Enzalutamide

[stephaniejRN]

Please tell me what you know about Enzalutamide without copy+pasting from a website. I am so scared for my dad as he just found out his prostate cancer has now metastasized to his bones. What are your personal experiences and what should I expect from here on out? I understand every person is different but I just need emotional support right now.

[Dr_WHO]

So sorry. I do not know about Enzalutamide, but I want you to know that I am praying for the two of you. You are correct that everyone is different. Everyone experiences unique side effects. But please remember the most important side effect is time. Time that you can spend together. It is normal to be scared, but please do not let that take a second away from the two of you enjoying each other.

They just put me on Zytiga and prednisone in addition to Lupron. Some of the side effects are "unique". But I do not mind them as it gives me more time with my wife.

Please know we are all pulling for the two of you!

[ctarleton]

Hello stephaniejRN . I noticed you posted via the Tackle Prostate Cancer part of HealthUnlocked. Tackle Prostate Cancer is based in the UK - are you and/or your Dad located in the UK, or in the UK health care system? If so, face-to-face Support Groups might be available for emotional support for your Dad and for you, too. For example:

tackleprostate.org/find-a-s...

prostatecanceruk.org/get-su...

Meanwhile, back to Enzalutamide, .... I was first diagnosed similarly very metastatic to many bones and lymph nodes in Nov 2013, with a PSA of 5,006, with pain to my lower back. I have been on hormone treatment using Lupron for 3 years and 8 months, plus a bone-related drug called Zometa (zoledronic acid). My pain went away and my PSA responded very well, reaching a nadir of 1.0. My PSA climbed slowly at around the 2 year point. During the 3rd year it climbed from 5 to 95, while I did some consultations, other tests, and some Provenge.

I started Xtandi (enzalutamide) a little over 8 months ago. In 7 months it took my PSA down from 95 to 1.9, so far. It is 4 large white capsules, taken all at once, daily. I take mine in the evening, with about 3 good swallows of water each, followed by a chaser of another 3 good swallows. You can look-up the lists of potential side effects that are put onto the prescribing sheets by the US FDA and the manufacturer, but I can attest that in my case I have experienced few of them, and of those I have felt, have only felt them relatively mildly.

Enzalutamide is not like any harsh chemo for me. (The sexual libido side effects and secondary sexual characteristics like body hair changes mostly all happened during the first 2 years while I was on Lupron alone.) No nausea, no aches or pains, etc.

Being on Lupron starting at age 65 I was already experiencing a slow decline in peak strength and energy while living with low testosterone levels "for life". Adding Enzalutamide has created a little more light fatigue, but more along the line of the trajectory I already had on Androgen Deprivation Therapy with Lupron. I'm 69 now, and walk a mile or two each day, and do some light yardwork. My hot flashes have remained about the same, and are tolerable, for me. My skin has dried out somewhat more since starting Enzalutamide, but nothing painful or unsightly, and easily remedied with occasional lotion.

(Enzalutamide is very expensive in the USA, and required close preapproval by my insurance coverages, and handling through a Specialty Pharmacy that delivers it directly to my home. My insurance company will be charged somewhere around $110,000 / year for every year I remain on it. Fortunately, it is on the Formulary, and my copay is practically nominal, in comparison.)

I have two grown daughters, myself, in their 40s. They, too, were really worried about me, particularly during the first 6-12 months after my "incurable" in the long term, but "manageable" in the shorter term diagnosis. After a while, though, it has turned out to be an opportunity to become closer than ever. More hugs. More intentional and meaningful visits. A better focus on who we are, and how we feel about one another. One of my daughters who lives nearby even drops in from time to time at a Cancer Support Group that I attend, and shares whatever tears, fears, and laughs that may come up.

One important thought I might leave you with is this. Your Dad may not ultimately be "cured" of his advanced metastatic disease, but he can certainly be "healed" in many ways, day to day, and month to month, .... and so can you!

If in doubt, just dive in there with your Dad for a Big Warm Hug.

Sometimes Hugs are the absolute best medicine.

Charles

[JoelT]

Enza is a drug that is used after a man has failed first-line hormone therapy, or their PSA goes up despite their being castrated from the hormone therapy. It blocks the cancer's ability to utilize the androgens that are made by the Adrenal Glands and the tumors itself. Think of it as being Casodex on steroids.

While on Casodex you should continue on hormone therapy to continue to stop and or block testicular androgen. Basically, it provides a broader blocking of the androgens.

Side effects vary from one man to the next. One of the most common one (not the only one) complained about is severe fatigue.

I suggest that you go to the Cancer ABCs advanced Prostate Cancer Blog and sign up for regular updates at cancerabcs.org/new-advanced... While you are there you should also check out the rest of the webpage which offers many tactics and suggestions on how to live a good life with cancer.

Joel

[Daddysdaughter]

Hi, my father has been on it since September. I was in the same situation as you, frightened and afraid. The side effects are different for everyone. Some more mild then others. For my fathers experience on the full dose he became extremely tired, fatigued, and somnolent at times. The first month was the most difficult. After the first month he figured out the fatigue, taking extra naps, walking daily to boost energy. Month #2 he became very depressed and started to experience chest pain but had nothing cardiac associated.(i know makes no sense) it made him even more upset because he didn’t know why he was feeling that way, and he became more depressed. His PSA stayed the same there was no significant drop .4.1 to 4.4 but since all these side effects his quality of life was decreased. So the Oncologist recommended he decreased dose to 3 pills. Once he did that my father was back to normal with some level of fatigue but NOT as bad as before. But after a month of decreasing dose his psa went from 4.1 to 6.44.. With that said, he know he needs to just pull through it and take the medication.