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?

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@retireddoc

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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You should consider researching the TAMARACK clinical trial. I think Dr Shore in South Carolina is involved with this clinical trial. They are in Phase 2 and having promising results. The study includes an Antibody Conjugate that delivers a lethal payload directly into the PC cells. It looks for a surface protein that is highly expressed in PC. It locks on like a lock and key to the cancer cell to deliver a lethal payload directly into the cancer cell.

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@wooldridgec

You should consider researching the TAMARACK clinical trial. I think Dr Shore in South Carolina is involved with this clinical trial. They are in Phase 2 and having promising results. The study includes an Antibody Conjugate that delivers a lethal payload directly into the PC cells. It looks for a surface protein that is highly expressed in PC. It locks on like a lock and key to the cancer cell to deliver a lethal payload directly into the cancer cell.

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Will do. Thanks for the info.

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@retireddoc

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.

Jump to this post

@retireddoc Interesting that you mentioned HIV, because I've been thinking of the same comparison. I remember that HIV was considered a "terminal condition" when I was in my 20s, until suddenly it wasn't (at least not for people fortunate enough to live in rich countries).

There was a cohort that thought they'd heard their death sentence when they tested HIV-positive in the late 1980s/early 90s, but most of them are still here today, many well into old age, because of AZT and various cocktails. I'm hoping that my bone oligometastatic prostate cancer diagnosis a couple of years ago might end up turning out the same way; I was 56 at time of diagnosis, and while I was pretty discouraged at first (wasn't sure if I'd even live to cash in my retirement savings at 65), I haven't given up hope of seeing age 70 or even 80 given how well Erleada+ADT is working out. If it gives me at least a few extra years, as the TITAN study suggests, perhaps something else will be rolled out before it's too late for me.

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I asked by MO at JH (he is the Director of the Brady Urologic Institute which is Hopkins research facility for prostate cancer) what he thought the biggest breakthrough was going to be in the next few years for treatment and he said Pluvicto (LU-177 tagged to PSMA). I am hoping there is a breakthrough in immunologic therapy but so far that doesn't seem to be particularly helpful. There is a new immunologic therapy for metastatic melanoma which apparently results in complete remission in about a quarter of cases (don't quote on numbers), so there is hope for other cancers too.

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@retireddoc

I asked by MO at JH (he is the Director of the Brady Urologic Institute which is Hopkins research facility for prostate cancer) what he thought the biggest breakthrough was going to be in the next few years for treatment and he said Pluvicto (LU-177 tagged to PSMA). I am hoping there is a breakthrough in immunologic therapy but so far that doesn't seem to be particularly helpful. There is a new immunologic therapy for metastatic melanoma which apparently results in complete remission in about a quarter of cases (don't quote on numbers), so there is hope for other cancers too.

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Yes, my onco team already talked to me about Pluvicto, just to let me know that there were now options in addition to chemo if/when my (oligo) mCSPC becomes castrate-resistant.

But so far, as long as ADT+Erleada keeps my PSA < 0.01 on the ultra-sensitive test and no new symptoms show up, I'm not going to try to fix what ain't broke. 🙂

I don't love ADT. I miss having body hair, for example (though I still shave), I'm self conscious about the mild gynomastia, I have to work very hard at weight management, and I have a couple of sick-y days every month after my Firmagon injection. Still, I was paraplegic from the tumour at time of diagnosis, spent 3 1/2 months in a hospital bed, and have gradually worked my to reasonably-good mobility over the 2 years since I got discharged, so ADT side-effects seem like minor issues compared to being able to come home, walk again, and just generally get my life back. I can see how it might be different for someone who went from feeling OK straight to the ADT side-effects.

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