Hello again friends,
I wrote recently after learning that Xtandi was no longer working, seeking options. Since then I have had a consultation with my Oncologist and we went through the (limited) range of options for someone who is living in the UK and being treated on the National Health Service.
Brief recent history: a couple of years ago PSA started to rise on the treatment that had worked well (bicalutamide and 3 monthly Prostap injections) So I switched to Xtandi just over a year ago. The side effects were horrendous, so I reduced dosage to one-quarter of usual dose. PSA initially fell, and once I'd recovered from an unconnected major surgery, moved back to the full dose. This floored me with exhaustion and, as the PSA doubled (to 3.3) I went back to one-quarter dose. After 3 months, PSA had risen (4.4) but more slowly. But it was clear that it was not the drug for me. So at last month's consultation, I began by asking if I could switch to one of the other 'mides' (Apalutamide, Darolutamide, etc) Our National Health Service is a national treasure, but the official guidance is that, once you've failed Enzalutamide, that's it - no more options.
I know that some of you have had some success switching, but I was told that I'd have to pay privately.
His option was chemo. I said no thanks - not yet.
Long story short: I asked for a second opinion, one that was up-to-date with all the latest trials. To his credit, that's now done and on July 27th, I will meet with Johan De Bono (or one of his earthly representatives, at the Royal Marsden Clinic. Johan's reputation precedes him and I know that he's leading the Lu-177 clinical trial and a few others besides.
I want to keep all options on the table. I have a pretty slow spread of mets (all bone) and my PSA is still modest. So, I don't want to be panicked into hasty action.
My inclination at the moment is to go stay with my friends in Melbourne and ask the Peter Mac centre to treat me as an international patient. Since the UK charges FOUR TIMES the costs in Melbourne or Perth, it's cheaper to go down under. Plus, they did a PSMA scan on me a couple of years ago, and I seem like a good candidate.
I'm not against chemo, and I know it will be a requirement one day, but it seems that sequencing is important, and my desire now is to hit it hard. That said, I've seen quite a few posts recently where Pluvicto has been short-lived in its effectiveness and it's a lot of money. So, here are my questions:
1. Do people concur with my onco, that once Enzalutamide has failed, it's really not worth pursuing the other 'mides'?
2. Can anyone recommend men on here who have travelled to Australia for Lu-177 treatment, so that I can pick their brains?
3. Is my resistance to chemo, logical or rational, and if I did follow UK SOC, would it have a negative impact down the line?
4. Finally (and I'm sorry there are a lot of questions), what else should I be putting in front of Johan De Bono as possible next steps (perhaps as combo packages)? I'm thinking of Cyberknife, BAT, Cisplatin, PARP inhibitors and Immunotherapies. But I'm trying to keep a completely open mind on this.
I wrote a book a few years ago about the rise in self treatment. I met a leading oncology researcher whose brother-in-law had just being diagnosed with glioblastoma. When I asked him about 'alternative' treatments, he said, 'It's funny, I used to tell people that was all quackery. And then when someone you love has glioblastoma, you find yourself Googling peach kernel extracts, clinics in Mexico and God knows what else. Conventional medicine has a lot to learn from impatient patients.'
Stay well, my friends - the lines are open......