I have locally contained G9 discovered July as PSA in June 2022 rose to 6.9 , 6 months after HIFU In December 2021.
Immediately started Bicalutimide 150 3rd August 2022 and planned radiotherapy for end of November 2022 after clear PSMA.
For various reasons I was on bicalutimide for longer than most before starting goselerin (Zoladex) on October 12th 2022. .
I am trying for 2 years but am not sure what the protocol or opinion is about timing. Is it 24 months from my starting Bicalutimide or 24 months from starting the GnRH Zoladex or 24 months from the end of radiotherapy?
I’ve seen lots of discussion about 12, 18, 24 and 36 months but find it hard to find if these include pre ADT or post RT ADT.
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SimMartin
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It seems like you're burning through a lot of treatments on a schedule. If bicalutimide is working stay with it. Am not sure why your doctor or team of doctors is "scheduling" these treatments. Slow down and get maximum benefit from each.
Not really rushing - I obviously had high risk a G9 hiding out of site from the two previous biopsies and MRIs or it ran away with itself after the HIFU! Either way the RT was uneventful in terms of any side effects so far - nearly 8 months on / it’s the low testosterone that’s the issues re tolerating as an already weakened from childhood polio and use wheelchair a lot.
I have to combat clinicians who get slightly scared of my ‘co-morbidities’ as they OVER catastrophise what my life looks like - and often think it’s like MS so under treat thinking ‘oh I’ll die of my other polio related issues sooner than the PCa’ - well maybe but as my polio specialist says I’m no more a risk of dying than another person in the next few years.
So that battle or balance between QoL and length is quite different for me as I am well accustomed to be weak, fatigued and dealing with physical problems. Ending up in a wheelchair full time by treating my PCa high risk G9 with the best sensible regime is a definite yes for me. I thunk others may struggle a lot more than me with fatigue and physical activity and needing help.
But this is nothing new - as we say as life long disabled people - the impairments are a pain in the arse and sometimes get you down but it’s the attitude and behaviour of others and society to us that causes us the most distress and pain.
It depends on the type of radiotherapy you had. If it was only external beam, 24 months are required. A recent analysis by Dr Kishan showed that only the concurrent+adjuvant ADT is important, not the neoadjuvant.
Yes I’d read that in a search - adjuvant ADT not neoadjuvant ADT length that was the more important element.
see how I do as at one point they were saying if I could tolerate 6 months I could stop - however i’m not happy with stopping and will aim for at least 18 months adjuvant if not the 24 months despite I think it impacting my polio muscle loss - with polio and ADT hard to separate out!
I have to agree with Magnus, if it works stay with it. Zoladex works also but for me it was increasing the arthritis pain in my knees to a point where it was difficult to walk. I stopped taking it & am at pre zoladex days.
it’s not the most pleasant drug Zoladex but my understanding is that Bicalutimide is inferior in comparison when dealing with high risk and recurrence so kind of felt best to stick with it despite the downsides
Hopefully, I don't believe in "experts' opinions" and other urban tales pertaining Bicalutamide, but went on to test it myself. With one 50mg tablet (split in halfs) every 8 days a PSA of 0.005 is it or is it not the definition of dynamite?
I read the lancet report and it made sense but seems the middle ground of 12-18 adjuvant months may or may not be as good as 18-24 but they aren’t sure.
It is difficult to get the medics to explain why they are doing what they are doing. Each patient is different. Press them for an explanation. I was on Zoladex for 12 months with G9, BT and pelvic IMRT. I was told that the literature supported 12 months ADT with an equally good prognosis. Thanks to Tall_Allen for the Lancet reference.
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