after radium 223

[Jojoberries]

hi, husband diagnosed 2017, lots of different treatments, none lasted very long. Including 2 different chemos, xtandi, casodex, etc radium 223 last year. We are in the UK, have now been told we have exhausted treatments under NICE guidelines and he’ll be offered pain relief under palliative care. He has pain though manages this with over the counter meds so far. He is still in full time work. Age is 55. We are at a loss of what to do/request next? He doesn’t feel he should be under palliative care at this point? Any advice/recommendations? Thanks in advance. Jo

[Tall_Allen]

Have you looked into clinical trials at the Royal Marsden?

[Jojoberries in reply to Tall_Allen]

Thank you. Will take a look

[dorke]

When I was diagnosed, the MO suggested to do genetic test due to the relatively young age when diagnosed.Test found BRCA2 mutation.

Did your husband do any kind of genetic tests?

If any mutation found ,it could add some treatment options

[Jojoberries in reply to dorke]

Yes, no genetic mutations which we were thankful for in terms of future repercussions for our children even though it meant he couldn’t access certain treatments 😔

[MyDad76]

Is Pluvicto available in UK?

[NickJoy]

This trial might be of interest to you or Lu177/AC225 in India with Dr Sen if your husband is PSMA avid?classic.clinicaltrials.gov/...

[Finlay66]

Interesting. I wonder how you would go about getting recruited to an essentially US led trial?

[NickJoy in reply to Finlay66]

Contact this email: [e-mail]

It is being run in Manchester and two London hospitals.

[NickJoy in reply to NickJoy]

Or this number:844-434-4210

[NickJoy in reply to NickJoy]

I think you just need a reference from GP and/or oncologist.

[Finlay66 in reply to NickJoy]

Thanks. Will check out

[NickJoy in reply to Finlay66]

Very best of luck.

[Finlay66]

Hi

I'm also in the UK and in a very similar position having been through Enzalutamide (lasted just 7 months), Docetaxel and now 4 doses of Radium. The latter was tough in the early stages but I'm recovering. I opted for Radium before further chemo.

LU177 seems to be the next stage which you can do 6 months after Radium. I'll probably opt for further chemo to try to keep things stable but my PSA is rising fast. LU177 hasn't been approved by NICE for use through the NHS, which my specialist Nuclear Medicine doctor thinks is appalling.

I also have enquired about Darolutamide. My Oncologist says it's the same as Enzalutamide so if you fail Enz- Darolutamide won't work. I've been rejected for further trials at the Royal Marsden as not meeting the eligibility criteria.

I also feel that I'm far from ready to accept palliative only. I'd welcome further views from others on this forum.

[Rogersw]

I am also just about in the same position as yourself with the exception that I am much older(76 diagnosed 2014) I must say PC has been particularly mean in affecting you so young. I am now having my 5th infusion of Radium 223 which in my case has been tolerated well and been very effective on pain relief. I too am concerned where we go from here. I’ve not had any chemo to date. I will probably put you on my follow list if that is Okay. I too am in the UK hoping Lu177 will be come available on NHS.

[j-o-h-n]

Young guy....... I wish him well............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/05/2023 2:43 PM DST