Treatment experiences with Enzalutamide

Hi Enya,

Not sure if my experience helps or confuses. I was admitted with a PSA of 3,900 in May 2022 and had emergency radiotherapy and numerous medications that I was too ill to take note of. The oncologist suggested that I just had pain relief but I went for  chemotherapy over Christmas 2022/2023.  This was followed by digarelix injections which dropped the PSA to single figures. Scans showed a great reduction in active cancer cells on the bones.It seemed to work well until early this year when the PSA started to climb and I started Enzalutamide. This seemed to work for a month then the the PSA started to climb again and is now around 29. I seem to be unusual as Enzalutamide works well for most people. The side effects seem to be an amplification of the Digarelix side effects and not too bad except the fatigue which 'attacks' me and can be a real problem. Apart from that I've put on weight, have cravings for sugar and the boobs are noticeable. Otherwise I'm fine. There are published papers showing that chemo after Enzalutamide has started prolongs its effectiveness. 

All in all I'd go for adding the Enzalutamide to the Degarelix as it seems a well proven route across UK and USA.

Best wishes

Hi there thank you for that. We discovered on Wednesday that his psa has gone up to 1500 and the digarelix although it has lowered his testosterone to 0.4 it is nit bringing down his psa so now I jave no idea what the plan will be! 

I'm not a doctor, but my reading suggests that chemo is called for now. Chemo made a big difference to me and wasn't a bad experience. Don't panic and keep positive. Best of luck

We have 2 holidays coming up one family one in September and his dream holiday in November, he didn't want to start chemo before then as it lasts for weeks at a time doesn't it? He is talking about asking the oncologist if they can give him something else until then and if he can start the chemo in December, in his mind is 4 months going to make much difference? He is gutted that the first treatment has failed so early on his journey! 

Usual is 6 sessions - one every 3 weeks.. Time to talk to oncologist asap. Only you can decide, but that is a very short doubling time so you do need to act now. Best wishes

Helllo Enya52 

Just a quick one  - we all need a holiday - you may well find this other thread worth joining - here's the link:

Travel insurance forum for cancer patients 

I do hope you get to speak to the oncologist sooner than later to formulise a treatment plan.

Best wishes - Brian.

Thank you very much, he is having the biopsy on the 17th July, do the results take a long time to get back? 

Good Morning Enya52 

The biopsy results take between 3 and 4 weeks on average.  It depends on your hospital trust and how busy they are.

I would think in your case it might be worth asking the consultant if they can arrange a priority in your case due to his increasing PSA.

Best wishes - Brian.

His starting psa in April was 1346, he was diagnosed and started digarelix then in June 1400 and July 1st 1540! Is there anything other than chemo that will stop the psa going up and up? I don't understand why it's still increasing when his testosterone is 0.4! He has no pain or any other symptoms of anything! Had no side effects at all from the digarelix, it's not making sense. How accurate is psa testing? Also rarer cancer cells don't usually increase psa by this much, I'm stressed just thinking about it all! 

Good Afternoon Enya52 

You are like me here - there isn't a simple answer. My only thoughts on this are that he's got an aggressive cancer which the Hormone Therapy is trying to keep at bay but his PSA is still rising, hence the need for the biopsy to see exactly what they are dealing with.

PSA testing is accurate but not fail-safe. As I said in my earlier post I think it's important to contact his Consultant on Monday or at least his CNS (Cancer Nurse Specialist) and see if you can arrange an urgent meeting and biopsy.

Please let me know how you get on on Monday. 

It may be a good idea to contact our support line on 0808 808 00 00 (8am to 8pm 7 days a week) for some additional help with the worry and stress.

Best wishes - Brian.