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PSA still undetectable and testosterone doubles to 1.6

Brysonal profile image
29 Replies

Just an update as I yesterday was blood test day.

I’m continuing with the Apalutamide monotherapy, still enjoying working full time and just back from an Italian lake holiday.

So no movement on my PSA but interesting to see testosterone creeping up ( 11 months since my last Zoledex injection so 8 months from the first missed ADT injection).

Not noticing major impact from having a little bit of testosterone but carrying on with this pathway building up to potential chat about dropping Apalutamide..

Appreciate in December 20 I had bone mets popping up everywhere pre all my treatments so Soc is ADT for life but my treatment pathway wasn’t Soc ( early Lu-177 x 3 plus 3 Docetaxel, 20 Vmat sessions. 2 brachitherapy. 3 SBRT to more stubborn mets and the OVM 200 vaccine on trial). I of course had ADT throughout this period and subsequently did ADT and Apalutamide for a year so who knows what’s going on wit my PCa but for now scans are clear and I really did want to try without the injections .

So another testing day, another undetectable .. maybe all down to the Apalutamide of course.

Hope you guys are all well

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Brysonal profile image
Brysonal
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29 Replies
Maxone73 profile image
Maxone73

really unusual path, but I am glad it's working...but my concern is: which italian lake?

Brysonal profile image
Brysonal in reply toMaxone73

Lake Garda for a week following 2 nights in Verona

Maxone73 profile image
Maxone73 in reply toBrysonal

drop me a message next time!

Brysonal profile image
Brysonal in reply toMaxone73

Ah - is that where you live - it was beautiful!

Maxone73 profile image
Maxone73 in reply toBrysonal

I was born and lived for a long time 10 minutes from Lazise (in the middle between the lake and Verona) and now I live in a different place...that is still 20 minutes from Peschiera anyway :-P

Brysonal profile image
Brysonal in reply toMaxone73

Wow- very lucky- it is beautiful

GreenStreet profile image
GreenStreet

Thanks for the update. Glad it is going well for you. You deserve it

Justfor_ profile image
Justfor_

Testosterone is in nmol/L?

Brysonal profile image
Brysonal in reply toJustfor_

It is

Justfor_ profile image
Justfor_ in reply toBrysonal

That is good. You are a tad bellow the castration cutoff point, i.e. 46 < 50 ng/dL. Very shortly you will get better visibility. All the best to you.

Brysonal profile image
Brysonal in reply toJustfor_

Thanks for confirming, here in UK they do nmol/L.

I guess next tests may see a rise in PSA if my T continues to rise?

Justfor_ profile image
Justfor_ in reply toBrysonal

Let's hope it doesn't and in the event it does, it will plateau somewhere very low. But, my gestimate is that as long as you are taking ARPI it will not.

Brysonal profile image
Brysonal in reply toJustfor_

Fingers crossed

Nugger profile image
Nugger

Great to hear a UK guy that's giving it,all he's got 👍

Brysonal profile image
Brysonal

Thanks Nugger. I had to travel to Helsinki for the Lu-177 and then chose to do the Docetaxel and Vmat there as I knew them by then. They also did the brachys ( which my London MO was not happy about!). Monitored and meds in London with OVM 200 clinical trial out of UCLH. UK based but if it’s not available here prepared to travel!

KocoPr profile image
KocoPr

Awesome news! Can you get darolutamide? Since you are not taking ADT and your T is climbing why not let your brain enjoy some T conversion to estrogen? Apalutamide and Enza both cross the BBB but daro has near zero penetration.

As we certainly know estrogen is crucial in the brain for mental health.

ncbi.nlm.nih.gov/pmc/articl....

fast_eddie profile image
fast_eddie in reply toKocoPr

I learn something new every day on this site. Thanks.

Brysonal profile image
Brysonal in reply toKocoPr

I asked the question in my MO consult and hes fine if i want to switch. I have a relatively current stack of apalutamide to finish but will try darolutamide for next prescription. I am starting to feel more normal tbh

KocoPr profile image
KocoPr in reply toBrysonal

Excellent

NPfisherman profile image
NPfisherman

Thanks for sharing your results. Great news... Here's hoping that things continue smoothly on your journey... On OVM-200, did they look at your wbc count post vaccine or for increased T cell clonicity in response to the vaccine??

Brysonal profile image
Brysonal in reply toNPfisherman

Thank you. The OVM trial measured an immune response to OVM 200 as measured by ELISpot for T cell responses and ELISA for antibody responses.

However they won't give me any results!

Last press release last week was them winning 1st prize (UK division) for innovation and entrepreneurship! Headed to the finals in China in July!

oxfordvacmedix.com/category...

So no proper news!

Hope you are keeping well

NPfisherman profile image
NPfisherman in reply toBrysonal

Will they give it to you at some point?? I guess you will have some idea post study, based on the reported results , of what the odds were that you had a positive reaction...I am keeping well... more testing coming up, but so far, so good...

May your path remain smooth...

🐠

Brysonal profile image
Brysonal in reply toNPfisherman

I can't get any info! If they get funding for phase 2 or indeed scrop it all together i guess they may tell me. In the meantime I guess my own test results may unfortunately tell me at some point it hasn't worked for me so I will continue monitoring!

NPfisherman profile image
NPfisherman

No information is unfair.... I just don't get what giving you the Elispot results would threaten the integrity of the data...Grateful to be on the Monitoring Train as well...

Best of luck....

KocoPr profile image
KocoPr

Hi Brysonal,

Any update on your status?

Did you switch to Daro? and are you doing low doses or standard dose?

Brysonal profile image
Brysonal in reply toKocoPr

Hi KocoPr,

I haven't switched but my MO retired this month so due a chat with the new guy. No idea what he will think of my none standard story!

So still undetectable PSA and NED on scans. Taking my standard apalutamide still (and tamoxifen due to risk of boobs on monotherapy!)

Still working full time, following my football team at home and in Europe, bring a grandad to a 15 month old and tried paragliding for firsttime in Turkey last month!

Testosterone is creeping up.

Hope you are well?

B

KocoPr profile image
KocoPr

Excellent to hear!

what’s your football team?

Brysonal profile image
Brysonal

Aston Villa FC (UTV!)

Brysonal profile image
Brysonal

another testing day and another undetectable PSA. On crutches having torn my calf muscle skiing in New Year.

Otherwise all well that is 2.5 years undetectable

Still on the Apalutamide as a monotherapy

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