Are there any good outcomes without using ADT ( hormone therapy)? I delayed it for a couple of years with bad results. My history --
2021: Age 78. PSA was 7.79, Gleason 4+3=7. Small lesion in prostate, with perineural invasion. Had 20 IMRT for prostate. No ADT. 2022: PSA dropped to nadir 0.93. 2023: Age 81. PSA rose to 5.71. PSMA-PET showed small lesion remaining in prostate and new lesion in iliac node. Had 30 IMRT for iliac node and pelvis. PSA dropped to 2.95 but rose to 3.78. PSMA-PET showed lesion in prostate much larger, lesion in iliac node much smaller, but a new lesion in an abdominal node. Began ADT Orgovyx 3 weeks ago with no side effects, and plan on adding Erleada next month.
I think I still have cancer in the prostate and spread to nodes because I did not start ADT from the beginning. After prostate radiation, the oncologist explained that hormone therapy could make quality of life unpleasant and was not always indicated for my low stage and high age. Given a choice, I said no, and his notes say "that is reasonable at age 78 years old."
He referred me back to my urologist for follow up, who later referred me to his radiation oncologist when I needed pelvic node radiation, and that doctor said that adding the whole pelvis might make ADT unnecessary. Given that choice again, I took the wide radiation and further delayed ADT. Only in the face of continued PSA rise and metastasis did I demand and was finally prescribed ADT.
The urologist said the initial prostate radiation had failed because I might be "radio-resistant". But that is a rare untestable condition and I think it was lack of ADT that allowed cancer to continue.
I now think ADT is a necessary complement to radiation or prostectomy, should be standard regardless of age, and declining it should be discouraged.
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vintage42
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Would you try early chemotherapy 6 cycles? You could always stop at any time if you don't like it.
For me it was easier than continuous erleada. After chemotherapy you could try PARP inhibitor olaparib. I am not saying to do it but that could be an option if you need it after chemotherapy.
I had early chemotherapy docetaxel 75mg/m2 and now I am on monthly Firmagon injections for 5.5 years now.
I don't know if I am a candidate for the urotoday article's early upfront chemo. I am not early, and have not had ADT yet, and the article is 2017. Maybe some updates since then.
I will discuss chemo at appointments with the oncologist and urologist in a couple of weeks. I am thinking docetaxel Taxotere chemo might be too much if added to ADT Orgovyx and ARI Erleada, or even if used in place of Erleada. I was disappointed to hear that Erleada was hard to take.
I didn't take earleada, but now days Nubeqa plus chemotherapy plus orgovyx is a way to go. As I said I was happy that I was given the option of early chemotherapy. You can always stop the chemotherapy. You should start immediately because you are on orgovyx and it is deeply castrating you. You don't have to wait 2 months. That article from Fred Saad is the best about chemotherapy. Don't worry that it is from 2017.
After chemotherapy it is optional to continue with Nubeqa. It is called triple therapy.
Therefore do orgovyx plus six cycles of Docetaxel chemotherapy (you could stop early if you don't like it). Continue with Nubeqa until you can. As I said I had good quality of life until now on monthly Firmagon injections alone.
"Firmagon injections are the same as orgovyx what you are getting now."
Firmagon (degarelix) is a shot, a testosterone antagonist, blocks its production. Orgovix (relugolix) is a pill, a testosterone reception inhibitor, blocks its reception.
I am getting Firmagon injections and you could stay with your pills but I personally prefer monthly injections because I am paranoid and don't really like oral delivery of drugs. You are running into risk to miss your dose plus other potential problems. It is up to you, but that is me.
Same is because it almost immediately lowers the testosterone. Therefore you are having castrate levels and you can start your early chemotherapy now. You don't have to wait for 2 months to get to the point of castrate levels of testosterone. That is the same.
You are right. My brain fog. Firmagon (degarelix) shots and Orgovyx (relugolix) pills are both production blockers. I am taking Orogovyx now and might add the reception inhibitor darolutamide (Nubequa).
If you don't have early chemotherapy than you are running into risk that if you don't tolerate Nubeqa than you can't start chemotherapy later, but you could stop early chemotherapy anytime and you could also stop Darolutamide (Nubeqa) once you had the early chemotherapy. The best is a triple therapy Firmagon injections or orgovyx plus early chemotherapy plus Nubeqa.
You are still young. You could live easily until 97 or more. (I don't want to limit you.)
Some people tolerate well Docetaxel chemotherapy. If you don't tolerate you could stop anytime. The problem is that Apalutamide could be also toxic if you have to use it for years. You should really find a medical oncologist as soon as possible. I never had Apalutamide, Darolutamide, Enzalutamide or Abiraterone treatment with Prednisone. I just know that I am happy that I had an early chemotherapy. I can't even remember it was 5 years ago.
I am 81 and have a medical oncologist. He is conservative, did not push ADT, is hesitant about ARIs now, and I haven not asked about chemo yet. My urologist is the more aggressive one, prescribed ADT and wants to add the ARI and Prolia for bones.
I agree. I had chemo in 2017/18, together with ADT and surgery in 4/2018. I did some on/off with ADT, had spot radiation (2020) and prostate bed/pelvic (2021) followed by two years ADT. PSA is undetectable. If this continues, I’ll stop ADT to see if I’m healed.
Why can't you change from Nubeqa (which is darolutimide) to Taxotere (docetaxel) chemo?
I did ask for Nubeqa (darolutimide) first, but the urologist said there was some reason to use Erleada (apalutamide) instead. I will ask again before he prescribes anything.
Denosumab is Prolix, semi-annual injections against bone loss.
Or do you have multiple bone Mets? If you start denosumab and you have bone Mets it will prevent them from healing. Be very careful what you are doing as if you have a fracture than denosumab would prevent a healing of the fracture and it would also prevent healing of your Mets. Most important is that you don't have Falls. That is why Nubeqa is better for you than Apalutamide. Nubeqa doesn't cross the blood brain barrier.
I have no bone mets. I see that Nubeqa (darolutimide) does not cross the barrier and Erleada (apalutamide) does, and will discuss with the urologist and medical oncologist.
You could ask for second opinion. That is sometimes a way to go.
I didn't have any problem getting DEXA scans. My only problem is to get it from the same DEXA scan operator. Last time professor Freud was the operator but now I wish to get the scan again by her as the results could differ from operator to operator.
A DEXA scan would be for baseline at my start of Orgovyx. The urologist says a DEXA scan now will show no bone loss and might cause his prescription for Prolia to be denied. I think I will ask for a baseline DEXA but say no to Prolia.
You should get early chemotherapy. If you miss this window of opportunity to get it just now you can't get it later. Chemotherapy is only effective on the rapidly dividing cancer cells. Do you understand that?
You can always stop chemotherapy. Erleada is also toxic and you should be on it long term. It is easier to try now chemotherapy than later.
I am really happy that I had early chemotherapy I can't even remember it anymore. I made a decision about early chemotherapy by realising that my median life expectancy is about 2 to 3 years with my distant Mets in my neck. I realised that with chemotherapy I could extend my life around one year. I said to my GP I am going to have a chemotherapy in order to live three years instead of two.
Here is the information about the statistics, therefore you could decide to yourself. If you don't have distant Mets than maybe radiation will be enough, but I am really not a doctor just recognised that early chemotherapy is a way to go and lots of people done it. Ask for a second opinion and think about that you could stop anytime with the chemotherapy.
The article said that everyone with metastatic prostate cancer should get early chemotherapy. That is my interpretation. Just don't miss this opportunity.
I was lucky enough that professor Izard and a board of urologists recommended that tu me and my MO and we acted quickly and I am still here. I didn't have any Abiraterone, Enzalutamide, Apalutamide or Darolutamide until now. I believe that the initial toxicity of the chemotherapy is less than an ongoing toxicity from let say Nubeqa.
I just started to get Bicalutamide mainly because I don't want to push my cancer so hard that it converts into neuroendocrine differentiation. 15% of people on Enzalutamide convert their prostate cancer into neuroendocrine version. You can always stop chemotherapy but if you miss the opportunity for early chemotherapy now than later you will have to stay with Nubeqa even if you have side effects. I believe that I was just lucky to get the early chemotherapy recommended to me. You have to be sometimes lucky in life. That helps. My luck was related to professor Izard and the board of urologists in my hospital.
Are you suggesting that I first add the chemo Taxotere (docetaxel) to the ADT Orgovyx (relugolix) ADT that I am taking now. And take the Taxotere for 15 weeks before begining the ARI Nubeqa (darolutamide)?
I think it might be unlikely that my medical oncologist or urologist will recommend chemo at my age, but I can ask.
You should start immediately with the chemotherapy. If you don't like it just stop it. They should really follow you properly. I was happy with that in my hospital. They even gave me a special VIP pass to the emergency department of my hospital plus I moved close to my hospital so I can walk in 5 minutes to the emergency department of my hospital. I didn't need that visit but it was comforting that I live close with the special pass to the emergency department.
That is why you need a hospital. I live in Darlinghurst only 5 minutes from my local hospital.
If I would live in my property I would be 30 minutes drive from the major hospital. That would be too far away for my taste. Therefore now I live in a city and that is ok.
Fred Saad is fairly open about the possibility of peripheral neuropathy and recommends to immediately stop the treatment at the slightest symptoms. You can read that in that link from 2017.
The other possibility is Jevtana for you. Docetaxel chemotherapy is better as it is effecting the bone marrow less than Jevtana, but Jevtana is usually better tolerated at 20mg per m2 dose and it is less likely to cause peripheral neuropathy. Jevtana will probably be my next chemotherapy as it is crossing the blood brain barrier and would be effective if the cancer gets into my brain.
Not sure about chemo. It is no longer early for me, the hospital is not so close, it sounds a bit drastic at age 81, and I doubt my doctors will recommend it except as a last resort.
You should ask them. I did ask for it and now I realised that lots of people had early chemotherapy without problems. The problem was only if they didn't stop after the first sign of peripheral neuropathy.
In the chemotherapy section of my hospital said to me if I don't tolerate the chemo with the normal 3 weekly cycle that they could give me a reduced dose weekly. Just find out if it is still an option to you. I was ok with the 3 weekly cycle and full dose 75mg per m2.
I didn't take a daily Prednisone with my chemotherapy although it was prescribed to me. I had of course the dexamethasone as usual. I decided not to take a daily Prednisone as I found a Finnish study without a use of prednisolone. The Finland people don't like the use of corticosteroid. Fred Saad said that prednisolone is optional during the early chemotherapy. I am not a doctor but they should advise you about what is the best for you. Scandinavians probably don't like it as it can make your bones osteoporotic plus could bring other health problems. My MO was ok that I didn't take a daily Prednisone.
I believe that early means after you are deeply castrated. It means after you first started ADT. I was actually diagnosed in April 2018 with the help of the CT scan of my spine and with the subsequent nuclear medicine bone scan.
It took a further more than 2 months until I started ADT and that time I didn't know that I could start chemotherapy almost immediately because I was deeply castrated on degarelix injections (Firmagon injections).
But I couldn't start earlier as I had to get a biopsy plus I had to wait for a 4 PSMA pet scans every 2 weeks. I was part of the (ADT and me) research. Therefore I also didn't get the early chemotherapy in a full sense of meaning.
I would wait with Nubeqa 18 weeks from the start of chemotherapy. In order to avoid side effects and you may don't need it.
My first MO said that some people live long on ADT alone but was still ok when we pushed with the early chemotherapy. He was also recommending intermittent ADT to me but I really didn't want to experiment with intermittent ADT considering that I have Mets even in my neck and that could spread to my brain.
Regarding your biopsy. That is great that your Gleason score is 3+4 but you should always be conservative and understand that until they don't take out your prostate and slice it you don't really know your real Gleason score. Therefore better if you don't really to much on that information.
If you wish to avoid falls you should really get Nubeqa, plus Nubeqa is the most effective and the best. It was designed and developed by the Finnish company Orion Pharma. But get that chemotherapy first and you may don't even need Nubeqa, or you could stop it without running into risk that your cancer progress. After chemotherapy you could even get PARP inhibitors if you need them. After Nubeqa alone PARP inhibitors may not be effective except if you have BRCA mutations.
Nubeqa is also my medication of choice as a future weapon, if required.
Not adding ADT in the first opportunity may or may not have made a difference. There is really no way to tell. It could have just delayed the rise. Which in hindsight, if you had known, you may have opted for.
Not using ADT might have delayed PSA the rises that occurred after the radiations? Might have stopped the continued growth of the lesion in the prostate, and the spread to nodes in pelvis and abdomen? Those conclusions seem unusual; are they supported by any documentation?
Definitely might have and definitely might not have. There are plenty that use ADT concurrent with radiation that subsequently turn out to be metastatic.
But you are right, studies show it has better survival rates.
Looks like originally there was not one tumor in more than half, but one in each half. The 2021 MRI said: "Right posterolateral mid prostate peripheral zone lesion PI-RADS category 4, and Left posterior lateral mid prostate lesion PI-RADS category 3." I don't see the a TNM classification.
However, a PSMA-PET scan this month said: "Continued high activity in the left side of the prostate suggesting active tumor, appearing larger than on the prior PET scan and now extending across the midline posteriorly." So now there is one tumor in more than half.
You seem to have educated yourself, albeit a bit late, producing some good hindsight. But essentially that’s all it is.
Without question ADT would have made your radiation more effective, which is why it’s standard of care. The problem is its sometimes deleterious effects on overall health in several key areas.
All of these effects can be greatly lessened or eliminated with cardiovascular and strength training exercise, but most men are in poor physical condition going in, and beginning exercise when already old is a considerable challenge-made far more so by ADT.
Unfortunately folklore about the hideous side effects of ADT combined with the complaints of patients on it abound. This has caused many doctors to start recommending against it (as a few of yours have), especially to older men deemed to have little quality time remaining.
In actuality many men in their 70’s and especially 80’s have naturally (age induced) low testosterone, thus making side effects of T suppression less onerous.
In addition (especially since the critical importance of exercise for older adults has gained more attention) more older men are staying fit and strong longer, making them better candidates for ADT than they would have been previously.
No one can know if the addition of ADT would have resulted in curative therapy in your case, but it is definitely possible. Your first shot is always your best one, but none of that matters now. Use of it going forward can still be quite helpful if you can tolerate it well.
Now that Orgovyx is available, ADT can be stopped with much faster return of testosterone than injections, should it be considered intolerable
I wish doctors would attempt to ascertain patients’ likelihood of tolerating ADT before making blanket statements about age affecting it. Biological age is a far greater factor than chronological.
Still, it’s true that without the intervention of caloric restriction and especially exercise, ADT typically induces fat gain, muscle loss, slowed metabolism, cognitive impairment, hot flashes, and exacerbates any existing co morbidities. It can be nasty stuff.
It sure works. Gleason 8/9 here. 96 weeks of Zoladex. 39 EBRT. Told curative not possible due to spread to seminal vesicles and bladder. He changed his diet, exercised daily and avoids booze. He is late 70’s and fitter than his 50’s. ADT can be a bitch but it works!
You said, "... many men in their 70’s and especially 80’s have naturally (age induced) low testosterone, thus making side effects of T suppression less onerous... I wish doctors would attempt to ascertain patients’ likelihood of tolerating ADT before making blanket statements about age affecting it...."
Good points. My testosterone was 160 before starting Orgovyx a month ago, which may be why I don't feel side effects. And if I had been told it was so easy, I would have taken it from the start.
My understanding is that ADT makes cancer in the prostate more susceptible to radiation beforehand, and lowers the PSA to suppress the spread of the cancer after both radiation and surgery. It is often used for Gleason 3+4=7 favorable risk.
You’re correct. While it is also correct that overall survival numbers are better with high risk use of ADT, nothing is more overrated than ‘overall survival’, strange as that may sound to some.
This because as we all know by now, modern medicine keeps getting better at extending life but not the quality of it, enabling people to outlive their good years by an ever wider margin. Even their relatively good years.
A big part of the value of ADT (in those that tolerate it well) is that it helps delay time to metastasis, progression, recurrence.
to vintage42 from vintage36 (87 years old)...... This is my Psa when I stopped Casodex and replaced it with Nubeqa 0n 04/03/2023. (I'm still on 3 month Lupron injection).
P.S.A. 1.24 as of 04/03/23 Started Nubeqa
P.S.A. 1.49 as of 06/27/23
P.S.A. 1.26 as of 08/15/23
P.S.A. 0.80 as of 11/08/23
P.S.A. 0.72 as of 12/18/23 *
* This 0.72 is the lowest Pca since it was 0.71 back on 03/21/16
Could you ask for second opinion from an MO? I don't know where do you live but Tanya Dorff or Sartor are excellent. Tanya Dorff works in City of Hope in California, LA.
That trial says biweekly Jetvana (cabazitaxel) is as safe as the standard triweekly dosing. Dosing with what?
And that "All patients received docetaxel and at least 1 novel androgen receptor-targeted agent." I wonder if word "previously" is missing, or if cabazitaxel was added to all that.
Did the trial use Jetvana (cabazitaxel) to replace both Taxotere (docetaxel) and a receptor inhibitor like Nubequ (darolutamide)?
It is just an example that older people could also get chemotherapy. Honestly I am not a doctor, but I have ideas. If you can contact some more knowledgeable people and be persistent. As I said I was offered by my hospital chemotherapy section a weekly Docetaxel for my early chemotherapy if I experience problems. It was more than 5 years ago. Maybe since than people more even more how to reduce the toxicity of the chemotherapy. Someone treated with chemotherapy said to me that they switched him to weekly chemotherapy after he experienced toxicity. It was for another cancer but the principal remain that there are possibilities just have to ask. I am sure that by asking the appropriate doctors with experience in chemotherapy or at least the chemotherapy section of the hospital they will know much more than me.
When you were told that ADT would make QOL unpleasant the doctor was maybe not wrong but he was setting you up to expect life to suck. He should not have said that because he put you on the road you are now on. There are thing that an individual can do to offset the potential, not guaranteed, effects of ADT. If told this you most likely wuld be on a different path today.
Cannot change your past but you can improve your future with a Positive Attitude and treatments.
Yes, my medical oncologist prioritized QOL, and presented "hormone" therapy (which would have been Lupron) as an option whose benefits were not explained, but whose side effects might diminish QOL in what he saw as the limited life expectancy of a 78-year old. So he called my choice "reasonable".
But here I am at 81 with no health issues except uncontrolled cancer, finally starting Orgovix from my urologist, with no side effects. And the aggressive urologist is going to add an ARI receptor inhibitor, while the conservative oncologist is cautioning about its QOL.
My husband is 76 and at the time of diagnosis 9 months ago, his T level was 350. He has done ADT for 6 months now Lupron, then Orgovyx, then Eligard. He had no side effects on the 1 month Lupron or the Orgovyx, other than slight fatigue. The Eligard side effects were definitely stronger, but at that time he was also undergoing radiation, RT, so who can say which is what? He ended RT two weeks ago and is now very tired, lost some weight and is much quieter, but we are working together to get him back to where he was, pre-diagnosis.
None, I repeat, none of the medical professionals my husband visited (he got 4 different 'second opinions') even hinted at foregoing ADT in order to improve his QOL. I think my husband would have liked to have been given that option, as he didn't want to see his nether parts dwindle away, but alas! his feet were held to the flamr, and as he says, he 'took his ADT like a man'.
Are you a frail and sickly 81, or are you in excellent health, otherwise? I think that is where the QOL comes into play.
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