What is the current position on the length of hormone treatment?
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.
I think that both of you are makng the same, or very consistent, comments and observations.
I, for one, appreciate them.
Thank you.
Agree, read the response, think we're saying the same thing!
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
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.
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.
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.
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.
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.
@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.
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.