Apalutamide and extreme fatigue

User

Posted 31 Oct 2022 at 06:25

Greetings everyone,

I haven't posted for some time, and wish that I don't have to today, but my worst fears came true and my dad has been diagnosed with advanced prostate cancer, after years of denial and escapism.

He had to have emergency surgery to clear a blocked urethra about 3 weeks ago (TURP) and a PET scan revealed that the cancer had spread to the spine and ribs.

He was put on Firmagon injections by the urologist, as well as daily apalutamide pills. He lives outside the UK. He has had the first set of injections already and seemed well when he left hospital over a fortnight ago, but after an initial promising 6 days of gradual improvement in walking, etc... he suffered a sudden setback.

He basically suffers extreme fatigue, depression, and loss of appetite.

At his last checkup, they found his potassium levels too high, haemogoblin a tad low (but not treating it at present) and have given meds to lower potassium. He can barely eat, and heaves and groans whenever he is made to swallow anything. The doctor also gave him an appetite stimulant but it has been 3 days and hasn't kicked in yet.

Has anyone had these side effects on apalutamide, i.e extreme fatigue? The doctor seemed to think he would take it well. He was fine until about his 3rd week on it, and then things rapidly fell off the cliff.

Any thoughts would be appreciated - thank you, we're at our wit's end because we're wondering if it's the depression that's doing this.

Worriedwomble :-(

User

Posted 06 Nov 2022 at 16:23

Bouncing an unanswered post.

Dave

User

Posted 12 Dec 2022 at 21:14

Hi--I'm a dad with a lot of the same stuff going on as your dad. I had TURP about three weeks ago myself for a blocked urethra after my radiotherapy, and I've been on Apalutamide for 10 months now. I also take Dutasteride. My Gleason score was 4+3=7 when I was diagnosed in January 2022.

Sadly, I haven't experienced the loss of appetite as your father has and so am as fat as ever (haha), but I can defo relate to the rest of his experience. Depression and fatigue have characterized my journey with PC treatment. I had to take a leave of absence from my job because I could not sleep and was so tired all the time.

There is hope, my friend: 10 months in, I am looking at the end of my Apalutamide and Dutasteride therapy in two more months (actually 7 weeks). I have also felt much better after the TURP surgery because I do not need a catheter and can urinate normally. Additionally, because of the Apalutamide and Dutasteride, my PSA is .001 and 'undetectable.'

What I'm trying to say is that just four months ago was the darkest time of my life. Radiotherapy, Apalutamide, Dutasteride, catheterization, extreme fatigue, depression, no working. Now, I'm feeling better, radiotherapy's done, I can see the finish line with Apalutamide and Dutasteride, the TURP has helped immensely, and I've begun exercising again. I am not out of the woods, but I am not deep in the middle of them anymore, either.

There's a phrase I say to myself a lot these days: "The only way out is through."

Best of luck to your father and to you. We can do this. We can definitely do this.

User

Posted 10 Mar 2023 at 11:52

Thanks so much for your reply!
It's good to hear that you have overcome those difficult times. My dad is no longer suffering extreme fatigue but he has complications with chronic kidney disease brought on by his enlarged prostate - which he ignored for many years - and it turned out that it was the cause of his extreme fatigue. He is now back on the full dose of apalutamide.

It's causing him bouts of depression though, and he is still suffering incontinence although he says he is doing his pelvic floor exercises regularly. He had a TURP, the doctor said the surgery hadn't affected the bladder muscles at all, but suggests that my dad had been using his enlarged prostate for many years to control his urine flow, and so he needs to re-activate those muscles again. He's still using incontinence pads 6 months after his surgery with no end in sight.

It is a daily struggle! Little steps. Best of luck to you.

User

Posted 28 Aug 2024 at 21:54

Have any of you suffered with memory problems as I've been on apalutamide for around 11 weeks combined with Zoladex (started Feb '24)? I have noticed that my memory, concentration and ability to process comples data has declined heavily over the last 6 weeks and thinking of stopping. Tiredness has been an on / off problem and easy to fall asleep with vivid dreams for shortish naps.

(2 bone metastates in pelvis)

Having said that my original Gleason score 3+3+6, PSA never above 7 apart from an odd aberrant one of 9 about 15 months ago was down to 3.2 from Zoladex at the start of Apalutamide, down at 0.5 5 weeks ago and last week's blood test down to 0.025.

User

Posted 28 Aug 2024 at 22:06

I am on appalutamide and zoladex (20 months). I think it has had an impact on my memory. It was not great before, but it seems worse now. I really do have to write everything down in work. Hard to say for sure if it is the medication, but I reckon it is.

User

Posted 01 Sep 2024 at 10:54

Hi,

I have been on Zoladex since my PC diagnosis in late 2021 and more recently on Apalutamide as my PSA was doubling every three months. Brain fog the whole time. I am managing it, but it has slowed me up (or should that be down). I had a couple of sessions with a neuropsychiatrist and a brain scan but was discharged, with my brain fog put down as 'treatment related'.

Initially no major side effects with the Apalutamide, but after five weeks they started to kick in. Fatigue - on top of that I was already experiencing from the Zoladex - and also mild dizziness. The most noticeable side effect for me is stiffness and pain in my joints, especially my hands. I have an appointment with rheumatology, but that is not until May 2025, such is the waiting list. I have my monthly review with my oncologist in a couple of weeks and I will see if I can be bumped up the waiting list but without much hope of that. I think I will have to seek some private treatment before then if this does not improve.

Medroxyprogesterone has helped with my night sweats, so I am able to get a little more sleep than before, although the Medroxy did take about three months before it started to work. I found that chronic lack of sleep has been a factor in both the level of fatigue and brain fog.

User

Posted 01 Sep 2024 at 19:54

I discussed this a few weeks ago with my junior consultant and suggested that coming off it for a few days wouldn't hurt - she felt that a break of 4-5 days once a month wouldn't interrupt treatment. 4th day today and my brain is working as it used to and I have energy back again - so I'll start again tomorrow and monitor it.

Most relieved that the memory and cognitive ability have returned, as some papers I read recently suggested that it does for some people but not for others.

I'm looking to dicuss this with my lead consultant at the Royal Marsden as soon as I can as a possible way forwards for myself and perhaps for others.

Tbh I've explained to junior consultant that I'd rather live for 3-4 years with a brain that's alive and works properly than live for 10 or more with one that doesn't

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