upfront PSMA trial: Given my mission to... - Advanced Prostate...

Advanced Prostate Cancer

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upfront PSMA trial

Brysonal profile image
18 Replies

Given my mission to get upfront Lu-177 in 2021 (3 infusions) followed by 3 Docetaxel I was pleased to listen to this lecture:

urotoday.com/video-lectures...

My blood test today came back PSA undetectable still. Very pleased I challenged the 2021 status quo.

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Brysonal profile image
Brysonal
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18 Replies
FRTHBST profile image
FRTHBST

Curious, where did you go for the 3 infusions of LU-177 in 2021, Europe, Australia or India? Then, were your Docetaxel treatments here in the states? Congratulations on being undetectable three years out!

Brysonal profile image
Brysonal in reply toFRTHBST

Finland where I finally found an oncologist who did discuss a beyond standard of care plan that started with Lu-177

Brysonal profile image
Brysonal in reply toBrysonal

Sorry missed second part . I could have had my Docetaxel here in Uk but opted to do with Finland team too.

I got my ADT injections after month 1 and Apalutamide in UK plus monitoring.

Chubby42 profile image
Chubby42

Hi Brysonal

How much was the LU-177 If you don't mind me asking.

I live in the UK but am from Australia, thinking of having my treatment either in EU or Australia depending on costs.

When the Xtandi stops working just about to start it.

Cheers

Brysonal profile image
Brysonal in reply toChubby42

I spent £45,000 on the 3 x Lu177 infusions. Germany was cheaper but I couldn’t get to consult, it felt like I was buying groceries so I decided I would rather pay more for the wrap round service I got in Finland.

Good Luck

Chubby42 profile image
Chubby42 in reply toBrysonal

OK thanks, still cheaper than the UK by about £15k. I think Australia is cheaper again so will probably go back there for it.

Hope it works well for you.

Cheers

Tinkudi profile image
Tinkudi

you did the Lou after hormone treatment stopped working ?

Brysonal profile image
Brysonal in reply toTinkudi

No I did it as a first line treatment. Had my first injection and my Lu-177 in the same month.

Very none standard at the time but that trial shows it’s effective up front

gsun profile image
gsun

So you really don’t know what worked. You got Lu then chemo right after and started ADT at the same time.

Brysonal profile image
Brysonal

no idea if anything worked better than if I just had SOC but based on SOC stats I wanted to try a ‘throw the kitchen sink approach’

But with a planned order which was to kick start with Lu-177

ulfhbg profile image
ulfhbg in reply toBrysonal

Hi !

I had a failed HDR Brachytherapy in Sweden and i was rediagnosed to a T3BN1 (no mets (M0)) after PSMA Pet Scan so I also decided to try my luck in Finland as well

So for me it was 3 cycles of Lutetium. After start of cycle 1 I started Firmagon (which I later have changed to Orgovyx) and when I was finished it was time for 20 fractions of Hypofractionated VMAT RapidArc IMRT with WPRT. Because I had had Brachytherapy (which failed) this was not an option for me again but after IMRT we added adjuvant Abiraterone.

So I’m also one of those that have had Lutetium early on, at the start of my salvage treatment, after the failed HDR Brachytherapy . Anyway time will tell

But have been reading your profile Brysonal and I’m really amazed the respons you have had and has and hopefully you finally can close the chapter on prostate cancer.

There are actually lots of interesting studies and trials starting with the adding of Lutetium early on in the treatment together with other radiation modalities; before HDR Brachytherapy, before EBRT and also SBRT. So very interesting.

Best wishes - Ulf

Brysonal profile image
Brysonal in reply toulfhbg

Hi Ulf

Great to hear your story. My journey started when a failed HIFU went metastatic with distant mets throughout my skeleton and PSA rising rapidly I had to hold my nerve to be happy with my plan as my research had convinced me upfront Lu-177 was what I wanted in addition to SOC. The first overseas onc conversation was a very good open one with the Netherlands lead of the ‘Bullseye ‘ trial and also the lead of the UK PSMAddition trial. It’s was a pandemic of course so bullseye were not taking overseas candidates and it became clear PSMAddition would not start up in the UK quickly enough for me. Probably good to have avoided the trials as the Finland plan was completely personalised with no restrictions. The onco’s words still ring clear. Currently stage 4 is not proven as curable but I’m putting you on a curable pathway anyway! It has made me calm to think I did everything available ( including volunteering for the OVM 200 vaccine at stage 1 trial.

Very interesting to hear you went for early Lu-177 at stage 3! Go Finland is my view. Thanks for the post.

ulfhbg profile image
ulfhbg in reply toBrysonal

Hi !

I think we will see more treatments where they use Lutetium much earlier on in combination modalities. I think with this really radiation directed therapy I think it’s actually rather safe because of the short range of radiation.

I actually had both ChatGPT and Copilot try to calculate a theoretical dosage directly in the tumor lessions and it’s not small amounts of theoretical dosages directly to the tumor / lessions but thankfully it klings of fast. So, in our cases with 3 cycles of Lutetium it’s significant ’boost’ you add.

But I agree with you; go Finland and when looking at your results so far, it might well be that your metastatic prostate cancer might well be gone for good. It’s actually fascinating to see that your treatment you had in 2021 is today tested or is under test today. I’ve seen trials where they swap out one fraction of HDR Brachy with one cycle of Lutetium, one trial where they add two cycles of Lutetium to SBRT for oligorecurrence and at least two trials where they add 1-2 cycles of Lutetium to EBRT and long term ADT for high risk.

So you’re a pioneer but then I know that Docrates was really early in the use of Lutetium so they have long experience and good for use. Was the ONCO Dr. Timo by the way?

Best wishes - Ulf

Brysonal profile image
Brysonal in reply toulfhbg

Yes indeed Dr Timo!

ulfhbg profile image
ulfhbg in reply toBrysonal

Hi !

Not a lot of talking from that man but he seems to know what he is doing 😀

MateoBeach profile image
MateoBeach

Great for you! I am also undetectable PSA 3 years after my Lu-J591 in Perth after SBRT to 2 nodes. Still maintained on my long cycle BAT program. 👍🏼

And recovering progressively from the Group B strep infection that “ate” my leg muscles last April. 👨‍🦽‍➡️🚶‍♂️‍➡️🏃‍♂️‍➡️ Paul MB

Brysonal profile image
Brysonal in reply toMateoBeach

Hi Paul,

So sorry to hear of your strep infection. Pleased you are recovering and are still undetectable.

Australia still seem to be leading the world in developments in this area!

I don’t think I would have any chance of getting BAT in the UK so following escalation trials and watching my testosterone rise gradually whilst maintaining my Apalutamide tablets.

We both have had in common the desire to maintain QOL whilst dealing with this disease.

MateoBeach profile image
MateoBeach

if you can’t get a doctor to oversee a BAT personal trial, it is possible to manage yourself. All you need is testosterone injectable and the ability to get tests to monitor response and see if it is beneficial for you or not. If not it can and should be discontinued. Using testosterone propionate is more convenient as it clears out of the body in just a few days. It is called pBAT, available from some reliable internet sellers. Full explanation is in Russ Hollyer’s excellent book available on Amazon for Kindle. Adaptive Bipolar Androgen Therapy for Prostate Cancer. Support also available on Cancer Patient Lab from others.

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