Enzalutamide

Going keep taking as long as able...

Hi what time of day do you take the enzalutamide tablets? What have you found best????

I'm taking before bed but not sleeping or being woke up by restless legs and other??

Yo dude.

Started the enzalutamide

Spoke with my boys(most awful thing I've ever had to do...)

1st week i took 4 tablets just before sleep, read book, if I missed that go to sleep slot I couldnt sleep for hours....if I got the sweet spot and go to sleep is wake up with restless legs, uncomfortable and couldn't get back sleep.....crap side effect! Just like an opiate withdrawal.but without taking any opiates for many years!

2nd week seemed ok ish......sleep problems, then add taking my physical power? Hard to explain but swimming in sea against tide and didn't have that grunt of power to get Back to shore.....

Had breath, lungs, but no grunt??? My brother had help me get back to shore.....

Then today day 12/13 most of day feeling spaced/disconnected/ not with it but weird and bit nauseous (like a acid trip maybe?)

But ive made a deal and I'll do what I can with help.

What's been your experiences

You've done 12months, I only done 12 days and I'm considering death as the better option!!!

Hi Troxly

Read your post, I’ve been on enzalutamide for around 27 months now, when I first started, it realy spaced me me out. My head was in a different place, like I was moving but my body was not.

I told the specialist nurse about this, after a her having a discussion with the head guy, I dropped down to two tablets then three then four, still get the aching joints joints, and light headed now and then but not as bad as first time.

By the way, the restless leg syndrome is a devil, I was prescribed gabapentin helped very much.

Stay safe

Joe

Hello Troxly, I had all them Pains and emotions aswell as I'm sure alot of people have, you just have to keep swimming mate haha it does get easier if only slightly as your body adjusts. I am 17 months in now since diagnosis and am feeling better. I do have pains, aches and mental challenges but I am managing them, I am back at work part time, spending time with my family on holidays abroad and just trying to live in the present moment. I have found a few different things that work for my mental and physical state and I hope you can do the same. I would say first thing first is try to speak to someone through Macmillan or on here, someone who is not a friend or family member as I found that the best. We love our family and friends dearly but as men we are never going to tell them everything that we are feeling, pain wise or mentally and that is what caught me out, quite recently in fact. Take care 

Yo Paul what meds/tablets are you taking at mo?

Do you take anything other than the hormone injections and enzalutamide?

Anything for the side effects?

My treatments are 

4 tablets daily - enzalutimide

Every 28 days - Zoledronic acid bone strengthening infusion and blood tests.

Every 6 months - Decapaptyl 22.5 mg HT injection.

I have to take 2 daily chewable calcium/VitD tablets because of bone strengthening infusion.

I take a supplement called Pomi T, 2 tablets daily.

I take 1 evening primrose for night sweats, not sure it does anything though haha.

I sometimes take Temazepam to help me sleep.

I have 3 ice baths a week to help ease my joint pains and aches and have cold showers. I do the wimnhof method breathing exercises and have reiki. These really help my mental state.

Hi Troxly, the final solution looks good when your first diagnosis, and all the side effects start kicking it, but it's not as good as it seems, the side effects do decrease slightly over time, I take all my meds with my morning cuppa, I've had acupuncture to help with the side effects.

Living with side effects is better than your family living with out you.

All the best Ulls 

Hi Clive

My husband was diagnosed a year ago - stage 4, advanced prostate cancer. Spread to pelvis and spine. He started on Enzalutamide at the same time as having the Zoladax injections every three months and a course of radiotherapy. His PSA went down rapidly from 196 (I know) to its current level of 0.01. He's lost a lot of muscle tone, he was very tired during the radiotherapy and I'd say, slightly depressed. Although given the diagnosis, who wouldn't be? He's had very bad hot sweats at night and less so, during the day BUT - he's alive, has recovered a lot of his previous energy and seems to be less depressed.Although I think he's made an effort to not show that to me.  He gets tired more easily than he did before treatment started and he still gets hot flushes but they seem to be getting less frequent.  I know that at some point the Enzalutamide will stop working, from reading this forum it seems that it might be around 2 years from now if we're lucky. Then we'll hear what the next options might be. I've now gone into a period of denial pretty much, because he's doing so well and I've convinced myself that by then there'll be another miracle drug available. Then at times, I'm reminded of his condition and have to have a stern word with myself to hold it together. But I'd say, Hurrah for Enzalutamide. 

Hi Joe,

You've kindly responded to me before. My husband diagnosed just over a year ago - stage 4 PC, PSA went from 196 to its current 0.01 - which is fabulous.  I've been off the forum for a while - in happy denial for a few months as husband responding so well to treatment. The death of Bill Turnbull announced this morning, changed that in an instant. So back on duty again. Those vitamins you mention - I'll look them up. How did you convince your doctor to prescribe the calcium tablet? They're always so sniffy about anything remotely alternative in my experience!   You are an inspiration to many of us on this forum I suspect - you certainly are to me! Thanks Joe.