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meanstoanend Asked December 2021

Is anyone here familiar with Xtandi (enzalutimide) for unsupervised cancer patients?

I'm a caregiver for a patient who is left alone at home quite often. He's on bicalutimide and has done well on it. I do not know the rationale for changing the medicine to Xtandi.


It comes from the specialty pharmacy. As I read about the side effects I saw that it can cause seizures. It can also cause patients to fall.


For reasons that are complicated, it's highly unrealistic for him to be under constant supervision every day. He still drives and takes off without telling anyone where he's going and is gone for hours. He's stable enough to know where he's going and how to get home and yet is still forgetful. He still cooks his own meals and this requires him to be alert. I'm afraid for someone who would be cooking and driving if they might be at risk for seizures. I intend to talk with his doctors because I think they're making a mistake. I think it might be dangerous to give this to patients who are not supervised around the clock. I can't stay in the same room with him all the time, nor can I stay with him all day and all night.


He needs to go up and down the stairs in his house which at this time is fine with his increase in appetite and his weight gain and since he has not fallen for a long time.


I'm afraid of letting people who I don't know come to take care of him.


Has anyone else here had experience with this drug? I could not find any information about how many years it's been used.

Eddieatlarge Dec 2021
Hello, I've been on the same drug regimen for about 4 or five years and presently taking Xtandi for a year or so. The drug is effective, but I had some concerns initially and questioned everything about it. As time goes by there has been no reaction and I am active, working and doing the yard work and some maintenance. I don't have cancer beyond the prostate with numbers less than ( 1 ) but I do have other concerns. Hope this helps.

JoAnn29 Dec 2021
I think you should contact the Dr. who prescribed the medication. Tell him what you have said here. Or write him a letter with your concerns. HIPPA does not keep you from informing the doctor about him just he can't discuss your client's health.

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meanstoanend Dec 2021
It scares me to think what might happen if he ended up in that 1% of patients with seizures since he still uses the stove and still drives and takes the stairs.
I feel like so many cancer patients on these meds are probably no longer driving, no longer using the stove and are living strictly on one floor and are under constant supervision.
When I think about this and remember patients from years past, I feel guilty and feel that I should protect this one's safety.
I hope the medical team understands this.

cwillie Dec 2021
From what I've been able to glean this is a form of chemotherapy for prostate cancer.

According to Wikipedia
"Enzalutamide was first described in 2006, and was introduced for the treatment of prostate cancer in 2012. It was the first second-generation NSAA to be introduced. It is on the World Health Organization's List of Essential Medicines."
The article also states
"Seizures have occurred in approximately 1% of patients treated with enzalutamide in clinical trials"

I think that the need to list every possible side effect should be familiar to anyone who has ever seen a drug ad on TV or in a magazine, while we need to be aware we shouldn't worry overly much about the ones that are incredibly rare.

I hope it helps him.

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