Further Treatment: Wondering about stopping hormone therapy?

Hey @johno47
I'm following this with interest since I'm in the first part of that sequence now, RP, and about to complete the radiation sessions. I also, unfortunately have no real answer to the question posed, but, but if you can answer a question or two...I'm also taking Orgavyx. My team said that the numbers on better results with both radiation and ADT is about 3%-5%, my feeling was "give me all ya got doc." I'm, luckily, not seeing the extreme fatigue that you are. I keep to an exercise regimen, it seems that is a common denominator for successfully mitigating some of the side effects. The flashes though, whoooo.

I was under the impression that the hormone therapy was something that typically didn't go beyond 2 years as the human body often becomes somewhat resistant to it. Have your dr's given you different information than this? I'm certainly no expert buy when I asked my RO, he said it's a decision to make with my urologist but the typical was 6 mos to 2 years for that reason.

I haven't heard or read of anyone in exactly in your situation but I imagine the only way to answer that is to stop the hormone therapy and test your PSA very often for the first year to year and a half or so, at least that is the what I would present as an idea to my doctor.

Best of luck to you sir!

Long ago and far away, the standard of care was "lifetime" ADT, at least until you became resistant, then on to the next drug, when that failed, the next...until you died.

Flash forward and today, many argue for specific duration of ADT, 6-24 months, if one responds, then they can consider stopping treatment, actively monitoring and based on clinical data, decision criteria and decision points, go back on treatment. They key is if you and your medical team decide to stop treatment based on clinical data, say PSA undetectable for a period of time, imaging which shows no activity and other clinical data (as you say, the side affects of no T can have cardiovascular, metabolic, quality of life - sexual drive, genitalia shrinkage, hot flashes, bone density...) then you should consider actively monitoring while off treatment and have decision criteria and decision points for going back on treatment.

Here's my clinical history in the chart I keep. You can see I did 18 month s of ADT in conjunction with chemotherapy and radiation to the PLNs after surgery and SRT failed. I see my urologist every 2-4 months along with labs. Our decision criteria is to have three or more consecutive increases in my PSA that show a continuous upward trend given the variability in my PSA tests since switching to USPSA, thus allowing calculation of doubling and velocity, imagining once PSA reaches .5 or higher and and any other clinical data. IN my case, I've been "off" treatment" for four years!

Not sure why your medical team has you on monotherapy. Here's a quote to think about:

Enough is No Longer Enough - urotoday.com/center-of-exce...

The treatment landscape for metastatic hormone-sensitive prostate cancer (mHSPC) has become increasingly complex during the last several years. Since 2014 we have been aware that combination treatment with androgen deprivation therapy (ADT) and docetaxel chemotherapy is associated with improved overall survival in patients with mHSPC. Quality of life (QOL) data suggested that better control of the disease with intensified treatment was associated with similar QOL by 12 months after starting chemohormonal treatment. However, there remained a need to ensure that patients who were not candidates for chemotherapy, or who might not benefit sufficiently from chemotherapy, had an option to improve outcomes.

Data providing an option for a broader population of patients followed soon thereafter, with LATITUDE and STAMPEDE both providing evidence that ADT plus abiraterone acetate improved both overall survival and maintained or improved QOL for patients with mHSPC when compared with ADT alone. Subsequent data from ARCHES and ENZAMET demonstrated improved survival with treatment intensification with ADT and enzalutamide, and TITAN demonstrated that ADT plus apalutamide also prolongs survival versus ADT. This left us with four options for use in combination with ADT that were associated with improved disease control and favorable patient reported quality of life outcomes.

More recently, additional data has accumulated from PEACE-1 and ARASENS. These studies demonstrated definitively that in patients eligible for treatment with chemotherapy, the addition of abiraterone acetate or darolutamide to chemotherapy improves overall survival, progression free survival, and additional disease control and toxicity endpoints that are important to patients. All of the patients in PEACE-1, and a majority of patients from ARASENS, had de novo mHSPC. The field continues to debate whether an all-comers, chemotherapy-fit population may benefit from a triplet approach, or whether those who gain the most from including chemotherapy may be patients with de novo metastatic or high volume disease. However, the question of intensified therapy appears to have been definitively answered – combination therapy with ADT plus at least one additional agent is the standard of care.

Ultimately these data fractured the existing ADT-alone dogma that had driven clinical practice for decades, upending the widely held belief that we would do harm to an older and more frail population by doing more. Whether we look at the randomized phase three trials or the patients who have shared their QOL outcomes, we see that this dogma was incorrect. All signs clearly demonstrate that adding something (an androgen receptor signaling inhibitor (ARSI), or docetaxel chemotherapy, or both) to the traditional ADT backbone benefits patients in terms of disease control and quality of life outcomes. With more than a decade of experience using most of these agents, we can hardly say that we are not yet comfortable managing the side effect profiles that they confer. Further, it is disingenuous to suggest that a majority of the patients in our clinical practices have absolute contraindications to the use of an ARSI in combination with ADT. Why, then, have we as a field failed approximately half of our patients and not combined ADT with an ARSI or docetaxel (or a combination of both) in treating their mHSPC? Although I could identify a number of potential reasons, none seem sufficient to justify withholding these treatments from our patients. Rather than scratching our heads, pointing fingers, or debating further, it is time to come together as a group of clinicians, patients, and loved ones and stop the practice of using ADT alone. Our patients deserve combination treatment or a clear understanding of why this is not what will serve them best, and we owe it to them to achieve the outcomes that we know are possible. ADT alone is not enough, and it is time to act on the data and provide the care that every one of our patients deserves.

Written by: Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts

Published Date: June 2022

Hi Kujhawk, great to hear that you have now gone 4 yrs without treatment. What is the expectation in the USA, is it that if you get past 5 years, without re-occurance, then effectively you get classed as clinically cured and cancer free.
In respect of the multi therapy approach, agree with that as well, as thats what my consultant has employed here in the UK. From my own research and personal experience, since getting diagnosed around a year ago, in addition to the medical treatments, would also add regular daily exercise and adopting a healthy whole food plant based diet as being an important weapon in their own right, which add to the potency and outcomes of conventional drugs, radio etc. Huge body of research and evidence to show that dairy, meat, eggs and seafood should be avoided, which I appreciate is easier said than done.

I've seen, 5, 7 and 10 years as the basis for "cured..."

I exercise 5-7 days a week, elliptical, swimming, weights, bike riding, basketball, love to ski and hike in the mountains...my medical team thinks its better than anything they can do. I smile and say, well, without what you do, not sure the exercise alone would be sufficient to actually beat back PCa. Still, while there is debate about it's role, I have read multiple studies pointing to its benefit, not just the usual health benefits but in a layman's and macro sense, strengthening one's immune system to fight PCa while you are in remission or a low volume state.

Can't say that I have avoided dairy, meat, eggs and seafood, though I have moderated their use in my diet greatly. Still, like with my cardiologist and my Afib when he said I need to stop drinking, I changed from 1-2 drinks a night to 1-2 a week.

I took Lupron for 25 months and if could do it over would have stopped it when I noticed how it was draining me of energy. That was at about 15 months. I tried to quit it but the Urologist insisted I continue taking it. Now my body will not produce testosterone so I'm always very low on energy and the quality of my life is not good.
Wayne.

Wayne, when talking to my Oncologist and seeing his data and also from reading messages here on the boards I see that it is known that Lupron is an energy drain for most men. It does so for me. Understandable as we no longer have testosterone. Lupron is our effective blockade against recurring cancer. How tolerable Lupron is for each individual is purely an individual situation. Some of us are destroyed by it others have little effects. But fatigue appears to be the common adverse condition. I am now understanding a bit of this therapy routine. The cause of Prostate Cancer is, as of yet, unknown so there is no guaranteed cures. Lupron buys us time - and time is precious. Time is life.

So from what I am reading I see that I have to start an exercise regimen. Small price to pay for time.

Thank you for your reply. I have exercised all my life, even ran marathons. Even today after Lupron has drained me of testosterone and energy my wife and I usually go to an exercise class for seniors four days a week and walk one or two other days. That sounds like a lot but I'm absolutely exhausted just about all the time. The exercise classes and taking a walk is a huge strain. Yet I recognize the protection low testosterone (15) gives me but I would be willing to risk increasing it if I could take a testosterone replacement but can't because of the side effect it had on me.

Close friend stage IV with mets to bones now on Xgeva and Lupron.....not sure if he is so sick from the injection last Monday or the cancer or both...Sorry this is vague, have read up on the meds but not sure if the cancer will get him before these medicines do with their side effects. I would appreciate your experiences. Thank you in advance.

My guy had that nasty shot xgena he asked the nurse to please put in in slowly she did not ! It hurt so bad I told her I was pissed ! And reported her ! Be careful it leaves a big knot in your abdomen 😞😞😞

I've received three Eligard injections, the last one was two weeks ago. About a month after the first injection I started with the hot flashes and over time noticed shrinkage in areas that would be most concerning to younger men and extra fat around the waist area. The dreaded fatigue and overall malaise has not been a problem. The advantage of that well known side effect is that in this hot, humid summer here in Louisiana I use that as an excuse to tell my wife, sorry, I am experiencing fatigue and just all around tiredness because of the medication, so I can't cut the grass, paint the long overdue shutters, wash the car, ____________ , fill in the blanks as needed in your case. Even though I have received my last 6 month injection I won't be telling my wife! Now whenever she has a project for me that I don't especially feel like doing...."honey, you know I would like to do that...but the medication just has me drained of any energy to do that". The only issue that comes to mind is I have to bring my motorcycle to work on over to a friend's garage to work on it otherwise she will wise up to my little scheme. lol