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

Kevin, I absolutely love/enjoy your graph. Thank you

Diagnoses, stage 4 PC, 12/17/19. Started triple treatment 1/6/2020. Month of Radiation, 6 months of Chemo, and have been on ADT with a side order of abiraterone, ever since. PSA went from 150+ to 0.13. Over the last 6 months its started rising agin up to 0.23. Feels like I am back on "Watchful Waiting" mode again which is how I began this journey back in 2011.

A study back in 2012 showed that taking a "drug holiday" with NON-metastatic prostate cancer improves quality of life without reducing overall survival. Unfortunately, that doesn't apply to those of us with metastatic or oligometastatic PC. Details here: https://www.cbc.ca/news/health/drug-holiday-an-option-for-some-prostate-cancers-1.1204872

As for the "triple treatment," because my prostate cancer is oligometastatic (just one metastasis, to my thoracic spine), and I was in my mid 50s at time of diagnosis, my oncology team at a Cancer Centre here in Ontario recommended Firmagon, Erleada, and two rounds of radiation (one to any remnants of the tumour after surgical debulking, and one to the prostate itself). From what I could gather from watching Dr Kwon's videos, he recommends the triple-treatment for advanced prostate cancer with multiple metastases, not for oligometastatic, but I don't have the medical expertise to be certain.

Regardless, I'm at 27 months now since diagnosis, my PSA is still undetectable (< 0.01 on the ultra-sensitive test), other bloodwork is good, and I have no new symptoms, so the combination seems to be working for me. The head of my onco team obviously can't promise anything, but he told me that my progress so far is similar to some patients who've gone 10+ years without progressing to additional treatment like chemo or Pluvicto, so 🤞

Unfortunately, because my PC is oligometastatic, barring any medical breakthroughs I expect to be on ADT forever (no holidays). But hey, I'm still here!

I had triple therapy at Johns Hopkins a little over a year ago. I was in good health with the exception of the PC. I am 70 yo and had RP in 2021 with single met at T8 6 months later. Had SBRT successfully without additional treatment at that time. Four months later after PSA went up to 4.6 from 0.37 a PSMA PET showed a positive node in my pelvis. Went to JH for systemic treatment in October 2022. Was immediately put on Lupron and within 2 weeks started chemo with Taxotere in addition to androgen receptor blocker Darolutamide. Had 4 cycles (my MO believes that is what was needed, not 6) of Taxotere in 3 months and at that time the Darolutamide was discontinued as well. My PSA became undetectable after 2nd chemo treatment and has remained so for over a year now. Had my last Lupron (3 month) shot in July, so I was on Lupron for 1 year. Eight weeks after the chemo had full pelvic radiation.
As for side effects, I have had significant fatigue since starting the Lupron continuing to now, but my Testosterone hasn't yet recovered. I have had some brain fog and depression, treated successfully with an antidepressant. I have had muscle and joint soreness and stiffness. I lost most of my head hair with the chemo which grew back about 4-6 months later and is actually a little thicker (probably due to low T). I lost most of my body hair. Low libido. Genital shrinkage.
Most of the above side effects are from the Lupron. I did have low WBC count after the 3rd chemo cycle which they treated. No nausea or vomiting.
Of course, the good news is there is currently no sign of the cancer with an undetectable PSA.
I opted for aggressive treatment at Johns Hopkins after I read a journal article titled Total Eradication Therapy. I wanted a chance at a cure or at least a long term remission. Triple therapy in conjunction with my RP and then pelvic radiation made sense to me. The therapy/drug that has given me the most side effects is the Lupron but that is the main line treatment if the cancer has spread outside of the gland.
Hope that helps. I believe getting state-of-the-art treatment at a progressive medical center is the way to go if you have a high grade tumor that has very limited spread (oligo metastatic) outside the prostate. Good luck

Thank you retireddoc your post was very helpful to me. I am a retired lawyer and in my practice about 30% of my clients were physicians ( real estate, business and estate planning). I always liked dealing with doctors in such matters and I miss it. I was diagnosed 30 months ago at 74, Gleason 9 , CR, advanced had RP and 13 months of ADT and Erleada. I did not know about the triple therapy then and it was not offered to me. I am presently good, undetectable PSA and low T and off of meds for a year now, but I have been advised that the PSA will probably rise this year and at that time I will chat with my doctors about a triple therapy plus radiation. 30 months ago I was advised that I had 4-5 years and I am doing all that I can to up that prognosis. Your history of triple therapy plus radiation is helpful.

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).

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".

retireddoc: do you think that most doctors follow the guidelines of nccn.org when they make there suggestions to prostate cancer patients or do you think most doctors, based on their experience, will make decisions outside of those guidelines when they think specific circumstances warrant it? Would you recommend nccn.org as a reasonable choice for valid patient research?

I'm going to agree and disagree with you there.

Agree...
PCa is a heterogenous disease, ergo, we are all "studies of one..." My PCa is not yours, the SEs I experience may not be yours, the skill of my surgeon may not be yours.

What I disagree with is the "complete faith..."

When I had SRT in March 2016 after a very "successful" surgery in 2014, my urologist and radiologist both said they would only radiate the prostate bed. At the time, I had read articles on clinical trials and data emerging from Mayo that in men with my clinical data, BCR was often not confined to the prostate bed and consideration should be given to including the PLNs and short term ADT, six months.

They dismissed my thoughts, no "long term data" they said. Three months after finishing SRT, my radiologist hesitated after looking at my PSA results on her screen, turned and said, it's more than doubled since we started..."

Next, I went to see the Director of Urology at a NCCN Center who was also head of a major US urological association, impressive resume. I laid out my clinical history, asked his thoughts on treatment based on the CHAARTED and STAMPEDE trials, he dismissed my thoughts, said he would treat me with mono-therapy, ADT, lifetime.

I said, thanx, left, never went back. I wen to to Mayo, saw Dr. Kwon who was an early advocate of rather than linear and sequential treatment, each destined to fail, then death, combining them and bringing them forward early in the treatment when it was more "manageable."

That worked, brought 4-1/2 years off treatment.

Flash forward to 2023, rising PSA, I have decision criteria about when to image, PSA between .5-1.0, my urologist supported that. The Plarify scan shows a single PLN. I meet with my radiologist (the same one who dismissed my thoughts on SRT in 2016) who now asked, Kevin, what do you want to do. I said, what do you think about SBRT combined with six months of ADT? She agreed, wanted to write a script for Lupron. I said no, let's do Orgovyx for the reasons:

No flare
Faster to castration
Higher sustained castration rate
Lower CV SE profile
Faster recovery of T when stopping.

She agreed that was a reasonable treatment approach.

Next, I met with my "new" oncologist. He recommend we do 24 months of Orgovyx and add Xtandi, said the objective was curative. I looked at him and said, given my clinical history, not sure a cure is in the cards but I'm open to trying. He thought for a minute and said, yeah, let's do this...SBRT, 12 months of Orgovyx, add Xtandi is PSA does not respond. We meet every three months, labs, consult and decide for the next three months based on the clinical data.

I agreed..

So, my mantra is shared decision making between myself and my medical team. I have responsibilities as a patient, they have responsibilities as member of my medical team I have chosen.

I've developed "rules" for myself and members of my medical team, they've served me well. I've posted them here before.

1. Please know your stuff. as a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.

2. Please do your homework.I expect you to have reviewed my medical records prior to my appointment. You have looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.

3. Respect my point. of view. The best leaders listen to all sides thoughtfully before reaching a conclusion.With patience and finesse, I am sure you can help me to feel confident about the plan you have shaped for me.

4. Be curious. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.

5. When it’s decision time, decide! If you think treating my cancer is not worth it; if you think I am at the point where I should stop chemotherapy; if I have veered off the path you have cleared for me—then speak up! Care for me with a dogged determination to get me healthy and do not keep any secrets that might lead to regret. I want an oncologist who knows what is best for me and doesn’t chicken out in difficult times.

6. Be responsible. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.

7. Talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions? Leaders welcome scrutiny of their communication skills. No one cares if a flunky is curt.

My Rules:

Don’t Walk In Cold to an appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself. * Knowledge will empower my BS detector. When Dr. Thrasher and Dr. Emmott told me ADT is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.

Walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects. * I won’t blindly accept the opinion of a non-specialist– I know that my cancer requires a team approach.

Once I make an informed decision and carry it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future. Yesterday is gone, so forget it, well, learn from it.

I educate myself as completely as possible and take the time I need, I always know that no matter the outcome of a particular choice, I make the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.

I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.

Kevin

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.