Relugolix

Hello Chris.

As you say, this is a tablet version of ADT but reading the guidelines it appears to be approved in Europe for Hormone Sensitive prostate cancer only at the moment. It is always worth asking the question, particularly if you are having side effects from the injection.

Hi !

Both Firmagon and Orgovy are antagonist. I started with Firmagon in January 2024 but was one of them that had troubles in the injection site and it actually got worse over the months so in July 2024 I changed to Orgovyx instead.

I don’t know the benefits from Firmagon you have that you’re afraid of loosing. Both are antagonists and work the same. With that said, you may not experience same side effects but one side effect that goes away when changing from Firmagon to Orgovyx is injection site reactions which is very common when using Firmagon.

The issue here I think is a PSA Rise which may perhaps suggest castration resistance and then perhaps a change of hormone therapy might not help. One other option could be to add Abiraterone because that supresses androgen production in for example the prostate which blocks prostate cancer to produce it’s own Testosterone to ’feed’ on.

Have they ever tested your Testosterone levels to see that Firmagon is doing it’s job and stops the testicles from producing Testosterone?

Anyway, both Firmagon and Orgovyx is antagonists so they basically do the same work. With that said it’s not a guarantee that you might experience different side effects

Best wishes - Ulf

Thank you

Many thanks. I have no idea about any benefits or disadvantages in a change, but don't want to 'jump in with both feet' before asking people such as yourself who are users. I don't always have severe effects from the injections, just some give nasty pain afterwards for a day or so. I can cope, but it would be nice not to face monthly injections and to be able to wear trousers with a belt line across the abdomen.

My testosterone levels are checked, but the oncologist doesn't let me see the results. He is odd. Normally he will only talk about PSA and the progression of the cancer. In between seeing him, I find out about my PSA from the results of blood tests prior to receiving the next batch of Enzalutamide tablets.

Apart from the local reactions, did you notice any different side effects when you changed from Firmagon to Orgovyx? My biggest problem is brain fog with names of things.

Best wishes

Hi !

As I’m both on Orgovyx and Abiraterone it’s difficult to say exactly which side effect is more and less. I think that changing from Firmagon to Orgovyx has affected my mood more actually. I think I have more ups and downs compared to when I did Firmagon and Abiraterone.

The big problem for me was that my reactions at the injection site actually increased from January to June so that was the main reasoned I changed and then of course the possibility to administer my hormone therapy with pills.

But to try to answer your question. My mood is more up and down now and like you mention, it’s not that easy always with a clear mind. The fatigue and tiredness is always a reminder and has been from the beginning but even more since I added Abiraterone in April.

So, more or less the same and I would say that now after almost a year of hormone therapy it feels that I somehow have landed with the side effects and it’s not worse or better so a plateau I hope.

Best wishes - Ulf

Hi Alwayshope

Relugolix has been approved in the UK by NICE. I asked my oncologist (lead oncologist at the hospital) about it in August and again a couple of weeks ago. He said whilst it is approved by NICE the hospital trust haven't as yet given approval for them to prescribe it. He also said there could be problems as to who would pay for it, the hospital or my GP, this didn't make sense as my GP currently prescribes my Degarelix and the cost of Relugolix is slightly cheaper so I don't see a problem.

Hopefully the trust will approve it soon as I would much prefer an oral medication over the 4 weekly injection of Degarelix, though he has said I can go onto 6 monthly Triptorelin should I wish

I'm not on Relugolix yet but my consultant suggested it as an alternative to 12 weekly Prostap injections done at my local GP surgery. He mentioned this in a letter to them saying I'd discuss it with them if I wanted so he obviously expects them to prescribe and pay for it as they currently do for Prostap. I'm pleased to see there's little difference in cost.

Having researched Relugolix (Cancer Research link below) I am interested in it due to likely benefits shown. I'm also keen on the convenience by avoiding regular visits to the GP and to give me more flexibility to travel between 12 weekly blood tests and hospital reviews.

One thing I'm apprehansive about is whether there will be a reliable supply from the pharmacy when we read about shortages of some drugs these days - does anyone have any experience of supply reliability? This could be important as my GP won't prescribe more than 28 days supply of anything unless needed because of holidays etc..

Derek.

https://news.cancerresearchuk.org/2024/07/19/take-at-home-pill-prostate-cancer/

Hi Derek 

I think it's probably too early to know if there's going to be supply issues in the UK with NICE only approving it a few months ago. I've had problems a couple of times with one of my blood pressure tablets being unavailable for weeks on end and had to have a temporary alternative, that's not so easy with Relugolix as we'd need to go back on injections which is what I'm trying to get away from.

I'm lucky that my GP prescribes 8 weeks supply of my medication, so hopefully once I get the go ahead for Relugolix they'll do the same, the oncologist is also going to issue 8 weeks supply of Darolutimide which will make life easier once I decide to go back to work as I combine jobs to Europe with mini holidays or sometimes not so mini 

I suspected that with supply issues but thought it worth asking in case anyone had any experience yet.

Now isn't it odd how things vary throughout the NHS. On one hand my oncologist is prescribing me 12 weeks of Darolutamide to last right through the 12 weeks between reviews. On the other hand my GP currently prescribes my existing medication for 8 weeks but my wife recently started taking statins and was given 4 weeks - when she questioned this they reduced her current 8 week prescriptions to 4 weeks as well on the basis of "NHS Guidance" to prevent waste - they wouldn't budge when she objected. Consequently if I get any new medication from them they'll probably do the same to me!

Derek.

Hi Excavator,

I have this sneaky feeling that GP's & hospitals like to blame NHS guidance for many things whereas it's just their own intransigence.  My ongoing GP prescriptions are only for a 28 day supply, whereas my husband who is with the same surgery always gets a 56 day supply. 

My simple brain would say if it's an ongoing long term medication then giving an 8 week supply as opposed to 4 would help cut down on administration time, but what would I as a layman know  

Best Wishes

Brian