I've been on Xtandi for about 7 weeks and thought I was doing really well with SEs of just a bit more fatigue. Then on Wednesday evening I started feeling a bit unbalanced and by Thursday morning, the room was spinning and I couldn't get out of bed without help. I also feel nauseous and have been physically sick.
Was unable to get up for two days and now on Saturday I still feel a bit dizzy but can get around holding on to things.
I've never had vertigo before unless I went on a violent fairground ride or had too much alcohol when I was younger! So I'm thinking it's very likely due to the Xtandi which I've stopped taking for now and will contact the oncology team on Monday to discuss.
Has anyone else experienced vertigo with Xtandi and what did you do about it? Thanks.
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Benkaymel
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I had one night quite early into taking Xtandi where I basically felt very dizzy and momentarily passed out. I went down like a sack of spuds. I put this down to a hot bath and not being hydrated. I've since been ok for the past 2 years on Xtandi. Hydration helps.
I notice your in the UK. Your local hospital will have an Oncology emergency call number. I would recommend speaking to the on call doctor today. What you have described sounds extreme. Hopefully a one off but you need a blood test, possibly a head scan and a medic to advise you here.
Thanks for you reply. I'm drinking more water. Called the hospital but it seems there is no out of hours emergency Oncologist in my trust (University Hospitals Sussex), only a general triage nurse who knows nothing about cancer or the treatments. I should have called on Thursday or Friday but will call Monday morning anyway when someone is there.
Yes tried that. It made me throw up and no difference to the symptoms, but thanks anyway. There are several possible causes of vertigo. BPPV being just one.
I got vertigo early on Xtandi but it subsided after dropping dose to 120mg from full dose 160mg. Learned to walk to the left just a bit so I wouldn't run into things. Good luck!
Perhaps somebody in your family may learn the Epley maneuver to rule out Benign Paroxysmal Positional Vertigo which could be a relative common problem.
One may throw up during the Epley maneuver, it does not mean you don't have BPPV. Consult with your doctor, but increased vertigo and throwing up during the Epley maneuver may be consistent with BPPV.
The throwing up may be caused by the movement of the crystal in the canal. If the eyes did not move side to side when doing the maneuver, then it should be tried starting in the opposite side.
You need to consult with ENT doctor to determine the cause of your vertigo.
My guess is this isn't due to the xtandi and this is just a coincidence but you definitely need to check with a doctor. (I've been on xtandi for two years) Good luck.
When I first started taking enzalutamide, they had warned me of many different side effects. It really messed with my mind because I was already unsettled having been diagnosed with advanced prostate cancer at 48. But having been on them for 2 1/2 years, I'm not sure that there are any side effects. Perhaps a little fatigue from time to time but long walks in country air seem to help a lot. Maybe I've been lucky. But I wish you all the best.
Thanks, I've thought I was just as lucky for the last 7 weeks and maybe I still am. The vertigo might due to something else entirely. I've gone back on Xtandi 1/2 dose and will move back to full in a few days and see what happens. All the best to you too.
been on it now for 6 years, yes I called it motion sickness, had to take anti nausea pills. It did get better but still take ginger from time to time and changed my time of taking Xtandi to the evening, that helped
Thanks but I don't think it makes any difference what time I take the Xtandi due to it's half life of around 6 days. This has lasted 4 days so far but gradually getting better.
well it did help for me. Xtandi does not play well with other drugs especially pain meds. The company does have pharmisists on duty all the time. Might help to call them and discus your problem with them. I ended up in the ER a couple of times due to incorrect drugs interactions.
Good to hear that changing time of day helped you. I'm not on any pain meds so it's not interaction with them. I am on Atorvastatin (for high cholesterol) and Amlodipine (for high BP) which I've been on for over 5 years and the Doc knows about those and says there are no problems of bad interaction.
I'm in the UK on the NHS so not sure what you mean by "the company" - is it insurance company? I called the hospital on-call triage team yesterday who couldn't really help and I'll be calling my Oncology team tomorrow morning to discuss the issue and what to do medication wise.
have had several episodes of dizziness and sickness - NOT on Ixtandi both times 17 years apart - ended in the ER. Turns out that it was a virus in the inner ear. Treatment was Meclazine. Have a Dr - ENT take a look
Well I am new to xtandi also. I started at 80 mg for one week, moved to 120 mg the second week without too many SEs. But 2 days later had similar episode to yours. Total weakness dizziness and virtigo too. The interesting thing was at the same time my wife and I both came down with a slight cough, feverish feelings and congestion. This passed in a couple days for both of us and I feel better. I did not stop Xtandi but went back to 80mg just in case it was a reaction. I will go again in a few days to 120 then on to 160 hopefully but as I reflect , it may have been a quick case of the flu for me.... That symptom was difficult to distinguish!
when I first started Xtandi last March, 2 80mg tablets daily, I had terrible fatigue so I was cut back to one 80 mg tablet daily . Helped a lot. BTW, I was on estradiol patches for three years and am still on them. The combo has bright psa back to undetectable .
Sorry to hear you're having difficulties with the Xtandi at 160/day. Talk with your Oncologist about reducing your dosage to 80mg/day which may avert the side effects you're experiencing. There are studies showing that for some, those that start at full dose then step down, the medication remains efficacious at the lower dose. The Xtandi site also has information for providers about dosage and adverse events. Good Luck🙏
Hell yes! Hi, I've been on Xtandi for 4-5 months. Mostly 160mg, but if the SE's get to bad then 80mg. The vertigo, mine feels like the minor spinal and neck compression, then something gets pinched. Had a Chiro mess with it a few times, minor relief. Laying on the couch sideways watching tv with arm under head, will give me instant vertigo. Posture is more important than ever.
Great videos on Youtube that show easy neck decompression techniques, not snapping shit.
I'm getting Lupron and Erleada. I was taking 4 pills a day of Erleada and started developing Vertigo, reduced to 3 pills and PSA is <0.1. No more Verigo.
Thanks. Interesting because Xtandi crosses the blood brain barrier which is why I assumed it could cause vertigo. I don't think Erleada does cross it though?
I had vertigo on 1000 mg of Zytiga , but mine was not as severe as yours and was resolved by increasing the prednisone from 5 mg to 10. That worked for 3 years. Just switched to Xtandi w/o prednisone and no vertigo 4 weeks in.
So many SEs that just kept increasing and worsening. My husband is down to 1 Xtandi/day and his PSA started rising a couple months ago proving he's castration resistant. Now Lupron/Xtandi seem to be causing minor memory issues as well and we'll discuss options at Jan. visit after bloodwork results a week prior. I read of others doing a "vacation" from meds and I think that's where I'm going. Xtandi info says it can cause dementia as well. No good choices, I'm afraid. MO wanted him to have neuro workup but he shot that down since she previously admitted that no test results would change his treatment.
Thank you but no good options. He has cardiac issues & an ICD and other meds have more cardiac complications. To those here who have no SEs from Xtandi, count your blessings and I hope it continues to work for you. My husband started out @4/day but experienced terrible restless leg syndrome that made him pace constantly, anxiety, loss of muscle mass and fluid retention around his heart that caused trouble breathing. He ended up in hospital for 2 nights w/IV diuretics followed by an increase in daily Furosemide and a decrease in Xtandi to 2/day. This continued to cause great fatigue, trouble sleeping at night, rosacea and finally extreme weakness in his arms that caused great difficulty in even trying to lift them as well as weakness in his legs that made it difficult to go up/down stairs. He's also experiencing some minor (at this point) memory loss that he's aware of. MO then asked if he'd try 1 Xtandi/day until January appt. due to PSA starting to rise after 18 mos. of Lupron/Xtandi. He's refused chemo, radiation and bisphosphanates so I don't know what MO will offer. She also wants to restage via a scan but he can't tolerate lying on his back for any length of time with his arms raised above his head. Going to be a tough meeting. God bless to all here!
A few months back I collapsed. My wife thought I was having a stroke and called the ambulance paramedics. At our local hospital the emergency doctor determined it wasn’t a stroke but benign vertigo. In his opinion it had nothing to do with Xtandi, which I have been on for many years, but low blood pressure.
Must have been scary for your wife! My late dad used to have collapsing episodes due to low BP. They could never find any underlying cause other than maybe too many BP meds (he didn't have PCa).
I'm experiencing this too. Been taking Xtandi for 8 or more weeks. I'm not sure what is the cause but got up to pee 2 nights ago and almost fell down. Then I vomited. The vertigo is better but I still cant hold down food. Neck is weak. Hard to hold my head up for more than 10 minutes.
Interesting. Was the room spinning too? I went back on full dose Xtandi on New Year's Day and have had no further incidences since so hope it was a one-off.
My head was spinning. Still a slight amount of vertigo when I move my head quickly. I ate some plain grain bread toast about an hour ago and keeping fingers crossed no vomiting. Last night no vertigo but again its lurking slightly as I can feel it if I get up to fast. Vomiting has been consistent feature though. Except today only once so far in the a.m. before I even tried to eat anything. I'm sending a message into my MO now.
Feelin much better today. The mild headache, weak neck, achy body, vomiting, and vertigo are gone. I ate something this morning that should be hard to digest (crunchy organic peanut butter & honey on toast and some milk ) and it stayed in my stomach.
Hopefully back to where I was which wasn't perfect to begin with. Since chemo ended last mid December my appetite has been off.
Hopefully this is a one time deal for you as well as for the OP. Thanks for updating the thread, sorry it was because of a SE. I have been on it about 3 weeks ago. It's been fine so far and PSA dropped by half in 3 weeks just hoping I tolerate it well.
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