Well, we're all familiar with gas shortages. It appears (according to my hospital in the North of England) that there is also a global shortage of tracer dye. (Who knew?) As a result the CT scan that I was scheduled for last week has been cancelled, with no immediate prospect of tracer dye so that scans can resume. The UK has become a 3rd world-country, apparently.
Anyway, I still have a consultation with my onco booked and, with my PSA doubling on Bicalutamide and Lupron (equivalent) I'm not content in just letting things slide until I can get the scan. When we talked previously, he said that approval had been granted for both Apalutamide and Daralutamide. So, my instinct is to say 'put me on one of those'. But, which one? And, since the strategy is changing, this might be the time to suggest trying BAT. I know some have found some success with BAT, and I'm willing to give it a shot.
I'd therefore welcome any views, evidence, personal experience on both counts (which 'mide' and yes/no on BAT) I was intruiged by this paper: sciencedirect.com/science/a...
That said, I suspect that, until I've had a scan, he will be reluctant take any experiments. But he has been supportive in the past of my attempts to try non-SOC approaches.
Your thoughts as ever gratefully received.
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CrocodileShoes
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Apparently the CT contrast is made at a GE plant in Shanghai that was closed down during their lockdown.
BAT is experimental and should only be done as part of a clinical trial. Most of the tests are after the failure of a second-line hormone therapy. The entire benefit is to extend the time on one of those and to give vacations from ADT. Here's what we've learned so far:
My PSA also was doubling, tried Osatrine and it stopped the increase of PSA. Only been 5 months so no long term results, so far just biding my time until whatever comes next
I didn’t know about the tracer dye shortage and I hope you get what you need. If you do get anywhere with BAT please let me know. I am U.K. based and when I raised BAT with my Onco she was horrified.
My PCa oncologist, Dr. Sartor, has had extensive experience using BAT which he refers to as high dose testosterone therapy, he’s been involved in clinical trials and uses it for patients who meet a certain criteria. Their PSA must be low, they are castrate resistant and have failed on Xtandi, they are in good physical condition and are a relatively young age. He has had good success with it in terms of controlling cancer and when rechallenging Xtandi after BAT loses its effectiveness. During our last couple of visits we spoke in detail about it and he said I would be a good candidate if my cancer progresses. He has a lot of experience administering and monitoring patients using this treatment which is very important. No trial necessary, it is part of the treatment options he prescribes for his patients who meet his criteria.
I was on Lupron for 2 years and my PSA started going up. My OC took me off Lupron and put me on 240 mg of Apalutamide which I could not tolerate. However, it did lower my PSA really fast. He lowered the dose to 60 mg/day and my PSA stayed low and stable for 2-3 months then started to rise slowly again. He then up the dose to 120 mg/day which I am now on and have not had a blood test as of yet. The best thing about it is that my testosterone went from less than 7 while on Lupron to around 350 now and I feel much better than when I was on Lupron.
There is a reciprocal arrangement between the NHS 🇬🇧 and the HSE 🇮🇪 in Ireland to facilitate patients medical needs. It does work both ways but I don’t know how you need to go about accessing it.
I guess your GP would have to refer you in the first instance. I’m not aware of any tracer dye shortage here, my sister has had recent scans with dye in Dublin. If your GP isn’t up to researching the access mechanism, go to your MP, they can use their contacts to help you get your scan. Having to wait until whenever is really inexcusable.
Otherwise if you have any family in Ireland (north or south) their GP might be willing to help get you the scan. There are actually regular coach loads of cataract patients going south to north for treatment. No political problem with meeting patients medical needs. Likewise north to south for childrens’ medical needs which can’t be met in Northern Ireland.
Even if you were in Ireland for a holiday, as a U.K. passport holder (you don’t have to have it with you!) though you national insurance number will really help; you simply fill in a single page form at any GP surgery (which gets sent to the NHS) and you will be seen by a doctor free of charge.
It’s all thanks to the Common Travel Area Agreement between 🇬🇧 and 🇮🇪 which has been in place almost a century!
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Advice needed please.
PSA rising on BAT
Could BAT be our last chance?
Keytruda failing, feeling desperate, advice needed quickly 
