Husband diagnosed with advanced prostate cancer with bone mets March 2024 PSA 900 - all within 1 year of normal PSA

Afternoon Dolly could I make a suggestion, my husband was diagnosed with type 2 diabetes when he was having the chemo caused by the steroids and the darolutamide can raise the sugar levels in the blood, it made my husband really unwell. It might be worth getting that checked out.

Sheena 

I was just wondering if steroids would help his appetite. My husband is already on Budesonide for microscopic colitis but if he wasn't, they may have given him some as part of his cancer treatment.

Gina

I feel for your partner and you as this sounds awful. You seem to have fallen through the net.

I would have thought, like Sidsmum, that steroids and anti sickness drugs aught to be the go-to regime with HT and aberiterone like I was on originally.

I’d be interested in the history from diagnosis to now because a PSA 900 would cause a knock on effect of a meeting or two to discuss the treatment plan.

You can fill in a profile so that the more experienced amongst us can deliberate and give to you better advice and support.

The best thing is that if your cancer team are relaxed so should you, but you need them to explain to you what’s going on.

Thank you that is very helpful to know

Initially mark had no real symptoms apart from what he thought was a water infection? No going to pee more or up in the night - he promptly made GP appt and his  PSA reading came back as 900 - saw urologist who had requested bone scans they showed spread from prostate to pelvis and ribs with Gleason of 9 - commenced on hormone injections plus Darolutomide twice daily and 6 sessions of chemotherapy which finished in October 2024.  His PSA dropped at its lowest to 21 which was a marked difference.  From June this year PSA was rising again and he was losing weight and fatigued although still working a full time job at 66.  His Oncologist stopped the Darolutomide as she said it wasn't working and suggested either a clinical trial or a different chemotherapy.  However clinical trials take time for referral and testing etc and only 1 in 6 chance it might work - there just did not seem to be any urgency given they had said the cancer was aggressive ?  In the meantime mark felt constantly nauseous and his head was constantly spinning - more scans and 2 lesions found in mid back region of spine which caused him constant pain but all the painkillers made sickness and fatigue worse than ever ! I just wanted to know if anybody else on here had experienced a similar setback ? If so how was it resolved ?  We are meeting with a member of Christies team tomorrow to discuss if he can begin chemo next week as planned but are there other things that can be done to keep this disease at bay ? Mark said to me today that if this is his quality of life he would rather not be here !!! This shocked me and I am reaching out for any inspiration I can find from this forum.  Wishing everybody well and thank you for replies

Two issue, both are tricky but will be overcome.

Pain: I have pain in the thoracic region (T4, 5, 6, 9, 10) and use the local hospice for pain relief reviews and advice for the GP to prescribe. The throbbing nerve pain is controlled with gabapentin and the aches from bone pain I use paracetamol, morphine (slow release) capsules and for acute pain oral morphine.

Treatments, my BRCA2 mutated dna suits Carboplatin chemo (which I’m currently on 4th three week cycle, but have Docetaxil as the next chemo if things don’t work out too well, then radium and radiotherapy on lesions. So there’s loads that can be done.

As for the sickness I have all the pills necessary for stopping the horrible feelings.

The steroids should help the appetite if you can stop the feeling of sickness.

But I switch from diarrhoea to constipation with the morphine and chemo so my appetite is not as simple as it seems. I eat what I like when I can then when I can’t I loose the chubbiness. Swings and roundabouts.

Have a positive outlook everyday and get bashed back with all the crap. But you have to start happy or else you’ll be in the doldrums all day.

Seek mental help with a counsellor to assist your mental health. I can’t tell you how necessary it is.

There is online digital ai apps that could help with counselling if it’s not palatable to go to the doctor or hospice and ask for a referral. 

Get your questions written down before you go to the meeting so you can tick off the stuff you want to know. You’ll forget otherwise.

If the PSA is low now it is why your team are slow to make their next move. Be happy that that’s the case.

You should be better informed but you just need to push the right people around you for the answers. It’s not easy but you must self advocate.

Good luck

very much appreciate all your kind advice !!!! Very helpful

Hope all went well with your meeting today xx

Thankyou !  More rounds of chemo planned starting on wednesday - more pills for nausea and upped steroids - what we are finding is that anything morphine or codeine based makes Mark vomit violently - Tried tramadol but that really messed with his head and squashed his appetite down even further !!! So we are hoping for a non morphine based alternative if possible ....he is eating very small amounts and hydrating  but having always been a tall well built bloke its distressing to see the weight just falling off him rapidly but hoping he will turn the corner with what has been a miserable 3 weeks for him to go through, it's a challenging time