Has anyone been on Enzalutamide for 5 years or longer and still have undetectable PSA Levels?

Hi AFLMF ,

I am not at this stage of my cancer route (yet) but I know full well what a "bit of a wobble" feels like, so I did some research.

It was both helpful and not helpful.

I went through a number of sources, mainly academic papers, and became utterly confused, because I don't understand them well enough.

So, no definitive answer, except for the fact that I found a number of people who lived beyond the 5 years you mentioned. 

I daren't offer you more information than that without taking the huge risk of giving more hope than is justified. I can tell you that I would take it if recommended.

I am tagging Alwayshope in this because she actually understands the papers that are available, and I definitely don't.

You may have some difficulty in getting people who have been on this therapy for five years because it was only finally approved in the UK in 2021 - although it had been used during the pandemic.

I hope that you find the information that you need, and, well, chin up, you have a long way to go.

Thanks so much...I hadn't thought about the length of time.since their introduction, which will lost certainly be pertinent.

Most days it is at the back of my mind and I know there is nothing I can do to change it so generally try to live each day as it comes.and find joy - just a wobble and hopefully I will be fine tomorrow. 

X

I get a strange feeling from time to time, like a voice in my head saying "You've got cancer, you idiot, WORRY about it."

There is a very small part of me worrying much of the time.

However, as you say, getting on and enjoying what I have got has become far more important.

This was explained to me by a counsellor I spoke to about anxiety. I'll give you what I remember of the conversation. It might not be word-perfect, but the meaning is there.

Counsellor - "I can see that you are worried about your position, but answer me another question. What do you do when everything is at peace, and you have done all you can?"

Me - "Um, I quite like to sit in my garden and listen to the birds.*"

Counsellor - "OK. Now tell me, have you done everything you can about your problem?"

Me - "Yes".

Counsellor - "Have you engaged with everyone who can help you?"

Me - "Yes"

Counsellor - "Anything else you can actually do?"

Me - "No"

Counsellor - "Well, you might as well go into your garden and listen to the birds, then."

That was a light bulb moment. He was entirely correct. It doesn't exclude anxiety, but it appeals to my character. I get into anxiety and panic. I let myself have that - it's a natural reaction. I then put together an action plan, and follow it.

When I have done whatever I can, I do my level best to metaphorically go out into the garden and listen to birds. It all helps to keep my balance.

*PS: I carefully neglected to tell the full truth. The correct statement would have been 

"Um, I quite like to sit in my garden with a beer and listen to the birds.*"

Hi AFLMF .

The use of Enzalutamide in the hormone sensitive setting is still being evaluated as part of the ARCHES trial and the good point is that there are still many men benefiting from it after 3+ years. The limitation is that those with just lymph node or visceral mets do not see the same level of benefit. The results to date show improved time to progression and for many they aren't part of the overall survival statistics yet.

https://ascopubs.org/doi/10.1200/JCO.22.00193

In other words, it is still very much a work in progress and I hope your husband continues to do well on it for a long time. We all have wobbles along the way and look for reassurance but each persons cancer and how it reacts to the treatment is individual. 

Hello AFLMF 

We all have had a "wobble" or two or three - it comes with the diagnosis. Statisticlally one in two people with cancer have a "wobble". I have had two really bad wobbles but like you the great thing is you realise and you want to talk about it - so that's half the battle. I hope tomorrow will be "wobble free".

IF it's a bad wobble then please do give our Support line a shout on 0808 808 00 00 (8am to 8pm 7 days a week) they have lots of resources for you.

Me - to be honest with you I posted on here - I wasn't too good and the amazing support got me over it, and when I look around me now I realise, there are people who don't even have cancer of any type who are worse off than me!!

It's a hard journey we are all on - for me personally I look at every day as the start of the rest of my life!! I know it's always there but try and ignore it and live life to the full.

If I can do anything for you please do let me know - my message box is always open if you don't want to stick it on the forum.

Best wishes - Brian.

An interesting read and has given some hope, thank you.

It's the control freak in me rearing it's head but I know intellectually that no-one has a crystal ball and it is what it is st the end of the day.

We just have to keep on taking each day as it comes and who knows, after 3 years there may be other very successful treatments available.

We are all hoping and praying for that after all. 

X

I am pretty certain there will be new treatments, both as refinements of the existing patterns, and some completely new.

Each new day is a step closer to that.

As Alwayshope mentioned, in this country at least, most people haven't been taking the drug for five years yet.

I echo your prayers.

Thanks Brian

Talking about it helps and just being able to reach out on this forum is a lifesaver. 

I truly value the input and genuine "love" in our little club.

X

I used to hold the view that "they" have a cure for and that the financial benefit of treating it outweighed the cost for curing it..being in the eye of the storm as it were...I'm not so sure anymore. 

I just pray that, with such high profile men like Sir Chris Hoy shining a bright light on it, more treatments will be found.

I'm waffling now!

X

If it helps, waffle away.

I find that talking, event to myself, helps me plot a course to stability.