Faslodex side effecfs

[24siofra]

I was on Ibrance and an oestrogen inhibitor for 19months and then there was a further development in bone mets ( ribcage). In November 2022 I was put on Faslodex. Since then I have had a 'f[oating' feeling in my head, sometimes dizzy but i feel quite un well and although I function normally I have to make myself do things. Has anyone experienced this side effect or similar on Faslodex? It is very helpful and encouraging to read all your letters: thankyou to the whole community

[13plus]

Hi 24siofra, I've been taking Faslodex for some time now and I've only ever felt weird in my head/dizzy at the time of the injections, if I had them while being upright. So I always have them lying down to avoid that. What you're describing sounds different though, if you mean you have that almost as a constant sensation. I would definitely reach out to your oncologist and ask them about it.

[24siofra in reply to 13plus]

Thankyou for replying. Yes it is constant. I have asked my oncologist but they don't have an answer for me. They put me on SERC but that doesn't help.

[Aprilfoolz1 in reply to 24siofra]

I am assuming you are not on any other medication or supplements that could create this along with faslodex ? If you are talk to a pharmacist as well as your oncologist .

[13plus in reply to 24siofra]

Stop taking the SERC then if it's not working at all, it's not the greatest of medications unless you really need it. I don't want to alarm you but have you ever had a brain scan? That is something you could talk to your oncologist about, if you haven't had one done since this started. Have you had a fall within recent months and hit your head? (Had something similar happen to a friend, months after her fall, turned out she had a very slow brain bleed). It might be really wise to discuss the sensation with your GP, as they are generally better internists. They can rule out other things for you. I would keep asking for sure

[24siofra in reply to 13plus]

I had an MRI brain scan which was clear. However it did reveal mets in skull base and I have mets in vertebrae. I spoke to a physio today who treated me for benign positional vertigo about four years ago. She said that from her very physical approach (as opposed to blood chemistry/hormonal oncology approach), it was possible that nerves in the neck were relaying messages from the compromised spine and up to the top of the head where they might cause inflammation or discomfort. Evidently nerves run on this route. I found this a helpful idea, which certainly rules out Faslodex side effects and it seems from the answers to my post that this particular sensation as a side effect is very unusual. I shall take her explanation to the oncologist and see what he makes of it. Just to say thankyou for your suggestions and also to everyone else who has suggested possibilities. It has been very helpful to me to take control, with all your help, of researching what is actually making me feel so unwell. You will be glad to know I felt much better today and went to the gym!! I wish you all the very best for a peaceful and pleasant day tomorrow.

[13plus in reply to 24siofra]

Yes good point, I can see how the nerves may be responsible in this situation with bone Mets where you have them. So then a visit with a neurologist might be a good idea to confirm this possibility . Glad we’ve been able to help you find a path to other possibilities. Great news the brain was clear And that you felt well enough to go work out today! 💪

[Aprilfoolz1]

Hi 24siofra, I've been on faslodex for 3.5 years and have not felt dizzy from it. I have had some pain at the injection site once in a while but nothing else . I agree with 13plus that you should call or send your oncologist a message about this. Hope it's a simple solution !

[24siofra in reply to Aprilfoolz1]

Thank you. As I said in my reply to 13plus I have asked but they don't know what it is. My oncology nurse suggested acupuncture which I am going to try. It does seem ,as Faslodex is well tolerated that it is caused by something else

[Claireperth]

if the oncologist isn’t interested, I would visit my local GP/doctor 🌸

[MadameKa]

Have you had a head MRI, just to rule out any spread there?

[Nocillo]

I had no problem with dizziness, am now on Ibrance and Tamoxifen, but yes, have to force myself to do anything. I never feel like doing anything. It took me 2 years to make the cinnamon rolls I had been craving! Very frustrating!