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Dad (68) recently diagnosed with metastatic PCa

User
Posted 12 Aug 2024 at 13:13

Originally Posted by: Online Community Member

Hi Mangol

I finished my 10th and final cycle of Docetaxel around 4 weeks ago,my PSA has slowly been coming down (at the moment it's 9) I have a blood test today and an appointment on Thursday with my onco chemist if the result is good news and PSA has fallen I will ask the questions again why I cannot have Docetaxel again,is it cost?who pulls the strings?who makes the decision?it's all very frustrating when the treatment has worked once so why won't it work again!!!! Errrrrrrrr.

Regards Phil 

Hi Phil,

Glad to hear your Docetaxel treatment is going well, and best of luck for your appointment on Thurs.

Good question - have they definitively said you can't have it again? I'm no expert on this, but I was under the impression that patients who had a good response to Docetaxel were sometimes able to do so again (unless that's not true in the UK?) - though if I recall correctly, there needs to be a period of time before the second course of treatment. I think Docetaxel can sometimes be less effective the second time around, but from what I read, those who had strong response the first time around were more likely to have a good response the second time. 

So if you've had a good response to Docetaxel, can imagine it's worth asking the question and ensuring you get a clear explanation for why if you're being denied it. If it does come down to cost (I'm unsure if it is, since I think Docetaxel is a lot less expensive than some of the other drugs like Darolutamide), I suppose there's always the option to enquire about private treatment if you have the means.

User
Posted 12 Aug 2024 at 13:19

Originally Posted by: Online Community Member

Hi Magol again.

In answer to your question the radiotherapy targeted the prostate only not the mets. Mothership blasted into oblivion I hoped.

In hindsight with a single met I would have probably been a good candidate for SABR as well but this was never offered.

Wishing your dad well for his future treatment.

Hi Jasper,

That's very interesting to know, thanks for saying. We'll have to see what the scan results look like and what the oncology team recommend - but useful to know that this might be an option.

User
Posted 07 Sep 2024 at 01:16

Hi Magol

I am new to this forum and have just read your posts, you can see my diagnosis in my profile I think!

I have had the same treatment regime as your father over the last 12 months the only difference being I was given 6 x double fractions of external beam radiation to the prostate and surrounding area, the thinking of the oncologist and radiologist was that it may be of some benefit to try and eradicate the source, time will tell!

In regards to Chemo there is possible evidence that combining "Bovine Lactoferrin" with Dox may be of some benefit with the treatment, DYOR.

Regards Tim 

User
Posted 04 Oct 2024 at 23:12

Hi all,

Just a quick update on this - Dad had the scan results today with his oncologist, and it's fairly positive news - the scan was completely clear.

In his Feb scan, there was no sign of activity on the bones (i.e. no mets picked up by the scan) but with some small number of cells remaining in the prostate. This time his scan showed that his prostate was also clear, as well as his bones. So this scan was in fact even better despite PSA being <0.01 then and higher now. Big relief - especially since the Oncologist said the scanner used at this hospital was highly sensitive/accurate, so the fact it picked up nothing was very reassuring. (I'm guessing the explanation for this may be that at the time of the Feb scan, the effects of the chemo were not entirely complete yet)

No suggested changes to treatment (which consists of daily Darolutamide and obviously HT injections every 3 months), for now at least.

The concerning part was - as discussed previously the PSA is slowly creeping up since June - from undetectable in the Spring (<0.01) up to 0.4 in early August. The good news here is that last week's PSA test was 0.26, which is obviously a decline from 0.4 two months previously. This came with no change in his treatment - so maybe suggests PSA could perhaps be stabilising - for now at least? We'll need to see what subsequent readings say, as it does seem like these things can fluctuate, and the trend could easily continue upwards.

The oncologist's view was that they'd want the PSA to be <0.01 and there's something that must be causing this for it not to be at that level, so they're going to remain keeping a close eye on him. He'll continue having PSA tests every 2 months, as he has been, and they've said they'll give him another scan in 6 months' time.

One thing I was wondering (and would be interested in views regarding) is whether we should be looking at his testosterone level? From reading I did a few months back, I got the impression that sometimes testosterone not being suppressed quite enough can cause these sorts of numbers and maybe we should check in case it could be lower. I don't have this data but I'm sure they've tested this.

Alternatively, perhaps this is just what a slow, gradual progression to castrate resistance looks like. After all, his diagnosis was a Gleason 5+4 (i.e. very aggressive and not generally a good prognosis), and obviously controlling metastatic disease is (in most cases) fundamentally about slowing progression as much as possible - not everyone can stay undetectable for years of course, even on the best treatments. His treatment regime has clearly worked very well and even now his initial treatments are still holding up, with plenty of other options left on the table when they eventually fail. Trying to remain grateful for that - with a diagnosis like his, things could have been far worse by now. 

Overall, I still think this is quite positive, and we're taking some comfort in these results. Dad is understandably still anxious. If nothing else, though, we're definitely reassured by the quality of his care - they're being very proactive about keeping on top of things, and we're very grateful.

Edited by member 04 Oct 2024 at 23:34  | Reason: Not specified

User
Posted 08 Apr 2025 at 11:24

Hi all, grateful for some advice as we're now sadly in a more difficult situation. Dad's PSA sadly has continued to rise (see update on my profile, summarised here):

November 2024: PSA 0.8

January 2025: PSA 1.8, MRI scan booked in for Feb

March 2025: PSA 4.9, MRI scan results (received in April) howed a recurrence in the ribs, definitely castrate resistant now. Darolutamide to be stopped, awaiting appointment with oncologist April 11th to understand next treatment options.

Unfortunately, today he's been told his consultation is now scheduled for 2 weeks later - April 25th. This is making us anxious as his medication runs out next week. We know they'll be changing the Darolutamide - I don't know if he'll be put on another set of tablets, but in case he is, it's doesn't feel right to have a gap just because of a delay in the consultation? Delaying his next treatment doesn't seem ideal. 

Worth noting - he's being offered Cabazitaxel, but we want to go for Lutetium-177 privately first. Recent studies appear to show that patients who do both get the best outcomes and the sequencing doesn't matter (I.e. Lutetium-177 first or Cabazitaxel first) - but quality of life is better with Lutetium-177 first as side effects profile is lower, and his QoL is pretty good right now. The main thing harming his QoL (other than the ADT) is the peripheral neuropathy that Docetaxel gave him after he finished it only 15 months ago - so Lutetium-177 now makes sense from our perspective. 

So we wanted to defer the Cabazitaxel and go privately for Lutetium-177, for now (obviously he will need a PSMA-PET scan to know for sure he's a good candidate for the treatment).

Only problem is we need a referral to the private practice to get the Lutetium-177 treatment - and waiting for his oncologist appointment and then the referral afterwards could be a decently long wait while we're all quite anxious for him to get his next treatment. He also seems to be starting to develop some bone pain on his right side of his ribs.

Keen for any advice - wondering if we should just be asking for a referral to the private clinic at this point, before we even have the consultation with the oncologist (I don't know if this is realistic)? Alternatively, maybe I might be able to get the ball rolling with the Lutetium-177 provider before we've had the formal referral, just so everything is ready to go and we aren't wasting time.

Just feels like we're being left in the lurch here. His scan was 2 months ago now, took ages to get the results (his results may well be quite different if he was scanned today!), and now they're making him wait another few weeks for a consultation where they will propose a treatment that we don't actually want right now. Meanwhile he's becoming symptomatic. We just want to move forward but feel we're being let down. Frustrating. 

User
Posted 08 Apr 2025 at 14:51

Turns out he's been booked in for his Cabazitaxel a couple days after the (delayed) consultation. We haven't even discussed this treatment with anyone yet, and our intention was to go for something different. Having to wait 3 weeks just to say that, with chemo already pencilled in for a few days later - feels like we're being bounced into this without even a discussion. Sigh.

 
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