metastatic disease later in life with dementia - update

[running_kiwi]

About six months ago, I shared an update about my 83-year-old father:

healthunlocked.com/advanced...

Thank you all for your helpful responses. Here’s a brief update on where things stand today:

In July 2024, I returned to New Zealand, where my father lives, after he experienced a delirium episode that required hospitalization. His physical and cognitive decline since then has been significant.

Back in February 2024, he was an active and healthy man, playing tennis twice a week and table tennis. However, after starting androgen deprivation therapy (ADT) with the three-month Goserelin injection, his health began to deteriorate. While he initially responded well, by June 2024, he was experiencing severe fatigue, cognitive issues, and bone pain. Due to the side effects, his wife (my stepmother) decided against continuing with the second dose of ADT, prioritizing his quality of life.

Here are some key milestones in his journey:

February 2024: PSA was 65.

August 2024: PSA rose to 115. Radiation for bone pain was scheduled, but by the time of the appointment, his pain had subsided, and he was feeling better. The radiation oncologist referred him back to his GP for quarterly PSA testing.

November 2024: PSA was 90.

January 2025: PSA has now risen to 256, and he is experiencing significant bone pain again.

In August 2024, the oncologist suggested that if his PSA increased, he could consider a one-month dose of ADT (Goserelin) and palliative radiation for pain. However, I suspect my stepmother is reluctant to revisit ADT due to the severe side effects he experienced. I remain hopeful that palliative radiation will help manage his pain.

It’s clear that he’s nearing the end of his journey. As his son, I’d like him to consider treatments that could prolong his life, such as ADT, but I understand the focus is now on comfort and quality of life. I don’t know much about other treatments, such as abiraterone. My impression is that without long-term ADT, options like abiraterone or radiopharmaceutical therapy may not be viable. Additionally, radiopharmaceutical therapy is not covered in New Zealand, and the cost seems disproportionate to the minimal benefits in longevity.

We have an appointment with the radiation oncologist tomorrow. My stepmother has already decided to focus on palliative care rather than aggressive treatments. Over the past three months, his dementia and mental cognition have significantly declined.

I wanted to share where we are now and thank you all for your support and feedback.

[GP24]

If he would get some sort of ADT which he can tolerate, his life is not coming to an end. You could try Enzalutamide monotherapy which has a different side effect profile and this could make him live for a couple of years from now.

[petabyte]

Have you considered Orgovyx?

Since it is a daily tablet you don't need to commit to months of treatment. If it is a problem, just stop.

It also acts more quickly than the goserelin proposed by the oncologist and if stopping, T recovers faster.

On the other hand it does the same thing as Goserelin (in a different way) so the side effects will likely be similar.

[running_kiwi]

GP24 and petabyte thanks your for your feedback and ideas. He’s currently taking bicalutamide daily. I’ll bring up the ADT that you’ve mentioned with the specialist. An initial search seems to indicate that Enzalutamide isn’t covered in the New Zealand health system, but relugolix (Orgovyx) is covered.

It’s a difficult situation as with my Dad. It’s unclear to me if all the treatments are impacting his dementia. He’s miserable and weak at the moment and there is a desire by him and my stepmother to not prolong life. I still hold out hope that one of the treatments may be beneficial to him, but I don’t think they want to continue to try to treat the cancer at this stage.

[petabyte in reply to running_kiwi]

After posting I wondered if Orgovyx was actually approved in NZ. I see relugolix as a component in a medication for uterine fibroids but it does not appear to be available for PCa. Orgovyx is 120mg tablets.

So I suspect it is not an option.

medsafe.govt.nz/searchResul...

[running_kiwi in reply to petabyte]

petabyte Thank you for that additional info. At the end of the consult I asked about relugolix as an oral ADT. He hadn't heard of relugolix (or I didn't pronounce it correctly) at any rate, h said that oral ADT are not available In NZ and he would recommend the 1 month Goserelin injection. Last time the 3 month ADT knocked him down a lot, so we are probably not going to try that again and focus on QOL.

[GP24]

He should take 150 mg Bicalutamide daily.

[j-o-h-n]

I'm 88 and starting to forget words and names. I've been taking Lupron forever and switched over from Casodex to Nubeqa in April of 2023. I had a Psa reading the other day which shot down from 0.41 to 0.40 (big Fing deal). My theory is , if Pca doesn't get you then your meds will. So as the great physician Hippocrates once said to his cheating wife "You're damned if you do damned if you don't".....Us senior citizens live in a land of peaks and valleys so just go with the flow and let your dear Dad be your dear Dad.

Note: if this post doesn't make any sense then consider it an example of an old Geezer babbling his ass off....

Good Luck, Good Health and Good Humor.

j-o-h-n

[dhccpa in reply to j-o-h-n]

Excellent 2.5% drop in PSA!

[j-o-h-n in reply to dhccpa]

You're right again. I checked your computation with my private home calculator, my darling wife....(thanks).

Good Luck, Good Health and Good Humor.

j-o-h-n

[running_kiwi]

 GP24 and  j-o-h-n Thanks very much for your insights. Increasing the Bicalutamide is one of the options I'm hoping for since the Goserelin impacted him so much. Yes, just really hard that he didn't respond to the ADT well. Thanks again for taking the time to reply.

I really appreciated your comment j-o-h-n , Us senior citizens live in a land of peaks and valleys so just go with the flow and let your dear Dad be your dear Dad. ❤️‍🩹

[Justfor_ in reply to running_kiwi]

A glass of grapefruit juice daily will increase the bioavailability of Bicalutsmide, as well as other medication he may be taking. Mind you that the standard dosage of Bicalutamide is nothing but a joke. From the initial study they found that at 50 mg daily the drug concentration variance in blood was (if memory serves) about 1:20 for the cohort of 114 patients stratified at that dosage. So, for some people standard dosage is under and for others over what is needed to do the job. I speak from personal experience. For 3 years now 1/10 of standard dosage (plus grapefruit juice) maintains my PSA where I want it to be. I have a thread documenting all this. Link in my bio.

[dhccpa in reply to Justfor_]

Do you get gynecomastia from bicalutamide? Or do you use Tamoxifen? Thanks.

[Justfor_ in reply to dhccpa]

I started Tamoxifen at 10 mg/day from day one. During these years I have tried four times to reduce the Tamoxifen dose, yet within a week I felt tenderness in my breasts and aborted. But, the 5th attempt seems to be working. For the latest 3-4 months I take 10 mg on the day I take the half tablet of Bicalutamide and 5 mg the remaining four of the 5 days cycle. Touch on wood, no tenderness, nor any breast enlargement up to now.

[dhccpa in reply to Justfor_]

Thanks, great feedback.

[j-o-h-n in reply to Justfor_]

Depit.

youtube.com/watch?v=k4R5wZs...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n

[Justfor_ in reply to j-o-h-n]

Drink the juice it was, not catapult the fruit cup, Gianni

[j-o-h-n in reply to Justfor_]

έτσι και έτσι"λόλ"

Good Luck, Good Health and Good Humor.

j-o-h-n

[hansjd]

Has no one suggested docetaxel chemotherapy for your father? It could work very well for him and the side effects are usually not difficult. It sounds to me like he has been given very little treatment and that if he had more he would do much better. It doesnt have to be ‘aggressive’ just what would normally be given as SOC. He could try a different ADT also e.g. degaralix. Or move straight to 2nd line e.g. abiraterone.. I would avoid Enzalutamide given his lethargy as it can also have the same effect. Given the right meds I think you father potentially is a long way from palliative care.

[petrig]

How about Nubeqa(darolutamide)as monotherapy.Darolutamide does not cross the blood-brain barrier and for this reason, reduces the possibility of seizures.euoncology.europeanurology....