What is the current position on the length of hormone treatment?

Posted by mtv @mtv, Dec 28, 2023

I am interested to learn different views of the length of hormone treatment. most urologists ask for 18 months for gleason 8 etc. isthere another view?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@retireddoc

Thank you for your reply.

Regarding "complete faith", I said "I choose my physicians wisely and have complete faith in them". The key here choosing wisely. Having been in the medical profession for over 40 years, I can attest that physicians are no different than people in any other field or endeavor in life. Some are brilliant, experienced, dedicated and highly skilled. Others not so much. No different in some ways than auto mechanics. I have had some that diagnosed and fixed my problem without difficulty and charges a reasonable fee. Others were more interested in making money than in solving the problem.

I have read some of your posts and you appear to be the exception. You are obviously intelligent and highly invested in your care. You have extensively researched the disease, treatments and physicians. This is not the norm. Most people don't have the understanding to go to the literature and make sense of this complicated disease. This is not a criticism of them. If I tried to go research patent law I would end up confused and likely make the wrong assumptions.

My expert MO at JH and RO at Emory are both highly experienced, knowledgeable and have done extensive research on the topic of prostate cancer. There is no way I could read literature and understand the disease and treatment to the degree that they do. That doesn't mean I don't ask questions or am not involved with my care. My MO at Hopkins, after my chemo, gave me 5 options going forward. He said at this time they is no true SOC with the rapidly changing landscape. One of the options he said he would not recommend. I asked him what he would recommend/do given the risk/benefit. He told me and I followed his advise.

I have always thought that if you don't want to follow your doctor's advice you probably picked the wrong physician. Just my opinion.

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I think that both of you are makng the same, or very consistent, comments and observations.
I, for one, appreciate them.
Thank you.

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Agree, read the response, think we're saying the same thing!

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@retireddoc

Thank you for your reply.

Regarding "complete faith", I said "I choose my physicians wisely and have complete faith in them". The key here choosing wisely. Having been in the medical profession for over 40 years, I can attest that physicians are no different than people in any other field or endeavor in life. Some are brilliant, experienced, dedicated and highly skilled. Others not so much. No different in some ways than auto mechanics. I have had some that diagnosed and fixed my problem without difficulty and charges a reasonable fee. Others were more interested in making money than in solving the problem.

I have read some of your posts and you appear to be the exception. You are obviously intelligent and highly invested in your care. You have extensively researched the disease, treatments and physicians. This is not the norm. Most people don't have the understanding to go to the literature and make sense of this complicated disease. This is not a criticism of them. If I tried to go research patent law I would end up confused and likely make the wrong assumptions.

My expert MO at JH and RO at Emory are both highly experienced, knowledgeable and have done extensive research on the topic of prostate cancer. There is no way I could read literature and understand the disease and treatment to the degree that they do. That doesn't mean I don't ask questions or am not involved with my care. My MO at Hopkins, after my chemo, gave me 5 options going forward. He said at this time they is no true SOC with the rapidly changing landscape. One of the options he said he would not recommend. I asked him what he would recommend/do given the risk/benefit. He told me and I followed his advise.

I have always thought that if you don't want to follow your doctor's advice you probably picked the wrong physician. Just my opinion.

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Thanx, makes sense.

My original urologist who did the surgery was very good at that, it was even it came back that he was off. He told me at our last consult before his retirement that it was not often he learned from his patients, I was one of those.

I don't doubt the training, education and experience of any who have been part of my medical team. It's the ability to actively listen, willingness to share with the patient in decision making that has separated the good from the excellent.

I feel you have to have a medical team that matches your patient style. For some, simply doing what the medical team says is good enough, they don't want to or can't wade through all the literature, and if so, great, it's generally not that they're wrong, I'm just not into SOC which I consider as population based using historical data.

I make sure my medical team understands I cannot match their training, education and experience. There is no way I know technical what my radiologist has taken years to master but I grasp the concepts and principles enough to have an intelligent conversation with her.

I appreciate you expounding on your comments, perhaps I took the comment of "in good faith" out of the context which you meant.

Kevin

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Thanks for the additional reply. You sound like a thoughtful and reasonable person and an informed patient.
I totally agree about having a treatment team that fits the particular style of the patient. I also wholeheartedly agree with your SOC comment. I have a complicated case. Aggressive G9 cancer with limited oligometastatic disease and otherwise in good health. The SOC recently was to put me on Lupron and wait until the cancer mutated into mCRPC and then maybe do chemo or Radium knowing my time was limited to a couple of years. Cutting edge MO/RO now aggressively treat oligo metastatic disease with the intent of long term remission or even cure. So, I agree. The patient needs to be engaged and in charge of their healthcare. It appears you are. I wish you the best and happy new year.

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@retireddoc

Just a follow up to your reply. I asked my MO at JH and his very experienced NP (Dr. Pienta and Diana Reyes NP) what the next steps would be. They said that from their experience treating men in a subgroup like me (high grade cancer G9, very limited spread, excellent response to initial triple therapy with undetectable PSA) that about 70% remain undetectable after about 3 years (I don't think they have reliable data further out) and 30% will see PSA rise as testosterone rises. If PSA goes up they will wait until it hits 0.5 and then repeat the PSMA PET. If the PET shows another site of spread they will use SBRT to obliterate the cancer +/_ short 3 month course of Lupron.
I don't believe there are set-in-stone protocols for men in my position at this time due to the rapid evolution of treatment and the large number of trials ongoing. For me, that is why I went to someone with extensive experience, heavily involved in research, treats almost exclusively prostate cancer, and treats patients individually based on their circumstances rather than following set protocols (Standard of Care-which lags the curve of latest trials etc).

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EFS. Event free survival of 3-4 years after initial treatment of high Gleason and CR PC appears to me to be common. I am in a UCLA clinical trial, 6 months of ADT and Erleada or a Pracebo, then RP, then 6 more months of the above meds. The men who got the Erleada in the trial had EFS for about 41 months, the men who got the pracebo had EFS for about 17 months. I am 30 months into this program and I expect that my present remission will change this year. I appreciate this site, I do question my UCLA doctors and they educate me, I know that they are caring and the experts and I am a very concerned layman. At 76, I work with the hand that I have been dealt.

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@retireddoc

Thank you for your reply.

Regarding "complete faith", I said "I choose my physicians wisely and have complete faith in them". The key here choosing wisely. Having been in the medical profession for over 40 years, I can attest that physicians are no different than people in any other field or endeavor in life. Some are brilliant, experienced, dedicated and highly skilled. Others not so much. No different in some ways than auto mechanics. I have had some that diagnosed and fixed my problem without difficulty and charges a reasonable fee. Others were more interested in making money than in solving the problem.

I have read some of your posts and you appear to be the exception. You are obviously intelligent and highly invested in your care. You have extensively researched the disease, treatments and physicians. This is not the norm. Most people don't have the understanding to go to the literature and make sense of this complicated disease. This is not a criticism of them. If I tried to go research patent law I would end up confused and likely make the wrong assumptions.

My expert MO at JH and RO at Emory are both highly experienced, knowledgeable and have done extensive research on the topic of prostate cancer. There is no way I could read literature and understand the disease and treatment to the degree that they do. That doesn't mean I don't ask questions or am not involved with my care. My MO at Hopkins, after my chemo, gave me 5 options going forward. He said at this time they is no true SOC with the rapidly changing landscape. One of the options he said he would not recommend. I asked him what he would recommend/do given the risk/benefit. He told me and I followed his advise.

I have always thought that if you don't want to follow your doctor's advice you probably picked the wrong physician. Just my opinion.

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For those that had treatment that follows the ARSENS trial (i.e., ADT, Darolutamide, and 6 Cycles of Docetaxel). The newest data released by the ARSENS trial.

Overall Survival - Still Not Reached (NR)
Time to Castrate Resistance - Still Not Reached (NR)

It has been 5+ years now. This is promising news.

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@wooldridgec

For those that had treatment that follows the ARSENS trial (i.e., ADT, Darolutamide, and 6 Cycles of Docetaxel). The newest data released by the ARSENS trial.

Overall Survival - Still Not Reached (NR)
Time to Castrate Resistance - Still Not Reached (NR)

It has been 5+ years now. This is promising news.

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Where did you see that? My MO at JH was essentially following the ARASENS trial but he believes there is no supporting data that 6 cycles of Docetaxel is any better than 4. My Darolutamide was discontinued after the chemo (PSA was undetectable). He strongly suggested pelvic radiation as I had a positive node on PSMA PET prior to beginning the triple therapy. My Lupron was discontinued after year with PSA still undetectable.
Was this similar to your treatment? I don't believe there is a set in stone protocol for the triple therapy at this time and trials are underway to assess the best exact protocol.

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@retireddoc

Where did you see that? My MO at JH was essentially following the ARASENS trial but he believes there is no supporting data that 6 cycles of Docetaxel is any better than 4. My Darolutamide was discontinued after the chemo (PSA was undetectable). He strongly suggested pelvic radiation as I had a positive node on PSMA PET prior to beginning the triple therapy. My Lupron was discontinued after year with PSA still undetectable.
Was this similar to your treatment? I don't believe there is a set in stone protocol for the triple therapy at this time and trials are underway to assess the best exact protocol.

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The information is a compilation of multiple sources including expert webinars and publications. Researchers deterined that 10 cycles is the sweet spot. Researchers then began subtracting cycles to see how many cycles they could reduce to avoid side effects - they agreed on 6 cycles.

All PC is different for each person. I was diagnosed Stage 4 De Novo. The PC went to my bones (i.e., spine, ribs, and pelvis). My doctor thinks a lot like Dr. Kwon. Hit the hell out of the PC up front with triplet therapy. I first was given 10 treatment of radiation to my spin and then 5 to the ribs. I started ADT and Darolutamide and then Chemotherapy. I finished 6 cycles and asked if I could have more. Because I had zero side effect to chemo and my blood was other worldly, and my PSA was dropping too slowly I did 10 cycles. After completing all 10 cycles my PSA dropped to 0.238. My PSA continued to drop post Chemo and is undetectable. For me, I wanted to kill as many micro metastases as possible. That was my choice and my journey. If my doctor would have let me have more cycles I probably would have done 12 cycles in total. I probably will have to continue on ADT and Darolutamide indefinitely. I am determined to live with this cancer and not die of it. I also eat a 70% plant based diet. I work every day and exercise.

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@retireddoc

I wanted to add this caveat as there are multiple men replying who are in a similar situation. There is no one right treatment. There are many excellent, well trained, experienced MO/RO/Urologists around the world that treat prostate cancer differently. The reason there are different approaches is that there not yet an established treatment protocol for every phase of this disease that is so complex. There are options for initial treatment of the prostate (surgery, radiation, seed implantation (brachytherapy), and direct ablation using heating/freezing and US. Add to that the vast number of drugs and the complexity of patient presentation/stage of disease/G score/patient age, co morbidities, patient preference etc etc and it is no wonder that there is no one set treatment. As I have read extensively on various support boards I have occasionally encountered individuals that definitively state that this treatment is best or yo shouldn't have surgery etc. These are only opinions, usually from lay people that have read articles and done "research". This is not helpful as making definitive statements about treatment plants seeds of doubt in the minds of those who choose a different treatment and causes anxiety. Sharing my experience and how I was treated is fine and maybe it will help someone else. But none of us should tell others what to do or their treatment is wrong. My daughter, who is an Infectious Disease specialist at a major Medical Center, was given a coffee cup by one of her colleagues which reads "Don't confuse your Google search with my Medical Degree". I thought it was funny and not meant to be pompous. Even myself, with an MD, 5 years post med school training/Fellowship and 40+ years of practice (including major medical center) do not fully understand the complexity of this disease and the treatments. The real experts, MO, RO and urologist, know much more than I. I choose my treating physicians wisely and have complete faith in them. I ask questions but don't try to direct my own care. I remember the old adage I have heard many times "He who acts as his own doctor has a fool for a patient".

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@retireddoc "The reason there are different approaches is that there not yet an established treatment protocol for every phase of this disease that is so complex."

Amen to that. IIRC (as a layperson), many of our drugs — like Erleada — were approved for general use only a few years ago, so we don't even have 10 years of data for them yet (sometimes not even 5 years), and the studies that have been run, like TITAN, are fairly broad (e.g. metastatic/non-metastatic, and castrate-sensitive/resistant). The concept of "oligometastatic" is also only just now becoming mainstream.

I'm in the Ironman study/registry (like many of the rest of you, I suspect). We're the generation whose experiences will determine the best practices for treating different kinds of prostate cancer in the future, which is both terrifying and exciting.

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@wooldridgec

The information is a compilation of multiple sources including expert webinars and publications. Researchers deterined that 10 cycles is the sweet spot. Researchers then began subtracting cycles to see how many cycles they could reduce to avoid side effects - they agreed on 6 cycles.

All PC is different for each person. I was diagnosed Stage 4 De Novo. The PC went to my bones (i.e., spine, ribs, and pelvis). My doctor thinks a lot like Dr. Kwon. Hit the hell out of the PC up front with triplet therapy. I first was given 10 treatment of radiation to my spin and then 5 to the ribs. I started ADT and Darolutamide and then Chemotherapy. I finished 6 cycles and asked if I could have more. Because I had zero side effect to chemo and my blood was other worldly, and my PSA was dropping too slowly I did 10 cycles. After completing all 10 cycles my PSA dropped to 0.238. My PSA continued to drop post Chemo and is undetectable. For me, I wanted to kill as many micro metastases as possible. That was my choice and my journey. If my doctor would have let me have more cycles I probably would have done 12 cycles in total. I probably will have to continue on ADT and Darolutamide indefinitely. I am determined to live with this cancer and not die of it. I also eat a 70% plant based diet. I work every day and exercise.

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Fantastic! You are fighter and you have taken control of your disease and your health. I am in agreement with you and your doctors.

Generally, trials of new drugs/therapies in the Phase 1, 2 & 3 trials are given first to those individuals with more advances disease that have limited options and expected survival. The efficacy of treatment, dosages and side effects are evaluated. If the treatment looks promising the new drug/treatments are then tried on patients with less advanced disease and so forth.

Some researchers/progressive MO or RO may realize that certain drugs or combinations may be efficacious but have not yet become SOC because incorporation into everyday practice takes publication of successful Phase 3 trials, FDA approval of drugs and acceptance by the medical community. These changes take years. Meanwhile, my cancer is marching forward.

I wanted a treatment team that was on the forefront. It made sense to me also to hit the cancer at an earlier stage with everything but the kitchen sink to try and kill as many micro metastases as possible (maybe all??!!). I was willing to endure some pain and discomfort in the short term for long term gain. After my PSA rapidly doubled following RP and SBRT for a single met to T8, I searched the literature and came upon an article from Johns Hopkins titled "Total Eradication Therapy". That sounded like what I was looking for. I found a match with the MO team there and they immediately started the triple therapy followed by pelvic radiation to kill residual cancer in the nodes and prostate bed. They also weigh the quality of life against reward and believe in intermittent ADT therapy if the PSA is undetectable. Should my PSA go back up and PMSA PET reveal additional bone/nodal disease, the primary treatment will be radiation/SBRT as this has a high likelihood of killing focal tumor.

I am cautiously hopeful. As I was diagnosed at a somewhat later age, 68, a win for me would be if I could get 10-15 years more of quality life. A agree with someone that said we are the guinea pigs in this rapidly changing landscape of prostate cancer treatment. I really believe that one day in the not too distant future this will become a chronic condition instead of a death sentence for some with advanced disease. As prostate cancer is such a prevalent cancer in men, a lot of research time and money is being allocated to finding a cure. It reminds me of HIV/AIDS. When I was finishing my medical training in the early 80s, AIDS was emerging as a devastating new disease with no known cause, no treatment and almost universally fatal. After decades of intensive research and many drug trials, they identified the virus and now have very effective treatments that have, if not cured the disease, rendered the virus undetectable as long as the person adheres to the treatment regimen. I am hopeful the same will happen for many cancers, including prostate.

Sorry for the rambling. Sometimes it helps to "talk" about the disease and treatments. It makes me feel I have some control over a disease that has significantly impacted my life.

Good luck to everyone as we continue on this journey. It is always informative to hear other men's experiences.

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