Lorraine is a nurse specialist and sex therapist and here to answer your questions...
Good morning everyone. I'm new here. It's just got scary. One last hormone to try now it's metastised. After that, symptom care only.
I've been strong up to now, but now it's got a bit more real. Scared.
I ve had metistic PC for two years now, and although I know it will never be cured, it is liveable with, depending on the person is how they manage the pain, in my case I take 2=30 mg of co codamol a few times a day.
Has he had Radiotherpy, or radium 223, I myself have not had these yet but there an option if it gets to much to bear.
As you have said he's been battling for some time and may have had all the available treatments so I hope the next one he's to try keeps him well.
Hello Bonsterboo, welcome to the community, sorry to hear things aren’t great just now. It would be useful if you gave us a bit more information so that we can support you better. E.g. Age, general health, PSA on diagnosis, Gleason score, scan results, treatment so far and PSA now.
I have a fairly extensive profile here which records what has happened with me which I update regularly.
Best wishes, Ian
Thank you so much for your reply. He is 81 and his health and fitness wasn’t conducive for chemo on diagnosis. Radio was an option on diagnosis but he declined. He went on an injection hormone instead. It’s aggressive but can’t recall Gleason score from then (4 years ago). The diagnosis came after prostate surgery (woke up one morning and couldn’t pass water at all and got rushed in). After the injection his PSA stayed low for ages (under 20 or so) and then eventually started creeping back up. They tried bicalutamide for a good while but still PSA increased then went to dexamethasone as the malignancy looked to be contained. They THINK it’s elsewhere now but only sure about a soft tissue area between prostate and rectum. Also hinting it’s possibly in lymph nodes in abdomen but we haven’t been told anything concrete. It’s now around 390 PSA and, due to his diabetes, arterial fibrillation, hypertension they can only give one last hormone to try and after that it’s palliative care. Bit shocked as the urologist who was looking after my dad put all the info across as a lot more positive until we saw the oncologist. Long story made short. Does that make sense? He was rushed in yesterday for prerenal AKI and very high creatinine levels (acute kidney damage too). Mental 72 hours. Just bringing it home that he is mortal! X
Thanks for the update Bonsterboo. It sounds like your Dad’s prostate cancer has become castrate resistant which means those damn cells have now managed to work around the testosterone starvation from the therapy. Are they offering Enzalutamide or Abiraterone in addition to the current hormone therapy? See the link here for options when the first hormone therapy isn’t working so well anymore. I’m so sorry he has reached this stage and he is having other health issues too.
(My mum has hypertension and atrial fibrillation, she has had these a long time)
There are further side effects with abiraterone and enzalutamide but if he is able to tolerate them and it is effective (some Prostate cancers don’t respond unfortunately) then it will buy him more time.
It is a big shock for you all.
Sending best wishes to you, your dad and the rest of your family.
Hi again Ido4,
When you say “castrate resistant”, I’m not totally sure what that means. It’s always a learning curve when you are addressing a new medical term etc.
They offered the Enzolutamide and gave us ten minutes to chat, then returned and said he couldn’t have that due to blood thinners. The only option we have now is abariterone (or however it’s spelt!).
My dad was really pragmatic about the fact it’s the last option, but then asked me in the car on the way home if he can have radio as a last resort. I had to break his heart (again).
Goodness knows how you deal with all this on a daily basis.
Thank you so much for taking the time to support.
Massive help just knowing there is someone else with this experience.
Thank you. I can’t imagine someone dealing with this when they have a full life to live. X
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