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Dizziness on verzenio or fulvestrant

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Hi all, anyone get dizzy or faint while on either? I got up to pee last night and got super dizzy heading back to bed. Found myself on the floor of the bathroom after fainting 😲I’ve never passed out in my life so it was pretty scary.

I was only out for a second or two, the dizziness went away quickly and I didn’t hurt myself, but it scared both me and DH. I am also experiencing tinnitus today, more than normal.

I have reached out through my portal to my oncologist. I’ve been on both drugs for five weeks. 300 mg per day of verzenio and other than occasional runs and headache. I hoped to stay on the higher rx for as long as possible.

I may have been a bit dehydrated and I had a multiples bout of diarrhea last evening so that might have contributed?

I feel fine today, just tired from disturbed sleep and freaked out.

Claire

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  • threetree
    threetree Member Posts: 1,347
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    Claire - Sometimes I think I get lightheaded from one or both of them and have come close to passing out, but never have. When I get those "spells" I too wonder about other possible causes like dehydration, but no way to tell. Haven't directly brought it up with the onc, but I think the side effect lists mention it. Interesting, about this and the Verzenio dose. I recently went from 150x2 to 100x2 and I have noticeably less fatigue and dizziness. Yesterday however, I wound up without any more of the 100 mg I've had for a month, and decided to fill in with an old 150 mg that I had left to tide me over until the new batch of 100 mgs came in the mail in the afternoon. Within half an hour of taking the leftover 150 mg tab I began to feel absolutely awful and still do this morning. More fatigue, muscle and joint pain, bad headache, and yes, lightheadedness, and Tylenol did little for any of it. I assumed it was the "extra" Verzenio and that I had forgotten how bad the higher dose had gotten for me, but now am wondering about the fulvestrant. That peaks in your system about 7 days after the injections and my last ones were 7 days ago. Good luck figuring out your lightheadedness. I think both drugs can do it and that it's more likely with the higher dose of Verzenio. (I've started feeling so bad since yesterday that I'm actually wondering if my current lightheadedness and more isn't from just plain being sick, although I've been this bad before from what I think is fulvestrant. Going to try a home Covid test later today.). If you learn anything from your oncologist, please share, as I would love to have more insight on this topic also. Thanks for posting, as this is a real conundrum.

  • threetree
    threetree Member Posts: 1,347
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    PS I also realize how totally scary that would have been for you! Just feeling like I might pass out is scary enough. The real thing would be something else. You are so lucky that you didn't get hurt! Hope you are feeling better today.

  • claireinaz
    claireinaz Member Posts: 680
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    Thank you threetree! Much better today and my oncologist nurse called this morning after reading my portal message. She told me to hydrate and use electrolytes so I have been. I was lucky, and am going to be more careful while on these meds. The nurse said I probably had hypotension when standing up, and had me take my bp lying down, sitting and standing, and it didn’t reveal much but I had somewhat lower bp than usual this morning… 113 /69 when I got up. No hot yoga for me for 3 days per doctor’s orders which I know also can put me at risk for dehydration. I am usually good about hydration but may have not been so aware of it the past couple days or so either.

  • threetree
    threetree Member Posts: 1,347
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    Oh Claire, so glad that you are doing better and were contacted by your medical staff! Yes, sometimes it can be orthostatic hypotension and/or dehydration, but sometimes I think it's just something unique to these drugs. Really glad you are doing better and getting a handle on things. Thanks to for posting what your nurse told you. It's really helpful for many of the rest of us too.

  • claireinaz
    claireinaz Member Posts: 680
    edited February 1
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    so as I reflect on last night, I also factored in the Imodium I took just before bed (also causes dizziness) and I take gummies (THC indica) for sleep. That may have exacerbated the dizziness too along with dehydration too, last night. I feel like myself again now though.

    Just these darn hot flashes. I thought I was done with them and now I’m having about 3 a day. I hope it means the meds are working anyway.

  • cure-ious
    cure-ious Member Posts: 2,745
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    Hi Claire, I was not able to take the full dose of Verzenio due to profound dizziness, much more than a normal "spell" due to getting up too fast, for example, and was not due to dehydration. It is pretty much gone at the middle dose, and I read that 25% of patients reported dizziness ats a SE on Verzenio.

  • claireinaz
    claireinaz Member Posts: 680
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    Thanks, Cure-ious. Since it was the first time I've ever passed out in my life, I attribute it to Verzenio. It is a powerful drug for sure (it better work). Funny how they wanted to try to chalk it up to orthostatic hypotension also. I have never had that in my life either.

  • threetree
    threetree Member Posts: 1,347
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    I too would bet on Verzenio over other things.

  • cure-ious
    cure-ious Member Posts: 2,745
    edited February 3
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    Claire, yes, my MO also chalked it up to orthostatic hypotension, but multiple times I got dizzy just lying in bed, and had to stare at something to try to keep my balance. Even moving my head sideways could make it worse. Once it hit me when I was having breakfast at a restaurant, I spent a long time trying to figure out the quickest way to get up and out the door without keeling over, and wondered what to do when I got to the car, since it surely wasn't safe to drive- that's when I dropped the 150mg Verzenio, and all the dizziness went away on the 100mg dose. I'd never had anything like these spells before, so it was definitely the drug, and it can be very unpleasant and scary…

  • claireinaz
    claireinaz Member Posts: 680
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    Cure-ious, it sure was scary though I was out for seconds. I'm taking another drug for overactive bladder that actually says one side effect is orthostatic hypotension. So I'll say it is the combination of these new drugs I've been taking since Dec. and hope it doesn't happen again.

  • edieldr
    edieldr Member Posts: 2
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    Hi, my daughter started Verzenio in early January. After 2 weeks the MO took her off due to low blood counts. Her worst side effect was diarrhea, no head related issues. After 3 weeks she re-started the drug and after two weeks is suffering all of the head related symptoms you've been describing - headaches, dizziness, lightheadedness, major fatigue. The MO has taken her off Verzenio again, plans to re-start it again next week. My daughter is at 150mg dose and at least for now her thinking is that she will try that again for one last time but plans to go to 100mg if the head issues recur. So a question for those who've reduced dosage, how long did it take for the lightheadedness and other symptoms to subside? She only stopped yesterday but feels awful and is concerned it'll be weeks for this to go away so any insights are very helpful!

    And another question - do you know if a lower dosage for a longer time period has the same efficacy as the higher dosage for a shorter period? So the original plan was 150x2 for two years, would 100x2 for three years have the same outcome? Probably a question for her MO but thought I'd ask in case you knew!

    I'm glad you started this post, it was so helpful to see others experiencing what my daughter is experiencing. Thank you!

  • moderators
    moderators Posts: 8,052
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    @edieldr we're sorry to hear all you and your daughter are going through. Can you tell us if your daughter has metastatic breast cancer, or early stage (stages 1-3)? If they are planning on stopping it in 2 years, that would suggest that she has early stage, likely. Here is the research on that. https://www.breastcancer.org/research-news/verzenio-plus-hormonal-tx-reduces-recurrence-risk

    These are really good questions though to ask her treatment team regarding dosage and treatment. It sounds like a dose reduction to 100mg is a very good option to try first, as many experience a reduction in their side effects with a reduced dose.

    We're all here for you!

    Your Mods

  • edieldr
    edieldr Member Posts: 2
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    Hi - my daughter was stage 2, had AC x 4, then taxol x 12, then two surgeries (lumpectomy plus lymph node disection) then radiation x 35. She started Letrozole a few months ago. She's high risk due to tumor grade (not size or lymph node count), which is why the MO put her on Verzenio. She's trying to tolerate highest dose to achieve best outcome but this has been a nightmare. As I mentioned she wonders how long it'll take for fogginess to dissipate now that she's off it, though is starting to feel better. Apart from my question if a smaller dose over a longer time period is as effective as the high dose on a shorter time period, I also question the same dosage for all body sizes. She's relatively petite, someone could easily be 50% larger than she and both would be given the same dose? That just doesn't make sense to me. She will ask her MO these questions next week. And one last (hopefully) question - does the fogginess ever go away fully once the body gets used to the drug? I'm so sorry so many people have to live through this life experience and glad there are supportive communities to share knowledge and tips. Seems to be so many more younger people getting cancer now too, which is a real rip. Thank you again for sharing your experiences and knowledge.