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.
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running_kiwi
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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.
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.
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.
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.
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....
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. ❤️🩹
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.
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.
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.
hi hansjd , thank you very much for these suggestions. No, unfortunately, docetaxel has not been mentioned. I'm not sure if it's the New Zealand health system, but having a cohesive care teams has been a challenge. His urologist started him on ADT (Goserelin) initially and didn't refer to an oncologist. After he had the issues with significant fatigue and mental slow down, he want off the ADT and the urologist referred him to a Radiation Oncologist for treating the bone mets.
I've always felt like we could have pursed chemo, but there seems to be great reluctance, perhaps because he's 83 and the dementia is really a much more significant issue - most of the specialist don't really consider the dementia. Degaralix seems to approved in New Zealand, so I will ask about that.
The Radiation Oncologist has mentioned abiraterone, but with caveats. I will ask about the benefits and risks of that. Previously, it sounds like it might be difficult for my Dad, with testing every 2 weeks.
Hi running_kiwi. Degaralix requires an injection every 4 weeks. Some people find it uncomfortable, although most tolerate it well. Orgovyx, like Degaralix, is an antagonist (as opposed to an agonist like Goserelin). I and many others believe that antagonists work better. Orgovyx is a daily pill rather than an injection. In Australia Orgovyx is unfortunately not available on the PBS . Maybe it is in NZ. It would be worth asking.
Abiraterone is also pills (2 daily 1/2 hour before food). Blood is usually tested once a month or less often. Not sure where you got the 2 week testing from. In Australia , Abiraterone is on the PBS. It may be similar in NZ.
The bottom line is that I definitely think your dad should be seeing a medical oncologist, especially one that specialises in prostate cancer. Where in NZ are you? Would that be a possibility? And see what he/she recommends re chemo. All the best.
Thanks hansjd that's really helpful information. Abiraterone has been mentioned in the past. He really didn't do well on Gosereline, which I believe that lowering his T was really difficult for him.
The challenge in NZ is that he can see the radiation oncol with his private insurance, but medical oncol would likely be a referral to the public system and a long wait. My step-mother is easily overwhelmed by the referral process here and is reluctant to even put him through pallative radiation. I'd say the chemo is just completely off the table because of his poor mental health (dementia).
hansjd Some good news, the radiation oncologist has referred my Dad to medical oncology, probably because of all my questions. I'm hoping this will lead to some proactive hormone treatment, perhaps degaralix.
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....
Thanks you all for the feedback and suggestion. Brief update. We had a consult with the radiation oncologist a week ago.
He prescribed dexamethasone steroids for his bone pain (right upper femur). That didn't work so well as he had trouble sleeping. He has vascular dementia and become more confused and frustrated. Yesterday, the radiation oncologist (clinical director of the cancer unit who prescribed the steroids for pain) then said we needed to talk to his GP for pain management. The GP suggested he go back on liquid morphine, which really has been good. Today, he was much better. I don't have a great impression of the specialist when it comes to the recognition of the additional issues with patients with dementia.
Generally, his wishes are to not prolong treatment if he has adverse side effects. To me it is a delicate balance between pain management and potential treatments that could shrink bone mets (and reduce pain). I also think that just because he was suffering several months after starting ADT, that doesn't necessarily mean it is what caused the fatigue, although it seems very plausible. The vascular dementia makes all this much more challenging from trying to understand what is impacting his quality of life.
I'm personally have a very hard time accepting discontinuing any treatment of the cancer and focusing on palliative care. I have a lot of questions about how the progression of PCa will be with not additional ADT and the benefits of ADT for pain - the trade offs. I do understand if ADT makes him miserable and only will extend his life a short time, then it is not increasing his QOL.
We had a set of CT's today, and hopefully that will give some indication of the PCa progression and what we can expect. It's definitely challenging for me with the New Zealand public / private health care system, and lack of a cohesive care team. My generally impression is that the NZ public systems is stretched very thin here.
Radium 223 (Xofigo) is also useful for bone mets but whether the side effects are worth it in your father's case is difficult to say.
Two people have suggested monotherapy with a second generation anti androgen. Enzalutamide (Xtandi) and Darolutamide (Nubeqa) were both mentioned. These could be an option because they keep Testosterone normal while limiting availability to the cancer.
If they are available they are still under patent and the price will be high: retail price around 3k Euro per month here in Belgium, slightly more for Nubeqa which has less side effects.
petabyte Thanks, I really appreciate the additional information and research regarding what's available here. prostate.org.nz is helpful in seeing what NZ will approve.
I agree, I've been disappointed with what's available. Fortunately my Dad has limited health insurance, which so far means he can be seen in the private system. However, the treatments all seem to need to be NZ approved, for example Abiraterone might not be covered if it's not being taken along side ADT.
I asked about radiopharm and the RO shared that it's very expensive - like 30k a treatment and takes around 5 treatments and would only extend lifespan a few months. According to the RO a few months ago, there are some patent issues going on with radiopharmaceuticals.
Enzalutamide (Xtandi) and Darolutamide (Nubeqa) will be on my list of questions for the medical oncologist. Thanks for all your suggestions.
Great to hear from a fellow Kiwi (I'm from Dunedin).
greetings from fellow kiwi. Yes our treatment options here are poor. I am 80 and have been on ADT for 27 months. In my view at this age the side effects are overstated. Feel free to contact me at tony@mountbrown.co.nz
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