PSA still low but cancer progressing

[Benkaymel]

I've been on ADT plus Xtandi for about a year (see my profile) and my PSA has steadily reduced and stayed low. However, my latest CT scan shows that the tumours on my bones and lymph nodes are increasing in size and there are now a few small lesions appearing in my liver for the first time. Not the news I wanted to hear today at my MO appointment. I'm also getting increasing back pain which he believes is due to the mets on my spine.

The MO has said I need to stop Xtandi since it isn't working and move on to Docetaxel. I had a biopsy today of one of the groin (lymph) lesions which will be tested to check if Docetaxel is the right type of chemo to have. I asked about other potentially useful treatments such as Pluvicto or immunotherapy drugs but he said they were not recommended as the next step. I think he's just following the NHS script for treatment progression.

Does this all sound right or should I seek other opinions or does anyone have any other advice for what I should do next please?

[agnut]

It might be prolactin dependent cancer that is progressing. See my last post

[Benkaymel in reply to agnut]

Thanks for that. I've looked into your post and responded.

[Proflac]

TA posted I think yesterday about a study showing that Pluvicto before chemo no benefit over chemo then Pluvicto. Useful to know given that Pluvicto still not available on NHS.

[Proflac]

On the other hand.... I think this suggests something different. I guess all these trials are small. link.springer.com/article/1...

[dhccpa]

Can't you combine Xtandi with chemo? Ask TA. I think he posted on that recently, but double check me.

prostatecancer.news/2022/10...

[Benkaymel in reply to dhccpa]

Not on the NHS unfortunately.

[85745]

Why do they wait to ok immunotherapy drugs as a last resort in most cases, when ones immune system may be at more weakened state compared to earlier on ? Expecting an exhausted immune system to respond to IT at that stage seems ...... Maybe I'm missing something .

[Ian99]

Worrying news. In my own case I have elevated PSA and T but it is the scan comparisons which drive next treatment. MO has said chemo (likely Docetaxel) would be next so I wouldn’t be surprised if they’re telling you the same. Pluvicto is not yet covered although I saw a recent ToL article referring to possible November approval from Nice. Good luck.

[Benkaymel in reply to Ian99]

Thanks Ian, recently I also have been feeling exhausted most of the time. I had fatigue before but this is another order of magnitude. I fear the cancer is progressing quite rapidly now. Hope the chemo helps for both of us and that pluvicto will be approved after that. All the best.

[NickJoy]

I'm sorry about this new issue. As you know there are very few trials etc. to look into in the UK but it might be worth trying to get referred to de Bono's team so that you are front of the line if something comes up? My husband had chemo and coped well with it. All the best.

[Benkaymel in reply to NickJoy]

Thanks, I'll look into de Bono's team. Do you have more info on it? Most trials require that you've had chemo so I'll start looking at options.

[NickJoy in reply to Benkaymel]

TBH it is always a bit of a mystery to me how the NHS referrals system works. I know you are entitled to a second opinion but I don't know how you go about getting it. De Bono is based out of the Royal Marsden. There may be someone on here who is already treated there and could help? I think Nick Park is also another name that crops up. I don't know how we choose who to get referred to. That said, I think it is your choice.

[Derf4223 in reply to NickJoy]

From Rodney Dangerfield "you want a second opinion? You're ugly too." Humor alert

[Benkaymel in reply to Derf4223]

🤣🤣🤣

[Farn in reply to NickJoy]

Hi I think you may be referring to Nick James rather than Nick Park

[NickJoy in reply to Farn]

Yes I think you right. Thank you.