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Newly diagnosed Advanced prostate cancer

User
Posted 02 Sep 2025 at 23:54

Hello All

54 years old, I went to the GP due the frequency of going to the toilet.

PSA 42.6ugL

Had the MRI scan 17/05/25, results showed Prostrate gland appears normal in size and demonstrates diffuses dark T3 signal involving both lobes more evident on the left,

Normal MRI of the lumber spine.

No Features to suggest bony metastasis.

Multiple bilateral pelvic sidewall lymph nodes largest on the left.

Had Biopsy, CT Scan and Bone scan and I was told that I had Gleason score 9 and that I needed a PET Scan  

I have found that the waiting is long but I am managing to keep my mind active by continuing to work so far but the poor sleep due the frequency of toilet visits makes it more difficult.

Each time we get some news or results both my wife and I get pulled back into the reality that this is actually happening. 

Received results of PET scan in June that cancer had spread to multiple lymph nodes and was now incurable, I also needed to have an MRI of my liver as there was something showed up there, then Started Relugolix and told I would be seen in 8 weeks. At the next appointment I was given some positive news that whatever was on my liver didn’t look like it was cancer and they would leave it alone. I was then given Aplautamide to be taken in addition to the Relugolix. 

Started having some side effects in that I can’t sleep and get really bad restless legs so advised to stop the aplautamide until the side effects stop then start taking just 3. 

User
Posted 03 Sep 2025 at 09:42

Originally Posted by: Online Community Member
Received results of PET scan in June that cancer had spread to multiple lymph nodes and was now incurable

Hi Nick. 

Welcome to the forum mate.

I'm sorry, particulary with you only being 54 years old, to hear about the spread to the lymph nodes.

Although I was Gleason 9 (4+5) and it had broken out of the prostate capsule, I was fortunate that, up to now, there's no indication of further spread.

I therefore have no experience of the treatment you are having or the side effects. However, there are plenty on here like Chris, who are having similar treatment to yours and I'm sure they will help.

Best of luck, mate.

User
Posted 03 Sep 2025 at 13:04

Thanks Chris, I also moved to taking them in the morning prior to stopping but it still didn’t help with the sleeping. You messaged me about a Zoom link tonight but I can’t reply to DM so I was hoping you could share the details here. 
Thanks Nick 

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User
Posted 03 Sep 2025 at 08:17

Nick I started apalutamide around 15 weeks ago and had the restless leg and not sleeping. I had a conversation with my cancer nurse about quality of life versus quantity. She said I could drop down to 3 or even two tablets. I dropped down to two and started taking them in the morning. I also had some acupuncture, I saw the oncologist a couple of weeks ago and he said it was my choice and wrote the prescription for three tablets a day  but I still got 4 a day. I am considering going back onto 4 a day.  I am finding the tiredness and brain fog difficult to cope with and physical damage to my knee means hard exercise is slightly more difficult. 

Thanks Chris 

User
Posted 03 Sep 2025 at 09:11

Hi Chris

Thanks for your reply and sorry your going through this also, so are you still getting the same issues with sleep and restless legs after dropping to 3 tablets. I was advised to stop taking them and when the side effects ease off to then start taking 3 tablets. 
I am struggling with day to day stuff as I am so tired from not sleeping and not relaxing in the evenings because of the restless legs. 

Thanks

User
Posted 03 Sep 2025 at 09:42

Originally Posted by: Online Community Member
Received results of PET scan in June that cancer had spread to multiple lymph nodes and was now incurable

Hi Nick. 

Welcome to the forum mate.

I'm sorry, particulary with you only being 54 years old, to hear about the spread to the lymph nodes.

Although I was Gleason 9 (4+5) and it had broken out of the prostate capsule, I was fortunate that, up to now, there's no indication of further spread.

I therefore have no experience of the treatment you are having or the side effects. However, there are plenty on here like Chris, who are having similar treatment to yours and I'm sure they will help.

Best of luck, mate.

User
Posted 03 Sep 2025 at 10:43

Nick, moving from taking them at night to taking them in the morning helped, or it could have been the acupuncture, the restless leg probably disappeared with being able to sleep. I can still fall asleep during the day, I also get wiped out after a small amount of activity. I also get the hot flushes, again having acupuncture for those, they are not to bad. I am also getting pains in the joints but that may because of statins and more blood pressure meds. How was your Blood pressure after starting the apalutamide. I am also on 3 monthly decapeptyl injections.

Thanks Chris 

Also sent you a message.

User
Posted 03 Sep 2025 at 13:04

Thanks Chris, I also moved to taking them in the morning prior to stopping but it still didn’t help with the sleeping. You messaged me about a Zoom link tonight but I can’t reply to DM so I was hoping you could share the details here. 
Thanks Nick 

User
Posted 03 Sep 2025 at 15:25

Thank you for the link Chris. I will take a look later. 

 
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