down infusion rate

    -gave me pre-med of Emend (for nausea), Pepcid AC, and Benadryl

    -gave me an extra bag of hydration after infusion done.

    That helped. I was having chills, elevated heart rate, high blood pressure.

    I finally had to stop Kadcyla because, since it is a chemo, it was hitting my bone marrow and my platelets were no longer recovering. I'm on Herceptin/Perjeta now and learning how to deal with side effects there. Good luck.

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  • Quaatsi
    Quaatsi Member Posts: 385
    edited November 2018

    I start Kadcyla on the 15th. My oncologist said that she has never heard anyone complain of any of the side effects that people here discuss. I wonder if patients just don't tell their oncologists what is going on for fear of being rejected? I have heard that before.

    I am clearly not eager to do this but am happy my oncologist is willing to be flexible with me.

    Q

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  • ADDK
    ADDK Member Posts: 78
    edited November 2018

    Hi Q, I had my first Kadcyla infusion two weeks ago,and was premedicated with prednisolone. Infusion time 90 min. Apart from additional muscle cramps in my feet and lower legs (SE from Herceptin) I have experienced no SEs at all.

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