Hi,
I’m new to the forum so please bear with me if I’m a bit all over the place.
I’m 67 and was diagnosed with PC in September 2017…..Gleeson 3+3 low grade with a PSA of 4,I went on Active Surveillance with PSA tests every 6 months & biopsies every 2, my PSA levels fluctuated up and down over the years but started to increase in 22/23, July last year (24) I had a template biopsy and my PSA had risen to19, I was called into the hospital and advised my Gleeson had now changed ( 4+3 ) and that a procedure was advised as there was a suggestion from my MRI that there was a small “Cribiform” ? pattern within my prostate and that it was very large at 122cc I was told that the cancer was still within my my prostate but the time to act was now.
After consideration I went for DaVinci surgery on October 19th 2024, this was, according to my surgeon a complete success and there were negative margins from Histopathology report.
After the Catheter was removed after 2 weeks I began my pelvic floor exercises 4 times a day, I worked hard and have now achieved full continence at night and 1 Tena Level 2 pad per day, the ED is work in progress with a Soma 2 pump but again things are slowly improving in that department.
Now to the crux of it…on my follow up consultation with my surgeon after 8 weeks I was told my PSA was 8.5!… no where near where it should be, I had a further PSA test 1 week after that and that came back at 9!….I was then referred to an Oncologist in the private sector who told me various scenarios and referred me for a PMSA scan and a further MRI, as advised I had a further PSA test in the private sector 3 weeks ago which came back at 0.6!!… obviously I was encouraged to say the least by that but knew I would still have to have some form of treatment as it was still high, imagine my surprise when last week I had another PSA test with my GP that came back at back at 8.2.
I have a follow up consultation on the 31st to discuss everything and to learn the results of the PSMA, MRI and these conflicting blood test results, I’m struggling to get my head around what’s going on with the bloods, I have seen 2 surgeons and 1 Oncologist who have just said “ There’s something strange going on and we’re not sure what it is”….hopefully the PMSA will tell me and I’m expecting the worse.
I'm sorry it’s been a bit of a monologue, but as we all are with this disease I’m frightened and I don’t know which way is up.
Thanks, I hope someone can help me understand things.
Hi !
Recognize what you’re saying and lots of things to take in, facts one doesn’t understand, many why and how with this disease and treatments
Anyway, Relugolix is very practical if you, like me, wan’t to administer the medication by yourself.
There are of course other things that is in favor of using Relugolix (Orgovyx). By using antagonist hormone therapy you don’t have to add medications like Bicalutamide in order to prevent Testosterone flares that is very common when starting agonist hormone therapy. Another thing, because Orgovyx is daily use to suppress Testosterone, when coming off, studies have shown that testosterone recovery is faster when on Orgovyx compared to more traditional hormone therapies you have a injection for a specific period.
Very good and sounds reasonable that you’re in for long term hormone therapy to add to the possibility of curative intent. If I where you I would check with your medical team to add Abiraterone as well in time for radiation, in order to really suppress Testosterone and androgen production, which creates the most hostile environment for the cancer to survive in and then adding radiation on top of that to try to maximize efficacy of your treatment and of course also your chances of a curative pathway. It might be a good think to check with your medical team anyway.
Thanks for your wishes on keeping me well and for sure, I’ll keep you and those interested update on progression for me 
Best wishes - Ulf
Hi !
Just ask away To answer your question, before I started Orgovyx in July 2024 I had already been on Firmagon for half a year (started in January 2024) and had also added Abiraterone in April 2024 so most of my symptoms was already there (for example fatigue and lower libido) or had started and decreased as well (for example hot flashes)
But trying to connect side effects with specifically Orgovyx, I would say my ups and downs in the mood and also my little bit slower thinking are those things I can Connect more to Orgovyx.
Actually after being on hormone therapy (Firmagon and now Orgovyx) now for a year I pretty much feel I’ve plateaued but of course the first months some side effects became more obvious( e.g. Lower libido and fatigue) some came and went away so, I would say my mood and thinking is more obvious in regards to Orgovyx.
Just ask and if I can answer I’ll do it and it’s definetily not a problem
Hi!
That’s why we’re in this forum, to help out with our own experience and as you’ve noticed Relugolix (Orgovyx) is fairly new as a hormone therapy and there are not that much long term data yet but the data so far is very good when comparing to other hormone therapy and for me it was natural choice because I was on the other antagonist; Firmagon and my injection site reactions got worse for each new injection and the of course I liked the idea of administering all my medications myself.
Well, you’re probably right that none of us cancer warriors are the sharpest knives in the drawers all the time and lots of curve balls to handle
But sounds like your doctor have taken all aspects into consideration with hormone therapy, Abiraterone and Prednisolone long term to maximize the efficacy of your treatment and then just hope for the best outcome
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