Just had a psa test, still undetected. Next lupron injection is April, three months this time. My oncologist wants me on lupron 2 years. One year down. Guess there will be some time before I will know if radiation to pelvic area was effective.
Still undetected : Just had a psa test... - Advanced Prostate...
Still undetected
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Howard53545
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Hi Howard! Congrats! I too have been on Lupron for 1 year, Zytiga for 9 months, 44 ebrt treatments and continue to be undetectable. Keep it up! Rich
wishing you the best of luck - I'm a little ahead of you - I passed my two years back in October - and have gone off lupron and zytiga in January - i've been ND since my radiation - so hopefully that is a good sign - second year is a breeze - other than the crying, laughing and the man boobs.
There is no evidence that 24 months ADT is superior to 18 in the adjuvant setting, and so no one should go a minute longer that 18 months, not only because of the misery but because of the other morbidities.
Yes, there is. He is N1.
Sorry if I got that wrong. Do you mind posting a link to the study?
in reply to Horse12888
I believe TA is correct. 18 months is for N0M0.
N1M0 should get 24 months ADT + 2nd line ADT.
I'm on eligard and zytiga for 24 months.
Karmaji in reply to
A bit vague..I am staged T3B Gl 8 N0M1...Does anybody with 2 metastases and 6-7 metastasis is same ...a number M1...
Strange simplification... That is how we are put in a number
For my case docs come up with at least 3 year ADT based on some empirical data applied to all with oligo ....no consideration of overall health status....
I feel we have just scorched earth therapy for cancer...age-old...ADT 80 years old
Why we do not go for metabolic vision as Cancer is simply a genetic mishap...
Good cells become rogue from our point of view but rogue cells are having fun.
Most important is to consider each individual set up...mind body
I do not capture when a therapy extends 3 months, docs clap...confused with this view...
Same for clinical studies...60 % success is considered success for all...forget about 40 %
We need individual adapted therapy....
Life is always joyful.... It is simply mind conditioning....
I am healthy I am crippled I am young I am old I have terminal cancer...I am rich poor master slave or anything else ----- a mind game
life goes on....happily
Now 83 and was dx at 82 when surgery was not recommended because of age and life expectancy. Seems like it is just a way to minimize insurance claims.
Go Deal ------ Rock county WI
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 01/23/2021 6:26 PM EST
There is no consensus re 18 months vs 24 of ADT in this setting. Not so long ago N1 guys used to be given ADT as permanent monotherapy and told to go enjoy what remains. No more, obviously. I believe 2 and 3 year ADT regimens will be looked at a lot more closely in this broad area known as locally advanced, oligometastatic etc.
On the one hand Horse 12888 saying ‘no one should go a minute longer than 18 months, not only because of the misery but the other morbidities’ is hyperbole and not true for many.
On the other hand, lots of docs blithely insist on 2 and even 3 years (if not indefinitely). And sometimes it is clearly necessary. But both the disease and patients are too heterogeneous to know in so many cases.
The study that Tall Allen cites says nothing about efficacy of ADT duration-what am I missing?
Both my MO at John’s Hopkins (who recently released me from ADT after 1 year) and a 2nd opinion MO say there is no data supporting 2 years over 18 months in my setting. I am N1 but had a lot of adjunctive treatment right after RP, not just radiation, so perhaps this figures into my being released after a year.
But what is increasingly figuring in also is the QOL issue, which doctors are belatedly paying more attention to. For while Horse 12888’s ‘misery and other morbidities’ claim may not be true for all, it’s undoubtedly nasty stuff, and CAN be extremely debilitating and eventually dangerous for a lot of guys.
I’m taking a risk, my doctors know this, I know this. I am choosing to find out sooner than later if I will need more LHRH drugs like Eligard or not, or more treatment at all. If I do there is always the Eligard, or the new pill form coming out. Or perhaps something else-there are other options.
I handled ADT well but it’s hard on every man. Im into enjoying what little remains of my ‘youth’ (I’m a very fit 65). I’m also not invested in longevity in and of itself.
I believe too many doctors still push the long term LHRH drugs even when patients report extreme difficulty with it.
Patients need to be told much more about the specific side effects of ADT, their consequences and how they MUST mitigate them with diet and exercise upfront, as well as the importance of getting regular dexa scans and knowing about there are various medicines available for the MANY sides they should ask for if need be.
ADT works, but it ages you too. Every effort must be taken to minimize this, no matter how long you’re on it.
in reply to London441
Within the medical community you have this tug of war going on between what's good for the patient and whats going to keep them from being sued. This is especially true in the US where anyone can be sued for anything. We know this to be true in the US because of the countless stories published on doctors ordering test so they will not be accused of failing to do their jobs.
Until tort reform is passed that protects the doctors from meritless litigation, expect to be on 2-3 years of ADT for pT3N1M0 pca
London441 in reply to
Perhaps XPO1. But then why was I released at 1 year of a 2 year clinical trial ADT protocol without asking? Am I the exception that proves the rule? I don’t think so.
My RO, MO and 2nd opinion MO, in the course of our conversations, all made reference to either endorsing or not pushing back on some of their patients who either want to stop ADT early or refuse it outright.
in reply to London441
You can always stop treatment because that is your right. A clinical trial is a different animal all together...you are agreeing to undergo a treatment protocol.I bet you signed a bunch of legal papers prior to being accepted.
My comments are targeted to those of us under SOC.
London441 in reply to
Well my clinical trial protocol stipulated 2 years ADT....and again, I did not request to stop treatment. I only told the truth about my experience with the side effects, and I was hardly dramatic. As I said, I tolerated it very well.
I think maybe some docs are more sympathetic to ED and libido issues than the other side effects, which ironically were not my primary concern.
in reply to London441
Were there certain gates, for lack of better term, that your clinical trial had set up. There are always endpoints that need to be met. Again. When you participate in a clinical trial you are beholden to their decisions except bailing...I still think that is possible.
London441 in reply to
Well all I know is my MO said that of the 26 men in the trial a good number of them stopped ADT early as agreed to by him and the patients together.
In a similar boat T3N1M0, last Lupron shot July, zytiga until Oct, provided all things remain the same. Then we see what happens, my MO said he thinks we have it beat and that I will never get testerone back. Not hanging on it like it is for sure but that was a yay-doh moment.
He says you have it ‘beat’ and that you’ll never get your testosterone back? What do you mean by that?
In the course of our discussion he said he thought I have beat this cancer, his words and I asked him to clarify, which he did. I then discussed the return of testosterone and he said it will never return and I don't want it to. I can say he is not at a center of excellence nor does he specialize in PC. Was it irresponsible for him to say so, maybe. I can say I am not putting a lot of weight on either opinion at this time and will continue to live and enjoy one day at a time.
Well that’s interesting. Because if ‘beating it’ means keeping your testosterone suppressed at will, with or without drugs indefinitely, that’s probably a fantasy.
Or maybe he means that you’re cured and your T won’t return with or without suppression, in which case he’s psychic.
What was your T at baseline?
He meant the latter and I agree both statements were opinions that he would need to be a psychic to be correct about. Baseline for T was 450.
Interesting indeed. When you said ‘it won’t return and I don’t want it to’, do you mean he said it won’t return- and you yourself do not want it to? If that was true for me I’d get an orchiectomy.
If you actually don’t want it to return, is it due to concerns that it would feed cancer far outweigh possible benefit? If so this is an unusual sentiment but I understand.
He said "I" (meaning me) don't want it to come back because it might bring back the cancer. In retrospect it was a pretty bizarre visit. Everything he said was the opposite of what I think I have learned on this forum. I have been looking forward to my T returning which is why I brought it up in the conversation. I was thinking I would feel like superman when it did, right in time for cyclocross season. The truth is it may or may not and the cancer may or may not re-emerge. Only time will tell. If it is evident I will be on ADT the rest of my life a orchiectomy may be in the cards. One day at a time.
I’m right there with you, I play sports and ADT made me slower, weaker and stupider.
We all know about the good stuff return of T after ADT might bring, but we can’t know is how much will come back and if it will wake residual cancer from its slumber. Return to baseline T sounds great, but with or without it we’re just getting old anyway.
It sure sounds like a bizarre dr visit for sure. I’ve never heard of any doctor basically telling a patient to give up any hope of testosterone again-like he’s doing them a favor!
There’s definitely some guys on this forum who, in your shoes, would either punch him in the face for that directive or want to haha.
I feel the same-I want to know what it’s like to have T again. I was 700 at diagnosis but I can’t really remember how it felt, other than a strong sex drive.
Cancer control comes first for me too-by a mile. If I have to get back on the sauce so be it. But I may strive for intermittent if it’s practical.
I never thought of punching him but I have wondered about him since day one. I know he is sticking to SOC/NCCN Guidelines and won't ever be an out of the box thinker. I normally go to Dr visits feeling he won't have anything new to say or offer so when this happened it pretty much just went in one ear and out the other. This forum has me feeling pretty confident what plans will be regardless of what happens next. What happens after that is another matter but one day at a time 🙂
One day at a time is our motto yes sir.
I won’t offer advice directly, but if I were you I’d find a good genitourinary oncologist pronto. You have a great attitude, you deserve a great doctor.
Thanks , unfortunately the way my insurance works I would have to pay for a different Dr at a better hospital out of pocket. None at my. current hospital specialize in just PC that I am aware of. I did that for an original 2nd opinion at a center of excellence and not sure it was worth the money in the end, but I was glad to have second opinion on the pathology. When/if the time comes to address additional treatment after failure of my initial treatment I may go back to that hospital for another opinion. That being said I doubt they will diverge from the NCCN Guildelines so I will have to, as my mother would say, cross that bridge when I come to it.
I am in a similar boat, undetectable with ADT for over 9-months now. Did radiation when the PSA was already undetectable and nothing was visible on scans. I have decided to stop ADT, after 13-months of treatment, the next Lupron shot was due this week. On discussion with my OC, he said that 2-years is what trial results guided treatment says. However, on asking he replied that is no proof that the radiation that I did in August 2020 is still doing anything useful in my body, and the only way to find out what the current situation inside is to stop ADT. My radiation oncologist said that if now your PSA rises, we will do a PSMA scan and spot radiate anything we missed in the last radiation session, I had several lymph nodes involved. When I did the radiation, the radiation OC went pretty aggressive, saying we are doing this with "curative intent", we shall find out in the next few months if it worked. I will be doing a PSA and testosterone test every 6-weeks. Everyone has to make their own decisions, like my doc said, I cannot recommend it but I will support your decision.
Great luck to you! Let us know how it goes.
Good for you.
Good luck..I was on Lupron shots for almost 3.5 years....10 years later my psa is still in the normal range.....102 when i got diagnosed. 38 radiation treatments
I was 49 when diagnosed last Feb 2020 with psa 8 gleason 7 (3+4) based on 1.5T Mri contained. Had open RP last March PT3bN0m0 after pathology. 10 weeks later psa .011 after a month .055 had adjuvant RT which ended last Aug 2020. While doing RT my MO started me on bicalutamide 50 mg which according to her will last up to 2 years at least. My psa as of Dec 2020 <.003. I was just wondering if bicalutamide 50g is ok as an adt. Btw im from Philippines.
Howard53545, is it metastasized?d Do you have tumors?
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