Metastatic PCa & Dementia – Looking for Guidance & Support

[running_kiwi]

Writing as a son of an 83-year-old father with moderate vascular dementia and metastatic prostate cancer (mPCa). Both this conditions are worsening.

Firstly, thank you for all the feedback on my previous posts—this forum has been incredibly helpful for both education and support. healthunlocked.com/advanced...

We are at the stage where his PSA has doubled in two months to 262. He only received one three-month injection of ADT before stopping due to significant side effects, including increased confusion, a delirium episode that led to hospitalization, and extreme fatigue.

He was also taking daily bicalutamide, but that has now been discontinued since his PSA continued to rise. His most recent CT scan shows bone metastases in his leg, abdomen, and pelvis. Currently, he is experiencing pain in his femur.

His radiation oncologist has suggested palliative radiation as an option when pain management with oral medications is no longer sufficient.

My stepmother and my dad (as best as I can tell) want to focus on quality of life rather than longevity, especially given how poorly he tolerated ADT. His dementia has progressed significantly over the past nine months—it’s no longer just forgetfulness, but more irrational thoughts and conversations. Fortunately, he still recognizes family and remains at home.

I’ve appreciated the suggestions of one-month ADT, oral ADT, Abiraterone, and Degarelix, and I plan to ask about these at our meeting with the radiation oncologist tomorrow. However, I suspect the potential side effects may make my stepmother hesitant to pursue these options. Additionally, some of the treatments available in the US (radio pharmaceuticals, relugolix-Orgovyx ) are not available here in New Zealand.

I also plan to ask about bone-targeted therapies, such as bisphosphonates or denosumab.

One thing I don’t fully understand is the trajectory of metastatic prostate cancer when it begins progressing rapidly. This will be an important topic for discussion—what to expect as the disease advances and whether there is any palliative benefit to additional treatments. The priority now is for him to have the best QOL in the near term and treat the effects of the PCa progression.

At this stage, I’m just trying to process everything and support my dad the best I can. If anyone has been through a similar situation—especially balancing prostate cancer treatment decisions with dementia—I’d really appreciate hearing your experiences. Any insights on what to expect or how to approach these conversations would be very helpful.

[Tall_Allen]

Unfortunately, hormone therapy, which gives him the best QOL in terms of pain, is intolerable to him for other reasons. He is caught between a rock and a hard place. It's a tough decision.

[running_kiwi in reply to Tall_Allen]

Tall_Allen Thanks for your thoughts and the concise way you summarized the situation. I’d like to see him try the 1-month ADT, but that may not be where they want to go at this time. The point that hormone therapy is probably best for QOL in terms of pain helpful.

[speranza10]

I wonder if darolutamide monotherapy might help in any way.

[running_kiwi in reply to speranza10]

Thanks speranza10 . It looks like it’s not recommended for metastatic PCa… Darolutamide may be a treatment option if your prostate cancer has stopped responding to other types of hormone therapy but has not yet spread to other parts of the body.

prostatecanceruk.org/prosta...

[speranza10 in reply to running_kiwi]

It should have also been approved for metastatic patients after the excellent results of the ARANOTE study. And in any case several people managed to get it prescribed even if they were metastatic.

[running_kiwi in reply to speranza10]

speranza10 Thanks, that's helpful and will add that to the list of questions for the medical oncologist.

[Doctorsceptic]

Good morning from up over (UK) to down under.

I think the answer, given the problems you describe, is that alleviating symptoms is the right way forward. With dementia he is unlikely to be able to give consent for further anti cancer therapy - has he given any advance directives?

Not sure where you live - city vs country - but if possible you should try to get a good palliative care team involved and to liaise with the oncologists. They will help with decision making and help to tailor interventions to improve and maintain his QOL. I am a bit surprised the oncologists have not already involved palliative care. This should not be just on your shoulders.

Let me know how you get on.

[running_kiwi in reply to Doctorsceptic]

Doctorsceptic Thanks so much for your thoughtful reply. With the dementia, he doesn't understand what's going on. My step-mother is his enduring power of attorney. Both of them are not interested in prolonging his life at this stage, so it's more about QOL. Certainly the challenge that I see is that unmitigated metastatic PCa isn't going to be a very easy journey.

Yes, we've finally got a palliative care referral and a medical oncologist referral. The health system has been a bit uncoordinated here in New Zealand IMHO. Things don't seem to happen unless there is follow up.

At a consult last Friday, the RO put in those referrals and also discussed how this would progress if he wasn't on any hormone therapies.

Thanks again.

[Doctorsceptic in reply to running_kiwi]

Thank you for your reply and glad to hear things are moving in the right direction. There is every reason to think he will just get more and more tired, losing energy and will slowly fade.

All the best.

[Grandpa4]

boy this is a tough spot to be in. If I had dementia I would not want you to prolong my life but I don’t want to be miserable. I do not want to be a burden on my family. I like radiation therapy. If it is effective I would stick with that for now. If pain is not controlled by radiation I might try pluvico or a trial of one newer targeted radiotherapies. When all that fails I think you are stuck using antitestosterone therapy for pain control. Might have to put him in a memory unit at that point. Might also check clinical trials. There was an agent being tested in Europe that was very effective at treating bone lesions. BTW, just returned from New Zealand. What a beautiful country!!!

[running_kiwi in reply to Grandpa4]

Grandpa4 Thanks very much for your perspective and feedback on radiation therapy. I've not heard of pluvico, but will look into that. Many treatments are not available here. Radiotherapies are not covered by health insurance from what I can gather. Thanks for all your suggestions and I'm glad you had such a nice visit here in NZ. I agree, there is stunning scenery here!

[PELHA]

I guess if it were me I wouldn’t put him through invasive treatments for the cancer at this point. Lost my dad to dementia at 85. The last year it accelerated quite a bit. That last Father’s Day I was with him all day but he didn’t know who I was. My mom had died a few months before of heart disease. That was a tough year. So I would focus on keeping him as comfortable as possible. Sending hugs. This is very hard.

[running_kiwi in reply to PELHA]

PELHA I'm sorry for the loss of your Dad to dementia. It's a horrible disease. It means a lot me what your shared about this being hard and focusing on keeping him comfortable. Thanks for your caring comments.

[j-o-h-n]

What meds help with dementia

ChatGPT said:

There are several types of medications that can help manage symptoms of dementia, particularly Alzheimer's disease, which is the most common form of dementia. However, they don’t cure the disease but may help slow progression or alleviate symptoms. Here are the main categories of medications:

1. Cholinesterase Inhibitors

These medications work by increasing levels of acetylcholine, a neurotransmitter important for memory and learning, which is typically low in people with Alzheimer's.

Donepezil (Aricept)

Rivastigmine (Exelon)

Galantamine (Razadyne)

These are usually prescribed in the early to moderate stages of Alzheimer's to help improve symptoms or slow their progression.

2. NMDA Receptor Antagonists

These drugs work by regulating the activity of glutamate, another neurotransmitter involved in learning and memory. Glutamate can become overactive in Alzheimer's, leading to cell damage.

Memantine (Namenda) is the primary drug in this class and is often used in moderate to severe stages of Alzheimer's.

3. Combination Medications

A combination of a cholinesterase inhibitor and an NMDA receptor antagonist is also available:

Donepezil and Memantine (Namzaric) – This combines both types of drugs and can help manage symptoms in moderate to severe Alzheimer's.

4. Other Medications for Behavioral Symptoms

Sometimes, people with dementia experience agitation, aggression, anxiety, or depression. In these cases, doctors may prescribe other medications to manage these symptoms:

Antidepressants (e.g., Selective serotonin reuptake inhibitors like sertraline or citalopram) for depression or anxiety

Antipsychotics (e.g., Risperidone, Olanzapine) for aggression or severe agitation, though these are used cautiously due to potential side effects.

Mood stabilizers (e.g., Valproic acid, Carbamazepine) for agitation and mood swings.

Anti-anxiety medications (e.g., Lorazepam, Clonazepam) for anxiety.

5. Other Emerging Treatments

Research continues into other medications and treatments, including those aimed at the underlying processes of Alzheimer's, such as amyloid plaques and tau tangles. Some newer medications, like Aducanumab (Aduhelm) and Lecanemab (Leqembi), target amyloid plaques in the brain and have shown some promise in clinical trials, but their use remains a topic of debate.

It’s crucial to work closely with a healthcare provider to determine the best treatment approach, as each person’s condition and response to medications can vary.

You're a great offspring....Bless you and your dear Dad.

Good Luck, Good Health and Good Humor.

j-o-h-n

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

j-o-h-n Thanks for that. My Dad has vascular dementia, but it may be turning in to Alzheimer's. I'm not sure why, but here seems to be a great reluctance to try drug for dementia by the GP. I'm don't know much about them, but will have to do some more research as my step-mother doesn't seem to think they will be effective. He's on so many meds, it all seems to be overwhelming for her to consider another treatment at this stage.