Hi- a couple of questions. Is it rare for ADT to work for more than about two years? I’d be interested in those who progressed beyond that and were still androgen sensitive. I’m at about 1 year, 2 months.
Also, according to recent studies I’ve read, combining Zytiga with apalutimide seems to prolong life, at least in those no longer androgen sensitive. Wondering about giving those drugs together with Lupron while still androgen sensitive.
Hello, I have been on ADT for eight years. Mostly Zoladex (goserelin) but also one year on Firmagon (degarelix). My oncologist told me that I should stay on the ADT train for life. You can add drugs to the train and you can take drugs off the train but you stay on the train. In my case I have added Xtandi (enzalutamide) to the train. When PCa escapes the prostate it is not homogenous, it is heterogenous. In other words, when the horses have escaped the barn, there are black horses, brown horses, white horses and every colour in between. It might appear ADT is not working when in fact it is working fine against some of your cancer cells. One thing for sure, if you have advanced prostate cancer and you get off the ADT train, you are right back to square one. Hope that helps!
Why not just remove the testicles? Or is it produced somewhere else also?
Quite a few men here have opted for that surgery. It’s called orchiectomy
If one is on permanent ADT, orchiectomy is a very reasonable choice. Costs about the same as one Lupron shot. It's permanent, with no more shots, and no concerns about side effects from Lupron and its relatives.
I paid for my orchiectomy I the first three months.
Hello, Testosterone also produced in the adrenal glands.
I'm assuming that Ecl875 is referring to classic ADT, which is castration therapy. All of the studies that I read when first diagnosed, if they mentioned ADT failure, stated that for most men it occurs within 18-24 months.
Outliers can be on ADT for decades & I have often wondered if they needed to be on it at all.
-Patrick
I should mention that those papers were referring to classic ADT as monotherapy, which used to be common. There were not a lot of options 17 years ago.
We've seen anecdotal accounts from guy on this website that start out with aggressive disease and decide not to get any treatment. A guy posted about a month ago that he did nothing and after 12 years his PSA is in the thousands, and now he is going full throttle with different treatments. If he had been on the ADT the entire time, would he be better off right now, or not? Interesting question. I find GP24's link below to be very interesting. ascopubs.org/doi/10.1200/JC...
Enough to make a difference?
Good analogy.
There are several factors which determine how long Lupron will work. One is if testosterone gets below 0.7 nmol/l. This means the drug is very effective. It also depends how much tumor volume you have. If you had surgery or radiation and no detectable metastases, it will last longer. If both are the case, ADT may work up to ten years.
ascopubs.org/doi/10.1200/JC...
.7? I was told that anything below 10 was good. What % of people get below .7?
Probably not many!
After 3 months on Eligard my T was reported to be 0.6, which my Oncologist advised was an “excellent initial response“ to the drug.,
The above article says, "A recent review found that up to 12.5% of patients do not reach the 1.7 nmol/L (50 ng/dL) serum testosterone target, and up to 37.5% do not attain levels < 0.7 nmol/L (20 ng/dL). In a 3-year observational study, ... 6 months after start of LHRH analog, 39.7% had not achieved serum testosterone < 0.7 nmol/L, and 12.3% had not reached < 1.7 nmol/L. H... patients with elevations > 1.7 nmol/L seemed to benefit from further blockade of the androgen receptor with the addition of bicalutamide to LHRH agonist therapy".
Check the unit from lab reports. 0.7 mol/L converts to about 20ng/dL.
yep, I did the conversion a few days ago - 9 = .312 for me.
My last test I was <1
Why isn't this information more well known/advertised. None of the doctors mention any of this, nor do I think they even know these results from the study results you posted. This is very important info for everyone to know, at day one.
I was on casodex for 5 years, zytiga for 3 and 1/2 years and Xtandi for 4 years. ADT drugs will affect everyone differently.
is nmol/l the same as ng/dl? Ok - I just converted them and my nmol/l = 0.3120 So I think anything under 10 is good if using the ng/dl standard of measurement.
No, the study I cited shows that 0.7 is more effective than 1.0. Maybe you can look at this graph:
We were talking about different units of measurement - is nmol/l the same as ng/dl? Ok - I just converted them and my nmol/l = 0.3120 So I think anything under 10 is good if using the ng/dl standard of measurement.
I am .312 using your unit of measurement. I am 9 on my unit of measurement.
Your chart is amazing to me. It seems to indicate a much better chance of staying castration sensitive if below .7. This seems like news that everyone should be aware of. Maybe I'm reading it wrong. One question I have is, do people who have very low T in the first few years, usually start having higher T levels in years ~5-10? or does the castration resistance begin at some point even while the T is below ~.7?
The chart I posted is discussed in this presentation by Laurence Klotz:
grandroundsinurology.com/mi... He mentions the topic testosterone at the beginning of the second half of his presentation.
I do not know if testosterone rises during the course of an ADT therapy, I expect it to stay very much the same. Yes, resistance can begin at T below 0.7 nmol/l. But as Dr. Klotz presents, much later than if T is above that level. He presents a list of studies which report this result. Even report extended overall survival.
I think that most men on this site should be aware of this data to inform their treatment decisions. Some doctors recommend piling on several drugs very early on, telling the patient that ADT works about 2-3 years but if it's more likely to work 5-10 years in people with very low T, then they shouldn't be saying 2-3 years. QofL might suck for some guys if they pile on extra drugs right from jumpstreet.
Many studies mention that ADT works for 2-3 years but the ones I found do not provide a source for that. If they do, it is just an older study which again provides no proof. I think this estimate dates from the pre-PSA time when patients had bone pain from a lot of bone mets when they were diagnosed with PCa. Now ADT is used when there is a recurrence after radiation or salvage radiation. This is a different situation.
You should measure not only the PSA but also the testosterone level and make sure it gets below below 0.7 nmol/l. Dr. Klotz recommends to change drugs, if you do not achieve this level. If this does not help, you can add Abiraterone.
If you have bone mets, there are good studies now which show you should take Abiraterone or get a chemo.
good info. Your assessment sounds logical to me. Amazing that doctors dont adjust to this thinking. the other consideration is whether you see tumors or mets on bone in psma or axumin or on traditional CT scan. My doc says not to add Xtandi until he sees the mets on a traditional scan but some doctors say its better for OS to start taking xtandi etc before you can see on the traditional CT scans. My T level is .31, which is probably why PSA is still suppressed with ADT.
Please add a profile if you ask these kind of questions. One needs to know your situation to answer these. Here is what I gathered from your posts:
My situation is this: I'm 52 years old, athletic, diagnosed with PCx in May 2015, Gleason 4+3 and 4+4. Failed brachy/IMRT combo in late 2015, PSA doubling rate of 3 weeks during recent intermittent Lupron break. Started Lupron in august 2016. PSMA / PET shows small hot spot metastasis outside the prostate area (abdominal aorta lymph node and one other spot) CT scans and bone scans still clean. My psa went as low as 0.1 before I went on the intermittent Lupron holiday.
From the PSMA PET in 2016, it showed, "--18F-DCFBC PET/CT 7/26/16 shows nonspecific prostate bed uptake in left apex, one left PA node 7 mm and left aortoiliac node 8 mm. No bone mets.
Axumin scan in 2021: "there is a 5mm lymph node which shows mildly elevated tracer uptake." A second node 6mm shows elevated radiotracer uptake." "A third node 4mm is small and shows mildly elevated radiotracer activity. They are all suspicious for metastasis."
So you have lymph node mets but no bone mets. All the studies which tested to add a drug to ADT did so when bone mets where detected with a bone scan. The STAMPEDE investigator said: you can have any number of lymph node mets, this is not relevant. So I agree with your doctor not to add any drug while there are just lymph node mets. This avoids to become resistant to these drugs early.
You wrote: "My T level is .31, which is probably why PSA is still suppressed with ADT." ADT will always supress T. When you become resistant, the cancer learned to grow with a very low T level. But the T level does not rise, just the PSA value.
Yes, this is my info. I will make a note to add a background history to my profile. Traditional scans still have not shown any cancer, just suspicions on Axumin and PSMA/PET scans.
G, Where did you get that chart from? It doesn't have a source on it. I just want to know how big of a study/survey this was? My T level results I got back today are more than three times lower than they were when I was on Lupron (9 then vs <3 now). If my math calculations are correct then my T measured in nmol/l is .104, which is very low - less than 3 ng/dl. I've been using Orgovyx since February.
The chart is from this presentation at minute 18:22. I added the conversion to ng/ml.
grandroundsinurology.com/mi...
again, this chart is based on this study:
Correction, mine is <3.0 ng/dl
Thats a great number. How is your psa?
<0.01Undetectable
How long have you been dealing with your cancer? Do you take any other treatments or just ADT?
George, I was DXed July 2, 2018. I just updated my profile detailing my various treatments. Currently on Eligard, abiraterone/dexamethasone and have had my prostate and all mets zapped. Am considering docetaxel given the recent Peace-1 trial results. I also take a variety of supplements as well as 1000 mg metformin (off label).
Did you read/watch this info/links from Gp24? :
healthunlocked.com/api/redi...
again, this chart is based on this study:
healthunlocked.com/api/redi...
Yes, I’ve read these previously and just now reviewed.
No, not unusual at all. 3 years is a median - half do more than that. You didn't provide a profile so your question cannot be answered. It depends on your situation.
My husband just had his 6 month Lupron shot. He's in his 17th year continuously on Lupron. He is a Gleason 10 and stage IV metastasized into his tailbone and ribs. He's also had radiation for 7 weeks, Casodex for 3 years, and Zometa infusions. His urologist says he can't believe he's survived this long but his records don't lie! Naturally, all concerned are thrilled. During our last visit his urologist brought up possibly going off Lupron for a bit, but realized that if the psa started to rise, it might be tough getting it under control again. They tried adding a few months between his Lupron shot years ago. His psa and testosterone shot up and he went right back on his scheduled shots. We don't want to take a chance. He leads a pretty mostly normal life at 72. He has two Harley's that he rides daily.
Tall_Allen recently posted on the "Risks of BAT".
What a bless. 🙂
Wow, that kicks ass. I was going to ask if he has any adverse side effects by this time but if he's riding, I'm guessing that's a no. 
He's my hero, and he'd be even more of a hero if he stood on both Harleys when riding!
LOL! When I reread my reply I realized I made it sound like he rides both at once. The only side effect he's had over these 17 years and being 72 years old, he doesn't have the strength to ride the bigger Harleys so he sticks to Sportsters. That was hard for him to admit but he got practical real quick. I will also add that living first on San Juan Island, WA for 7 years and now Kauai for another 7 hasn't hurt! We're both retired since 2007 and have been lucky to lead a simple life after downsizing. Some have attributed his relatively stress free life to our lifestyle choices. Who knows. His doctors are thrilled considering his terrible start with this disease. Believe me, the doctors in 2004 were trying to prepare me for tragedy. We have no kids so we're quite close. We've never dwelled on his cancer.
I love hearing stories like this. Things aren't always gloom and doom and tragedy. It's important to maintain positivity and hope for decent longevity.
Is this a video with Chuck Norris? He lives up here on Kauai's north shore.
what has your husbands Testosterone level been over the years while on the lupron?
Free testosterone 0.9 and total testosterone 11. When he extended his time between Lupron shots by 2 months, it shot up to 200.
Those sound like good numbers. I cant remember the free T number that a study said was predictive of long term survival. I wish I could remember. I would bet that .9 is below that level.
My husband had a very shaky start. If you read my profile you'll see how awful his prognosis was in 2004.
I was on Zoladex for two years before it failed. I've added Zytiga and have been on it for 6 months. Working so far.
I have been on Zytiga for over 5 years, PSA been 0.1 for a long time , I am luckier than many .
Hi, I was on adt for 4 years before going on to Enzalutamide and I’m still responding to treatment now after 5 1/2 years.
5.5 total or 5.5 after the 4 years without enza?
Just over 4 years on prostap followed by a short trial on abiraterone which failed due to its effects on my liver then on to Enzalutamide for the last 6 months. There were a few gaps whilst I let my liver recover before moving on to Enzalutamide. I was diagnosed with advanced stage 4 November 2015.
OK, I hope the xtandi works for many years
I've been on Lupron only since 11/2018, still under 1 on PSA, next blood test 4/7. Never taken Zytiga or any other add-on to Lupron.
I started with radiation followed by Zoladex for a couple of years, then chemo followed by more than ten years on Lupron before adding Casodex for two years, then two years on Erleada and now five months on abiraterone. This coming September will be twenty one years since original diagnosis. I know I am the exception and tremendously blessed.
I am more than 2 years in on Zytiga and Lupron. Many side effects but PSA is < 1 still. I feel very fortunate.
My uncle has been on Lupron for 20 years. Intermittent.
I have been on ADT (Zoladex) since diagnosed in 2017. It’s was working great to keep PSA undetectable. Then I took a holiday and after 9 months PSA and testosterone came back. Currently back on my 3 month injections with the addition of daily bicalutamide.I was reading posts about guys having these ADT holidays and I thought why not me. I hated what the side effects were doing to me as I was 52 years old at diagnosis. Well I learned the hard way as I have metastatic prostate cancer and its ill advised to stop ADT. Hopefully I will get my PSA down as I was still castrate sensitive.
Diagnosed July 2018, age 55, PSA 103.0 so I am approaching 3 years. Gleason 9 with a few mets. ADT (Zoladex) continues to work for me. My PSA was slowly rising from a nadir of 0.17. When it reached 1.0 two months ago, my oncologist added bicalutamide which dropped the PSA to 0.23. Testosterone is <0.2 nmol/L. Hopefully this continues to work for a while longer. I'm feeling great except for the side effects.
Best of luck with your journey.
I don't see any information about maintaining the low T levels. What are the ramifications if one's T rises and stays above the various cutoff levels?
Greetings Ecl875 - give us more info...
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THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/30/2021 7:17 PM DST
I started on Zytiga in July 2020. My lowest PSA in Dec was 2.7. Now in March 2021 it has risen to 8.7. I have an aggressive PCA, my current question is whether to chase it with more higher power drugs ( which Are likely to fail rapidly) or to accept thevinevitable without more disruption from side effects, doctor/lab visits, etc. etc.
chase it. One of the more powerful drugs might have a good response to your type of cancer and it might work for a long time.
I have a limited amount of detailed information about my cancer, not because I don’t want to share it but because I chose what I felt were the important things to know and purposefully did not ask the oncologist to go into great detail or give me every written lab report. I did research and had extensive conversation with my oncologist about the course of treatment.
In short, in January of 2020 I was diagnosed with advanced prostate cancer. I had been having some mild back pain and a persistent cough. A CT scan revealed a tumor at T10, I believe adenocarcinoma. I was operated on to remove the tumor. It went well with very little post op pain and my back has felt almost normal since. My PSA, which I had not taken in years, was a whopping 1400! I was started immediately on Casodex and then Lupron. After a month or so, Zytiga plus prednisone was added.
It’s been over a year and I feel pretty healthy. And the effects of low testosterone have been minimal. I think I’ve had about all the erections I need for this life anyway. I can still hike and play tennis. My PSA, monitored every three months, went from 1400 to 11 to .1 to .03. I am doing strengthening exercises 3x a week on my Bowflex machine, also walking and indoor biking.
After the operation I had trouble urinating. I have a long history of prostate issues, and had laser treatment in the past. For the time being I am self catheterizing but not ruling out some procedure for the future.
My oncologist suggested a genetic work up which I think is a good idea.
I realize I omitted some crucial diagnostic information. The CT and MRI scans showed metastases in the spine, bones, lymph nodes and lungs. I hit the jackpot, it seems. I’m amazed that I feel so well, no pain at all, no cough so I guess the meds are working. Like everyone here, I’m just hoping to feel healthy for as long as I can.
I’ve been on and off Zoladex for 8 years. That combined with a round of docetaxel has kept my psa down to now 0.4 and slowly rising.
Adding abiraterone while still hormone sensitive was shown by two large trials (stampede and chaarted) to be effective.
.01 and two spots on psma test. 
NHS releases enzalutamide - questions
Questions
Questions on treatment?
