I am trying to take less Lupron. It seems if I keep with the normal monthly regiment, my PSA drops below .2 and my Testosterone goes to <3. If I don't take Lupron for 2 months by PSA is at .4 but my testosterone is now 165. I am 60 years old. Is there a real sense to taking Lupron monthly if the PSA stays really low even if you skip it a couple times?
How infrequently can you be administe... - Advanced Prostate...
How infrequently can you be administered Lupron?
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Dave78717
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What is purpose of Lupron.? The purpose is to knock down Testosterone to as low as possible, preferably below 10. As long as this goal of very low T is achieved, lupron is doing what it is supposed to do. And a very low T deprives cancer cells of T ..thus killing the cancer cells which is reflected in falling PSA.Adaptive Theory explains that when T is kept low continuously for long time, cancer cells learn how to find and use other pathways to keep growing. This means they are likely to become castrate resistant earlier.
When a break is given and T rises, cancer cells do not have much incentive to find other ways to grow as they are reassured that their favorite stuff, i.e. testosterone is still around.
This adaptive theory tells us that intermittent ADT may delay castrate resistance and is equally effective to continuous ADT and has less side effects.
Problem is that SOC promoters believe exactly opposite.. they think one should use sledgehammer to kill all cancer cells. I will go for sledgehammer style only if I am convinced that my PCa is aggressive type. For garden variety PCa ,intermittent ADT with close monitoring seems a better choice. So if rifle is successfully killing the bird. .why should one use AK 47 ? Stronger the treatment.. more is toxicity to the body.
Really low is <20 ng/dl. It makes a big difference- don't skip it. If you need a vacation, discuss it with your oncologist. There is no point to taking a vacation if testosterone doesn't rise enough to improve your quality of life.
I wish I understood this disease more. I feel a Psa of .4 with testosterone of 165 means I can handle this level of testosterone without feeding much cancer.
Sure I can talk to my doctor but if .4 Psa is very low can’t I wait a bit till Psa hits 1 or 2 before i take a lupron shot again?
I just answered that. Your wanting something to be true doesn't make it true.
I say something like that all the time on various issues. It happens when there are few good answers. Still I feel a lot better about making an intelligent decision when I float questions out to this community and see what has occurred with others. I do think though that 165 T is way too high to be considered ok. I will take the shot again.
Hi Dave. I have the same questions you do. Your idea of putting less poison in your body in order to allow for a slightly improved QOL makes great sense to me (in my ignorance, perhaps). My question is, does maintaning testosterone at 165 give you your life back?
My idea is mainly making Lupron last longer. Delaying or even preventing castration resistance, but oddly QOL is notably better at 165 ( I feel a little smarter, a little stronger) but 165 I'm pretty sure is too high. I suspect my PSA is going above 1 or 2 now.
I had RP, EBT & started Lupron for 2.5 yrs. Maintained <0.1 PSA. Went off Lupron &
after 1.5 yrs. (T rose to 240). 1 mon. later PSA rose to 0.4. Axumin Scan showed lesion, only on T-ll. Had it CyberKniffed.
3 mons. later (T rose to 330), PSA shot to 7.3, mets through out skeleton, big one trying to get to spinal cord on T-4. Went back on Lupron & added Apalutamide & Xgeva. After 3 mon. PSA 0.3, T down to 42. Will have PSA & T tested next week.
I am a GS 9 (4+5), so my cancer may be more aggressive than yours, but I would advise you to be very cautious.
I wish I had stayed on Lupron because my SE's were minimal, except my wife thought I was getting more "grumpy". Any time I want to make her feel bad, I remind her of this! JUST KIDDING!
🤣
Interesting but I'm not sure what this really means. I mean you can't just stop Lupron but my idea is maybe you can take it less often. You more or less stopped for 4 months. Sounds like you should have been testing each month during the period of 4 months of not taking Lupron and maybe when PSA hit 1 or 2 you should have had another shot. The real problem is Lupron will stop working eventually. I am trying to see what I can do to prolong its effectiveness.
Yes be very cautious is correct advice. I'm not sure what that should be given Lupron will stop doing its thing soon enough.
I stopped for 1.5 yrs. and monitored every 6 months. The increase in T by 30% was the trigger, I think?
I misread first time... so you stopped for 1.5 yrs plus 4 months. Who knows when the Mets developed -maybe during the 1.5 yrs even with PSA < .4...... But sure the PSA going to 7.3 was a bad sign that mets were going to be found.
Seriously though it almost looks like Lupron occasionally (every 3 mon?) during that 1.5yrs+4 mo might have been OK as oppose to continuously. Maybe I'm taking away the wrong lesson!
I receiving 6 month Lupron injections, for 2.5 years and then none for 1.5 years before my PSA went to 0.4. I had a scan and it showed on a lesion on the lamina (side bone) of the T-11, nothing else. I was diagnosed Oligometastic (<5 lesions) and had it zapped by CyberKnife! 3 months, later had PSA drawn and it was 7.3. Immediately had the PET PSMA Scan, which just became available, and showed lesions on T-4, T-8 and numerous small lesions throughout my skeleton. RO wanted to zap the T-4. But Immediately went back on Lupron, Erleada and Xgeva & the T-4 lesion shrunk enough that my MO overruled my RO. I am now at 0,3 & hopefully below 0.1. Will find out next week.
Is Lupron hurting you? Is that why you want off it? Otherwise stay the course on it.
Mainly it will stop working soon enough and I'll be left with I don't know what. LearnAll's reply is what I am thinking about. Cycling/testing and trying to prevent the castration resistance. When you think about it Lupron as a medicine, even accepting its side effects, is really a lousy product. It's just a delay. If I cycle and that turns out to be bad, how much more time am I loosing by trying to do better than what I perceive as a loosing game anyway? It may prolong the effectiveness of Lupron.
Secondly, I find myself forgetting names that I should not forget much more frequently and I really hate that.
The memory part hurts I know. As to time of effectiveness: I was on Eligard 6 month shot, poor version of Lupron, and it failed. Started Lupron again and it worked a few months then psa went up to 1.8. Now on Nubeqa and monthly Lupron and psa is undetectable, <0.02. Been that way over a year. T is <5 ng/dL.
Diagnosed G9 in 2015, IGRT, HDR, 24 months Lupron, 18 months good then Eligard. Now 74 and exercise at gym 5-6 days a week and doing well.
Thanks, so 7 years and doing well with a G9 basically on SOC. Nice to know. Besides the drug regiment is there any other advice here to keeping the disease at bay?
There is big individual difference in response to ADT and its T lowering effect. Some men achieve less than 10 T just with Lupron alone. Others need both Lupron and Abiraterone to reach less than 20 T level. Both Lupron/Firmagon and Abiraterone does the same thing..i.e. knocking your T down. However they work by different mechanisms.. Lupron works on Brain whereas Abiraterone works locally by stopping production of T by blocking an enzyme CYP17A.
I've been on Lupron alone for past 3.5+ years. PSA on 6/22 was 0.66, T was undetectable, less than 10. Of course, I live blood test to blood test, scan to scan, but I guess we all do.
Thanks and so if my T is less than 3 maybe I can use less Lupron. That is what it goes to when I get a shot and test 1 month later - at least for now.
You know Dave..I do not use Lupron at all for last 2 1/2 years . My T is 3 just (three) with Abiraterone 250 mg a day with fatty dinner.
The goal is achieve total t as low as possible..ideally less than 10... How you achieve is not important.
I should ask my doctor about Abiraterone. I'm guessing it is something one uses after Lupron becomes less effective?
What’s your motive for ‘skipping’ shots? Are you seeking to further raise your testosterone?
1) I want to prolong Lupron and not go castration resistant 2) I want to not be forgetting names and not experience cognitive decline 3) I am really just trying to optimize, I think it will last longer if I let my cancer feed on T just enough so it doesn't mutate. I'm willing to be told if that is not a valid strategy. - thanks
That is one of the more controversial areas, that's all I will say.
The cognitive decline is real, but it can be mitigated with a lot of exercise and challenging brain work of your choosing, even games.
Forgetting names may be unavoidable, having as much to do with age as anything else
😀
Dave, have you researched the term “micro-metastasis” and discussed with your medical oncologist? Given your Gleason 8 and resulting metastatic disease, it is surely taking place.
I am 75 and had Stage 4 PCa with Mets to T3 and L2 in early 2004. I underwent a six month clinical trial of rigorous chemotherapy with hormone therapy and my mets were resolved. The aim was to tackle the micro-metastasis - unseen cancer cells traveling through my vascular and lymphatic systems looking for a place to colonize and reproduce. Although my PSA was undetectable and testosterone was under 5, I stayed with my 3 month injections of either Lupron or Eligard until February 2010. At which time my Professor and research medical oncologist convinced me to stop to find out based on study where I stood. I am still undetectable without any treatment for PCa.
I remember the day that he told me to not second guess my primary treatment in 2003 of brachytherapy and 25 sessions of IMRT as it was too late upon original DX of PCa. Then he explained micro-metastasis to me. BTW, it’s the explanation as to why there is a large rate of primary treatment - regardless of which primary treatment one undertakes.
I have zero experience with the treatments that have been developed since 2004, however, they were always in my guy’s arsenal as they were developed. My point in posting is to relate to you as it is very doubtful that you are not smarter than your treating medical oncologist. It’s fine to be a guinea pig for research, but don’t jack around with something that you are ill equipped in terms of knowledge and skills of your treating physician regardless of which country they practice. In your case keep taking the Lupron injections until that time that your physician says, ok let’s take a break and see what’s going on my best advice is to kill the little bastards before they overwhelm your body.
I wish you success in your treatment plan.
Gourd Dancer
Dave78717 in reply to
I like your story. I think you have very good doctors. I'm less confident in mine. Chemo, Brachytherapy and 25 sessions of IMRT plus Lupron the way you did it, probably to wipe out the micro metacizies sounds that it worked out awesomely. It looks like your PCa was pretty bad given the mets. Chemo done early is not generally done as far as I know anymore.
Did you have an RP done too?
If my doctors said we are going to do all of that to really wack it I might be on board with it. Right now I am also trying to get IMRT but I am uncertain of the insurance angle. If I do get IMRT I might stick with the Lupron afterwards really strongly.
I'm not sure what you are saying regarding micrometacies. I know that is a true problem but I don't know that Lupron intermittently is not as effective it Lupron monthly. Lupron after such strong primary treatment might have done the micro-stuff in.
I am thinking Lupron every 60 days instead of 30 and seeing what that does. Maybe what you are saying is I need better primary treatment.
I appreciate your reply
in reply to Dave78717
No RP. My primary treatment failed.. my two RPs had a handle with several scans and CT scans, plus monthly PSA. In a year when PSA was 32.4 and scans revealed Mets to T3 & L2, on their recommendation, I went straight to a clinical trial of chemotherapy with It was my Research Professor Medical Oncologist who introduced me to the term micro-metastasis. Told me that I did not matter which primary treatment I had under gone, it was too late. The only way that I am aware of killing these unseen little bastards is through systemic treatment...... they are in the lymphatic and vascular systems - is through chemotherapy, then starving with Lupron/Eligard..... six and a half years for me.
So for me, I am a proponent of early chemo and Lupron. My first Lupron injection was the day that I had Mets confirmed on @ scan when PSA was 32.4. And I always had three month injections....
GD
I switched from Lupron to estradiol patches because I was tired of feeling like hell plus estradiol is better on your bones and heart. See my profile.
Nice to see how you've managed for almost 10 years. Are you doing pretty well?
Thanks for your reply
Except for incontinence, yes. Having AUS surgery on 7/25.
Is the incontinence from the RP in 2013 or from radiation or did it just gradually occur? Good luck with the surgery!
It’s mostly from radiation which is known to cause incontinence years later. No one tells you this but I guess it’s part of the “ treatment “ process. It’s the worst side effect I’ve had by far. Pca is a scourge on men. Plus of course shrinkage of penis and loss of libido . So you give up sex , pee in ur pants otherwise Pca is great stuff. At least I’m alive.
I “time-dosed” Lupron by taking a monthly shot every five weeks and T stayed <12. Once I went seven weeks, and T popped over 12.
Sounds like a plan. Keep T below a number. T at 12 does not sound bad. How long have you been "time-dosing"? - thanks
I've been on Lupron for a little over a year, on an every three-month schedule. My PSA as of April 2022 is <0/01 ug/L, and my testosterone is <0.5 nmol/L. I'm currently in remission. For all the downsides of Lupron, I wouldn't dream of taking a break from it. Downsides for sure, but I'm still alive. 
Dave78717 in reply to
Are you doing anything else? Another primary treatment?
I mean the problem isn't that Lupron doesn't work, especially if you have only done this a year so far. The problem is it eventually doesn't work. Remission is declared when you stop all treatments and disease does not show itself. Did your doctor actually call it remission?
If you are not doing anything else, I am wondering why? I am 60 perhaps at a certain age Lurpon alone is considered good and perhaps you have a less aggressive version of PCa. Good Luck
Thanks for your reply
in reply to Dave78717
Lupron is the only treatment I'm getting at this time.
My MO called it remission. In his words, "It means the cancer is under control for now. It's not spreading." He acknowledged the possibility of recurrence.
My understanding is that treatment can - and perhaps should - continue when I'm in remission.
By the way, I'm 74 years old. Is that "a certain age"?
Dave78717 in reply to
I read your history, regardless, probably yes at 74 other treatments' side effects are not worth- the perhaps - increasing of life span. I mean some of the side effects are potential decreased lifespan.
It looks like you did a fair amount of stuff in the past. I also did HIFU. Probably there are other drug treatments if Lupron stops working working for you. Its helpful to see "your journey"
Thanks so much for your reply.
Of course you should continue taking Lupron. FWIW, I take it every 3 months.
3 months changed to 6 months.........for us ugly people..... I was told that the hospital staff can only deal with us "uglies" twice a year.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/12/2022 12:11 PM DST
I got same from mine when was switched to 4 mos eligard....now i only have to see you 3 times a year....
Alright you convinced me......I'll ask the doc for once a year............
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/12/2022 2:35 PM DST
You relly were told we don't like seeing you that often? I would change docs.
Uglies??? What do they mean by that? Serious question need answer. Change hospital staff! Monthly is the best altho 3 months good.
I think they mean my ex-wife............(Beauty is skin deep, ugly is to the bone)......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/16/2022 2:07 PM DST
john
Suprised the Dr does not give you a “take home, do it yourself” shot to help out the hospital staff. Lol
My MO kept me on the 3 mos Eligard since she wants PSA test every 3 mos anyway that way she can change things up if needed right after PSA test results are ready. Usually have to wait about an hour to get PSA numbers back to her.
Well I do give myself a monthly DRE (one finger only - no second opinion)....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 01/31/2023 9:30 PM EST
That your PSA fairly quickly comes back up to 0.4 again from 0.2 suggests that the castrate T is not “killing” the PC to a very high degree, but is mostly suppressing it. Continuing Lupron or similar will inevitably lead to castrate resistance. So will intermittent ADT, such as you are doing. So IMO one must add the difference in QOL that the intermittent May add. The only way to find out is to try it (test it in yourself and monitor effects and results). Intermittent has been shown to be “not inferior “ to continuous.With your very low PSA levels and good response to resuming Lupron. Trying intermittent ADT at this stage seems very unlikely to be of significant harm for you. Perhaps with even longer breaks.
Should have periodic PSMA scans such as every six months to make sure there is no radiographic progression that is not being reflected in PSA levels.
Sounds like sound advice. and Yes PSA is not a measure of progression so I have to test.
Is this opinion based on something you know more about than others? Are you also a health care practitioner of some kind?
As I try and "crowd-source" my treatment plan, I am trying to see where ideas and info truly originates.
Thanks for your reply!
I research (read) the relevant medical research on APC to the degree I am able to locate the best studies. Much of it I find out from other like-minded (and opposite minded!) here on HU.I place a high value on QOL and am. It too afraid to go add non SOC to my treatment plans, which ever evolve. So I am an advocate for IADT as long as it is monitored. For that matter, I am on intermittent high testosterone treatments myself, alternating with periods of ADT (modified BAT).
I am here on HU just as a reasonably well informed APC, not as a professional. Not prescribing, just suggesting options to consider and discuss with one’s doctors. And I am certainly far from being infallible.
That should be I am not too afraid to add non SOC etc.
Thanks again.
Do you want to say more about APC? That is your gene mutation?.....
I dove into what BAT was from your post. Sounds fairly remarkable. I don't qualify for it right now but it is very good to know about it for when/if that time comes.
I'd like to know are you doing modified BAT within a study? It seem like that treatment is only recently being made available.
I am BRCA2 positive. Apparently they say BAT is more effective in those cases.
APC if referencing Advanced Prostate Cancer in general, not a gene mutation. I have not had an accessible site for biopsy for gene sequencing yet. And PSA too low to make cfDNA liquid biopsy reliable.
I have done Intermittent therapy for 2 years. I can feel the energy, confidence and strength when my T skyrockets in off period. When I am jumping, hopping, laughing and dancing vigorously..my wife comments " OK.. So seems like your T is back." I realize T is elixir of life for a man. God, please give lot of T to all men here on HU.
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