Anyone on Herceptin/perjeta (no chemo)? What side effects?

Tinkerbells
Tinkerbells Member Posts: 211
edited March 2017 in HER2+ (Positive) Breast Cancer

Hello all,

Can we start a thread for those on H and P? I am getting it for a year. I am unsure of what side effects are normal or not. Hoping we can keep each other informed of our treatments, how we are doing, side effects etc.

I've been tolerating it well. The big D I was getting while on H and P and Taxol is gone. Mostly I feel achey and have a runny nose.

In last few weeks I have neck muscle pain and clavicle tenderness- this is flipping me out and I am scheduled to see onc about it.

Hope we can come together and keep track of each other!


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  • CarlaK
    CarlaK Member Posts: 158
    edited December 2014

    I did PHT for 6 rounds, then H alone (with Tamox) for about a year, then in Oct added the Perjeta back in. For me, I have more big D now than with PHT, so I'm finally getting smart and stashing Immodium everywhere. My biggest frustration is that the neuropathy in my hands is back since restarting Perjeta.  I thought it was due to the taxotere, but my fingers are numb again and my feet are worse too, so it's got to be a separate side effect of the Perjeta.

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  • waterdog
    waterdog Member Posts: 46
    edited December 2014

    I am absolutely having problems with the bid D. Finally got a prescription stronger than immodium. Also, my potassium levels have dropped into the dangerous low levels so I am now taking a prescription supplement to help and will have a blood check up tomorrow to see if my levels have improved.

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    I just finished TCHP this week and will be doing Herceptin only for the full year. I've had some big D occasionally and my MO says it's from the Perjeta, so I'm hoping that having just Herceptin will be easier.

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  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited December 2014

    The big D was as serious problem for me the first 5 infusions, and some of that I guess was Taxol. In the last 2 - nothing. The "-itis" is more of an issue - have random bouts of inflammation that onc thinks is perjeta. Muscle aches, visual changes, tinnitus.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2014

    I am stage iv and I chose Herceptin/Perjeta and not chemo. I was given 6 months to live, and I outlived that date and I am doing well. My last ct scan showed no new tumors and the ones I have are shrinking or stable. I had 4 brain mets and they are zapped by gamma knife...Had a recent MRI and no new mets.

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  • Skoolgirljen
    Skoolgirljen Member Posts: 28
    edited December 2014

    I finished TCHP on 5/30. I've been on Herceptin only since then. I haven't had any noticeable side effects from the Herceptin only. It's sooooo much easier than the other chemo drugs!

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  • dmonroe
    dmonroe Member Posts: 1
    edited December 2014

    my wife finished her chemo, started herceptin and perjeta 12. 23. 14 she became very tired, short of breath, sores on her head, burning feet and hands, chest hurt, very moody, she finished chemo, 11-19- 14 after two weeks she was feeling better, more energy , breathing was improving over all 100% better. then started hercepton and perljeta everything went backwords. would appriacate your imput. thanks

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  • snowhite184
    snowhite184 Member Posts: 1
    edited March 2017

    I have only been on Herceptin and pertuzamab for almost 4 years now,Numbness in my hands and feet bad

    glad to know its not just me.have terrible body ache too,but think that may be from the arimadex .

    I have been told I will stay on this as long as my body allows it,

    I have breast ca with metz to the liver.Doing well,most of the lesions went on the trio of meds,on taxotere too first for 10 doses.

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  • Calcon
    Calcon Member Posts: 21
    edited March 2017

    I've been on H & P for almost two years. Had some diarrhea in the first few months, but this has subsided. So far, tolerating it really well. I love this treatment TBH. I feel very normal and lucky enough not to have side effects. Since my recent progression to bones, my MO is in two minds about switching me to TDM1. We're holding off for now til my mid year scan since we don't really know if the bone disease is her2+. I hope to stay on this for as long as practicable.

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