enzalutamide / Xtandi anyone?

Hi all

My husband has been taking enzalutamide for nearly four weeks now. He has had a terrible time, with fatigue, back pain, loss of appetite, weight loss - you name it etc... he is practically bedridden atm, no quality of life whatsoever

Is anyone else taking this drug -and if so, is there any let up in side effects? We really don't know if the drug is causing this, or the cancer

His psa is currently at 250 - but hoping the enzalutamide might bring it down somewhat.

Any input would be gratefully received

Hi Missyj,

I have been on a daily dose of 160mg Xtandi since December 2011, it has been very tolerable. The main ongoing SE I have experienced is fatigue, in the first 6-8 months I had some diarrhoea every couple of weeks, some regular headaches (but not really bad), I get very tired around 7.30/8.00pm and go to sleep for 3 or so hours and then wake up, naturally my wife has given up and gone to bed. I would then have broken sleep for the rest of the night. This is a nightly occurance and puts a strain on our relationship.

I still have my Zoladex (goserelin) injection every 3 months and some of the SE of Zoladex are the same as Xtandi. I cannot loose weight, I am trying to eat a really healthy diet and have reduced my food intake but it doesn't seem to make any difference to my weight. I still have hot flushes, feel the heat and increased sweating.

I still work full time. My PSA was 254 at diagnosis and went down to 3.2 by April 2011. It has slowly increased to 8.1 by October 2012. I had a TURP at the end of October 2012. My psa was 4.3 in November and is back up to 7 mid February 2013. In my case Xtandi hasn't had much influence on my PSA, this was the same as in earlier trials.

 

I haven't had chemotherapy, has your husband had chemo ?  The difference could be the chemo.

Thank you for your responses. I see there is a long thread regarding this drug so will have a good long read after posting this.

Rangertug - my husband has the opposite problem with weight and is losing it rapidly. Constant gagging at even the thought of eating. Yes, he had chemo before starting Xtandi - this is why we are so concerned - we are fast running out of options.

Passages, you husband's symptoms seem to match my husband's. I really do wonder if staving off the cancer at all costs is the best way to go. By that, I mean my husband feels so wretched that I fear he's losing the will to live! I had been hoping that the symptoms might diminish with time - but it's worrying to read that your husband's fatigue is increasing.

We see his consultant tomorrow to get latest psa and results from his bone scan.

So sorry to hear so many going through this evil disease - sending love and strength...

Right now sitting at hospital getting blood. He's been regularly a 10, this month down to 8; with his color and extreme fatigue the Dr decided it was time to get a couple of units. We'll see.

Will have to look that up, never heard of it. Whatmightneed to be done? What's it mean? Hope you hear soon.

It means having too much calcium in the blood. Not sure what they will do - some sort of transfusion I think. They are admitting him into hospital to treat it, so will report back when I know more

Well, it seems his symptoms had nothing to do with the Xtandi - and everything to do with the tumours in his bones throwing out too much calcium.

At least he's in hospital (although still waiting for a bed - three hours after getting here!! Good old NHS!) and the treatment should alleviate his symptoms. You're right Littlenm, a 24 hour flush and then bisphosphanates.

Guess this is a cautionary tale. We assumed it was down to Xtandi - and if it hadn't been picked up and treated, could have been very serious

Love and strength to all battling this monster

Missyj, wow another big jump in PSA - its all such a roller coaster ride that doesn't seem to end. Had never heard anyone mention this before. The one thing nice on here is that in addition to support, we learn.

A long day getting, but no unnecessary waiting, just the process. They felt his color was better at the end. Hopefully it helps, even though I'm afraid a lot of the fatigue is Xtandi.......but who knows and we do have to be so vigilant. Tiring, but certainly worth.

Holding onto positive thoughts for all.
Missyj, that is a big jump. I guess I keep repeating to myself it's just a number. But hard to put in the back of your mind.
I know my husband is over 100 now - we are intentionally waiting until next month to find out all results. This does help to keep that big old number in the way back. I haven't obsessed over it as I usually do but have concentrated on how he is feeling.
Passages, hope the blood helps. It is so worrisome to see them smaller and weaker.
Though my voice wavers as I say this - we will beat this crap.

Zimac! always good to see you!
It's actually been nice not to obsess over the number. I mean we know it's high but not knowing exactly helps us concentrate on other things like how is he really feeling.
I know as we get closer to the appt in April we will both be nervous nellies. But we have been there before.
We hold onto hope. And we will wait until we have the solid information of scans and PSA numbers.
I hope tomorrow goes well for you. Scary not to be on treatment. I am sure something will be decided tomorrow.
Best to you and best to everyone.

My thought are definitely with you today Zimac

And got everything crossed for you today Zimac xx

Agree with littlenm, never apologize. Understand and agree. It is so hard. No appetite, weight loss, weak, and so changed at times and I also fear it's the Xtandi.....but hope it's that more than the cancer. Blood transfusion definitely helped mine, but for how long. Missyj so sorry his treatment didn't help yours. We hope for longer and more vital times. Our hope is still he makes it to granddaughter's West Point graduation in 2014- more far fetched now; but will continue to hope. Granddaughter still will not discuss it - he was more a father to her, retired Army. Spring break ask him to go fishing with her. Obvious memory thing from childhood.
This journey is the pits and worse.