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Apalutamide - Fatigue Side Effects

User
Posted 26 Nov 2024 at 18:19

Hello!

My wife told me to post this thread to gain a little in-site as to what others afflicted with PC think.

I am on Prostap, Apalutamide, Cyproterone Acetate, Adcal D3, Lansoprazole and have been for 15 months. The fatigue side effects are proving debilitating having to sleep up to twice during the day and still going to bed at 8:45 (1/2 time during the football).  Nights are not particularly productive as I suffer from nocturia due to a reduced size bladder (to the size of a plumb!), visiting the toilet 4 to 5 times every night.

My oncologist described my fatigue as 'multi factoral', but suggested I come off the apalutamide (120mg - 4 tablets every morning) for 2 weeks, look for improvements in my energy levels, then go back on 3 tablets a day if there were marginal improvements.  If no improvement detected over the 2 weeks, then just go back on to 4 tablets.

My oncologist was clear that I will still be on the apalutamide whatever the out come of my experiment, but not sure as to at what level of dose.

When you are told that you need to take this medication for the rest of your life..... and then 15 months later told that the dose could be changed.  It is just a 'mindset' on my behalf. What if.... in 6 or 9 months time I get a concerning PSA blood test.  Will I blame myself for coming off the apalutamide, if only for 2 weeks, or a reduced dose.

Question:

Has anybody tried coming off apalutamide for any length of time if only temporarily? And did that have any significant impact on your quality of life?

Thank you

User
Posted 27 Nov 2024 at 11:47

Hi,

I was on 120mg daily Apalutamide up until about ten weeks ago. I stopped because of severe joint pain - a common side effect. Since the start of my PC treatment I have been on three-monthly Zoladex injections, a side effect of which is also fatigue, another being night sweats that make for a disturbed sleep pattern. It is difficult to say whether the Apalutamide made the fatigue worse. I am on Zoladex for life, so I have to factor fatigue into everything I do.

Medroxyprogesterone has helped considerably with the hot flushes, and a steroid injection from the rheumatologist has likewise helped with my joint pain. Fatigue, though, is a constant. I find that keeping active helps a little, and forcing myself to keep regular hours (without naps) helps some more. Physiotherapy also helped.

I will need to decide within a few weeks whether to go back on the Apalutamide. It has been very successful at lowering my PSA. My oncologist has suggested trying it at a lower dose, and now that my joint pain has lessened, I am open to the idea. I should add that I am 77 years old and three years into treatment.

User
Posted 27 Nov 2024 at 16:30
Thank you for that Hieronymus.

I developed shoulder pain after a year, but the oncologist says it's not the hormone therapy! I am just seeing a physiotherapist for some basic exercises, along with the pelvic floor exercises and for me I have a faulty right ankle for which I have exercises. My overall thoughts are that HT is evil and 'eats away at your soul'. Fatigue is part of the package and I am 54.

Thank you and take care.

I8toys.

User
Posted 30 Nov 2024 at 03:16
You can close this conversation down now.

My next supply of Apalutamide turned up today. I was taking 4 x 60mg tablets every morning so I could reduce the dose. The NEW supply of Apalutamide comes as ONE tablet 240mg in size. It's going to be like swallowing a pessary when I start these next week! So no chance of reducing the dosage.

Yet again I have no choice in my treatment other than 'to take or not to take' that really isn't a question.

User
Posted 30 Nov 2024 at 10:29

Hi i8toys. If the tablets are solid rather than capsules, did you know you can pick up a pill splitter from most chemists?  You also have the option of asking for the pills to be replaced by smaller dosage ones, without needing a new prescription? (We’ve had to do it on a few occasions in the past for different reasons, and the pharmacists have been great about it.)

 
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