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Apalutamide, holidays and consultants appointments

User
Posted 13 Jun 2026 at 10:18

Husband has locally advanced and is on Decapeptyl and more recently Apalutamide. The latter was delayed due to administrative errors and lack of joined up care, however on track now. 

He has been taking it for nearly 4 weeks and we are off on holiday in a few hours.

He rand and got next prescription a few days ago. That seemed to trigger a phonecall offering him an appointment yesterday to monitor how it's going. This is the normal protocol and I was wondering how they were going to deal with this.

We haven't just booked this holiday randomly. We were going to cancel but after discussing it with a different consultant he said no, go ahead, it will fit in well with the Radiotherapy. So it's been on his notes since then and he's mentioned it at any opportunity 

Anyway he went for a blood test a few hours after they rang. Went to appointment yesterday. Saw same consultant as previously, unusual. His named CSN had appeared. She wasn't there before. They were both quite friendly. 

I am thanking God and anyone else out there that he seems to have very few side effects. He's been on ADT since Dec. 6th. No fatigue no aches etc etc. Yes he does have ED. GP gave him Sildenafil upped to 100mg with Apalutamide. I can imagine he may get more symptoms over time and I'm not blasé about this. But he is taking steps to mitigate the ADT. His BP is good. 

Anyway best of all his PSA is now 0.2. A really good result overall as he does have a prostate. 

I am fairly certain this flurry to provide appointment etc was following on from our email to PALS a month ago and their escalating it immediately to complaints which resulted in husband collecting, Apalutamide from the hospital pharmacist the next day. The consultant we saw yesterday had rung to apologise for husband "slipping through the cracks" 

 

 

User
Posted 13 Jun 2026 at 12:27
Hi antoinette

Enjoy your holiday - it will do you both the world of good!

I have been on HT since last October and have had Chemo (just finished). We are away on Monday for our first break this year - and boy are we looking forward to it!!!!

Enjoy

Best wishes - stay positive

CeePee

User
Posted 13 Jun 2026 at 12:44

Cee Pee have a really good holiday x

User
Posted 13 Jun 2026 at 19:27

Antoinette, if he his anything like me I would expect that the PSA will decrease even more over the next few months. It may be that the side effects increase. I have settled on120 mg, (2 tablets) side effects are minimal. PSA less than 0.03 down from 13.4 before apalutamide. BP is still a major issue. Labido is low but not non existent, however it takes some motivation. 

Have a great holiday . 

Thanks Chris 

User
Posted 13 Jun 2026 at 20:42
Have a good holiday, anyone going through this (and their family!) deserves a few treats.

And yes, they do seem to treat those who have raised PALS issues with a little more attentiveness subsequently.

User
Posted 13 Jun 2026 at 21:56

enjoy your holiday! I hope you can relax and have a wonderful time! I expect you will appreciate this time together all the more and I hope it will be very special.

User
Posted 15 Jun 2026 at 08:32
Hi I had to reply! We always appreciate time together! Holidays are no different. Been together a long time. Still lots of passion. We love our life at home too. Xx
 
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