Locally advanced and advanced prostate cancer, staging, treatments, best practice and anything good to know

Hi David2017 ,

Thanks for your respons and there is never ’one size fits all’ when it comes to PC treatment and from what I’ve read from studies regarding continous or intermittent hormone therapy, the perhaps the only main difference is the time you have a ’vacation’ from HT but otherwise I’ve not seen any proof that one method is better then the other treatment wise

Did you first do chemo before you where put on HT? And then after that RT as i understand it.

Where you able to have PSMA PET Scan in 2017? No discussions to add Abiraterone (Zytiga) when you where diagnosed and started treatment?

Hope you respond really well now when adding Enzalutamide and put the ’PC beast’ into a long remission 

Best wishes - Ulf

Hi David, 

I think you are right, a very small % of me hopes everything has been caught with the RT, I guess that is wishful thinking. The articles I read were more about being able to pre-long the use of HT and keep it working for longer with intermittent use, before moving on to the next stage. Our consultant thinks there is no point and it will make no difference. But we spoke to a consultant at the Royal Marsden and they felt nothing was lost if he comes off and is monitored well, then you can see how the cancer is behaving.  This is a big ask really with time and resources, monitoring vs just staying on it. How did your mets reappear? Did HT start to fail?  
Lorraine

Hi BW / L

Of course nothing is a garanty with any of these treatments as we all know and we of course always have to trust the experts. My only concern is that you never had the possibility to have a PSMA Pet Scan to perhaps identify any mets so the only thing they are sure of is the T3B and perhaps LNs with MRI so, perhaps T3BN1 but other from that you have never mentioned discovered mets.

They are treating your husband according to ’ standard for locally advanced, very high risk T3BN1Mx’ amd  if I remember correctly it’s 20 fractions to prostate, seminal vesicles and pelvic nodes, 3 years of hormone treatment and 2 years of Abiraterone I think with a possible ’Cure’ (never a guarantee) and I must say that your husbands respons with PSA undetectable is extremly good (my personal opinion) and I think it’s ok to have the open discussion with the MO / the medical team about the possibility of vacation if your husbands PSA still looks this good and how else do they know if the radiation therapy worked or not?

One other question. You mention Abiraterone lifetime. Is it only Abiraterone or both HT and Abi? If it’s only Abi, what’s the point? From what I read Abi is also very good at chemical castration and suppress T-levels. Well, always interesting to learn from others treatment paths.

Best wishes - Ulf

Hi Ulfhbg 

he has Zoladex three monthly injections and Abiraterone /prednisone for as long as it keeps working. -medication for life.  Because he is 58 he is quite young to have this level of PC. Most men will be older with other problems in the mix . They would possibly die from something else rather than PC, because they have less years ahead anyway. So the statistic information is based more on older men. He falls in a younger category where there is less information. It brings in the question of how long can a younger man take Abiraterone/ADT for? What is HT for life? how long can he survive with treatment as he has possibly more natural years ahead.  He is physically fit, he’s doing all the right things, excercise / food. His consultant told us he is aware of a man that has taken Abiraterone for 15 years, from trial. I think this must be rare to go that long as I always thought 2-3 years was average. We will see. 
Lorraine

Hi !

I was also 58 when I had my diagnos and as you can see I have been in treatment mode since 2022 intill now. So I really understand the thinking of treatment for life and what that means in years, not perhaps even be 65-70 years. And like your husband I also make sure to stay fit and eat healthy. The biggest problem is mentally, the sleep and sometime I really have problems being social and trying to focus on being positive and enjoying life.

Anyway, I think your husbands respons so far i excellent and if this keeps up I personally would have a serious discussion on taking breaks in the future.

One other thing. just to think of. I initially had Firmagon as ADT. I had problems in the injection area and switched to Orgovyx (daily pills). So you administer them yourself and IF your ever allowed to go on a break Orgovyx have much better recovery of Testosterone than other ADT. And then if you need to go back on ADT Orgovyx (and Firmagon) are ADT antagonists and they never create Testosterone flates before suppresing Testosterone. A tips to look into and I think Alwayshope had found good litterature as always and it seems that Orgovyx and Firmagon seems to have less side effects long term for heart problems that may occur. So, a tips from me to maybe look into 

Best wishes - Ulf

Hi Lorraine.

I found the attached article interesting whereby a patient was re challenged with Abiraterone after undergoing several different treatments for recurrence in between time. It appears in this particular case that the re challenge worked just as well as when it was administered at the start of the journey and delayed the time to progression again. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354285/

The possibility of rechallenging is a conversation I had been intending to have with the GG as my husband had a good response to Enzalutamide for 18 months until his 2nd progression.

HiAlwayshope 

brilliant!. This is definitely an area I need to look at . Thank you for your help and link x

Hi Alwayshope !

Always finding the good stuff and interesting reading as usual  I suppose there is some scientific logic when treating locally advanced very-high risk with whole radiation to prostate and pelvic and sanning 3 years ADT and 2 years Abi 

Best wishes - Ulf

Hi BW / L !

Yes, interesting to say the least. I mean, are MO / medical team afraid that your husband is off ADT and Abi and don’t work if there is a recurrence? I mean, then they perhaps may have the possibility to run a PET Scan and actually identify where the recurrence is before putting him back on ADT and Abi. And if by any chance he don’t have a recurrence ….. 

Anyway your husband seem to have reach a really excellent Nadir (0.04 / 0.05) and that’s very very low I must say so in extremely good remission and if stays this stable for months to come I would have had a serious dialogue with the medical team 

Best wishes - Ulf

Hello Lorraine (BarryW) 

BW said:

 Millibob how do you actually feel now you have come off HT? What has the process been like? Do you feel normal again?  

Sadly I am still on Hormone Therapy, I had my last 6 monthly injection on 7 June 2024 so on a technicality I can stop shopping at "Pretty Little Thing"  on or about 5 December 2024 - and I feel after 3 years it may take some while to fully leave my body.

So I can still cry for England, Sweat when I want, itch until the moisturiser arrives, forget things, wonder why I can't see my toes (I have bought bigger trousers), enjoy my "moobs" forget about Sex (what's that!!) oh and who mentioned fatigue.

Boy am I looking forward to feeling "normal" again - roll on 5 December 2024!! 

But thanks for asking .

Best wishes - Brian.