Hi everyone, I’ve only written here once before about my dad’s (62) battle with prostate cancer (Stage 3, Gleason 9 at dx May 2019). Sadly we’ve had yet more bad news over these past two weeks.
Last summer we learned that his cancer had spread to one isolated nodule on his lung (oligometastasis - very rare). Doctors opted not to operate on the assumption that the disease was more widespread, but not yet detectable using imaging. We got a second opinion but another specialist (NHS) said the same and my dad agreed to their treatment which was xtandi and lupron.
Xtandi and lupron worked for around a year before my dad’s PSA started gradually increasing again. That said, it was not a dramatic rise and bone scans in July were clear, and the lung nodule hadn’t grown.
Last month my dad began to suffer from extreme fatigue and weakness/instability while walking. Onc assumed that it was the xtandi, but referred my dad for brain scans just to rule brain mets out because his presentation had been unusual this far. Last week we had the devastating news that my dad’s cancer has metastasised to his brain - he has 8 lesions and we’ll be meeting with his oncologist in two days to discuss treatment options.
Obviously we know that this isn’t good and he likely doesn’t have long left. It seems completely unthinkable that his disease has progressed in this way as he’d been completely asymptomatic for such a long period of time. From what his oncologist has mentioned so far, the plan seems like radiation, drugs of some sort, and possibly surgery to extend his life.
My dad is still ambulatory, in good spirits (all considered) and not ready to throw in the towel just yet. We’re realistic about the road ahead and we’ll learn more about the treatment plan later on this week. Nonetheless we would appreciate any advice or kind words. We have a supportive family, but it’s mostly just me and my brother (both in our 20s) looking after our dad right now, as we lost our mum to leukaemia when we were kids. The world can be so cruel sometimes.
Thanks so much,
Sian
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Bradshawsl
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My heart goes out to you. It is indeed unusual to have brain metastases - usually it invades the skull/cranium but not the soft tissue of the brain. They can zap the metastases to shrink them.
Sian - are you based in Wales or England? If you are in Wales I would seek a second opinion in London if you can afford it. We were told by a consultant that the care in Wales is just not as good as England. Also, you could ask if the PROMERIT trial would be of any help - this is in England and Wales.
The options are limited with brain metastases because of the Blood Brain Barrier (BBB) and the inability of many drugs to pass through it. In general, radiation are surgery are the two main options.
We do have a chemotherapy drug available that crosses the BBB called Cabazitaxel. There has been some success with it along with the other two main options of radiation and surgery.
"Among the new approved drugs for mCRPC, such as cabazitaxel, abiraterone, enzalutamide and sipuleucel-T, only cabazitaxel has been shown to be able to pass the BBB."
I'm on this chemotherapy now and it's very tolerable. I'd say it's on the easy end of the spectrum for chemotherapies. Probably would be used in combination with radiation. See what the doctor says.
I always believed that Enzalutamide is passing the blood brain barrier. That is why you have lots of side effects like falls as Enza is passing the blood brain barrier. Can you explain better? Maybe i missed something.
Yes Enzalutamide (Xtandi) does cross the Blood Brain Barrier. The article I quoted is not correct for that drug, but I didn't want to edit the article. I think this accounts for the side effects related to fatigue with Xtandi that can be extreme in some cases.
I mentioned the risk of seizures with my doctor and he said a lot of the patients that had problems in the trials also had a history of that beforehand. That's what he told me, but I haven't checked that out.
In any case, brain metasases are in general a late-stage development in prostate cancer, usually occurring when the cancer has become hormone refractory so it's unlikely to respond to Enza anyway.
The best treatment is likely to be radiation, and Cabazitaxel may also be used as an adjuvant treatment.
Sian, my heart breaks for you, dad & bro. Glad our smart men in here know what to tell you. I'll be sending positive vibes across the ocean and holding your virtual hand when you need it. You sound like a terrific, smart 20+. Tell your dad he raised a pretty awesome daughter! Take care of yourself, too. Hugs, Kate
So sorry you're going thru this. I hope my response gives you hope. I was diagnosed with PC brain mets in April, 2021. It was a tumor requiring a craniotomy. The tumor was removed but the surgeon said these can come back because of the nature of metastatic disease. 8 months later 3 tumors appeared. As TA said, they zapped them with SAS, and I get an MRI of the brain every 2 months. I'm also on lupron and Erleada, which my MO says penetrates the brain. Here in the US, the drug companies charge a fortune for new meds like Erleada. However I was fortunate to also be a VA patient and got the meds thru them.
On a personal note, once I got over the shock of facing my demise, I decided to just take one day at a time. I'm 75 years old and have had a good life. Your dad can continue his life. I've limited activities somewhat but continue to play tennis twice a week and golf once a week. These activities wear me out but they also confirm my commitment to live in the moment. I now take 2 naps a day, and that's ok. The last MRI showed the 3 tumors shrinking. I'm happy for that but realize it could change. I have little control over that.
For nausea, consider taking .5 mg benzo morning and night. It helps. Also it helps attitude. Docs say it's addictive yet at this stage who cares. I also use cannibis in the evening since the Erleada causes joint and muscle aches that can disrupt sleep. The weed seems to offset this. I also continue to work out 3x week, walk with my wife and appreciate life. Your dad is fortunate to have such a caring daughter. Pat yourself on the back and realize he may be around for years.
Hi there, thanks so much for sharing your story - things feel very dark at the moment but hopefully we will soon be able to take things day by day just as you are doing. Wishing you all the very best with your treatment - which sounds like it’s doing the trick - and many more happy years with your wife.
I feel it. Years ago I had scans that showed spots on my skull just like in the pictures on the net. But by the time I rescanned I eliminated them with hot showers. So now I just don't bother to scan. I just feel pain either by pressing on them or from headaches, and then shower them and they go away immediately. I think they are in lymph nodes. This image is not mine, but mine was very similar. They showed on a full body scan with fusion? and the MO saw the spots, asked for bone metastasis scan x-ray of skull a month later and they were gone.
Statistically, many with advanced prostate cancer will die from something else.
When we do go from prostate cancer, it is one of the most painful deaths imaginable.
It goes to the bone, disintegrating the bones leaving raw nerves to be under constant irritation... to the point that you can't think or focus on anything but the pain.
Because it's somewhat rare you don't hear about it much, not even on this forum.
But that's what it looks like if the cause of death is prostate cancer.
And the rarity of this type of death is the reason why some insurance companies (to this day I think) refuse to pay for PSA testing prior to age 50 or 60.
I recollect death by heart attack is more common for men who have prostate cancer.
So sorry to hear about your father. Judging from the experienced warriors in these responses your father still has a chance to extend his life with some quality.
I have no advice for you but certainly kind words. I am sorry that your family is in this situation, and I will keep your father and you and your brother in my prayers.
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