After a successful - but short - period on Bicalutamide + Leuprorelin my PSA has risen from 1.1 to 1.7, to (now) 3.3. My last scan showed some micro-mets on my back, but organs were clear.Is it safe to say that Xtandi does not work for me? To be honest, I've had a miserable time on it, culminating in drowsiness while driving 3 weeks ago and hitting the rear end of a large truck on the M1 - the UK's busiest freeway. No-one was hurt thankfully.
My predicament is that I have a tour of Singapore and Australia booked in from mid-April until end-May, and I could not have done it while on full dose Xtandi. My Onco said that I needed to stop Xtandi whatever the PSA resuls, but I'm obviously scared about what happens when I have nothing but the injection. If PSA doubles while on Xtandi every 2 months, what will it do when I am not taking anything?
So I have a couple of requests for your collective wisdom. Firstly, what's next? Could I try a different injection or are they all pretty much the same? Is there an alternative to Xtandi that might start lowering PSA without the awful SEs? Or is it time to consider chemo options? After I return from Australia, I have a period at home with little work, so I'm tempted to ask my Onco for a combo approach, where we can be more aggressive. (I've previously requested cyberknife, but he's been reluctant to approve.)
Secondly, I've been with the same consultant for 14 years. Given the pressures on the UK's NHS system he has had very little time for research. Should I ask for a referral to a cutting edge clinic, and if so, does anyone have any suggestions? What should I be investigating myself? (I've been tested for BRACA 2, but I think I should go for full genetic profiling)
Finally, while I'm away, are there any supplements or repurposed drugs that have been proven to have anti-cancer effects, that I could take to Australia, to try and limit the damage until I return?
Sorry for the barrage of questions. Whenever another domino falls I catastrophise, so my brain is reeling. I get knocked down, but I get up again.......
Written by
CrocodileShoes
To view profiles and participate in discussions please or .
I expect that you will start Docetaxol but I think it would wise to keep going with the Xtandi until you start the chemo. Even though your PSA is rising, Xtandi may still be helping to regress your cancer.
If you will be in Melbourne, you may want to consult with your friends at Peter Mac again (I think Michael Hofman is excellent). They are running several combination trials using 177Lu-PSMA.
Closer to home, Johan DeBono at Royal Marsden has a well-deserved reputation, and is the lead investigator for many innovative trials. He would also be the best to consult about what can be learned from a biopsy of your tumor tissue.
Nubeqa (darolutamide) is an anti-androgen that does not excite the GABAA receptor, so it may make you less drowsy (this hasn't been proven). However, it isn't yet approved for this indication, and I doubt NHS will give it to you. Maybe you can get it in Singapore?
The decision about docetaxel should be made based on how active your cancer is. Chemo only works when the cancer is actively replicating.
Great advice. Johan de Bono is the UK lead for the SPLASH trial, and I think Darolutamide has just been approved for use in the UK. Also, de Bono is also leading the MAESTRO trial so I might get a twofer! Finally I've been reading about Navarixin as an off-label resensitiser. Know how I could get hold of some?
You may be an ideal candidate for Olaparib + AAP = PROPEL study. ( clinical trial). It looks that the median survival was 4 years. I am not 100% sure if you are eligible for that treatment now or maybe in one year. You should read the inclusion and exclusion critarias. I am not sure if they will prescribe you these medications in an NHS setting, but it is the best proven treatment for you now. I would not rush with the lutetium. It is very toxic for your kidney at low volume setting.
Good luck and inform us how you are doing. That treatment would be the best for you. Ask your oncologist and try not to lose your eligibility. Dr Fred Saad from Toronto could give you the best information. Good luck.
Really interesting to get your take on this. You seem very certain of best treatments (and harmful ones) Do you have a medical background, by any chance? And it's interesting on your bio that you describe Lu-177 as a localised treatment. Wouldn't it be classed as systemic? Your bio also shows a one-month history from 0.9 to 0.95. This wouldn't be considered a long-term appraisal. I wonder if you could share your history here, as your choice to avoid many of the conventional routes - with some apparent success - is impressive.
I'm living in the UK - only visiting Australia. I think you might be right about PROPEL study, but I'll check it out.
My last PSA was 0.37. You should consult an MO like dr Fred Saad. He knows everything about the PROPEL study. Try not to lose your eligibility. I am just saying that it could potentially extend your life median for 4 years. Your first step should be to see if you are eligible and find out more from an MO who knows all of your information. I am not a doctor but that should not stop us to consider promising treatments. Treatment decisions are most important in order to extend our life. I don't know your history but it should not stop you to ask questions from your doctor who should know your situation. Please report us back what did they say to you.
Talk to some competent MO about wishing to extend your life on the basis of findings of the PROPEL conical trial. Maybe he could prescribe Olaparib + AAP. Don't lose your eligibility.
My understanding is that eligibility for Olaparib is that you must have the BRCA1 or BRCA2 gene. I had a genetic test (a long time ago) and I think I was found to have neither. So, it's not likely to work for me? I'm caught in limbo: I don't have a heavy enough load for Pluvicto, but the mides appear to be ineffective and exhausting. And I'm not keen on chemo, unless there's no alternative.......
the LU is in short supply worldwide right now. So might be difficult to find outside of a trial even if dr agrees.
During your tour for 3 mos i would continue the xtandi at half dose that should minimize side effects but could give you some benefit. Plus take it each night instead of morning
Then when you return consider next steps like chemo or other with your regular drs.
At psa of 3, i would not jump into chemo immediately. Remember that each added treatment brings added side effects. Play the long game, run out each treatment as far as you can.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Rechallenge with Xtandi 
Stopping Xtandi due to Neuropathy 
Not Tolerating Xtandi 
Hypertension and Xtandi 
Is Xtandi necessary or even helping me?
