I’m ashamed to admit that I can’t make sense of some of the simpler questions regarding my cancer anymore..... this time the numbers! I used to be able to speak intelligently about what I learned here, but with my continued mental deterioration, I would need hours and hours to re-research to get the answers that most of you here can provide me with a couple key strokes!!
Short story is I’ve been off the juice (Eligard) for @18 months. This was to address the severely debilitating cognitive decline, clearly caused by my ADT.
The thought was to start T therapy to see if my condition would improve but I decided to give it some time to see what mother-nature would do for my levels on her own!!! My T started to rebound naturally about 6 months ago which was about 12 months after my last 3mo injection. The rebound of T was accompanied with slight uptick in PSA. Dr, thus I were not at all alarmed by this, but the last test (yesterday) is really grinding my gears!!! I see a pattern of doubling and I don’t meet with my urologist until late August!! However, I’m meeting with the Testosterone Therapist (???) Dr (??) Wednesday. He has kind of fought me about waiting and wanted to start the injections.... casting my doubts about him!!!!
11/18. Final Eligard. T=18 & PSA=<0.1
6/19. T=39. PSA=<0.1
11/19. T=107. PSA=0.1 (castration ended)
3/20. T=317. PSA=0.2
6/20. T=390. PSA=0.4
My question is the alarm factor of the doubling of my PSA numbers!! I don’t make good decisions anymore but am still “smot” enough to worry myself sick!! Thats a big part of my retardation!!!
My gut feeling is to abandon the T therapy assuming that the PSA will continue to follow any increases in T.
I know deep in my heart that I will have to make some very difficult decisions in the foreseeable future.... but not now, I pray!!!!
Any quick thoughts by the braintrust out there will be greatly appreciated! I want to be prepared for Wed’s appointment and will consider notifying my Urologist if warranted, as that he is not privy to the last couple of tests (ordered by the T dude!!!).
Thanks in advance!!
Jc
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Jimhoy
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Your PSA is still low. More importantly, is the return of T helping your mental status? I don't know if Casodex or estrogen might be better than Eligard for your mental status - something to discuss with your oncologist.
The return of T (although still in the basement of whats considered normal), seamed to provide relief to a whole host of side effects but not my mental status... at all!!! Even at 107, mostly all andropause side effects went away!!! I still consider it too early to agree with some inferring my accepting a new normal but I am prepared!!!
I was also on Casodex when starting ADT but my then Urologist took me off when confusion (first indicator of cognitive decline) became an issue. Maybe by itself would be better!!!
I have preexisting coronary artery disease and had CABG x4 eliminating my use of estrogen!!!
Thanks. Going to let it ride if numbers are not causing anyone but me heartburn!!!
I value your input so to put this to bed, what do you think of my holding off on Testosterone Replacement Therapy?!! Agree?!!!
Done...... but after the fact! I’ll never remember the name but here goes... Niro physic exam?!!! No baseline prior to symptoms other than when I was tested, they compared me to people of my age group!!! No sign of dementia but showed problems in areas of spontaneity which was really my primary complaint at that time!!! Could not carry a conversation without awkward dead air, use of wrong words, lose my train of thought...etc!! That was about a year ago when I was still full blown AD although off the treatment. Just residual effects I suspect!!! I actually, have an appointment with my PcP on Thursday that I made as a backup should my T therapy fall through, to discuss the possibility of Ritalin in lieu of my T’s rebound helping with my issue!!!
Rough patch for you just now. I wish it could be otherwise. Multi-variant analysis with diminished cognitive function must be a daunting thing for you. So much of "confusion" and"cognitive function" are perceptual; so getting some baseline numbers with neuropsych tests is sensible. Your PCP or MO could arrange. Estrogen is not likely to drive you into a ditch rapidly. Can you trade an interval of clearer thinking for an unknown theoretical risk that estrogens MIGHT upset the balance with coronary artery disease? And if heart attack is your destiny, is that worse than melting away slowly? I think each of us would answer that differently. Keep us in touch.
Thanks for the test name! Wish I had read your reply prior to responding to Tall_Allan. I was pretty close with my recollection though!!!! So as stated there, that was done a year ago and results were also as stated! You sparked a bunch of thoughts so I need to collect my thoughts to reply!!! Thanks again!!!
Well, like I said, if this didn’t spark a shit load of thoughts?!!!!! Draft after draft of attempting a response, trying to format some of my thoughts into something presentable may look scrambled but.....!
I’m equally sorry as glad that the topic swayed over from my PSA question to the reason I needed to ask it!!!!
Anyway.... “rough patch”???? As they say, “When you’re dead, you don’t know it... you’re just dead, it’s difficult for other people.... Same as when you’re stupid”!!! But to still be smart enough to see this happening to yourself.... well, that kind of dwarfs a rough patch!!! First noticing and complaining about symptoms only 4 months into ADT is why I point my finger in that direction!!! The frustration of watching the condition worsen while trying to convince the professionals that it really is happening, just adds fuel to the fire!!! Other than the Dr’s sympathetic “look” as if I said I saw Bigfoot, my Oncologist is about the only one that admits he is aware of an example of this condition only because he claimed to have a close colleague who had to leave his practice due to it. One of my “sparked thoughts” was to chase him down to see what he’s done!!! I digress!!!
I’ll summarize that you are correct on all points however trading intervals of clear thinking would mean getting back to having something to trade!!! My last injection was 11/9/18. I still have less and less to trade!!! So it might just be the time to say “F” it!!! THE DAMAGE IS DONE!!! Why worry about resuming treatment that includes the “suspected” cause of my current condition (Eligard)! Especially if it’s proven to prevent something known to be lethal!!! No professional will commit to it being the “cause” anyway, especially the ones peddling it!! How much good money after bad do you spend confirming a new normal?!!!! So what could happen..... it’ll make me stupid? Stupider? That ship has sailed!!!!
So anyway, another neuropsych test is being scheduled to compare to last year testing which was compared to average people my age as sort of a baseline!!! Some sort of brain MRI as well. It was a virtual Dr’s appointment so I have no summary / instructions!! Once again, just let it play out while knowing the outcome in your gut!!!!
Heart attach, hit by a bus, jealous husband (we can dream), cancer.... well there are 1001 ways to die!! At the end of the day, I think we’d fight any and all of them, to some extent anyway. But for me personally, I’d take them all over dementia / alhzlmers! That has to be the worst way to go.... not so much for me but for my family and loved ones!!!!
Remember Chief Dan George in "Little Big Man"? "This is a good day to die." Then at the end of that day when he had to walk back down from the mountaintop the only thing he could say was, "Well maybe this wasn't a good day to die." We all want to live and die as warriors, don't we?
Your T is recovering well by itself, so not sure T therapy would achieve much. Conversely that is a rapid psa doubling time. If it was me, I would get next psa in 3 months and if it has doubled again, get a scan to look for source of psa rise
Ultimately, that is my plan now that I’ve got sone reassurance here! I see my Urologist and Oncologist at 6 - 8 month intervals (alternating) so the order is already in place for testing in late Aug., so that plan coincidentally fell into place!! The added testing was a result of my deciding to see what recovery would take place without more unwanted drugs (my thoughts... not the professionals!!). I never would have known about the increases otherwise!! In hindsight, I would gave seen it go from .1 to .4 in 6mo’s which may have been more alarming to me!!!
Thanks for your comment!
Jc
Ps: I agree to do nothing with T for the time being!!
You were still withdrawing from ADT for months - you are NOT 100 % back to yourself.
Your PSA SHOULD rise because you have 'T' and the signaling that goes with it.
You are on vacation - you may even end up cycling on it.
Your actual condition and future status are basically up in the air.
To PANIC now would be totally useless and too stressful for a ton of reasons.
There is a 'ceiling' to rising PSA before a recurrence is suspected and IF there is evidence, scanning for it would be the next phase (perhaps - but that is way ahead of where you are at now and I am not predicting this).
Assuming you had radiation - The ceiling is above 2.0 and (re)treatment might start past 4.0. Depends on a few factors - a Medical Oncologist specializing i PCa would be your best bet IF you need more advanced treatment down the road.
IF you had an RP - then that's something to consider.
I am more advanced than you, in terms of PCa - and on a vacation as well - my numbers are rising more dramatically than yours and my 'plan B' is already in place.
I feel good and will be on the links this PM - 3 years after Dx.
About getting 'T' shots - that sounds pre-mature and risky to me - there's no evidence you need it YET - some would claim malpractice for administration to a know cancer patient !
Wishing you well - and try to relax a bit more - you've earned it .....
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