Request for certain medication best way

User

Posted 07 Apr 2026 at 09:09

After briefly research I feel husband would be better on Darolutamide than Apalutamide. I have the following reasons

1. GP is currently stabilising his BP already . This is why starting Apalutamide has been delayed. I am very concerned about this.

2. We currently support our son 45 who has Schizzoaffective disorder. He is stable and well and volunteers and drives etc. Highly intelligent and has high expectations etc. Husband is his rock as he often needs "moral support"

3. We are supporting our daughter and 2 granddaughters, 7 and 4. She recently bought her own house and separated from her partner 4 months ago.

I feel I want to do as much as humanly possible for him as he is a wonderful caring person by nature. I don't just sit back by the way: I'll do anything I can with him.

How can we ask for this before his next appointment? He can ring his CSN but never gets through to same person. Oncology just don't seem to have any interest in you as a person. Not once has he been asked How are you? How are you doing?

User

Posted 07 Apr 2026 at 11:27

This is his oncologist's decision, but hopefully done in consultation with you. Although Enzalutamide, Darolutamide, and Apalutamide are all broadly similar, there are subtle differences, but also differences in exactly what stages of treatment they're permitted to be used, and it may be that Darolutamide isn't funded by the NHS for your husband's current situation.

Note that once started on the treatment, you can only change if it gives unacceptable side effects, and then only in the first 3 months, so make sure you talk with your oncologist quickly.

Edited by member 08 Apr 2026 at 03:09 | Reason: Not specified

User

Posted 07 Apr 2026 at 11:56

He has locally advanced PC. So far communication is dire. As far as we know he has no particular oncologist. We have seen on on the first appointment. Dire. Next we've seen the same man twice. He deals with radiotherapy. He seems reasonable and it was reassuring to know we would see him again re Radiotherapy, but not the medication. He has had one appointment cancelled, next one is in 3 weeks time. We are only guessing the Apalutamide is the reason for that. There is no hint on the appointment letter or who you will see. It's just a certain clinic.

To speak to his so called allotted CSN he has a number to ring. He leaves a recorded message on that line and someone, anyone, has not yet been the named nurse, does get back to you later in the day.

The last time he rang re the Apalutamide a nurse got back to him and said he would be rung up by pharmacy sometime and could collect it there when he'd be given Apalutamide education, before 24th March. I said that sounds like rubbish. That's exactly how it was as its now April 7th and he's heard nothing.

User

Posted 07 Apr 2026 at 19:40

Antoinette, I am only on 120mg of apalutamide, decapeptyl, four blood pressure meds and antidepressants. My blood pressure this morning was 127/73 and I am not really suffering with any side effects. I did double dose my self with apalutamide in the last 24 hours and even that only gave me a small amount of fatigue. I expect the doctor will reduce the blood pressure meds in the next couple of weeks.

Thanks Chris

User

Posted 07 Apr 2026 at 20:03

That's brilliant. His BP isn't awful it's borderline but he is on 2 medications. I'm not surprised after all the long stress we've had and teaching for 40 years.

User

Posted 07 Apr 2026 at 21:38

My word you have a lot of stresses in your life currently! I don't know how you keep all those balls in the air.

I too found the oncologists pretty inscrutable, And impossible to contact - although since mine was salvage treatment I did have a route via my surgeon's secretary.

To be fair though the oncolgists we saw (like you, it was often different members of the team) did seem on the ball and follow up on what they saw as issues, although on one occasion their phone call about a concern may have been undermined by my admission I was half way down a ski slope at the time.

However I have no expertise whatsoever about the relative merits of apalutamide and daralutamide. In my case I was found to have high blood pressure only after taking goserelin (Zoladex) and it is possible any testosterone suppression brings a risk.

User

Posted 08 Apr 2026 at 09:04

Hi, J-B I think it's given us more resilience. Ways it effects us; our son rings every night for up to an hours chat. Covid helped as he had to go to his monthly appointment on his own. He's lived in supported accommodation for 14 years. The staff there are wonderful. He has his own flat, drives and volunteers in a charity bookshop. It helps there are other people there on his level. One young woman became ill in her last few months at Oxford uni. He comes to stay for a long weekend once in a while and all our neighbours know him and welcome him. He's fine. I think you'd find him a bit eccentric.

It's also brought us very close together. For a long while our passion together was just about our only joy in life. I tried explaining that to his CSN on our first visit. Total lack of empathy. She practically laughed at me. Well our love life is still wonderful thanks to our own commonsense and initiative. Thanks to the pump, 50mg Sildenafil, the squeezy app for him and me, thanks to this website, and 53 years of passion!

None of the guidelines for sexual advice have even been mentioned. No zSo he's stopped mentioning it at appointments. I think it's a disgusting lack of care for people who can't find these things out online or pay for the pump themselves.

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