My husband has been on Xtandi since last November first starting with max 160mg. Head felt like it was in a vice. Oncologist put him down to 3 pills but still suffering, Now on 2 and he still can't shift the daily headaches,( he can tolerate most of the side effects but the constant headaches are a big issue to the point its hard for him to function) we know these meds enter the blood brain barrier so this most probably is the cause.Anyone out there have the same issues, if so any remedies.
Thanks
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Knittingque
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From the original AstraZeneca Bicalutamide paper it becomes evident that the sensitivity of the individual varies 10 fold, that is the steady state drug concentration of the highest sensitive to the least one, among 114 measured was 10:1 and over. Personally, my Bicalutamide current dosage is 1/10 the standard one and yet it does its job as expected. Consequently, your husband may try lowering dosage to one tablet a day and monitor to check if sufficient.
Thanks for your reply yes going to 1 is an option we are waiting new psa test on Monday to see what it is looking like since we have reduced to 2 from 4 then a decision will be made or maybe switch to Darolutimide as that does not cross the blood brain barrier. Have a great day.
Please note that the half life of Enzalutamide is on average 7 days. This translates to waiting min 1, better to 1.5 month after dosage reduction to achieve steady state blood concentration. Then and only then you may get a reliable picture of how the new dosage fares. Good luck with either option.
Thanks for your response, this is something we are discussing and are going to talk with the Onc on 30th.
My husband did do zoladex combined with the Xtandi and knowing this would be for life he decided to have an orchiectomy in March this year and the surgery went very well.
His last injection of Adt was the end of January 2024 we know it takes sometime for the adt to completely leave the system.
May l ask have you been using darolutimide and if so what side effects you had on that drug, l know everyone is different.
I used Darolutamide and Orgovyx for a year before embarking on my own BAT protocol. So for that year it wasn’t to bad but it did start getting worse around the 9 month mark at the same time my estrodiol E2 dropped to single digits. Symptoms then were skin healt and irritability. I was surprised it took 9 months to finally drop my E2 to that level.
So all he needs is daro, but adding a transdermal estrodiol low dose might help bone, ligament, brain, skin health. Always measure E2 if taking E2 patch. Keep it around 20pg/ml
He has been using sinus meds to combat it but it dosn't last, we tried alergy meds they didn't work as well Thank you so much for your message, good luck and God speed.
It probably has nothing to do with crossing the blood-brain barrier. Most headaches (other than brain tumors) are not caused by brain dysfunction- the brain doesn't have sensory neurons. I had brain surgery while awake and alert.
So as the headaches have only begun since taking Xtandi what suggestion would you have other than (brain tumors)! pray tell ( very insensitive response Sir)
What is insensitive about informing you that headaches probably have nothing to do with crossing the blood-brain barrier? Aren't you relieved that his headaches are not caused by an Xtandi-caused brain dysfunction? OK - believe whatever foolish thing you want to then.
yes. I had the same problem. It ended one day with the worst headache of my life associated with severe systolic hypertension of 190.
I was admitted to oncology day unit and over the day it did gradually settle. I should have had urgent MRI on admission but this was delayed until after the headache resolved and was normal.
However the strong suspicion was that this was an episode of PRES- posterior reversible encephalopathy syndrome. The name is somewhat misleading as in some cases it is not reversible and causes haemorrhagic stroke. PRES is on the patient information leaflet as potential side effect.
Check BP, stop the drug and get oncologist to consider this carefully.
His blood pressure is being treated since taking Xtandi after it shot up a month after starting the drug. He was put on Amlodipine but that caused edema and has now been given 12.5mg Spirolactone which is a diruretic as well as blood pressure drug together with a 5mg instead of 10mg of Amlodopine. This is working well. But the headaches persist.We speak to the Oncologist on Friday and will definitely be bringing this to the table.
Thank so much for your response this helps enormously.
Sounds as though he should stop the enzalutamide and switch. I found apalutamide caused the same but less severe problem and came off the lot - decided risk of stroke or other event was not worth it. Good luck!
Maybe ask the oncologist about adding 5mg Prednisone to daily regimen... Until then , depending on the severity, ask if you should stop the Xtandi until seeing the doctor. (See Data sheet regarding PRES)
If you can recall how many days/weeks passed from the start of taking the drug, at the 160mg dosage, until the headaches were first detected, I will try to guesstimate his specific tolerance bellow overdosing.
Yes, but not take it to the bank. The assumption is that each individual has a different half-life which may be more or less than the accepted average one. In the Bicalutamide AstraZaneca study there were values over 20 days which is X3 the average of 7. This, as the daily quantities add up will end up to an overdose. It takes a lot of guesswork to select a concentration point where the body will react, but this serves also as a hypothesis test. For example, if someone takes 160 mg for 2-3 days and boom headaches are noticed it certainly these aren't caused by overdosing. Something else is the cause.
It took 6 weeks from the first 160mg dosage, then on Xmas Day 2023 the BP skyrockected and then headaches started. It was like his head was in a crash helmet 2 sizes too small. We dropped dosage to 2 and still head felt like it was in a vice. Since have been on 2 BPmeds which help but still trying to tolerate headaches
Six weeks come in support to my theory regarding overdosing.
In your husband's shoes and mind you that I am a retired engineer not a doc, I would do the following to find out out my personal maximum tolerable dose (MTD). Two options provided that at this time he has been on 2 capsules/day for the last 1.5-2 months.
Option 1:
Fast track, sounds risky but it isn't
Stop taking any capsule for up to 2 weeks and monitor for headaches going away. At this point in time I would calculated the MTD down from the steady state of 80 mg/day Enzalutamide.
Option 2:
Most people would prefer as appearing to be more conventional/safe
Reduce dosage to 1 capsule per day and wait at least 2 months for headaches to go away. If this is observed earlier, up the dosage very slowly adding half a capsule every other day and wait at least 2 weeks for next upping step. Split the capsule or take two every 4 days or twice a week on fixed days.
In either option, monitor for the efficacy of the drug as per your doc's methodology.
Hi there, you are a great help and we understand your strategy, thank you so much for taking the time, however l apologise for getting things a little mixed up, My husband did after 3 months drop to 3 Pills, then no relief so Onc said drop to 2 which l havd been taking for 6 months, slight relief, not much, then just 3 months on after my Onc was supposed to call for update, he was sick so another Onc spoke to him from his team.
She told him to go back on 3, He explained the headache situation and she said drop back to 2 if symptoms persist ( hello whats going on, done that, been there), headaches get worse, dropped back down to 2 three weeks ago, still headaches. This PRES side effect is worrying to say the least.
We have stopped the 2 pills as of last night, his headache is still lingering but a little easier, he only had to take 4 extra strength Tylenol with sinus pain med!!got some relief so far today.
We are monitoring this until Friday when my Onc calls and we will discuss and ask to switch to Darolutimide and see what happens, from what l read it is effective but has side effects, (what dosen't) but if he can just not have the headaches he can manage other issues, he is already doing that after 12 years of PC.
Even though xtandi quickly lowered my PSA, the headaches and high BP levels were of great concern. Mo switched me to zytiga and, cardiologist put me on 2 BP meds. I have been undetectable since January 2023. I also get lupron injections every 6 months. Headaches and BP issues are gone. That said, TA and others have stressed on this platform that, we tolerate these medicines differently. Best to you and all the warriors here. Be hopeful, as the medicines that will cure each and every one of us, are coming soon.
My oncologist, Dr. Sartor prescribed Celebrex for my headaches from Xtandi, it helped greatly. I take it twice a day. Your husband is probably monitoring his BP, which Xtandi can affect and cause headaches but thought I’d mention.
Headache is a side effect that the manufacturer states, with an occurrence of 9-12%. Consider changing to another medication, especially since the headaches are quite severe and seem intolerable.
Nubeqa will agree with him. I had the same problem with Erleada
Thanks to all of you that have taken the time to respond and given some great solid information on my question.It's always so uplifting to know this site has very caring people.
My husband and I wish you all the best on your individual journey with this dreaded disease. Keep the faith and stay positive.
would Aberaterone be an option for you? I’m on that and Prednisone 1000 mg / 5 mg and the only time I get a headache is if I’ve had a few alcoholic beverages
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