My husband had his robotic prostectomy in February 2020 his PSA remained at 17 .The consultant said because of COVID and the fact a couple of lymph nodes were positive he could prescribe Enzalutimide (Xandti) as the first line hormone treatment and salvage RT after 6 months with a view to curing the PC .My husband started Xandti in June by July his PSA had dropped to 0.02 ,he has very bad hot flashes and brain fog and occasional headaches exacerbated by trying to give up coffee at the same time !!! .He also gets tired but all in all we are encouraged by the dramatic fall in PSA to relatively undetectable level.On reading up about responses to Enzalutimide it is apparent the faster and more dramatic the reduction in PSA the better the outcome.Its a very expensive drug which is why prior to COVID it was reserved for hormone castrate resistant PC, it costs over £100 a day .Having had his prostate removed is apparently also a good thing because its taken the 'Mothership' away and any circulating cells are not re energised by the cancer in the prostate. So all in all quite positive however as we all know this cancer is unpredictable and we dont know how it will respond to RT .I was wondering if anyone else had been prescribed Xandti as a first line hormone treatment with a view to a cure .?
Although I don't have any experience with Enzalutimide to share with you I noticed that your post hadn't had any responses yet.
While your waiting, if you type 'Enzalutimide' into the search bar at the top of this screen you'll find quite a few posts which mention it. You could have a read through those and reply to any of the more recent posters if you think they can help you further.
When you have a minute, it would be really useful if you could pop something about your husband's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
What is a Community Champion?
I have no experience of enzalutamide either - but I found this article quite interesting:Enzalutamide - Prostate Cancer UK
- - -
A healthy-looking decrepit, 69-year-old male, mentally alert but forgetful. I no longer have an urge to choke people who say "all you need to beat cancer is the right attitude" - better to smile and move on.
I take Xandti or have for the last five days, mine is incurable this is the second line of defence, I know about hot flushes and the other effects just part and parcel of the treatment, you could ask for a drug that will help with the hot flushes it’s called Provera ask either the doctor or oncologist about it. This and Aberaterone are both excellent drugs hopefully they will kill off the lymph nodes that are affected and all will be good.
take care keep safe
Thanks for all your replies all information is very useful.From my investigations it looks like Enzalutimide can be exceptionally effective in some cases and they are only just now starting to give it as a treatment for failure after prostectomy .My husbands side affects are severe but manageable at this stage, he will have RT in the new year and hopefully this will kill off any remaining nasty cancer cells , in some cases where the lymph nodes have been affected Enzalutimide has effected a complete remission when combined with RT with no evidence of cancer remaining .His consultant says they intend to cure him but as with all prostate cancer it may return .We have a phone consultation with a consultant on Tuesday and they will let us know more about the RT then.Its a roller coaster ride as you all know .His Gleason Score is 4 -3 and his PSA after prostectomy was 17 ot dropped to 0.02 after 5 weeks on Enzalutimide .
I'm a bit late to this but was looking as my husband has also recently been diagnosed and is also taking Enzalutamide. His story is that he started with hip pain back in February which we thought was a running injury. GP useless. Tried private physio which didn't work, and in the meantime also got pain in his ribs. Went from running marathons to not being able to walk to the shop without severe pain. Physio referred him back for tests and bloods, which showed up the PSA. Total shock, no other signs. Gleason score is 9 and in bones and lymph nodes already, so they can't cure it. We were told no chemo allowed because of covid, so now on Enzalutamide and hormone injections every 12 weeks. He has also has similar results, at diagnosis his PSA was 160, after 4 weeks with just the hormone injection it went to 32, then after 4 weeks of the tablets it was 0.53. We were delighted! He has had hot flushes which aren't nice for him but they aren't too horrendous, and he is more tired but still able to work so maybe he has been lucky. However, his rib pain has recently returned so we are terrified of his next blood test on Friday. Bit of a false sense of security with the results and feeling well I think. We can't understand why is pain has come back already unless the PSA is back up but we pray not. Fingers crossed that your results stay low Scorplo6.
One thing that is really eating away at me is stories I have been told from family in Norfolk. Why are some people always experts when you tell them something like this?! Anyway we were told he wouldn't be given radiotherapy now it has spread because it is too late. Yet 2 people have told us they know someone who also both have advanced prostate cancer but are having radiotherapy. Why are they and my husband cannot? Is it really down to where you live, in Norfolk you get it but where we are in Hampshire you do not? I just hate the thought that he is missing out on a treatment which could give us more time :-(. Can anyone advise please?
Thank you, it's good to know there is support out there! Tough times when you can't even cry on your friend's shoulder these days!
NorfolkExile I have advanced prostrate cancer. After surgery my psa was persistent, after a pet psma scan occurrences were found in my ribs.
Radiotherapy can be delivered to the prostrate bed, this will mop up any cell in the bed, however other cells are in my ribs, so this is not a cure.
Radiotherapy can also be delivered to the ribs where the pain is, this can bring some respite to the bone pain, however it doesn’t cure. You can only receive this type of radiotherapy twice to the same region.
It’s a long game, each treatment is a delay. It’s important not to rush.
NorfolkExile said:we were told he wouldn't be given radiotherapy now it has spread because it is too late. Yet 2 people have told us they know someone who also both have advanced prostate cancer but are having radiotherapy. Why are they and my husband cannot?
This one isn't a postcode lottery, it's about where the metastases have occurred, and how many.
As Youngman says, there are limits to how much radiotherapy you can have in one place. There's also the question of how many metastases; if it's one or two, maybe three, then radiotherapy can do more than stop the pain, it can eradicate them. But if there's more than that (and many have scores of micro metastases), then radiotherapy won't be the answer - first because of the limits of safety, second because if it's spreading like that, then new ones will pop up as fast as they can be treated, so you get the side effects, but no benefit.
In many cases, if there is a primary tumour recurring in the prostate bed, that can be radiated again, and that can be helpful. But not always.
If radiotherapy cannot be given, it's not just that it's spread, it's the way it has spread. Do ask the doctors for more details, and if you feel things aren't right, do seek a second opinion. But sadly, radiotherapy cannot be used in every case
Hi jim788 here just to say I'm in my 3rd week of taking EUZALUTIMIDE for me its my second line of defense I'm incurable and as yet have had no noticeable side effects. As it is I'm having my nurse specialist ring me this week to see how I'm getting on as said feel fine. Just had my bloods done yesterday 16th my big day will be the 16th December when my consultant is due to ring and tell me what's what I did have a minor falling out with the NHS as my hot flushes were extremely bad and was given an anti depressant not going down that road went to see a private consultant first thing he said was "what have they give you them for" wrote out a prescription there and then ON THE NHS called CYPROTERONE ACETATE 50MG one a day my sweats have all but disappeared
Thanks for the information, that is helpful. Unfortunately his has spread to many bones, all down his spine and in his skull as well as the bad areas in his hip and ribs for example. So maybe that's it. He has his next blood test on Friday and a video call with the oncologist on Wednesday so I will see if I can raise it.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007