Abiraterone Vs Relugolix + estrogen patch for non- metastatic BCR

[SimMartin]

I’m not there yet and as the English health authorities refuse to fund abiraterone for non-metastatic BCR so at this point not on offer either BUT … given my particular issues I was Planning ahead for BCR (principle: plan for the worst - hope for the best).

I have been looking at using relugolix + low dose estrogen patch to maximise T suppression when still hormone sensitive as had previous excellent and fast response to LHRH antagonist, and the patch to mitigate the side effects (fatigue, mood, bone loss,CV risks)

As we in UK NHS are finally permitted by NICE to use the oral agonist (again years after EU and USA) that also reduces CV risk, no need for anti androgen for flare and opportunity for intermittent therapy if appropriate as seems to have a faster T recovery in comparison with the other options.

Has anyone any thoughts - experiences or research updates on this over and above the PATCH trial itself ?

[petabyte]

Abiraterone is not funded here for non-metastatic PCa either, I get it from Germany for 126 EUR per month (and my MO has gotten me 8 months free samples this year).

I suspect now the UK is no longer in the EU, the German supplier won't ship it there. Maybe you can pay for it in the UK (what is the cost?) and if money is an issue try the low dose approach 250mg with low fat breakfast.

I believe it is funded in Wales/Scotland but not sure how that works with the NHS

You should be able to look it up here. I can't see it (even with my VPN set to the UK)

nice.org.uk/bnf-uk-only

[SimMartin in reply to petabyte]

i heard somewhere that it was out of licence and somewhere the generic was around £60 a month but u can’t find verification of this ! In uk sine charge 2,750 a month I think and even NHS are charge similar - so maybe the truth is that the licence hasn’t expired !?

[petabyte in reply to SimMartin]

The generic has been available for some time. There are many brands (with very weird pricing).

arzneiprivat.de/search/resu...

My MO prescribes it and gives me a paper version. I email a copy to a pharmacy in Aachen and they order it. I pick it up and provide the real prescription.

The link above will deliver but I prefer to collect it every 6 months.

Try visiting some pharmacies and ask for the private prescription price for generic (I asked at many in Brussels but they could only get it at the official price 500 euro/month)

[janebob99]

Your plan to use E2 patches is an excellent (and safe) choice to reduce the side effects of Relugolix ADT. Low-dose E2 patches (e.g., one patch of strength = 0.1mg E2/24hr) will reduce or eliminate: hot flashes, osteoporosis, high blood sugars, elevated bad cholesterol, high blood pressure, and fatigue from poor sleep due to nighttime hot flashes, and low libido (in some men). High-dose E2 patches (3-4 patches at a time) will allow you to substitute E2 ADT for Relugolix ADT (see PATCH Phase-III trial).

[maley2711 in reply to janebob99]

Is there a credible trial for low dose patches and sucess in reducing those side effects?

[Aardvark4]

Hi SimMartin

I have had discussions with NICE regarding both E2 patches and Veozah - fezolinetant for ADT side effects. This abstract is taken from a recent reply

"The onus is on the company to apply to the MHRA for a licence. I can find no information on whether the license for fezolinetant will be extended to treat side effects of androgen deprivation therapy (ADT) for prostate cancer, however you are welcome to contact the licence provider (MHRA) to enquire whether this is likely to happen in the future. As we have outlined above, as NICE can only publish guidance once a treatment is licenced for a specific indication (condition), the use of this treatment in people experiencing side effects from ADT is not within the scope of the current guidance that is in development.

In the absence of final NICE guidance, or the presence of guidance that does not recommend a treatment, is not the same as a ban on that treatment being provided by the NHS. If, having considered the available evidence, a health professional considers that the treatment would be the appropriate option in a given case, there is no legal bar on the professional recommending the treatment or on the NHS in England funding it. It would be a matter for clinical judgement and would be a local decision."

The upshot being - we need to bombard companies to submit a licence application to NICE for these beneficial treatments, but also, as stated the final paragraph, it is up to your consultant(s) wether they will go off SOC and prescribe (not a high risk) treatment.

I love the NHS but its shortcomings has caused a flattening of my forehead after repeated wall banging!

[SimMartin in reply to Aardvark4]

thanks - I get the flat forehead ! Sadly u missed some issues that might have gotten me a better treatment but this has been a STEEP learning curve even for me and I specialise in sexual health counselling and chronic health - so want to be armed and ready this time as my last PSA after 9 months after rt and adt went from a steady 0.01 to 0.1 but as the testosterone came back from <0.5 until 3 months post ADT 0.8 the 6 months 2..8 and then 16. Of course the oncologist thought that my T would take at least 17-2 years to get there as I am now 74 / wheelchair user and lots of polio muscle loss from aged 5! They were wrong of course (again) so when they say - oh that’s normal likely benign not tumour rise in PSA I am unconvinced just as when they said I had g7 with less than 5% 4 on biopsy turned out to be G9! This time u want to be ahead of the game !