Today, I had a phone discussion with my uro-oncology support team and they told me that they NEVER give both chemo and an AR drug (e.g. abi, enza, etc) to prostate cancer patients at the same time - even if advanced. Apparently, the UK "gold standard" of treatment is to give a de novo APC patient either ADT + AR or ADT + chemo but not all three at the same time. They strongly recommend that I start with Prostap + Enzalutamide.
I referred to various clinical trials and they say they are aware of them but that is the treatment that is currently available and I should check out websites like Macmillan and NHS to confirm this. I've looked at the sites and it's not entirely clear to me that it supports what they say.
I am in the University Hospitals Sussex trust and I wondered if there are any UK members of the forum who have been offered/given triplet therapy as above and if so from which trust?
Thanks, Ben
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Benkaymel
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I would not get all three at the same time. I would start with Zytiga or Xtandi after I have recovered from the chemo. In the trials with the triplet therapy many patients had ADT+chemo first and then started with Zytiga or Erleada.
Many doctors believe ADT+Zytiga works just as well as ADT+chemo followed by Zytiga.
Oh yes, unfortunately there are many differences in what is available depending on which country you happen to be in. Many people travel to get the treatment they want.
Yes, (lowest) cost driven. I pressed my CO on why he recommended Xtandi over Zytiga and after making a few comments about not needing a steroid and better for the heart (but obviously worse in other aspects) he admitted that Xtandi is funding approved for NHS use in his trust and Zytiga is not.
What really depresses me is that I retired in March and had private health insurance for many years up till then through my company but just lost all that before I was Dx'd in April!!
hopefully zytiga will be off patent in the UK soon - which may change this. Also if enza has bad side effects (as with my husband) they can switch to zytiga under the funding rules .that was the case in Covid but might have changed.
Mu husband is at university hospitals Coventry and they said same to him. He actually said the triple therapy is not NHS approved so he had to take the chemo. He did say that he could have zytiga later on but not at the same time as chemo.
Thanks A596, interesting that Coventry funds Zytiga while Brighton/Worthing is Xtandi.
What particularly annoyed me was that the onc team say they give the "gold standard" of treatment when the latest clinical trials (which they are fully aware of) show that triplet therapy is the optimum.
I'm sorry NHS is behind. I've heard abiraterone is becoming available as a generic in the UK, so you can consider funding it yourself. I know Nick James is a proponent. Maybe talk to him.
Thanks Allen, would you particularly recommend Zytiga over Xtandi even though I can get the latter on the NHS and would have to pay for Zytiga? I'm thinking do Xtandi now, then when it fails do Docetaxel, then self-fund Zytiga after that if necessary and applicable.
I doubt there's any difference. I suggested abiraterone because if you can get docetaxel from NHS, the generic would be cheaper to self-fund as a triplet.
If triplet is impossible, I think you may be better off with docetaxel first. You will never be better able to endure it than you are now, and it is over after 15 weeks. Then, you can get abiraterone or enzalutamide. If you start with either of those two, it may be 3 years or more before you can get docetaxel.
I don’t use the NHS much as I have BUPA and I went out of pocket for Treatments in Finland but during paying my bills I realised Docetaxel was cheap compared to the advanced hormone therapy so I’d consider a private quote for Docetaxel and take the advanced hormones from the NHS. Just a thought!
many MOs in UK work privately so you could ask if yours does or look on the BUPA ‘ find a consultant’. I use London Oncology Centre and they do it there but somewhere local would be best I’d say ( my office is in London)
We live near London and my husband has had the triplet therapy with Daralutomide . He’s just finished the 6 docetaxel treatments, now carrying on with ADT and Daralutomide. He is low volume ( mainly lymph nodes) but oncologist wants to hit it hard , up front with this intense treatment. Next month he will start 7 weeks of prostate radiation and then he’ll have targeted radiation. We have private insurance through Bupa so not NHS . As my husband is 50, asymptomatic and fit we have decided to go down this route. May be worth pursuing privately if at all possible or persisting through NHS.
Thanks, if only I had myself checked out before I retired in March when I still had private cover! I've been so stupid. At least that confirms that the NHS claim of providing "gold standard" treatment is BS.
I have some ABI (maybe 200 tabs) left over, plus some prednisone. Happy to ship to you. Not sure if HU facilitates this kind of thing, but worst case let’s just figure this out in chat.
Thanks Sebara, great that you have good results. I am interested in Keytruda too. You were fortunate to have the right timing to get into Keynote-991. It's no longer recruiting.
Most of the interesting trials are for CRPC so no doubt, I'll be looking into them down the road!
Just wanted to throw into the mix that Zytiga and prednisone is SOC in Scotland. My husband has been on it for over a year and is doing very well, PSA currently 0. 1.
Thanks Freddie, good to hear hubby is doing well. I believe it is SOC in some English NHS trusts too. I don't know why some use Xtandi and some use Zytiga but I'm quite happy with using Xtandi as I think they both have their SEs and it's a lottery as to whether any one of us fairs well or not on either. I'll be sure to report back here my experience with Xtandi!
Sorry hear that. If you can afford it, find a country with world standard and lower cost. That means Asia, eg Japan, Thailand ( surprised) Singapore etc. You have to pay, but the cost is less. And if you want a second opinion with UCLA, or Johns, they can arrange via internet.
Sad situation Benkaymel. Seems the NHS goes by the cost-adjusted standard of care, caSOC prescribed by the administrators and not the doctors. Certainly not a “gold standard” but the opposite.
I would favor Tall Allen’s suggestion: get the ADT plus docetaxel chemo now. And get abiraterone generic from India and start on your own. 250 mg daily with fatty breakfast. 5mg prednisone or prednisolone is very inexpensive and also available from India generics. Starting the full three Triplet together from the start may be important for maximum benefit. Then switch to whatever is approved after docetaxel is completed. Watch BP and for swelling which would call for more (10mg) prednisolone.
Thanks Mateo, it's a minefield deciding what to do. I've had high BP for several years and have been on Amlodipine for that so weary of anything that may increase it such as Abi. I have no history of seizures or brain/cognisant issues, so Enza feels like a better fit. BUT, it seems that Enza + Doce up front is not as effective as Abi + Doce (according to a post I read from T_A). I'm so conflicted about what to do for the best!
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