Help to do BAT treatment for my dad. Located in Norway.

[VonKantarellen]

Hello everyone! Writing on behalf of my father who is 67 yo and has prostate cancer. We are based in Norway. Prostatectomy done in March -17. Treated with Bicalutamide and Zoladex injection until rise in PSA 18 months ago.

Increasing PSA from 6-12 on chemotherapy through last summer. September he was put on Xtandi which unfortunately gave him horrible side effects and we had to stop.

His cancer has now starting to spread to his vertebrae, pelvis, femur and 3 lymphnodes in his chest cavity. This was treated with radiation therapy 8 weeks ago. PSA 42 at the moment.

6 weeks ago he was wrongfully declared as terminally ill by his doctor, and was given only days to live. He also got refused further treatment of all kind.

I have now been trying by myself to get him on BAT for the last 5 weeks with no luck. Been in contact with 10+ doctors here in Norway with just negative response. Quite devastating actually in our situation. He is in ok shape at the moment and is much willing to try more treatment.

Im quite willing to do everything it takes for my dad to get this treatment started. Does anyone in this group have any tips about doctors abroad who is willing to hjelp or some tips who I can try to contact? I appreciate any kind of feedback you can share.

[Tall_Allen]

Giving your father testosterone outside of a clinical trial is insane, and is likely to hasten his demise. It has never increased survival (only QOL) and its only possible use is to increase time on Xtandi, which he can't take anyway.

Consider radiopharmaceuticals.

[MoonRocket in reply to Tall_Allen]

Imprudent yes, insane no.

[Tall_Allen in reply to MoonRocket]

All risk, no possible benefit=insane

[MoonRocket in reply to Tall_Allen]

I prefer measured responses rather than hyperbole. You remind of tv experts who offer up diagnosis absent of any actual knowledge of the patient. You are entitled to your opinion but you come across as if you have some superior insight.

[Tall_Allen in reply to MoonRocket]

I guess that unlike you, I know that testosterone fuels the androgen receptor. I have also reviewed all of the BAT trials. Even the most enthusiastic BAT proponents (like Denmeade) will not give it to men who've had multiple painful metastases. Perhaps you have some mysterious knowledge that you can share with us?

[VonKantarellen]

Appreciate the feedback. Only got adviced to go for BAT by others, but it might be true that he is a bad candidate for it. LU177 etc. is a much better option?

[Helene12 in reply to VonKantarellen]

Hello, try Docrates in Helsinki. They use Lutetium trestment.

All the best!

[Ramp7]

Finding a Doctor to help may be difficult. After proving I was a responder my local MO changed his mind and is know assisting and monitoring progress.

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[Helene12]

Dear Von Kantarellen! I am sorry to hear your experience in Norway. Unfortunatly, I know sbout several simulator stormes.

Please contact Docrates in Helsinki, If you have the option, They will probably give some alternatives.

Best greetings,

Astrid

[VonKantarellen in reply to Helene12]

Thank you! We definitely will have a talk with them

[Helene12 in reply to VonKantarellen]

They have Lutetium and other treatments.

Kind regards

Astrid

[cancervictim]

Has your dad tried cabazitaxel chemo? BAT is not recommended for anyone experiencing pain due to PSA flare. Lu 177 might be worth a try. Can you get a PSMA scan?

[VonKantarellen in reply to cancervictim]

They gave him 3 rounds with cabazitaxel but stopped because the PSA started to rise. It went from 6-12 during chemo. He was after that put on Xtandi. He is currently only on Zoladex inj. We have asked for a PSMA scan but they say that its no use because his whole body will light up

[Graham49]

If only 8 weeks ago the Radiotherapy is still working.

Get a new doctor.

[VonKantarellen in reply to Graham49]

Thanks for the reply. Working on it, but still havent found one willing to help. We have a meeting scheduled with a new doctor next wednesday

[MoonRocket]

What were the Xtandi SEs? You don't elaborate it's difficult to understand why you're father can't tolerate Xtandi. Is darolutamide (Nubeqa) an option in Norway?

[VonKantarellen in reply to MoonRocket]

sideeffects of Xtandi for him was delusions and hallucinations. Loss of appetite and persistent vomiting 5-10 times pr. day. Darolutamide is an option and we have asked for it, but they will not prescribe it for him.