Is Xtandi necessary or even helping me?

[Benkaymel]

This may be a stupid question but it's been on my mind for a while. I started on Prostap (Lupron) last July and my testosterone dropped to less than 1.0 by October while on just that. My PSA was also below 1.0 by then.

My MO started me on Xtandi towards the end of October and my T and PSA appear to have pretty much flatlined since then.

I've read that "castrate" level T is defined as <20 so if mine is <1, how much additional help is Xtandi likely to be giving? Could it just be driving my cancer towards castration resistance and more aggressiveness quicker than necessary?

Any thoughts are welcome.

[Seasid]

I belive 1.7 is equal 50. Therefore 1 would equal 29 if I am correct.

I am only on Degarelix injections and only my cancer in my prostate converted into CRPC after 4.5 years on ADT and we irradiated my prostate and now my PSA dropped from 1.5 to 0.51 two months after irradiation.

I had early chemotherapy in 2018. I believed back then that the early chemo will extend my life for one year. I believed back then that I will live around 3 years long. I had 15 bone Mets in my spine.

I am still not on Enzalutamide az I am gambling with the local therapy radiation. The reason for that is because they didn't find any Mets with any recent scan just before radiation of my prostate. Maybe it is just luck.

They said that I can stay on firnagon injections (Degarelix) as they believe that we killed all the CRPC. If my PSA start to rise I could have chemotherapy or maybe Enzalutamide.

Why did they put you on Enza?

[dhccpa in reply to Seasid]

What killed your bone Mets? The chemo?

[Seasid in reply to dhccpa]

I had every 2 weeks four times 68 Ga PSMA pet scans since I started ADT (Degarelix). After that I had early docytaxel chemotherapy.

When a little bit than a year ago my PSA started to rise from 0.2 I started 100mg doxycycline and 2x 500 mg metformin a day for maybe 6 months.

I stopped as I didn't feel well, I am weak since then. My vitamin B12 level dropped because of the metformin use. Therefore I stopped.

My PSA continued to rise and according to my RO professor Izard recommendation I arranged a consultation with the RO when my PSA was 1.2.

The RO ordered the PSMA pet scan at PSA 1.25 and they didn't see any mets.

I wanted to decide what to do next.

One option was to irradiate my prostate if I really don't have any visible mets.

The other option was enzalutamide.

Therefore I arranged an FDG pet scan and a nuclear medicine bone scan and it looked that I really don't have visible mets.

I didn't want to fry myself with radiation to my prostate if I have any visible mets.

At PSA 1.4 I had the SBRT of my prostate and remained on Degarelix.

Two months after radiation my last PSA was 0.51. I am curious how will it go further.

I believe the early chemo helped me, but who knows, maybe the 4 PSMA pet scans also helped?

Before my 5th and last PSMA pet scan my PSA was 1.5 and after all the other scans and before the SBRT my PSA dropped to 1.4.

I thought that it happened because I had to use something against constipation before the radiation, therefore maybe that caused the drop of the PSA?

[dhccpa in reply to Seasid]

Hang in there!

[rococo in reply to Seasid]

where did you have abrt irradiation on your prostate and by who. Any side effects. Iam in the same situation and hope you respond. Thanks

[Seasid in reply to rococo]

I don't believe that you are in a same situation as me.

I asked my primary care physician for a referral to RO.

When I was diagnosed in 2018 with multiple bone Mets as distant as my neck it was a shock to me.

I could not get a quick appointment with an MO.

I was lucky that a local RO with great experience in prostate cancer wanted to see me.

He helped me to get an early chemotherapy and that I communicated my wish to the MO to keep me on ADT continuously.

I was very scared to stop ADT. I didn't want intermittent ADT.

My RO and MO agreed that I will see an RO ones my PSA will start to rise.

My nadir was 0.12 and it was going up and down between 0.12 and 0.2 for some time.

Then it started to rise. When my PSA achieved 1.2 I asked for a referral to the RO.

The RO ordered a PSMA pet scan and at PSA 1.25 I had a scan with the investigative CT with contrast.

My Mets previously seen were not anymore visible on the scan.

My prostate had an SUV MAX value of 14 and 95% of my prostate was full of CRPC.

I was only on ADT and we decided to SBRT my prostate in order to prevent a possible local spread of the CRPC to my rectum, bladder etc.

This was done not to extend my life but to save me from lots of inconvenience down the road.

I could just skip the SBRT of my prostate and start Enzalutamide.

Maybe that would be a better option for me but I wanted to gamble and to kill the CRPC in my prostate and to continue with ADT alone.

I am now 2 months after the procedure and my PSA dropped from 1.4 just before the radiation therapy of my prostate to 0.51.

I feel fine now.

I don't know what is the best for you as I am not an MO nor an RO.

Maybe you should just contact an RO for opinion?

My current MO and RO and myself agreed about this procedure but I am fully aware that it will not extend my life.

Good luck and if you have more questions just ask me. I live in Australia in Darlinghurst in Sydney and I had a procedure in my local Genesis Care only 400m from where I live. The name of the machine was Ace.

[rococo in reply to Seasid]

Thanks for your kind response. You have a more complicated situation and I wish you the best of luck. I only have s reccurrence in the prostate and trying relugoiix to get non detectable.while searching for a safe focal therapy as Iam using relugolix+ nubequa and running out of med options for castrate sensitive pc. Using expanding ampulutamid

[Seasid in reply to rococo]

Can you try to communicate with your MO and RO? Or ask for a second opinion if you need?

[Seasid in reply to rococo]

Can you consider the AMPLITUDE clinical trial?

clinicaltrials.gov/ct2/show...

[Seasid]

I finally read your profile. Can you switch to triplet therapy,? Is it now too late? I believe that chemo is very good for bone Mets plus it is also good for Xtandi (enzalutamide). Could you ask your oncologist as soon as possible to switch to triplets therapy with the chemo?

[Benkaymel in reply to Seasid]

Thanks Seasid, I hadn't realised about the units difference between UK (nmol/L) and US (ng/dL). That explains my apparent exceptionally low T! So I'm actually hovering around 30 ng/dL.

Great to hear your positive response to early chemo and how long you've already had without Mets since. Triplet therapy is only just being introduced into the UK so I don't know if I qualify - or whether it's too late to be of use now. Questions I will ask my MO. I have a PSMA-PET scan next week so will see what that throws into the mix.

P.S. they put me on Xtandi because that was the UK SOC for my dx last year.

[Seasid in reply to Benkaymel]

If I good understand your PSA is still only 0.6. Hopefully stops there? If I where you I would start chemo if your PSA will rise further. Ask the oncologist. Chemo is good for bone Mets.

[Benkaymel in reply to Seasid]

Actually my last PSA reading was 0.3 and flat to falling, but I will ask my MO. Thanks.

[GP24]

As you have bone mets, Lupron plus e.g. Xtandi is the standard of care. Studies have shown that this combination improves overall survival.

[Benkaymel in reply to GP24]

Thanks GP24. That's what my Onco team have told me too.

[Tall_Allen]

Yes, it's helping. Men who took enzalutamide with ADT were slower to reach castartation resistance and had longer survival than men who used ADT alone. The differences are large. (e.g., 71% reduction in progression) . Enzalutamide plus ADT significantly reduced the risk of prostate-specific antigen progression, initiation of new antineoplastic therapy, first symptomatic skeletal event, castration resistance, and reduced risk of pain progression.. Differences in major adverse events were small (actually favoring enzalutamide). This has been proven in 2 separate major randomized clinical trials. PSA is only a biomarker. You are treating your cancer, not your PSA.

ascopubs.org/doi/full/10.12...

dailynews.ascopubs.org/do/e...

[Benkaymel in reply to Tall_Allen]

Thanks Allen, that's very encouraging to read.

[anony2020 in reply to Tall_Allen]

Good info.