I wrote back in July about taking a ADT vacation…received some good advice and a few wanted an update as I went along…so here it is...
Recap
DX Dec 2018 when PSA was 6.2 - Biopsy GL 9
RP April 2018
Post surgery PSA 2.2
Aug 18 - 1st 6 month Lupron injection
Sep 18 - PSA 0.87
Nov 18 - PSA 0.53
Jan 19 - PSA 0.33
Jan 19 added Zytiga
Jan 19 - 2nd 6 month injection of Lupron
Apr 19- PSA 0.000
Aug 19 - PSA 0.000 - I passed on the 3rd 6 month Lupron injection
Dec 19 - PSA 0.000 - Stopped Zytiga
After One year since last Lupron injection and 2 months with no Zytiga, I have noticed the following changes to the side effects that ADT brought upon me:
* Hot Flashes - from 1-2 per hour to 1-2 every 2 hours
* Sleep - can once again sleep without waking up every hour - generally, now only when nature calls - 1-2 times per night
* Brain Fog - the is the most significant improvement - the fog is clearing up fast
* Libido - most disappointing - no significant improvement. But have found myself subconsciously noticing the younger ladies at the Y - maybe something is happening
* Blood pressure - returned to my normals
* Fatigue - much less - at peak ADT - wanted to be in bed by 8PM even with an afternoon nap. I'm good most days without nap and stay up easily till 9.
* Weight Gain - I do a 4 mile walk/jog 5x per week plus light weight training. Still 15 pounds heavier than when I started the ADT - down from 20. (Less intake is needed! - working on that)
* Wallet - significantly thicker since Zytiga stopped
Have Uro appointment in March. He was not enthused about me wanting to take the ADT vacation and I got the “there is no proof that intermittent ADT works” speech. I’m hoping I can get a year +. Uro is not that optimistic.
Written by
Ron53
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That’s a problem as I don’t have a plan. Some suggested a PSA of 2, others 1, some said to look at doubling time. I don’t know. Any suggestions for me to consider would be appreciated.
Some use much higher PSA (like 10), PSADT, time with normalized T levels, fixed time (e.g., 2 years), symptoms, radiographic progression, or some combination of them. It depends on what you're comfortable with.
10 seems excessive and contrary to some recent studies that favor 2. From one of my oncologists:
“Yeah the original SWOG IADT study was flawed for many reasons including the fact that they let patients go up to a 10 before restarting hormones. We go to a 2 before restarting ... and we think that's much safer.”
No, it doesn't. You would need a prospective, randomized clinical trial to show that.
Ask yourself these questions about your linked retrospective study:
(1) How did they select the patients who ended their ADT vacation at 1.0 ng/ml? How did they select those whose vacation ended at 4.0 ng/ml?
(2) Because "progression-free survival" is largely defined by biochemical progression (there was no significant difference in clinical progression-free survival), and probably occurred when PSA reached 2.0 ng/ml, Group 1 is forced to have a longer progression-free survival.
(3) What was the total amount of vacation time both groups had before clinical progression occured? (the follow up seemed to be just one vacation cycle)
I’ve been bitching and shit for years and was about to update my vacation status after my March 11th visit!!!! But......
It’s clear as day that either ADT or Eligard (or a combination of both) is what beat the living shit out of me!! Being asymptomatic prior to ADT and once on vacation for 9months or so, I’m finding my way back to the old me, is proof enough for me!!!
As of this writing, ALL ANDROPAUSE SYMPTOMS ARE G.O.N.E.
Not going list all right now! But I feel really good, except for ongoing penile rehab and my cognitive issues that are worsening at best!!! I more and more fear that “really really stupid” will be a new normal. Now we can add the decline of verbal agility so now.... I sound stupid!!!!
Time will tell when as my T continues to rebound (?). Plus, It has been 16mo’s +/- since my last 3mo injection but it hasn’t been a year since ADT stopped.
Nov 9, 2018 last 3mo shot PSA >0.1 / T 18
Feb 9, 2019 vacation start
June 9, 2019 6mo +/- Bloodwork PSA >0.1 / T 19 (still full blown ADT)
Nov 13, 2019 2nd 6mo +/- Bloodwork PSA 0.1 / T 103 (T rebound start)
March could be a good month for both of us! It looks like your T (the numbers at least) came back very quickly. Dr said mine was near 0. I just hope it increases as your ...faster than the PSA so I can enjoy a few months at least. Best of luck on your visit.
I was surprised (as was my Url.) that my T was only 103 based upon how I reported that I could notice the hot flashes, mood swings, no libido etc melting away between June and Nov, and even better now!!! Psychosomatic (????) maybe but who cares!!!! The net result is good.
Castration as defined on Eligard spec’s is 50. So to be @103 in lieu of 300 to 700, I would not consider being a quick rebound. Granted it enough to reverse andropause symptoms but there are still the side effects that went far beyond the norm! ADT has left me as dumb as a f$&king stump. We’re hoping that more T will relieve that too! If T does not rebound (or raise, as I don’t have a baseline to determine “rebounding”) by March and my PSA IS BEHAVING, they want me to consider T therapy to provide the boost needed to judge whether it will alleviate the remainder of issues. Inherent to this is the risk of waking the beast so not an easy call on my part!!!
So I’m thinking right now to just let nature correct the unnatural effects of drugs and not push the envelope with even more drugs!!!! It’s up to them to change my mind!!!
What you are doing is called IHT, intermittent hormone therapy, and it DAMN well works, for some. I use a psa of 4 as my max, go back on until my psa drops to its lowest level for two straight months, then go off again.
I also do a combination of casadex pills 50 mg. per day, starting a week ahead of my lupron injections.
The break time does for me, as for you, the ability to feel almost normal, gives my mind and body a chance to regroup for the next round.
So, I support this approach, as long as your psa drops and your nadir is reached for two months minimum.
since I see no reason to lower my T, if anti-androgens shut down the PCa from utilizing T, no matter how much of it is around. T keeps me chipper, most of the time. casodex shuts off turgid erections but not orgasm, but maybe the 2nd gen. anti-androgens work better in that dept... haven't researched them yet.
The anti-androgens don't just work on cancer cells. T will not do anything for you if it cannot get into your cells. The new generation of anti-androgens are more powerful than Casodex. As the cancer progresses, it gets much more sensitive to even the smallest amount of T.
no studies on iADT?? that's odd. haven't even thought about it, maybe i should, maybe not. Been on casodex+finasteride almost 22 months, PSA has been <0.1 - another test end of this month. Uro said last week I was a walking anamoly. "Is that like a zombie or something?" I asked. I'm very meticulous about meds, take them within 2 hours of noon come hell or high water. also take a shitload of herbs, especially Zyflamend, a 10-herb combo. NO CBD or anything like it (ended my pot head days in college).
I am also on vacation and March will be one year since my PSA went undetectable. Lingering ED sent me to my Uro in December and after reviewing my records he told me that he would be doing exactly what I'm doing with IADT. Can't get much better endorsement that the doc saying that! QoL has greatly improved, my T rose in Oct to 476, PSA remains at 0.09. I did not have surgery so some PSA is to be expected. If PSA rises to 2.0 I'll consider returning to some sort of ADT but, my MO says it's not going to rise anytime soon, now that's confidence I like to hear!
At least so far I agree with you. He’s a solid URO, but is a little light on Quality if Life issues. That’s why I like this forum to learn myself from others.
Yeah, I have heard that, but for me, I was supposed to get the Lupron last Aug, but opted out , yet continued the Zytiga for another 4 months. Apparently Zytiga doesn’t have the same type hangover.
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