Running out of road....

[CrocodileShoes]

... I've got a consultation with my oncologist tomorrow. I've huge respect for him - he's been with me throughout this 'journey' from initial diagnosis 14 yrs ago. But, he tends to follow SOC (although will support me in straying from the path. I'd welcome some suggestions before I talk to him.

My situation is this:

Initial PSA 4.1 Gleason 3+7 Had High-doce brachy followed by low-dose radiation. 6 good years in remission, until recurrence. Since them it's been the familiar path. Initially Bicalutamide as monotherapy, then when that failed, I had the 3 monthly shots with bicalutamide. Then when it escaped the lymph nodes, I was place on shots+enzalutamide/Xtandi.

I hate that drug, so I was almost relieved that PSA started rising again : 1.7 to 3.3 and evidence of small mets in spine. Because I had to work in Australia for 2 months we did nothing (except I added Propanalol. PSA surprisingly plateaued (last reading was 4.4)

I feel exhausted and constantly weak with the enza. I suspect he will suggest Abi + Prednisone. This will probably not help much with the weakness and tiredness, but as a holding mechanism I'd go along with it. However, we all know where SOC ends up, so I'm looking at other options and would welcome your thoughts:

1. Do some people fare better on Abi, than Enza? Are the other 'mides' (Apalutamide, Daralutamide any more effective at suppressing tumour growth without sacrificing QoL?

2. Are there better next steps - e.g. Lu-177? I know the sequence on the NHS means I'd have to pay privately in Melbourne, but I could just about afford it. But would it have consequences down the line?

3. Is there anything in the PARP Inhibitors/vaccines/immunotherapies that I should push for?

4. Anything encouraging in the current clinical trials? Things like Combrestatin, Provenge seem encouraging?

5. What else can I do to help myself? I'm looking to get the Cholera vaccine - has anyone had any effect with that? What about Niclosamide?

I hope the above list doesn't sound too desperate. I'm aware that kicking the can down the road for as long as possible is all I can hope for. But I seem to be running out of cans AND out of road!

I don't want to extend life if the quality of life becomes too miserable, so that's also a consideration.

Your thoughts, as ever, gratefully received.

[Magnus1964]

If Xtanadi side effects are a problem than I would switch to zytiga. It sounds like you are on top of alternative treatments.

Stay strong

Magnus

[Ian99]

Hi. My treatment journey has been similar to yours, am also on NHS. I am currently on Zytiga/ Prednisolone + 3-monthly Zoladex injections, for almost 2 years. MCRPC like you. PSA is elevated (8-14) but stable. Testosterone down (0.4). Six-monthly scans CT bone and PET CT have been showing no radiographic progression so we continue. Am generally feeling ok, apart from fatigue.

I have no experience with Xtandi but find Zytiga tolerable. Plus bone pain went away when I began that.

You do not mention scans. If not, I would urge you to do those to get radiographic comparisons to at least find out if you have actively growing cells, which would suggest chemo as a next step.

As for LU-177 I have seen a few recommendations on this site for having this done in Germany (closer than Aus). Homburg recently suggested. May be worth checking.

Hope this helps. Good luck.

[CrocodileShoes in reply to Ian99]

Apologies, I had a bone scan and will find out the results tomorrow.

[Tall_Allen]

Docetaxel is a good next step. It keeps enzalutamide working even after it fails- probably other anti-androgens (apalutamide, darolutamide) as well.

prostatecancer.news/2022/10...

[SCreader]

CS,

Being a newbie, I have no knowledge to offer, but great list of questions for those wishing to learn.

[London441]

Abi is generally much better tolerated than Enza certainly was for me, I had no side effects from it at all. Docetaxel chemo is mild as chemos go-not easy but not that bad. Lupron same. How much do you exercise and what kind? It is by far the best metric in our control.

[SteveTheJ]

Question 1. No one can tell you what the side effects from any particular medication will be. Erleada for me is starting to suck after 3+ years but the side effects are not debilitating: brain fog, mild nausea, mild vertigo, general clumsiness. When it's bad it's bad but I can still function.

Best wishes.