I know at least one man who "failed" ADT (Lupron) and was thought to be "castration resistant". In fact however, when he got his testosterone measured it was 87 when the target number for his ADT treatment was 20. So he wasn't castration resistant at all. His problem was that the Lupron wasn't doing the job of bringing down his T level. When he added Casodex his PSA came down again.
I recommend that everyone on ADT get their testosterone level tested along with their PSA. Make sure that the drugs you're taking are doing what you want them to do.
Alan
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AlanMeyer
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I'm surprised to hear that isn't standard procedure. At Kaiser Hospital in Oakland, ever since my diagnosis 14 years ago, I get a T test every time I get a PSA test.
Do you see a private med onc or what? I asked my Kaiser med onc about getting DHT testing & he asked what clinical trial findings establish a survival benefit in doing that. Anything you could tell me or find out for me about why not providing DHT is wrong would be very gratefully appreciated!
I thought that DHT was created inside the prostate cell by 5a-reductase, on (free) testosterone. Would a blood test for DHT reflect what is going on within the cell?
As pure speculation, based on no knowledge whatsoever, I wouldn't be surprised if the people who recommend monitoring DHT aren't trying to correlate DHT levels inside and outside the cell, but rather with signs (e.g., PSA) of the magnitude of prostate cancer. All other things being equal, if blood level PSA goes up when blood level DHT goes up, and PSA goes down when DHT goes down, then it would appear to be desirable to hold DHT down. PSA might well go up even when DHT is low, which might mean that the cancer is not, or is no longer, dependent on higher levels of DHT. But, following your idea, it could also mean that there is too much DHT inside the tumor cells even though it's low in the blood.
Thanks, Motosue. My doctor never told me about PSA tests. My next doctor, who said my DRE was abnormal, was aghast. My first PSA score was 60.7. I was 61.
A friend sent me an article recommending against eating meat, fowl & dairy.
RP, rising PSA in a few months. Gleason 3+4. EBRP with Lupron, same.
I saw an integrative medicine oncologist, Donald Abrams, who recommended avoiding sugar (except in fruit) & stuff like bread that quickly converts to sugar. He recommended taking certain supplements. He had me see an acupunturist-herbalist. She recommended alternating acupuncture 1 week with massage the other week, to stimulate the immune system. She also recommended personalized prescription Chinese herbs. I follow this advice pretty closely, most of the time.
I've been on continuous Lupron for 10 years. They weren't recommending any early chemo back then. When Lupron wasn't enough, Casodex was added until it failed. And now Zytiga for over 2 1/2 years. It took my PSA down from 160 to 13. After it started going up again, I started taking Metformin, which caused a dip for a little while. Now it's up to 47, & I'm taking the Zytiga closer to meals, with continued liver function monitoring, of course, every 30 days.
A really bad thing happened in Sep. 2011: a spinal cord compression from a PCa tumor. Had to learn to walk again. Wheelchair to walker to crutches used as walking sticks to walking unaided, but not as well as before. For 3 different reasons, I wrecked a knee, then another (no replacements), & then an ankle. I lost my 3-point shot & much of my game.
That's my story. If I had it to do over, I'd try Patrick O'Shea's method. But I didn't know of any alternative to what Kaiser uro's & med onc's suggested, other than adding the integrative medicine stuff, which Kaiser isn't paying for.
One of my oncologist is Dr. Mark Scholtz in California and I did go to see Dr. Charles Myers from Virginia. I haven't seen Dr. Myers for a couple of years however. Perhaps when my PSA starts to move up I'll make an appointment with him again.
Do you measure your glucose levels (or A1C). Diabetes should be prevented. No sugar, no simple carbs, but I feel that metfomin should be advocated. The Stampede trial, arm K, is now testing this, but it may be years before results from that arm are available. Also statins to reduce cholesterol blood levels. Cholesterol is a raw material in the synthesis of DHT and testosterone within the prostate cell itself.
Long term Lupron has its own side-effects, as you probably know.
Alan, you don't mention what his PSA was when his T was at 87.
Lupron failed me too. But, I only had my current PSA's, which were doubling quickly. Zytiga was added, my PSA dropped from 29 to 1.1 almost overnight. I have my T checked twice a year, and always at 0. And, that's about exactly how I feel.
The case I'm referring to happened over a decade ago. I don't remember what the fellow's PSA level was but I do know that his PSA had begun to rise in spite of being on continuous Lupron, and I also know that he was still alive and with his cancer under control when I last heard from him a few months ago.
I don't know if this is related or not, but the guy was about 6 feet 6 and near 300 pounds. I wondered if the standard Lupron dose was insufficient for such a big man.
yes, I agree, I must ask my doctor to take my testosterone tested every time I check my PSA. Sometimes I have to push him to do it cause he says, "Nah you don't need to do it". I wonder which test is more sensitive as a sign that the cancer is coming back - the Testosterone level or PSA. Hmmmmmm . Perhaps they both might move up the same time. I don't know. I'll ask my doctor today when I go in and see him from his experience.
Sadly, there remain multiple levels of dis-concern, no casodex, no avodart, no T measure, DHT? Huh? Admittedly, it doesn't or won't matter in many cases, but the others???? And they get po'd when we question them.
Switching: I continue to have a problem with my urologist making me come back on another day for my Lupron shot. Please, anyone out there, on Lupron, who is forced to make second visits, please let me know and why if you know. Yes, I'm planning to move on.
It probably is caused by the insurance company or Medicare not paying for the shot if it is too soon (by their standards) after the previous injection. There are little, circular, paper calculators that the insurance companies distribute to the doctors offices that are used by the staff to determine when to schedule injections of Lupron. The research may say every x weeks, but the insurance companies say every y months. Over time the slight difference in the number of days in a month adds up to a shift off of the doctor visit schedule of every x weeks and saves the insurance companies money.
In my experience, trying to insist on the research standard x weeks was a losing battle as the scheduler called in the business manager and the "bouncer" male nurse to intimidate us verbally and physically. My guess is that they didn't want to lose their kick-back.
GAD, thanks for response. Yes, that was the first thing 'we' looked at. NOT it. The problem seemed to be that the doc's office failed to add a defining term to the code based on the response to a formal Appeal I filed with Medicare, and that was in under 30 days! I copied the doc, but no change. Interestingly, they do not charge extra for the two visits, the indicated doctor never makes an appearance, but does not charge. Now, if this urology group wants to do Lupron shots on specific days, that's their call, but don't blame Medicare. AND when it extends my 84 day shot to 97, it's bad medicine imo, and when you lie to me, that destroys credibility-totally. An option might be to schedule the shot at 91 days (common std), and do the office visit blessing the shot (or not) a few days earlier. But that would take intelligence and initiative on the part of the Group's doctors and billing people--so it ain't gonna happen!
Rich, I don't think so. Lupron doesn't require preauthorization. I appealed, Medicare explained nicely what doc has to do to get paid for shot (put a subcode). But it's just not happening. Apparently there are other issues with this urology monopoly that might fall under the cover of "insurance". Still haven't found another doc out of the group that I'm happy with.
It looks like I'm behind the times here and a lot of men are being routinely tested for testosterone and, even better, DHT (dihydrotestosterone). That's good news. I think that anyone on ADT who is not getting these tests done should ask for them.
My understanding is that castrate T levels used to be thought of as < 50 ng/dl but are now thought to be <20ng/dl, while Zytiga and Firmagon can get levels even lower. I don't know what the target levels for DHT are. Perhaps Patrick can post that?
On Zytiga, Presdinsone, and Lupron today; October 2017 just Lupron PSA 29.7 Testosterone 27; January, 2018 , after adding Zytiga in November, 2017, PSA 7.1, but Testoserone inched up from 27 to 49. PSA going down, but testosterone going up. What do you think?
I'm amazed that your T level is so high on Zytiga.
The numbers don't make sense to me. Your treatment is androgen deprivation. Zytiga and Lupron work by lowering T levels. However in your case it appears that the Zytiga is working (PSA went down) and simultaneously not working (T went up.) I don't understand how that's possible. I'm wondering if the testing was screwed up. I'd talk to the doctor about another test for both PSA and T. I most suspect that the T test is wrong, not the PSA, because we would expect the PSA to go down on Zytiga but not expect the T to go up.
Was the blood drawn after you had been on Zytiga for a while, or was it drawn the day you got the prescription? That would mean that your T response to Zytiga wasn't measured. I think re-doing the tests makes sense.
If the T level is still high on a second test, you may need to discuss one of the T blocker drugs such as Casodex, or the more powerful Xtandi. They work very differently from either Lupron or Zytiga.
On Zytiga, Presdinsone, and Lupron today; October 2017 just Lupron PSA 29.7 Testosterone 27; January, 2018 , after adding Zytiga in November, 2017, PSA 7.1, but Testoserone inched up from 27 to 49. PSA going down, but testosterone going up.
Testosterone increased on 3 Tests, can,t be lab error. My MO said don,t be concerned, for the psa is decreasing; however, I am concerned. Casodex in the past turned to feed the PCa cells, that is why it was discontued.
I don't want to take Xtandi too soon. The blood draw was after I had been on Zytiga for 2 months.
It seems to me that your case is very unusual. Although your doctor may be right that the PSA change is very good news, it would be nice to have an explanation of why your testosterone is increasing. If someone knew why this was happening they might have better ideas about your treatment.
I suggest getting a second opinion from someone who does PCa research, i.e., a scientist, not just a doctor. It's possible that even the scientists won't know what's going on. After all, our knowledge of cancer is far from complete. Still, it's possible that someone has heard of a case like yours before and can explain what's happening. To find a scientist/doctor the place to go is to one of the university teaching/research hospitals. Here is a link to help you find one.
If you find someone to consult, ask lots of questions:
Why do you think my T is going up in spite of the Zytiga?
Why do you think my PSA is going down, in spite of the rise of T?
If you can't suggest answers to those questions, can you suggest a possible way to find them, maybe someone I should write to or call, or some tests you can perform?
Snuffy Myers is my med-onc for the time being and he is very supportive of the independent lab industry. Its only logical that if you are on a 5a-reductase inhibitor [reduces DHT] then you want to know if it is working in order to be at the right dosage. But monthly is probably overkill once the target level [Myers=<5] has been reached. While on Avodart mine was usually around 2.
Dr.Scholu is really great and you won't regret it. Nowadays I just have phone consultations with him so I don't have to fly up to Marina Del Ray to see him. I just send him all my reports that I get done that he or my local oncologist wants done. Believe me , you'll be in good if not the best hands possible. By the way, I hope Chuck is doing great. I haven't seen any of his posts here. Take care and the best of health to you.
Thanks very much for the comments, Wilfred. I haven't heard from Chuck. Last I knew, he was taking care of his wife & was having health problems himself. I sure wish him all the best.
I know this is an old post, but I'd like to comment based on what I've been reading. Research has been done that shows the lower your T levels, the longer you go to CRPC. I'm not sure about the other hormones, but I read that Lupron does not guarantee testosterone levels of less than 50. You really need to be consistently below 20 if you want the best chance for the longest time to resistance. They say the first 6 months is the most important time. I know it's permanent and less popular, but surgical castration gives you consistent levels of T around 15.
It's my understanding that the more advanced ADT drugs - Xtandi, Zytiga, and Firmagon, all get testosterone levels well below 20, but also have more bothersome side effects than Lupron/Zoladex/Eligard. Doctors often take the view that they'll give the patient the drug that's easier to take and, if/when it fails, move on to something stronger. However, as you said, overall survival suffers.
My understanding is Firmagon is an LHRH antagonist which does reduce testosterone levels, but Xtandi and Zytiga don't reduce the testosterone produced by the testicles. The last 2 are generally used as second line ADT treatments for CRPC patients. Unless you are surgically castrated, you still need the LHRH antagonist Firmagon or an LHRH agonist such as Lupron to keep T levels low. Here's where I got the information.
Perhaps to clarify? Xtandi blocks Androgen Receptors, regardless of where or how much residual Testosterone androgen has already been made and may still be available, from whatever source, including, of course, the testicles. Zytiga, as a CYP17 blocker, actually does interfere with the production of any residual androgen/Testosterone, itself, regardless of the source, e.g. from the Adrenal Glands, or elsewhere.
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Its only logical that if you are on a 5a-reductase inhibitor [reduces DHT] then you want to know if it is working in order to be at the right dosage. But monthly is probably overkill once the target level [Myers=<5] has been reached. While on Avodart mine was usually around 2. 
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