Thoughts on next steps

[Brysonal]

Hi all

I’d appreciate thoughts/ input

At 13 months of undetectable PSA from a multiple bone mets situation via 7 months of multi treatments I asked for a PSMA PET scan prior to considering an ADT holiday ( moving to Apalutamide as a monotherapy)

I see my London onco on Monday but report in today has left me with a wobble due to PSMA activity in apex of prostate:

XAMINATION:

Ga-68 PSMA PET CT scan. Unless specifically stated, all our PET/CT studies

are performed with CT used for attenuation purposes only. Final Read

CLINICAL INDICATIONS:

Metastatic prostate cancer, now in PSA remission on ADT and apalutamide, for

trial of intermittent hormone therapy, assessment

REPORT:

The current PET scan was compared with the previous study from 1 October 2021,

note is made of bone scan from 19 October 2021 showing osteoblastic activity

in T5

There is no new Ga-68 PSMA avid lesion seen.

There is no suspicious Ga-68 PSMA avid skeletal deposit. The previous Ga-68

PSMA avid skeletal sites have resolved.

There is focal Ga-68 PSMA activity in prostate close to the apex posteriorly

(best appreciated on delayed pelvic views). No abnormal activity in the

seminal vesicles on either side.

There are no avid pelvic or retroperitoneal nodes.

No abnormal activity in soft tissue organs of the abdomen.

There are no avid pulmonary nodules, hilar or mediastinal nodes, pleural or

pericardial effusion on the free breathing CT.

Elsewhere there is physiological distribution of tracer.

CONCLUSION:

Persistent focal Ga-68 PSMA activity in prostate. No evidence of Ga-68 PSMA

avid extra prostatic disease. Previous activity in bone metastases has

resolved.

Thoughts would be appreciated.

[Benkaymel]

Is radiotherapy an option?

[Brysonal in reply to Benkaymel]

Had my limit in external I think with 20 x VMATs and 2 x Brachytherapy

could have more Lu -177 ( maybe)

My London RO when my first PSMA PET scan flashed my first bone mets and my prostate said the prostate could be urine and only treated the bone mets with SBRT. My prostate biopsy had come back negative to support that at the time. I now know my double HIFU made it really difficult to biopsy my prostate and FInland tried but aborted the process.

I have started a dialogue with MBs Dr Nat in Australia re J581 and have sent this report to Finland for opinion plus will see what my London MO thinks but feel it may kibosh my hope for a holiday!

Will report what he says

[Seasid in reply to Brysonal]

What was your SUVMax in your prostate?

My RO said that PSMA avidity in the prostate doesn't mean that it is cancer. They had a small clinical trial and they removed a prostate of such a people but they didn't find a cancer.

[Seasid in reply to Seasid]

I am doing a prostate MRI and they will calculate the PIRADS score and we will see how the PSMA lesion will correlate with the MRI. I asked him to biopsy my prostate but he refused on the ground that it is not necessary and it could be dangerous.

[Seasid in reply to Seasid]

Maybe we should just calm down?

[Seasid in reply to Seasid]

Or maybe we could do real time PSMA pet scans?

[cujoe]

Brysonal - Thanks for the update. You are a true treatment pioneer, so we all benefit from you keeping us updated. As for any input I can offer, I'd say getting the distant mets resolved (or at least put into deep-sleep mode) has been a success. That you still have evidence of PCa in your prostate is evidence that Nalakrats' old PCa Mothership is still in play.

Your treatment history is way out of my league, but others (mateobeach in particular) might be able to shed some better light on the scan results and what might be next steps for you to consider. Most importantly, don't let the wobble turn into a spiral. I can well imagine your disappointment in now having to consider that the "lutimide"-only vacation might need to be delayed, but let's see what others here can contribute and what your doc says on Monday.

In the meantime, Get that wobble stabilized and Stay Safe & Well,

Ciao - Kaptin cujoe

[Brysonal in reply to cujoe]

Thanks Cujoe. Appreciate the prompt response and support as always!

Still in a much better place than Dec 2021!

[NPfisherman]

Brysonal,

Congratulations on your continued status of PSA undetectable.

I think talking with Dr Nat is a solid plan. Using SBRT to the prostate with a J581 tx for follow up may be a thought.

Timing is important with the abscopal effect lasting varied time lengths.. It is something an experienced RO will be able to calculate in developing a plan...

Best of luck...

DD

[Brysonal in reply to NPfisherman]

Thank you. Overnight I have mulled on whether to push for a biopsy of that Apex area as next step . They struggled in Finland but now I’ve had radiotherapy it might be achievable.

Also as it’s focal, really rogue approach might be a focal HIFU so back to consult my HIFU professor ( where this all began) My London MDT are based out of the top focal centre in the UK. But treating a stage 4 patient focally is 100% not UK standard of care!

Then PSMA is meant to be a ‘seek and destroy’ so we’ve done the ‘seek’ but adding a Lu-177 ‘destroy’ infusion is no where near standard of care .. but Finland might do it!

One step at a time! May as well continue suggesting the non standard and see the responses!

[NickJoy]

Is this worth considering?

vitusprivatklinik.com/en/Ka...

[Brysonal in reply to NickJoy]

Thanks Nicola, I am feeling reassured after the consult ( though flu like after bone injection)

I think I am going with h the MO plan and not have my ADT injection in September but move to Apalutamide as a monotherapy and watch what )if anything ) happens to my testosterone and if it does rise watch my PSA.

Maybe three monthly testing will feel less intense ! I could always get an NHS test locally inbetween I guess.

Hope you guys are doing well. Obvs if Timo has another view I may well pivot!

[cujoe]

Hey, Brysonal,

Not sure if this paper by Denmeade et al will shed any light on your seeming "persistent focal Ga-68 PSMA activity" in your prostate. Patrick posted a later-dated Denmeade paper several months back on BAT, but these sentences in the one linked below caught my eye and I immediately thought it might help explain your "persistent" condition:

* * *

Results of studies using rats further indicated that the adult prostate has a profound regenerative capacity following repeated cycles of androgen withdrawal and replacement.

. . .

The adult prostate is mainly quiescent, but these self-sustaining epithelial cellular compartments might have a role during tissue homeostasis, injury and disease.

(Emphasis added)

* * *

The testosterone paradox of advanced prostate cancer: mechanistic insights and clinical implications, nature, nature reviews urology, review article, Published: 21 December 2022.

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

It doesn't shed any light on the effects of RT, but it does advance the underlying principles that Denmeade's group have discovered in their BAT treatment trials. You might find some logic to your current situation illuminated therein.

BTW, is today the day of the consult with your London MO? Maybe some helpful insights from that? (No extended "wobbling" allowed, Brother!)

Stay S&W, Ciao - K9

PS For the wider BAT audience, I'll do a post on the paper later this week.

[Brysonal in reply to cujoe]

Hi there

Thanks for this, really appreciate

So yes today I was at the London Oncology Clinic and my MO said

‘ I think your PSMA Pet result was good and in likelihood the scan result on your prostate is likely to be artefactual or treatment damage. Bloods are all fine and your PSA is undetectable. Let’s start your zelondrolic acid, which will be every three months. Come Off Zolodex, and stay on Apalutimide as discussed. I recommend you don’t think about stopping Apalutamide until at least November 2024. We will do 3 monthly blood tests to coincide with appointments from now’

A lot to take in. I’ve had monthly PSA tests for a long time! Two weekly at the start of 2022.

Not sure how I feel tbh. Exhausted tonight. ( could be the bone infusion, was up early this am, big work day tomorrow)

Just sending report to Finland for 2nd opinion, 3 weeks to when I’d be due my next injection.

I’ll read your post thoroughly. This guy is top MO at University College Hospital London. I was prepared for a negative consult to be honest!

Thanks so much

[cujoe in reply to Brysonal]

Well, I can imagine you are bummed about not getting the vacation. But with your thoroughness, I'm sure you will make a good decision about next steps. I've usually done 3 MO appts with labs for most of the time since my RALP in 2013. When doing 3-mo depot injections, that really makes sense and monthly labs will mostly just add stress to your life, IMO.

As for the London MO saying that "scan result on your prostate is likely to be artefactual or treatment damage", FWIW, I had what might be a similar situation with a questionable uptake area in my rectum. We did follow-up MRI and the reading was as follows:

IMPRESSION:

-Sequelae of prostatectomy for prostate cancer without discrete lesion within the rectum 2 correspond with abnormality on a recent PET/CT examination.

I had a second reading at another cancer center of both the PSMA-PET and the MRI with no disparities between them. I've since purged the issue from my current list of medical concerns.

As I'm sure you know, PSMA scans are imperfect and "false positive" uptakes can be found in areas with no PCa, most notably seen in the significant uptake in the saliva/parotid glands. There is even a PSMA PET tumor-to-salivary glands ratio (qPSG Score) that can be used to predict response to PSMA-directed therapy using the scan results.

PSMA PET tumor-to-salivary glands ratio (PSG score) to predict response to Lu-177 PSMA radioligand therapy: An international multicenter retrospective study, Journal of Clinical Oncology, ASCO, Meeting Abstract | 2022 ASCO Annual Meeting

ascopubs.org/doi/10.1200/JC...

So, with the degree of RT you've had to your prostate, your doc may well be right that the persistent "focal activity" in your prostate is an artefact of the RT - and NOT PCa. A pinpoint biopsy of the focus would eliminate any questions about that, but it sounds like getting a biopsy done may be quite difficult.

Seems you have a top guy in London, so Good Luck now with the Finns. At least if you go there for a biopsy or treatment, you should be able to allocate some time in one of their 3 million saunas.

finland.fi/life-society/bar...

Try to get yourself some rest - and Stay S&W,

Ciao - Kaptin cujoe

[Seasid in reply to Brysonal]

TA said something against the zoledronic acid if you plan Lutetium treatment. He prefers denosumab being a protein and could not interfere with Lutetium while Zoledronic acid could. Therefore I will ask for denosumab for myself. During hormone sensitive phase the bone Mets are healing and denosumab and zoledronic acid could stop that process. Therefore no denosumab or Zoledronic acid for me for that reason.

Why did you start Zoledronic acid? Are you already osteoporotic? If you fracture your bone while on Zoledronic acid the fracture will not heal efficiently. Most important is that we avoid falling.

[Brysonal in reply to Seasid]

Hi there. Saw my MO yesterday and he agreed no more zoledronic acid. I was given it as advised I’d waited long enough and at risk of bone issues. He’s sending me for a scan as my shoulders/ neck have ached since I had it so wish I hadn’t bothered.

He says after scan we can discuss denisumab. As my scans are showing healed mets I think he wants be on something

PSA yesterday was undetectable for the 16th month.

No ADT and getting some chest hair back! Still taking Apalutamide though.

Think the PSMA flash in the prostate was indeed a red herring and my MO is happy with where I am at.

Still working, holidaying, enjoying being a grandad now for 4 months and even my footie team are doing well ( Up the Villa )

[Seasid in reply to Brysonal]

That is great that your Mets are healed!

[Seasid in reply to Brysonal]

You could always switch back from denosumab to zoledronic acid if you can tolerate zoledronic acid. (Lot of people can't tolerate zoledronic acid.)

You are in UK and could always phone the bone health hotline where specialist bone health nurses could talk to you and advise you if you want to know more or make a decision.

I am also a member of bone health group here on HU. I learnt a lot there and made a decision not to interfere with my immune system with denosumab or Zoledronic acid until it is absolutely necessary. I feel well without side effects from the zoledronic acid or denosumab. I couldn't get my bone density scan from the same operator like a year ago therefore I cancelled it. I don't want to confuse myself with none reliable results. I am probably partially osteoporotic but hope that I will not fall and fracture my hip. I have definitely more time than you. Everything has a silver lining.

István Hoffmann

[Seasid in reply to Seasid]

One more thing what I learnt is that if you want to stop denosumab you should switch to zoledronic acid as stoping denosumab could weaken your bones and could result in fracture. Just letting you Avare of this.

Therefore after stopping denosumab you should switch to zoledronic acid and than you could stop the bone treatment without risking a fracture.

Lots of people on bone health group feel that they were bullied into prolia or zoledronic acid without understanding what they are doing. One old lady concluded that she will rather live her life without a side effects of zoledronic acid and than it is better to her if she just make changes in her home and avoid risk taking behaviour.

Only 8% of people with osteoporosis are on bone strengthening medication mainly to avoid side effects and not to ruin quality of life.

[Maxone73]

I am on denosumab (every 8 weeks), started it 3-4 months after diagnosis, when they gave me my third chemo. I am not sure I needed it as I have the proverbial and in this case literal "big bones" (which could still be empty in the inside!) but I can contribute with this paper: esmoopen.com/article/S2059-...