I was diagnosed with advanced metastatic castration resistant prostate cancer early 2023. Gleason score 9, stage 4 with metastases in some bones. No surgery but I've had radiotherapy and current treatment is 160mg Enzalutamide daily and Decapeptyl jabs every 3 months. PSA has come down to 0.78 so NHS Oncologist is pleased. The sole way of monitoring my progress is now the PSA level. But I'd like to investigate other options. Lutetium treatment is not (currently) available via the NHS, but some hospitals can give it privately. I've had a quote of around £15k from the Royal Marsden. Before I take things further I'd be interested to know if any other guys in similar situation have gone down this route and what the outcome was. I appreciate it may be early days abut any info would be useful. Thanks
Hi AW
I will wade through it, Thank you also price- it’s a big one! I was wondering what you get for the money, the whole treatment?
Lx
What I forgot to say is that it can take between 4 and 6 sessions depending on how the cancer reacts to it.
Hi AH, Ive read through, epic read. So as I understand it ChrisHodEx you want it as an early treatment and you haven't had or needed Docetaxel at this point? This is sort of similar to me recently asking Mr BW's consultant about having Chemo early in a preemptive strike. - (the result was that he is going to save it to later because he felt it was too early and it would layer on unneeded damage, too soon after RT) I still like the concept of hitting things early though.
Please let us know what feedback you get on Friday from the Royal Marsden if you don't mind sharing, and is the 15k for the entire treatment?
L
I just had a chat with Mr BW about it and he said " Why don't you start digging me a bunker in the back garden while you're at it!" ... Rude.
My husband had it in a clinical trial LU PSMA 617. He had CRPC spread in bones and lymph nodes. He had it when enzalutimide failed but before he had any chemo. Docetaxel and Cabazitaxel came after the Lutetium.
For my husband it didn’t work and after four rounds he had progression on scans so they stopped it. I believe it works for some people but not for others. It’s tough, he was more poorly than after chemo but if you are strong and healthy otherwise you recover after a week.
Hello CCG, Below is a summary of my conversation with Royal Marden Hospital. The disappointing upshot is that Lu treatment does not seem to do what I've read in the press, which is that it targets and irradiates all cancer cells in my body. I thought it was a cure, it's not and I guess that's why it's not available on the NHS.
28/6/2024 15:30 phone call with Dr Suh @ Royal Marsden
She has seen my hospital records. Will send a letter + copy to my Oncologist and GP
Not eligible for Lutetium treatment as I’m responding so well to current.
Current treatment has least side effects
Lu is used only for castrate resistant prostate cancer. Have to have PSMA positive cells as checked by a PSMA scan
Lutetium is not a cure. Takes 4 – 6 rounds of treatment once every week. Remain radioactive for a few hours. It works for only a short time. Does not get rid of all cancer cells throughout my body.
Recommends repeat CT scan & bone scan when PSA reaches its lowest point (probably soon but within 6 months)
Recommends biopsies are tested for BRCA mutation (a different effective drug is available on NHS)
If PSA level rises (suggesting Enzalutamide no longer working) stop Enzalutamide but continue Decapeptyl jabs and consider Lutetium treatment. Or Radium treatment or chemotherapy are other options available on NHS
Recommends a bone density / dexascan because of increased risk of osteoporosis
Recommends increase exercise
Happy to have further discussion
Hi ChrisHodex,
Thank you so much for this informative post. Its really help to know what works and whats not and for how long.
Thank you
Lots of love
Dafna
Hi ChrisHodex,
Great feedback on appointment. I'm going to pop that in my, "save for later file'
Best wishes
L
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