Advice for Faslodex and Ibrance Side Effects

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bowoky
bowoky Member Posts: 54
edited October 2018 in Stage IV/Metastatic Breast Cancer ONLY

My mom was diagnosed about two years ago with stage IV ILC mets to bones. She started Ibrance and Letrozole a year and a half ago and it was like a miracle. Her bone mets went away and there was no sign of cancer in her body with minimal side effects. She has recently switched to faslodex and is having horrible side effects: nausea, vomiting, fatigue, and low blood pressure. I'm worried about her as she was doing so great on the letrozole with very little side effects. Any advice on how to curb some of these side effects or hope for the future would be greatly appreciated.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2018

    Why did her MO take her off of letrozole if she was responding so well on that combo? Also, does MO know about all those SE? Hopefully MO will change her back to IL. Let us know what happens.

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  • bowoky
    bowoky Member Posts: 54
    edited October 2018

    Her tumor markers started to rise so the doctor switched her to faslodex. The doctor knows about the side effects. He gave her something for her stomach but that isn't helping. I think they're just saying that these are the side effects and hopefully they'll go away. It's been two months that she's been on F. She's also doing Xgeva shots, but she's been doing those since the beginning. She doesn't want to join any forums or breast cancer groups because she's kind of old fashioned so that's why I'm advocating for her.

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  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    Hmm. I'm sorry your Mom is having such trouble. While fatigue is common with Ibrance, and I've heard of transient nausea with the Faslodex shots, continuous nausea is unusual. [I took Faslodex for 4 years and am back on it with only hot flashes and butt lumps]

    But nonetheless, your Mom has these. The best advice I can offer is to keep taking the antinausea meds. Take them like pain meds. That is, don't just wait for the nausea then take a pill, take them every 6 or 8 hours without fail. That might help you stay on top of the problem. You might want to check my advice with your doctor -- I've never had this problem. But this approach DOES work with pain medication. It's easier to control and harder to stop.

    The other thing is your Mom needs to stay hydrated. That might be part of the problem. Lots of water and tea and coffee and gatorade (if she'll drink it). GInger Ale might help too.

    I'm hoping someone with nausea problems will come along with better advice. You could also ask on the Faslodex and Faslodex/Ibrance threads.

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  • bowoky
    bowoky Member Posts: 54
    edited October 2018

    Thank you for this info, pajim. I relayed it to my mom. We're hoping this is the transient kind, but she said the nurse told her that her hemoglobin is down so that explains the fatigue, at least. It's amazing to know that the Faslodex worked for you for so long. I think that gave my mom some hope.

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  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    Oh yes. I took it with letrozole for three years, then with letrozole and Ibrance for another year. After one year on Xeloda, I'm back on Faslodex and Verzenio. Seems to be [sort of] working this time too.

    There are studies going on of oral drugs in the same class as Faslodex but they seem to cause diarrhea, which the drug companies don't like. We don't mind of course, but we're not the primary goal for those drugs.

    This could also be that her body needs to get used to the new drug. Sometimes side-effects tail off after you're used to it. That's generally my experience. Or we get better at handling them. Other side-effects are cumulative. But for Faslodex it should be more like the first.

    Tell your Mom I hope she feels better soon. You guys should definitely keep in touch with the doctor though. No reason to suffer. She is not required to 'put up with' anything. If this drug is making her life miserable it's time to move on to something that doesn't.

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  • bowoky
    bowoky Member Posts: 54
    edited October 2018

    Thanks again! My mom is also developing some fluid in her abdomen which happened when she started letrozole and they usually drain it, but this is the second time that has happened with the faslodex. This is her 2nd month on F. I left a message for the nurse as he didn't call her back yesterday. Her hemoglobin is low and she has such low energy that I can tell she is winded on the phone. I'm extremely worried. Hoping she can get a blood transfusion soon as I know that has helped in the past. I was really hoping to hear from more women on here of their experience, but I think I will call the breast cancer information center now.

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