Hi All, my husband was diagnosed with Gleason 9 (5+4) advanced prostate cancer in January (medium widespread). His PSA was 182. He’s been on triplet therapy since March and his PSA is now down to 0.2. He’s heading into his sixth and final round of docetaxal and we just had a call with our oncologist. Whilst she recognizes he’s had a really good response, she said that the next step would be radiotherapy on his prostate (although no need for PET scan before as they wouldn’t do radiotherapy on any metastis anyway) and that should hopefully give him 1-2 years without any progression at very best - but she can’t obviously guarantee that. And when it does progress it’s likely to be hormone resistant and we’ll be into the next systemic treatment. I have to admit this has massively thrown us. I know there are no guarantees but we were hoping for some positivity that there’s a chance he could be on darolutimide for a long time, but we both feel very flat after this appointment. I’m also confused by we wouldn’t do a PET scan now and potentially try to eradicate any other areas by radiotherapy. Any advice would be welcome. We’re trying to stay strong but wish the appointment had given us more hope
hi anna42
i was diagnosed in january 2019 , gleeson 9 {5+4} advanced metastatic prostate cancer very aggressive .
had docetaxal too much spread for radiotherapy , started on abiraterone as well as zoladex 12 weekly injections .
i'm still here fighting , working part time .
keep positive and exercise that will help with the side effects and the radiotherapy to come .
gd luck
Thank you so much. I really needed to hear this and so pleased for you that you are responding so well to treatment. Do you mind me asking if you’ve had further treatment other than abiraterone since chemo? The next step now feels so uncertain and I think we need to focus on positive stories… thank you for taking time to respond
Hello, sorry to hear your news and I hope you are both coping.
To echo the previous posts here; there is scope for cautious optimism. Oncologists are, I think, pretty reserved when giving any kind of prognosis and many of them don't like to give one at all. As triplet therapy is fairly new as the 'standard' treatment for most stage 4 prostate cancer, there isn't much data on men 4-5 or more years on from their initial diagnosis.
My situation was similar to your husband's, with triplet therapy Inc 6 sessions of Docetaxyl followed by radiotherapy on the primary tumour. My Oncologist said that this RT was palliative - I.e. to ease symptoms, and RT is not really viable for metastatic PC unless there are only a few tumours (worth asking about perhaps?).
2 years down the line for me, and my PSA is stable at around 1, and latest scans were also stable. I will stay on 3 monthly injections and daily tablets of Darolutamide unless something changes.
The hormone treatment resistance (known as castration resistant PC) is, pretty much, inevitable, but it is reassuring to know that other treatments - 2nd line and 3rd line - such as different hormone treatment, different chemo, targeted radiotherapy injections known as Lutetium-177, and maybe soon immunotherapy, are all 'in the locker'. In fact, the majority of Clinical trials are testing to find better treatments for this castration resistant form of PC.
As a 46 year old, I am bloody well staying positive and doing all I can to aim for many many more healthy years!
All the best x
One thing that occurred to me here was that I have seen mentioned in notes backing up the notes American PRCI channel on YouTube mention of "de-bulking" which seems to be a process of dealing with the original site of the cancer as if it was newly discovered.
I wish I could find the original article again
It seemed as if the aim was not curative, but to significantly set the cancer back.
My memory says that it was quite successful.
Steve
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