Until yesterday, I have been quite happy with my trimonthly blood test results over the last three years assuming that my PCa was in sleep mode since most of my PSAs have been <0.01. Now you are saying that PSAs for metastatic PCa patients are only cursory indicators of what is really going on. How did PCa patients prior to the recent approvals of the scans that you recommended, i.e., Axumin PET CT...approved in 2016, Ga 68 PSMA-11...approved in 12/2020, and the 18F-or 11C-Choline...approved in 2012, ever know the real story? None of my four doctors that I forward my blood test results to have ever suggested that I also need to get a scan.
Due to living in Thailand on a budget, my age, and having PCa it is impossible to get health insurance and Medicare pays for nothing outside of The States. Am I pretty much 'screwed'?
Signed,
Worried as hell!
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E2-Guy
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Karmaji wrote --- " ...Integrative therapy is the key: Diet, exercise, intermittent fasting, positive thinking without worry...called choiceless awareness... "
Not one for "INTERMITTED FASTING" other than when sleeping or not munching but do agree with diet and exercise. NOT A POSITIVE THINKER except for I'm positive that I'm GONNA DIE sometime in the future. OPPS -- still here. 👍👍
WHY worry? Only upsets my innards and besides I have bicycling to do like heading to Walmart after posting to get some salad and Sockeye Salmon.
My next blood draw is next week and will proceed from there. If indicators indicate something then I'll zig right and if nothing much then I'll zig left and live until ???? or at least until the next blood work. Since 2015 the 5+5 hasn't taken hold anywhere r.e. -- scans and blood but "ONLY THE SHADDOW KNOWS" what's happening right now so ignorance is bliss.
Makes me wonder if you use a mirror on your bike or helmet when you ride. As long as no one or nothing can overtake you then it is not needed I suppose. (Used to road race bikes myself.) but the day comes when you want to know what is coming and you can decide whether to zig or zag. Just a metaphor - Keep on riding!
Eyeglass mirror used for decades. Without the mirror I feel naked, same with helmet. Still thinking about the rear radar that is available but my riding time/miles have substantially been reduced and not thrilled with the co$t.
Amazing, a 5+5 holding it steady for six years.Addicted2cycling, when I check your profile I get the impression you did immuno, together with cryo, soon after dx and without any signs of metastasis, is that correct? In the hope that it might even be curative?
No signs of mets at dx. Immuno was to boost my system to fend off colonization. Curative ???? Would be OK with a LONG TERM LOAN on LIFE with little hits showing up that can be zapped.
GL8 is a bit different compared to my GL10. The DRE performed 9 months before actual biopsy revealed the tumor's presence but due to my training for an upcoming Ironman Triathlon I did not go for a biopsy. (STUPID) Not sure how much before that it was even hanging around possibly allowing cells to wander but not bedding down for scans to show. If lucky my IMMUNO injection is helping to prevent such occurrences but chances of cure from the beginning have always been iffy. Also, never had a Ga68 or 18F-DCFPyL that might have shown something so if next week's blood test indicates something might be cooking I will be having an updated scan.
I dunno about France or Thailand, but Kwon's choline scan here is expensive. Seems like the two I had were negotiated down with BCBS to $14,000 and some change each and cost me something like $1500 apiece. I think it is an excellent idea to have more than one type of scan done.
Karma ji, see my take last the bottom of this thread as it relates to your situation. Agree there is great benefit in intermittent fasting. I do OMAD most days (and deep meditation every day). 🙏
MateoBeach, do you know of evidence that OMAD is considerably superior to a short feeding window of about five hours? I havn´t been able to find any and kind of hoping there isn´t any! I tried skipping my berry and nut salad a few hours after dinner just before bed-time the last two evenings but it was impossible to get to sleep.... Need something new in my belly or no sleep it would be the ordeal of my life to wean off that. I´ve successively reduced the window to 4-5 hours without problems but going to OMAD would be incredibly hard. I figure the only way I can do it practically is by putting off dinner until just before bed-time but that would eliminate the remainder of social meal get-together.
No I think both are just various descriptions and approaches to the same physiologic process of IMF. The key is to have a prolonged window of fasting to permit some time in ketosis mimicking a hunter or migrating period of ancestral human adaptation. This triggers many epigenetic adaptations for protecting the genome and burning primarily fats for long inexhaustible energy. Probably anything over 16 hours per day most days of fasting with non sugary liquids before eating is effective. Your 18 hour window is fine and effective. My “OMAD” is very similar. I allow myself to eat starting at 5 PM or so while preparing dinner which is usually around 6. Then snacks are fine until my bedtime ( preferably low carb or keto) until bedtime at 9 normally at home. Not rigid. I am very Leto adapted so I almost never feel hunger. I can hike all day on a cup of coffee and water with electrolytes.
At home I do drink dry white wines most evenings. Cheers! 🥂
Right, we are on a quite similar fasting regimen. Food makes me tired and without food I am sharp all day. Come evening it´s so nice to eat big! Like I imagine the hunters and gatherers did.
Our time-restricted feeding may well promote autophagy too although I can´t find much in the way of clinical evidence for this.
Changing tack - I recall you once responded to a thread on melatonin use by saying you were going to give it some thought. Did you?
I saw your post today, and then read TA’s post. As usual, TA is a comprehensive, clear and logical writer, and he presents all the various information.
But, he does not address the use of tE2 as a primary method of ADT because there are no RCT making the comparison between it and other ADT drugs. He’s a RCT based presenter.
tE2 is what you and others have been using as their primary ADT method to reduce T. RCT comparing tE2 to other methods of ADT are not easily found beyond the PATCH trial. I’d be very interested to see what Wassersug and others have to say about the use of tE2 comparing it to other ADT drugs.
We have a huge gap in the US relating to imaging after the primary treatment of the prostate gland and eventual BCR. Slowly, PSMA-PET scans are improving the imaging and changing the direction of treatment for PCa following BCR. I’m curious have you searched around to see the cost of a PSMA-PET scan closer to Thailand?
I got the PSMA-PET scan for no cost at the LA VA without a lot of mumbo-jumbo about qualifying. I’m a vet, and I have PCa. I had a RARP and undetectable uPSA, but I was accepted into the trial. The scan revealed no identifiable mets - yet, but I believe they are going to appear eventually.
In the US, we’re waiting to see how Medicare and other insurers are going to regulate payment, and how US health care providers will ration and regulate the use of PSMA-PET scans. We can pay for the scan ourselves, and some guys are doing exactly that.
Don’t panic or worry unnecessarily. We do what we can do to survive and have a good QOL.
Richard W. is totally convinced that tE2 therapy is every bit as effective as the other forms of ADT without the numerous side effects. He has been using the gel as mono-therapy for almost 20 years.
Regarding scans; I have had two that turned out to be absolute nightmares!
Six years ago I lost a kidney because an MRI (suggested by a friend who found out that I have PCa) exhibited a 2.75 cm mass which was thought to be primary renal cell carcinoma. Three doctors in Dallas (Baylor and UT Southwestern) recommended no biopsy and advocated performing a nephrectomy which was not needed since the 'mass' turned out to be a benign renal cyst.
About four years ago my PSA had risen to a little over 1.0 so I ventured down to Melbourne, AU for the Ga 68 PSMA-11 scan which identified five sacral lymph nodes. This scan was available in CA; however, not yet approved and was $2700...$600 in Melbourne. Back to CA to have them excised which turned out to be a waste of time and money since my PSA dropped to about 0.5, but then back to around 0.8 in less than a year. Had I been aware of TA's opinion regarding removing LN's, I would never have subjected myself to the $75K surgery.
At this time I was a candidate for ADT which I was vehemently opposed to taking. While having lunch with some friends (one of which was a ladyboy) here in Thailand, 'he/she' happened to be digging in 'her' purse and pulled out a tube of Oestrogel which I asked 'her', "what it was for?" I took a photo of it and began reading about it on Google; also posted the pic on this forum to which Richard W. replied. I called him and we talked for almost two hours about tE2. That was three and a half years ago and I have been using the gel ever since.
Ron, you have interpreted TA's point a bit differently than I have. I took the point to be this: when ADT fails (which it ALWAYS does) the first progression of metastasis may not show up with elevated PSA as a marker. And my thought was: so what? I fully expect ADT to fail eventually, and if my PSA tests do not tell me its failing, I'm sure something else will!
I don't think the type of ADT is the issue (E2 or not). We all will become castrate-resistant at some point. We all know this going in to therapy. So why worry now? Just because there is a possibility that progression occurs while on ADT without a significant PSA rise does not mean 1) that your metastases actually ARE progressing, right NOW, or 2) that the progression of those metastases poses an imminent threat to your life or health (or at least one that cannot be addressed with other treatments).
It seems to me, Ron, that you are in roughly the same position we all have been our entire lives: gee, I just MIGHT have a lethal cancer growing in me and progressing rapidly. And I might NOT! The knowledge that ADT is not a curative therapy already tells us that all we can be certain about is uncertainty. The point of ongoing PSA testing is to hopefully alert you to a treatment failure... it is not to tell you you're cured.
I would say, none of your four doctors have ever suggested that you also need to get a scan because you don't really NEED one. You might WANT to know exactly what is going on, but is there a clinical reason at this moment that your docs NEED to know? If you are healthy, free of pain and symptoms, and all your other blood markers are stable and within normal range, then what is the medical need for a scan?
That said, it is within your ability to keep an eye on those other markers along with the docs... things like increased anemia, or especially ALP, which might indicate bone metastases (several times my ALP has risen even as PSA was declining).
Yes, we all may have micro-metastases getting spread through our bones even as we see no sign of that in a rising PSA number. If you start out the journey by assuming THAT IS the case (as it probably was even before diagnosis), then it will be a less anxious journey.
I agree with your analysis completely. We’ve got PCa. Most probably we do not know how aggressive our particular version happens to be, but it is there - lurking and waiting for when it’s time to sprout. When one’s PSA moves, if we’re curious, better scans are available, and then, with more information, we can make some treatment decisions. There’s many options.
Hope you’re doing okay. It’s been a long recovery haul for me from my CABG5 surgery, but I’m getting there. Good luck.
Your reply makes too much sense...thank you so much for taking the time to answer my post! Even though it is a bit scary, I think that it will help me to better deal with this scenario. I feel very fortunate to have friends such as you on this forum who care enough about others to contribute their knowledge and experience.
Hi Noah - that was a really good and well balanced post. The only reason to get a scan when things appear to be going well with ADT must be to obtain a quality baseline set of scans which you can use to calibrate future scans which may indicate progression. I intend to do this soon if it seems in the next blood test that PSA is no longer decreasing.
I'm still not 100% convinced that ADT always fails at some point. I've been on casodex 50mg, finasteride and tamsulosin since 6/2018 which has kept my PSA <0.1 and now that labcorp has gone 3 decimal place testing, PSA last week was <.008 - which is the lowest the test goes. But I agree with you, that metastases could be all thru blood, bone and lymph and that if nothing is showing up in PSA, my asymptomatic present QOL can become symptomatic in any of a dozen+ ways.
Recent rise in ALP, AST and Alk. Phos. could mean liver and/or kidneys are being stressed, but how hi ALP could indicate bone mets isn't clear to me at all. ALP, like the others, is a liver enzyme.
So my plan is to try lupron if my present cocktail stops working. But the PA that saw me last week told me about Orgovyx, which is FDA approved, works much like lupron but is an oral pill... with less harsh SEs if any.
Regarding ADT failure; Richard W. has been on tE2 gel for about 20 years now and his PSA is still undetectable. I have been using it for almost 3 1/2 years now and my last PSA was 0.003.
thnx for reminding me - looked it up a few minutes ago, but for some reason didn't register as an option... which it certainly is. Will research it more and add to my list. I'm deathly afraid of RT and/or surgery. I've grown quite fond of my gland, as enlarged and by now squishy as it is 😆
my latest test was last week or so. before that , in June, the lowest figure was <0.1 --- stayed that way for 3 years. so now the .008 is the lowest, must have changed within the last 3 months
Yes they are; however, I haven't checked prices on these scans yet. Even so, without insurance they will still be costly. Did you see this reply?
Anomalous in reply to Karmaji 2 hours ago
"I dunno about France or Thailand, but Kwon's choline scan here is expensive. Seems like the two I had were negotiated down with BCBS to $14,000 and some change. and cost me something like $1500 apiece."
I am totally confused now, and at the risk of sounding completely stupid, i have been operating under the belief that CT scans will not show anything unless PSA has risen to about 2.0. Have tracers improved that much that they will now light up Mets so small they dont yet express any PSA? I was under the impression that my undetectable PSA means I am safe except against the rare variants of PCa, such as neuroendocrine, which dont give off PSA. Apparently I am being over simplistic and/or over optimistic. Help?
I was talking to my ONCO today. Like TA he is of opinion to have Choline scan even if PSA is <0.006.... That is his take for met pc....I asked why not go PSMA scan....He says in France you go immediately for PSMA if Choline shows nothing for Met PC....All paid.
This is the approach to catch PC cells in their low loads...not visible in PSA.....
Do not panic with TA statement, nothing is alarming simply to identify some low level activities ...which are easy to handle before they become visible on PSA....
I wonder what one will do if there are lights in Pet scans....
Been silent on that to avoid the wrath of TA. But think he missed in this instance: K had his scan identified oligomets zapped (SBRT) and PSA went to undetectable. That does not mean PSA has become useless for ongoing monitoring of other micro mets. On the contrary it improves the signal to noise ratio by removing the oligomets which were contributing the most. Now monitoring while on ADT vacation will be more sensitive for when it is time to resume treatment.
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You are invited! To my 105th Birthday Party.
Have I really reached the last hitching post. Its truly surreal.
Have you any better ideas?
My last post and thank you 
so my fellow shipmates i'll tell you me C story
