Hi everyone. This would be my first post here, I am feeling stumped and lost and I'm not sure what to do. For context, dad has the BRCA positive mutation gene.
My dad (56) is experiencing a lot of bone pain for the past 4 weeks. He has been through Leuprolide acetate, Lu-177, Olaparib (Lynparza), Abiraterone (Zytiga), 5 rounds of Docetaxel, and brain radiotherapy due to meningeal metastases, as well as a ureteral stent placement procedure done due to a recurrent cancer mass where the prostatectomy surgery site was done.
His latest PSA levels in June was at 16 and latest PSMA PET Scan was on Dec 2023, the mets are mainly in the spine, femur, ribs, and hips.
He is now receiving Enzalutamide / Xtandi (just started 12 days ago) and I am not sure if it's the bone mets or the meds, but it has been so hard on him. He has lost 12+ kg in the last month, he sleeps his day away, and can't even walk in a straight line. I am so sad because he used to be so full of life, exploring the city with his bike, and now he is having a hard time even getting up from bed.
MO has led us to palliative care, but I feel like it's too soon and I am not trying hard enough to find another treatment that would work for him. For now, his urologist advised us to wait for a month (August) and check the PSA levels to see if the Xtandi is working any good.
I am not sure what to do anymore, he is in so much pain and is taking Ultracet (Tramadol + Paracetamol) 3 times daily and Celecoxib for anti-inflammatory effects. We had to go to the ER today as his 5mg Morphine tablet did not ease the pain at all and the ER doctors gave him bolus of Parecoxib which only lasted 6 hour.
Would it be possible if we get more radiotherapy treatments to ease his bone pain? Does anyone have any experience with receiving chemo again, is that even an option?
Hope you and your loved ones are doing well, any thoughts will be appreciated. Thank you so much everyone
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ScoobySwift
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it totally slipped my mind, but dad did receive Olaparib (Lynparza) back in 2023 but then he stopped, and again, it was due to efficacy issues. thank you so much for commenting though - i really appreciate it.
Would it be possible for us to get more radiotherapy treatments to ease his bone pain?
Yes, the doctor can do more radiation to the spot that has more pain or shows up on a PSMA PET SCAN.
- he has more mets in. spine, femur, ribs, and hips. Ask a doctor for xofigo-us.com/ - It is target therapy for bones when they start to pain
- Check access to 225 PSMA Actinium; that's also a strong target therapy.
Do you have access to immunotherapy called " dendritic cell treatment immunotherapy "? The doctor takes a biopsy from Mets builds the anti body and infuses it into his body.
Does anyone have any experience with receiving chemo again? Is that even an option?
- Yes do you know which kind of chemo he had first time ? May be docetaxel if yes than he can also go for cabazitaxel
Do you have access to clinical trials ? If yes than ask for ADC treatment or AMG 509
Thank you so much for being so informative. Will definitely look into them
And yes, the chemo that he had was Docetaxel, he actually was doing great during chemo but had to put it off to receive brain radiotherapy for his meningeal mets.
There is another term debulking surgery where doctor remove METS and reduce the risk. For example one user in this group went through debulking surgery and remove all the mets from brain and reduce the risk
So sorry about what your dad and family are experiencing. I don't think the suggestion of palliative care is "too soon." It doesn't mean there's no more hope because palliative care is for any patient with a chronic illness. It can help a lot as one of its goals is pain management and it can be done in your dad's home. It saves you trips to doctors/hospitals/ERs/etc. You can expect one of the team to visit to explain the program, what it offers and how it can help all involved, including the caregiver. You get visits from professionals to keep tabs on your dad's condition, order equipment like a walker, help bathe/shave/trim hair/etc. in the comfort of the home and if you don't need some of those services, they're available if and when you do. They can provide PT, counseling, help with diet and things you might not expect. I encourage you to try it because it can last as long as needed and they'll also help transition to hospice if and when the time comes. Staff are nurse practitioners who can prescribe meds and all are under the supervision of highly trained/qualified supervisors and doctors. Another thing that was important to us is that opiates are in short supply everywhere and sometimes we had a hard time getting a prescription filled. When you're getting palliative/hospice care, however, you go to the head of the line and patients on those Medicare programs get the drugs they need from suppliers who always have available for delivery.
Just want to echo this comment on the need for palliative care. Our MO's specilize on treating the cancer, we need people on the team who are specialists in addressing the need for comfort in the process. Praying for you and your dad.
Hi. Sorry to hear of your dads bone pain. I know its a terrible pain. I was given 10mg morphine 2 x/ day for my pain in upper leg bones and upper arm bones and it didn't touch it. Needed zopiclone 7.5mg to sleep at night. Recently changed to 10 mg SR Oxycodone 2 x/day. Pain gone and don't need sleeping tablets at night now. Maybe he could try the same switch if his Dr approves. It turned my life around. Hope this helps.
If you read what Tall Allen posted, I think the time has come to make him as comfortable as possible and let him go. It is very sad but family members often need permission to pass on from those who will miss them most.
Making his passing easier helps you both. You can be there for him and advocate for treatment that will ease his pain, read to him, recite stories of your time together, let him know that you love him and that it's okay for him to go.
I wish you well during this very painful time. May his passing be peaceful and your pain become compassion. Good luck.
Some people have a very hard time with Xtandi. If he is still taking it, ask the doctor about cutting the dose in half as others have done. You should do a search for "Xtandi" on this site.
Dear fellow daughter of a dad with PC. My father was supposed to have Radium 223 for bone mets to keep him going starting April. However to a total error in his own judgement he broke his leg in March and as a result of that his Xofigo treatment got put off. Sadly, bed bound by his leg his health just tanked off a cliff, and he's now to ill to have Xofigo and his PSA has soared to 630 from about 10 in 4 months. My dad was always so used to going out and about as he's a farmer. I'm a firm believer in healthy mind, healthy body, although cancer patients will never have a healthy body due to the toll of the treatments, disease, etc I do think however it is important when cancer sufferers do get stuck within there own four walls it becomes increasingly important to try to keep their mind outward looking and interested in what's going on around them, so they aren't just focused on their illness ALL the time. Otherwise I feel strongly that you get sucked into a downward death spiral, where, due to the mind focusing solely on the pain, the terminal diagnosis, the fatigue, the NOT being able to do what they used to do, the burden they might feel they are putting on others, they eat less and less, do less and less and the pain and the fatigue, death spiral just gets worse. I've had to battle to get my dad/his UK GP to prescribe anti-depressants/anxiety meds to hopefully improve my dad's mental health. They were prescribed this week after a two-month battle. So we'll see if it helps him get his interest in "life" back. I myself once had a life threatening illness when I was diagnosed with a massive brain tumor, was on my own, with my daughter 11-year old daughter. I just felt like I was letting everyone down, and couldn't even be a proper mum. Were it not for my doctor suggesting talk therapy, adn recommending I try what I prefer to call "mood stabilisers" I might not be writing this note to you eight years on.
I'll let everyone know how my dad does, but it's worth considering for your dad. If he's not eating properly, (my dad isn't) that will make all your dad's cancer symptons so much harder to manage - Mirtazapine is one of a few "mood meds" that often stimulate appetite. 🙏
You asked for our thoughts so let me put down mine here. I am not a doctor so take this with a grain of salt if you wish. We with advanced cancer tend to fall into a downward spiral, which leads us to a negative thought process, down a slippery slope. There are things we need to do to fight this thing, beyond what doctors prescribe or treatment. Things that we can do daily, on our own, to kick this thing in the pants. For example, diet. There are foods that have been shown to not only reduce progression of the disease, but to actually kill prostate cancer cells. We need to learn about these foods and take them into our bodies daily, as if they were medicine. It takes time to tudy the subject, but I can give you a few hints. First, lycopene, an antioxidant, can slow the growth of prostate cancer and thereby kill the pain, and even reduce tumor size. Black pepper, turmeric, paprika, garlic, and cardamom are spices that I use daily. By including these things in our diet, we can reduce the pain from the cancer growth. Secondly, there is heat. 106 degrees F is all that is needed to kill cancer cells...any kind. This is a poorly known fact that hardly anyone knows, but this can revolutionize home cancer therapy, if only people know about it and use it. Thirdly is magnetism, but it is hardly known about and used. However, by sleeping on a magnet mattress, we can reduce our cancer while we sleep. So, take 'em or leave 'em. Those are my thoughts. Check my bio.
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