PSA numbers for start/stop Intermittent ADT?

At this point I feel Intermittent ADT3 is my attack of choice. But, duration is vague to me. Appreciate input from those experienced with intermittent. Like; for how long "On" cycles? (Meyers book was 12 months, I had 3 months and was below .1. It seems like below .0something would be a time to stop). Also, with PSA rising, what number is "start ADT" trigger?

Thanks,

Craig

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  • Craig, it is all over the place---PSA, when to start, when to stop. I can tell you for sure that Docs. all disagree with each other. First, one should know their Pathology cold. Their Pathology can be a predictor. In my case my Pathology is so rare and pretty aggressive, that we often discuss timing, and cannot conclude any perfect time. I am at undetectable about 7 months at 12 months, my Doc. is concerned, if I want to go IADT. And I am also, knowing how my particular Cancer operates, and what Gene Mutations I have. There are Docs. that say 12 months , 18 months , and 24 months, when having a very low PSA, or being undetectable. Some Say if you are undetectable for a couple of years---stay on your ADT.

    Some Docs. say to not go to intermittent, until you are at undetectable, others say PSA should be under 0.1, I have heard about under 0.2--but in these measurable cases--stability for long duration's at a 0.1 or 0.2 has been demonstrated. Age is another factor.

    Duration is dependent in what happens to your PSA. Many Cycles are for 3 months on and 3 months off. I know one man personally with advanced aggressive--who after 4 years went off, and 6 years later he is still off with a 0.3 PSA. But he uses a ton of supplements like I do.

    Duration is certainly dependent on what your PSA does. If you start at 0.1 and 30 days later you are 5--well you have a problem. So a doubling agreement with your doctor, over a chosen time, will usually be the time to go back on.

    In my personal opinion worth about a teaspoon of spit--I would not consider IADT, until I have been undetectable for 18 months. Other simpler Pathologies, no less than a year. If having a measurable PSA, I would want to find out why, and find a way to get it to Zero. Because it is that 0.1, probably micro metastases' that will delight in there being no ADT about, and start stampeding. Now that is a good part of the deal. They start running and we whack them back hard, and in so doing the theory is you kill some more Pca cells.

    This what my Doc. Says==== It is my choice, even though he would like 1] me to not come off and go as long as I can with undetectability, or 2] wait at least 2 years, before going IADT. WE are also discussing High T and ADT[Bat], and coming off and going high T. So in my case again, I cannot determine yet when to pull the trigger, if I do. But it is my choice, because my Doctor says My research, and understanding is at a high level about this disease--and he will not argue with me, but do as I ask for. He also said at age 73 I have the moral right to choose my option. And if I mess up, my Doc. and others will be there to rescue me.

    I have no idea if the above helped---but as i started know your pathology and how it operates. That is the first key.

    Nalakrats

  • Naladrats

    I am beginning to realize how important knowing one's specific cancer is. "Knowing your pathology" includes; PSA, Gleason, Pathology numbers. What else?

    Genetic testing (I haven't researched this yet)?

    Thanks for replies,

    Craig

  • It is not understanding Pathology numbers, the report on your Pathology, your Doctor has. Get a copy. It is not about numbers it is when studying your Pathology--to understand how it spreads--is it a big as to angiogenesis spread--does it react slowly to ADT. How is it against radiation. You can find out all about your Pathology on the Web.

    Genetic Testing, determines what Gene Mutations you have and what drugs are available once you failed typical early treatment that have some effect against your type of cancer. What info--go to Foundation One.com--get tel#. and call they have excellent knowledgeable people--that can guide you and answer questions.

    Nalakrats

  • Much Thanks,

    Craig

  • Nalakrats, does your discussion mainly apply to those who have had their prostate surgically removed? My prostate is still there after HIFU so I would expect a non-zero PSA when it gets tested in a few months. The cancer was confined to one side but it wasn't a focal treatment -- much of the prostate, but probably not all, was zapped. I'm inclined to go off ADT (eligard) and see what my PSA does. I am 66.

  • My discussion does apply mostly to those who have had their Prostates removed--but should apply to all---any cancer left by what ever method was first employed--is still in body--and is treated by the same principles. So intermittent ADT--I feel should be the same for all---except for my harping on Pathologies--different Pathologies=different outcomes--PSA is only a measuring tool--I know some that cycle between 30 and zero--via another process, but still cycling--allowing Pca--to rise, and then fall.

    Nalakrats

  • So...the doc's pathology report is in my Medical Records? I have them, all 93 pages.

  • Yes there should be a Pathology report from the Biopsy--and if you had your prostate removed there would be a final one.

    In it it tells you what kind of cancer you had by scientific name--then you can go to Web, look it up and study it--find out all about it.

    Nalakrats

  • Craig,

    IADT since 2008, I could not find any reliable determined number. My MD and I decided to base the decision to return to Casodex & Lupron if PSA, taken quarterly, doubled in a year and in 2016 it did. So in February after five years off the medication of any kind and after PSA and 10 days of Casodex I will get the quarterly Lupron shot. (sigh)

    Best of the Holidays to all,

    Pete

  • Craig,

    This is Dr. Myers in 2010:

    askdrmyers.wordpress.com/20...

    In one post, Myers says that with a short ADT phase, the PSA bounces right back. I had the impression from that post that he used a 12 month minimum. But in a later post on durable remission, he talked about patients hopefully being ready for the off-phase within 12 months.

    Myers looks for an off-phase that is much longer than the on-phase - because one generally only gets 2 or 3 cycles before CRPC. Importantly, there are the factors that he feels contributes to a long off-phase. You should look back through his archive for the 4(?) posts on durable remission.

    -Patrick

  • Thank you, pjoshea13

    I am now "lost" in Dr Myers videos. Lots of information to research and think about.

    Craig

  • Patrick I understand Meyers is a leading researcher but do you have other names of leading researchers that I might look up as well ? much appreciated

  • For the purpose of clarification Dr. Meyer's is not a researcher. He is a clinical.

    A lot of people think that he has more knowledge than anyone else, he does have excellent ideas, but not all doctors agree. Often his conclusions are made without controlled studies, just his clinical experience. There is certainly validity to his observations, but that is what they are observatilns, not level 1 evidence.

    Please refrain from jumping on me about this post. I know that many people have unflappable trust in him. I am just raising a point that should be considered. He is a great doctor and his thoughts are often very helpful and need to be considered. Like any other doctor, second opinions and questioning will serve us best in our quest to beat this disease.

    Joel

  • Ty joel. that's why I asked. I know the key players in my own diseases and some of have controversial ideas but with my stuff I know of numerous key clinicians and surgeons and researchers and its just an observation that Dr Meyers is mentioned most, and I'm looking to strike a balance in my researcher so I'd live the names of other well renowned Dr's in the field. just so I can have balanced research . Ty for clarification xoxo

  • After having my prostate removed, I was told I had a "particularly aggressive" form of cancer. I came in at Gleason 8 (my biopsies were 7 to 9). When they put me on Lupron I was at 0.19 (I was 6.2 before surgery.) After a year of Lupron at <0.01 my uro-oncologist recommended IADT. I had read a fair amount about it, and was willing to try it. After 3 months, I was up to 2.3, which I felt was ok. After 8 months, I hit 10.2. My primary oncologist (I have other issues he was watching) went ballistic. That is a double double over 3 months. So he immediately did 2 things. Ordered a CT scan for the next day, and called the uro-oncologist to get me back on something ASAP. The CT scan found 4 mets in lymph nodes near where the prostate had been. I had had no signs of any mets before this. They put me on Trelstar which dropped my PSA back to <0.01. My last reading, 3 years later, is <0.1.

    So, Is Nalacrats says, each person will be different. Each oncologist is going to be different. If you opt for it, watch carefully. Go back on ADT as soon as you or your oncologist thinks it might be time. For me, I will never do it again. It made things worse for me way too quickly. Your mileage WILL vary. Good luck!

  • Wise words of caution, Beermaker. Thank you,

    Craig

  • So many variables to consider. Gleason, PSA when you start ADT, PSA you consider "undetectable" (0.1, 0.05, etc.), how long til you reach nadir, and as I just realized after 15 yrs of IADT, how long do you continue at nadir. I had gotten into the "habit" of quitting Lupron (and Casodex AND Avodart) pretty much when I nadired, but my new doc suggested 12 mo (or was it 9 mo) AT nadir! In fact, I have been near nadir (0.1-0.05) for 1-2 yrs, so I wasn't too worried. But my psa does start back up as soon as I stop ADT, so I may be more patient the next time around.

  • herb1- Are you saying your new doc wants you to use "time" to determine when

    to go off ADT (not just a very low PSA)?

    Thanks,

    Craig

  • Craig, I don't really think so; it's just that he's totally "programmed" and the program says "...9 mo at nadir". But he's also the guy who just tried to schedule my next 3 mo Lupron for 105 days after my last! No, I'm not happy with him and am looking elsewhere.

    He's also part of the group that required us to come back on a second day for Lupron ...because their billing dept didn't play the game right!

  • I sometimes feel like I should have a bar-code tattooed on my forehead so the medical profession can "process" me more efficiently. The one time I had ADT, (during radiation- 3 months), I caught the nurse trying to give me a 6 month injection of Lupron, instead of 3 months (I researched the dose before hand). I wouldn't let her touch me. She left in a huff, came back all apologies, with the correct dose.

    Regards,

    Craig

  • Craig, Frightening, isn't it? I get mad when the uro's nurse or receptionist calls to report my psa: "Mr. S, your psa is under 4, it's 3.1 [or whatever], so you're in great shape". Never bothers to check that I'm on ADT, and on Avodart and my PSA should be approaching <0.1! I actually have this as a note to tell uro to tell his staff: "just give the number, don't practice medicine!"

  • Yes, it's the "Bar Code" response. One size fits all.

    Regards,

    Craig

  • I thought about the dose options for eligard. I got the six month shot. I should have insisted on the three month shot. I had surgery two months ago and now I have to wait another two months for the eligard to wear off to see where I am it ... and to hopefully get some life back in my little buddy.

  • In most cases it will take a while after the shot wears off. Just because the time elapsed it will still take a period of time for the testosterone to return so that you will be able to get a handle on your situation.

    Rely on a testosterone level before you make any conclusions or decisions.

    Joel

  • Herb,

    I know, you know the 3 month injection is really 84 days.

    Rich

  • Rich, yes, I know, but not sure my doc does!!! His attitude is "it won't hurt to extend a bit". I would have to go into full attack mode to fight with him and, frankly, after 16 yrs, it's not worth it and it really would be impossible to prove that it would make a difference for me!! The get-tough approach has got to be something along the line of suing for malpractice.

    Herb

  • If I could try and bring together the many excellent ideas expressed in this thread it would be that there are no rules, better recommendations and of course no specific hooks to hang our hats on when we make this type of decision.

    Decisions to go on and off is a very individual issue that requires each of us to have the best possible information about our own specific cancer.

    Not mentioned in the prior discussion is our individual ability to tolerate risk. Our level for the need of personal risk aversion, which is very individual, should also be factored into the decision.

    Even with the same numbers, some of us will be able to better tolerate a higher PSA return number than others.

    I also want to point out another issue not discussed in this thread. Prostate cancer is a very heterogenous disease and it is constantly making new mutations. This means that the disease we have today is not necessarily going to be the disease we had that we had yesterday.

    This adds the huge unknown, what is our cancer today? We can only know what it was when it was diagnosed or when we had it sequenced.

    This information may be totally valid, or it might not really describe our current disease.

    I believe that this confounding issue speaks directly to the risk tolerance that each of us have.

    Currently, When I go back onto ADT my PSA drops like a rock in water. It drops to the undectable within 30 days and stays there.

    Each time I go back on I have shrunk the length of time on therapy from 14 months on to the last period to only 8 months.

    If and when it drops more slowly or doesn't go as low I will extend my on treatment period.

    Since my doubling time has become longer over time, I operate on the assumption that my cancer today is less aggressive than it was 10 years ago (better mutations). I very carefully monitor my PSA doubling time, especially the last three tests, to try and understand the current state of my cancer's aggressiveness.

    Joel

  • Joel, my dad has been on Lupron 5 months and 3 cycles of Taxotere . his psa from 75 at start is still at 16 and tumors only shrunk slightly . it seems most people have a more rapid fall on psa . can you speak to this issue at all, as I'm a bit worried the doctors are not doing enough.

  • I would like to see him do better than a PSA of 16. He should be on either Zytiga or Xtandi along with Lupron and Casodex

    Joel

  • I agree, I want to see what it is next time as I really think he should ask his doctor but he's being told the numbers are fine and by comparison that's bot what I see. his doctor is all about doing one drug at a time to know if it is working. and I'm like let's kill this and decide when things are more level.

  • I would recommend that you get a second opinion from a major medical center from a medical oncologist who specializes in the treatment of advanced prostate cancer.

    You didn't mention whether or not he has had a testosterone test. Please make sure that he is castrate.

    Again, I would ask the doctor as well as the second opinion doctor about starting either Zytiga or Xtandi.

    Joel

  • Ty, no so far they have not stressed anything about testosterone but I will ask him again to request . Ty Joel so much

  • Don't forget the second opinion.

    Joel

  • Thank you. Very encouraging, Joe. It seems true, there are no rules. But, I am narrowing down the treatment I prefer (thanks much to this forum). Still much to do and learn.

    Craig

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