A quick background review …
Started out as 'I can't pee ! - a TOTAL urinary blockage. Dateline March break- 2017.
Spent 4 months in and out of emergency wards with out of control UTI's, a catheter for 4 months (which I was taking care of with NO CLUE as to how to manage it) and no urologist or doctor of any kind being willing or able to help.
Door knocking and phone calls go me nowhere – until I got a 'business card' of the a 'hospital staff urologist – whi finally relented and sae me about 3 weeks later – 4 months from start to seeing a doctor that would wvnn see me – that's what 'free universal healthcare' gets you in Canada – you need to be your best advocate and keep pushing to get the ball moving.
To the CREDIT of our Canadian Health care system – once you are in – generally speaking – you are WELL taken care of – the trick is getting in !
Dx in late spring of 2017 (June) – after initial tests →
G9 / PSA 300+ / Node positive (N1) / M0 – no signs of distant metastasis. Staged as T3b.
Needed a TURP – to rid myself of that cursed catheter – scheduled for late July 2017
It was a choice that was offered – the urologist passed me 'up the line' when it was clear I had graduted from urology to Oncology. The MO asked – want to pursue an aggressive treatment plan ? - YES said I.
Like all clinical trials, you need to qualify – the urologist said I can ask on your behalf which is the link between the two. I am grateful to have had the urologist go to bat for me – once I was HIS patient – he did his best for me. I also want to express my gratitude to the MO as well – once I was 'his' he went the extra mile – I am in good hands in a center of excellence – in terms of SOC, and clinical trials, I'm in the right place at the right time. At least that is what I believe – for now - so it is as good as it gets – for now.
The decision -> Radiation (EBRT – the MAX) with ADT – Eligard – recommended time frame was 28 months, as offered and accepted for participation in a Clinical Trial – ATLAS – appalutamide was the test drug in a double blind study (Casodex given at the outset to prevent PSA spike) comparing standard of care versus appalutamide + ADT vs. placebo and ADT for 28 monthly cycles.
One could debate the 28 months of Eligard (vs. 18 months – 2 years – there was / is no consensus) , but those were the trial particulars.
I QUIT the trial after 16 months due to side effects from the ADT – I was going out of my mind and felt like life wasn't worth living anymore. I thought the 'culprit' was appalutamide – don't know that yet, but have asked for the 'reveal' due to my BCR – seeing as I quit the trial AND I need to go back on ADT - it's surely part of the way moving forward.
It was suggested to me by the MO that Eligard was the most likely cause for my misery and suggested that the appalutamide would not have caused the 'severe' SEs I had experienced. My last shot of Eligard was July of 2018 – the '3 month belly fat version'.
Then came the ADT holiday – MY choice – I had reached undetectable and stayed there for over one year. I wanted to know IF I still had cancer – the only way to know by my rationale was to go 'off treatment' and wait to see what happens.
Of course, being advanced and HI risk, the odds were at best 50 – 50. So, I wasn't surprised but I am human – I wished it wasn't true – so I can sttate that it is nothing like the original Dx – I'm not 'dead man walking' - I know a LOT more now than I did then.
Another thing that I think offers some optimism – I reached a NADIR of undetectable in about 1 year – a good sign by most standards – if I went there once, I should be able to go there again.
Of course there is the medical cannabis story – I'm a licensed grower. I've grown my own strains of high quality CBD strains (and some THC strains as well – but I don't do THC any more) and hve learned to do my own extractions. For arguments purposes, I do NOT believe it has or will cure my cancer. My medical cannabis is for my severe arthritis and 'mild' chronic pain management only.
There is SOME evidence that medical cannabis has some anti-cancer characteriistics (for some types) but I am NOT interested in debating this within these forums – so please don't go there with me – thanks in advance ….
Of course - there's the 'supplements' debate – again – no comments at this point in time – I take several – for varied reasons and will post the list in the not too distant future- as promised to several of you who have asked …
Back to the main topic →
Here's some results and some 'clinical talk and stats' to go with them – all test are are few weeks old…
PSA as of Feb 18 / 21 = 9.57
(last reading was around 4.9 – a bit more than 3 months ago – so it has not quite doubled)
Complete BLOOD Panel –>
ALL good except the white blood cells are a BIT below normal – non specific as to which of the 3 is indicated but the total is below normal by about 10% of the scale.
My triglicerides + cholesterol levels – NOT good – I need to STOP consuming all the fatty foods I love so much – MY fault – I can and will do better BUT I will miss the BACON + Cheez I use as solvents for my daily Vitamin D consumption !
Bone Scan – basically clear – no signs of metastasis anywhere.
MRI – 'all clear' – for arguments sake.
CT Scan – 'all clear' for arguments sake.
PSMA/PET Scan (using F-18) – here's where it gets technical …
(Clinical Trial)
NM PET PSMA F18 - Details
Details
Study Result
Impression
Intense tracer-avidity within the L5 right transverse process and several intraabdominal lymph nodes consistent with metastatic disease. Fainter activity within potential additional peritoneal deposit and pulmonary metastases.
Narrative
PSMA PET/CT SCAN
CLINICAL INFORMATION:
68 years Male; post primary radiotherapy for localized prostate cancer, biochemical failure
Description:
GE Discovery PET/CT scanner, Hermes Hybrid Viewer workstation.
Lasix was administered at time of tracer injection.
330 MBq of fluorine 18 DCFPyL was administered intravenously in the right antecubital fossa. After an initial uptake phase of approximately 90 minutes, a hardware coregistered CT scan without oral contrast and without IV contrast was acquired for attenuation correction and localization. Whole-body PET images from the base of the skull to the mid thigh were then obtained.
FINDINGS:
Comparison is made to CT body, bone scan, and MR pelvis from October and November 2020.
Head and neck:
Intense symmetric lacrimal and salivary gland uptake is noted, which is an expected normal biodistribution of tracer. Orbits, paranasal sinuses, mastoid airspaces, upper airways, thyroid, salivary glands, unremarkable aside from mild sinusitis. No abnormal uptake within any enlarged cervical nodes are identified.
CHEST:
No tracer avid or size significant lymph nodes in the axilla, mediastinal or hilar stations.
Heart and great vessels unremarkable aside from coronary calcification.
There are 2 faint foci of uptake, one in each of the lower lobes, on the left corresponding to a misregistered millimetric pulmonary nodule of Max SUV 2.33, and on the right without any obvious CT correlate. Visualization is suboptimal due to diaphragmatic motion artifact. There also appears to be a focus projecting within the posterior left base which likely represents misregistered hepatic dome uptake without any obvious CT correlate in either the lungs, diaphragm or liver.
ABDOMEN:
Hepatic uptake is uniform without any obvious focal activity of concern. Hepatobiliary tree, gallbladder, spleen, pancreas, right adrenal, unremarkable. Nodular soft tissue focus measuring 11 mm in the left adrenal posterior limb demonstrates no suspicious Tracer avidity.
Physiologic renal tracer excretion and GI tract activity.
There are multiple nonenlarged lymph nodes with abnormal mild to moderate focal activity, located in the left para-aortic, aortocaval, bilateral common iliac, with the 2 most prominent index lesions on the left side, and iliac stations, Max SUV 13.95 and 9.76. Mild nonspecific uptake in the right inguinal node with a fatty hilum of Max SUV 1.97.
Abnormal moderately increased focal activity, max SUV 5.66, within the 9 x 3 mm anterior omental pericolic soft tissue density in the right lower quadrant.
MSK:
Intense focal uptake Max SUV 28.54 at the right L5 transverse process corresponding to abnormal mild uptake on prior bone scan. No other obvious aggressive bony lesions or abnormal uptake to suggest metastatic disease elsewhere.
END report
NB: The location and name of the clinical trial has been witheld – my choice …..
WHAT'S NEXT ?
I've done some reading and note that surgery is mentioned but I get the impression that it is a tall task to address all of these 'suspect' nodes, so something systemic is much more likely and maybe for a few years – assuming I respond well and don't likely 'whack myself if I go NUTZ'.
I'm not sure about how much MORE radiation could be done – I believe – but I don't have the numbers in front of me – that I received about 45 – 50 GY to the 'whole' pelvic region OR it might have been targeted HOT spots – but I do recall a more recent comment made by the MO that went something like this: WE are in a very sensitive location (intestines and some other niceties) and there is a limit to what we can do there' - I will get numbers and an answer for that when we speak next week.
So I guess that brings me back to surgery, systemic treatment(s) or can they (re) target limited areas in the pelvic region. I guess I'll know better soon.
We now have access to OUR electronic medical records in Canada – reltively new – so we have the ability to look back and see what the trends or stats were – what is missing for me are the original radiation treatment reports – going back BEFORE we have these more recent histories available for reference purposes. We now see what the doctors see – which certainly helps us to ask better questions and gather information on topics that relate to our condition(s).
I do know one thing – Eligard will NOT be a candidate for me – we will TRY some other options – maybe even monotherapy with Casodex – but that is not SOC in Canada, so I wonder if something else is on the horizon – I did mention Casodex and I did not hear 'NO!' - so maybe that is an option.
It's the agonist vs. the antagonist question – will the SEs be more manageable – that is where I'm hoping to get throught this phase in better shape. At least I have a much better idea as to what I might re-expereince if I go the agonist route – last time I thought it was hell on earth – I know different now – but it would still be a major struggle. We have to hope that science and BIG Pharma can come up with something more tolerable and even revolutionary to replace the current form of ADT that so many of us dread.
Is this the time for something that resembles chemo ? Zytiga or another class of second generation ADT that does not act like Lupron and essentially chemically castrate you ? Worthy of note – the Estradiol patch (which I read about that could be ideal for me) is NOT approved for use in Canada – I hope that the recent trials in the UK will change that SOON !
What I HATE and FEAR the most is the HOT flashes – and the brain FOG and the crying at the most inopportune times for nothing and the loss of muscle mass – the added fat, the insomnia I had so much trouble with, the joint pain and swelling, the neuropathy, and the non-stop fatigue that went with it. It made me suicidal …..
I got ALL of and the WORST of what ADT – SEs had to offer.
I know we're not a bunch of 'pros' in these forums – we are a group of 'brothers-in arms' for the most part – we share a common affliction – some of us worse off than others – a tragedy in waiting for some, unfortunately.
Some within, however, could point to a playbook to follow. I do trust that some of you know enough about these steps in progression who have seen and learned about what is the most likely / logical step to consider and follow – NEXT.
I need to ask the right questions and have enough facts to know the options – right now I'm guessing somewhat because I'm not sure about my interpretation of things that I've read. I haven't read a LOT about similar conditions and progression although I'm sure I'm not unique but not everyone is node positive at Dx and PSMA/PET scans weren't available for BCR cases with rising PSA in the single digits. I'm not breaking new ground but my experience(s) in the future might help inform others about their options and what might await them as well.
I appreciate any response YOU might care to offer with thanks ….
What to do next after RP and RT?
PSMA Pet Scan results
Immediate vs Deferred Treatment of BCR after primary and adjuvant therapies. ADT, now or later?
opinion on timing of ADT vacation 
Cabazitaxel not working anymore seems, PSMA Scan & PSA shows progression
