For those with pain from Faslodex - Does it ever get better?

GoldenGirls
GoldenGirls Member Posts: 608
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

My mother is a week out from her last of the loading doses and her pain since starting Faslodex has been through the roof. The onc said it will get better, but it's worse than ever right now and stopping her from being able to do anything. Her pain meds barely touch the pain at all. This is especially frustrating because she's stable and would be feeling great if not for the SEs from the injections.

Has anyone else experienced such bad pain from Faslodex? When did it get better?

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited May 2016

    Bumping my post. My mother is desperate for some hope that this pain will ease up. None of her pain meds are touching the back pain from the Faslodex.

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  • jobur
    jobur Member Posts: 726
    edited May 2016

    Golden, I do think it will get better, but in the meantime your mom needs palliative care to get her pain under control. Many hospitals and clinics have palliative care specialists now. Our mo's are not always the best for recognizing and helping with pain. Also, please tell your mom that I was sure I was having progression the first couple months on Fas. Turned out to be healing and my 3 month scan showed dramatic improvement in my bone mets. Best wishes to you and your mom.

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited May 2016

    Thank you for your reply. Meds seem to help the joint pains, which seem to be getting better, but the lower back pain is still here and not touched by any meds no matter what she tries. She hasn't been able to do anything for a week now because it's gotten so bad and is becoming depressed because she feels helpless. On top of that she seems to have caught a "touch of pneumonia" (according to the doctor at in the emergency room) and her cough makes her miserable. The cancer is stable so she's not worried about progression but feeling so crappy is really getting her down.


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  • artistatheart
    artistatheart Member Posts: 2,176
    edited May 2016

    I am wondering if they hit some nerve during the shots? One round of mine they did and I had pain down my whole leg for almost two weeks. It did resolve o it's own and I ask for a different nurse now for the shots. I do get joint pain but nothing intolerable.

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  • pajim
    pajim Member Posts: 2,785
    edited June 2016

    GoldenGirls, is the pain from the mets themselves? Or do you think it's a side-effect of the drug? Your description is of the second, but it's unusual. The first thing you need to do is call her onc. Explain that it's not pain from the injections but the drug is causing problems. Get a referral to a pain mangement specialist. Different kinds of pain (bone, nerve, soft-tissue) need different kinds of treatment.

    You could ask on the Faslodex Girls thread. I've been on that thread for three years and have never heard of someone having pain like your Moms. Which means that this may be tough to treat, because it's not seen a lot.

    I wonder if the castor oil is causing the problem? That's what the Faslodex is dissolved in. If so, then the pain should fade in a week or so.

    If you can't lick it, she should move on to a different treatment. No reason to live in pain like this.

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited June 2016

    Hi Pajim,

    We're going to the onc today. We have found a small handful of other women with pain this bad, but her low back pain in particular has me thinking perhaps a fracture or something as it's coming on 9 days without any relief at all even with pain meds. It's definitely not the injection site and all of these pains have consistently come on a few days after the injections with each loading dose. The onc told her they would improve and the travelling pains all seem to pass within a couple of days, so this lingering lower back pain could very well be something else. Hopefully we will know more today or at least be able to get something better for the pain. My mother tends to turn down prescriptions for stronger medication and not take the ones she is given because she doesn't like to feel sleepy and most meds do that to her. She has finally agreed to listen to the doctor and take what she needs to in order to be comfortable. If these turn out to be side effects, she says she still prefers to stick with Faslodex and not waste an option as long as whatever they give her can help control the pain. We shall see.

    Thanks for you replies.

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  • pajim
    pajim Member Posts: 2,785
    edited June 2016

    Good luck! I hope they can pinpoint the lower back pain issue.

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