PSA has gone from .32 in July 2022 to .52 in October to 1.99 in January. Worried that decapeptil is failing. NHS consultant has been on at me for two years to go on abi etc.
Have resisted as unlike the Moffitt (which makes sense to me) in Tampa the SOC in the UK is to pursue maximum tolerated dose until progression.
As a metastatic G9 5+4 I have always cared more (unless pain ever has a gun at my head) about QOL. in 2012 when I was diagnosed with 5 bone spots on my pelvis I was up for surgery or radiotherapy but was sent away with a zoladex prescription.
It would be different if i was diagnosed now.
I am willing to gamble on stuff that is not SOC like BAT but from all I can gather the UK has done absolutely nothing to advance the good work done in this area by the USA.
Testosterone Cypionate is a Class C drug here and the only alternative would be risking the prolific fake market that bodybuilders have to negotiate.
Before Elreada came along I was thinking, if forced, that I would opt for Enzalutamide but prefering to go with a shot at a minimal effectiv dose of half or a quarter as some have recorded here and elsewhere.
Now I am thinking that I might go for Elreada.
However, I wonder if half or quarter dose would be a good choice given that not so many of us have experimented with this newer drug.
Would appreciate any advice. Thanks and as always good luck to all.
Written by
Rickytarr
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Usually, the standard at least in US is to start people on a GnRH inhibitor like decapeptyl, and add an androgen receptor pathway inhibitor (ARPI) drug like Zytiga, Xtandi, or Erleada. I was in a trial for Erleada before surgery and tolerated it well. I am now on abiraterone.
My big concern is that decapeptyl has indeed failed you and you have become MCRPC... castrate resistant.
Are you looking at taking half or quarter dose of Erleada based on quality of life, or based on adaptive theory ?? If adaptive theory, I take it you are looking to take some minimal dose to get PSA to an undetectable level and stop. Repeat as needed. Cujoe is working on a dosing n=1 on adaptive theory.
If it is QOL, then talk to the Gentlemen of BAT--smurtaw, mateobeach, and a number of others... Smurtaw has a number of posts out, and did one on BAT with Erleada to review.
The other question that I have is did you get a follow up scan?? If not, you should in order to track disease progress. You have bony metastasis, and me too. If you get a scan, and there is less than 5 mets now, then getting SBRT to wipe out resistant mets may be the thing to do. If more than 5, but less than 10, then SABR COMET 10 is still recruiting--see below:
SBRT could reduce your metastatic tumor burden significantly in just 5 sessions.. Just some thoughts I had regarding your info. In the meantime, wishing you well on your path. You got on this hell ship, but not by choice. Luckily, the crew here is a good lot and helpful...
Thanks fish. I would like to use some form of adaptive therapy but would have to do it independent of the doc as he does not hold with going against SOC.
Can't blame him as that's the way in the NHS. If I could monitor my PSA independently then start/stopping a drug would be fine.
My last bone scan came in April 2022 after a PSA of 39 was recorded in February of last year.
The culprit (I believe) was B12.
I had taken a break from ADT since June 2021 and come December of that year had symptoms of numbness in limbs consistent with Pernicious Anaemia.
Its a condition which must be taken seriously but I wanted to avoid going to my GP as I wanted to control how much B12 I took.
SOC for the condition with neurological symptoms can mean that many B12 injections are required until the symptoms disappear.
I decided to follow SOC for the condition without neurons symptoms.
I purchased half a dozen vials and took them as required.
Having read numerous B12/PC warnings on this site and elsewhere I was very worried that I would be one of the individuals who might suffer a setback with B12.
When my PSA went from 2.9 to 39 I had to tell the docs what I had done.
However, the consensus was that it was due entirely to my PC and my B12
argument fell on deaf ears.
As a result I had a bone scan and CT. Thankfully no mets were seen and on returning to decapeptyl my PSA fell back to 1.41.
As I say my priority now is to workout how to handle my choice between abi, enza or (my fav?) erleada.
Rickytarr - Not sure how high your B-12 was, but as a mostly WFPB eater, I need to supplement with B-12 and have it checked yearly. I try to keep it in the lower 1/3 of the range. I also supplement daily with Vit-D3 (for a lot of reasons) and try to keep it in the upper third of its range. Many minerals an nutrients seem to show a U-shaped curve where too little is not good and too much is bad. Not prescribing, just sharing what I do.
Good luck with re-calibrating your treatment. If you have to stay with SOC, the wizards mentioned by Fish might be able to suggest a "test" that would do that. I'm currently using old-timey, cheap-as-dirt bicalutamide + dutasteride as a short-term QOL preserving treatment trial. However, just this week I've stopped the bical until I can get RT for the bical "booby prize". My MO is uninterestingly going along for the ride and still books me for a lupron shot at every appointment. Pretty sure if I go over to some form of BAT at mid-year, I'll be pretty much on my own.
Good Luck with whatever you decide to do. In all cases, try to Stay Safe & Well,
Paz, Capt'n K9
PS If you want to do periodic self-monitoring labs, LEF has a reasonably priced labs service with Labcorp and, depending on where you live, you can get the blood draw done at your local Walgreens. Also, while I haven't used it, others get similar results using ULTA labs. Links to both below:
Thanks cujoe. I'm sick of worrying about stepping out of line with supplements or food etc: I used to enjoy all sorts of stuff but have guilt-tripped so much away from how I used to be.
I used to eat bacon (4 to 5 slices) and two eggs and the trimmings most days for much of my pre cancer life.
. If I am ever aware that my time is running out I plan to fully embrace a heart-attack diet.
I worry about b12 and given that pernicious anaemia can be hard to diagnose I just hope that my symptoms (which have abated) stay away. Good luck with bical.
Against docs wishes I got two years intermittent out of it.
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