I can't answer that, others on the forum may based on their experience.
Think statistics and the Bell Curve. Some on ADT will get the "standard" time on ADT before adaptation and resistance. What that time is, not sure. Others will get one or more standard deviations to the right, longer, others to the left, less.
Problem is, the medical community doesn't know, they have no definitive answer of if this, then that. It's like asking (or your medical team saying!) how long can I expect to live...
Are they cures, no... Can they extend life with a degree of quality, possibly...
If you have not already, ask your medical team to have Genomic testing done.
If not already, access to cutting edge treatments and thinking may necessitate consultation and care at major NCCN Centers of Excellence.
Attached is my clinical history. I have chosen the intermittent route for several reasons. One was the concern of resistance. When deciding to come off treatment in April, my oncologist was arguing for six more moths on Orgovyx, while I was arguing to come off it. He didn't have the conclusive data about the benefit - extending PFS, OS...I didn't have the data about becoming resistant...so, we agreed to come off and actively monitor, labs and consults every three months, criteria to go back on. My first labs are today, I am expecting no surprises but...
You can read through the NCCN Guidelines, the PCRI and PCF both have excellent guides as well as videos. You can also search for Dr. Kwon's videos, they are useful in informing any decision you take with your medical team.
As others have said, you are not out of options but you have homework to do so that you can discuss the way ahead.
I can't answer that, others on the forum may based on their experience.
Think statistics and the Bell Curve. Some on ADT will get the "standard" time on ADT before adaptation and resistance. What that time is, not sure. Others will get one or more standard deviations to the right, longer, others to the left, less.
Problem is, the medical community doesn't know, they have no definitive answer of if this, then that. It's like asking (or your medical team saying!) how long can I expect to live...
Are they cures, no... Can they extend life with a degree of quality, possibly...
If you have not already, ask your medical team to have Genomic testing done.
If not already, access to cutting edge treatments and thinking may necessitate consultation and care at major NCCN Centers of Excellence.
Attached is my clinical history. I have chosen the intermittent route for several reasons. One was the concern of resistance. When deciding to come off treatment in April, my oncologist was arguing for six more moths on Orgovyx, while I was arguing to come off it. He didn't have the conclusive data about the benefit - extending PFS, OS...I didn't have the data about becoming resistant...so, we agreed to come off and actively monitor, labs and consults every three months, criteria to go back on. My first labs are today, I am expecting no surprises but...
You can read through the NCCN Guidelines, the PCRI and PCF both have excellent guides as well as videos. You can also search for Dr. Kwon's videos, they are useful in informing any decision you take with your medical team.
As others have said, you are not out of options but you have homework to do so that you can discuss the way ahead.
I know the statistics. What I am asking is for peoples personal experience with regard to time to castrate resistance. For example, there are other threads where people have asked if anyone has lived longer than 10 years with metastatic prostate cancer. And thank God, several people responded and others reading were encouraged. I'm looking for others to chime in with there personal journeys with regard to the length of time they remained castrate sensitive. For example, I am at the 2 year mark. But I was treated based on triplet therapy based on the ARSENS trial. To date, time castrate resistance has not been reached with that study. Because the men in that study that received 6 cycles of chemo, ADT, and Darolutamide are still alive and many still castrate sensitive. I'm asking if there are other out there that are still castrate resistant after several years 5, 10 etc.
I know the statistics. What I am asking is for peoples personal experience with regard to time to castrate resistance. For example, there are other threads where people have asked if anyone has lived longer than 10 years with metastatic prostate cancer. And thank God, several people responded and others reading were encouraged. I'm looking for others to chime in with there personal journeys with regard to the length of time they remained castrate sensitive. For example, I am at the 2 year mark. But I was treated based on triplet therapy based on the ARSENS trial. To date, time castrate resistance has not been reached with that study. Because the men in that study that received 6 cycles of chemo, ADT, and Darolutamide are still alive and many still castrate sensitive. I'm asking if there are other out there that are still castrate resistant after several years 5, 10 etc.
I have APC and did 4 rounds of chemo followed by 3 month cycled Lupron injections. In 2019 was switched to ORGOVYX . Have had PSA 0.02 levels since. Side effects have increased but manageable with exercise. So have been castrate sensitive for more than 5 years. I am 74 yo. My oncologist does not recommend taking a break from treatment.
I know the statistics. What I am asking is for peoples personal experience with regard to time to castrate resistance. For example, there are other threads where people have asked if anyone has lived longer than 10 years with metastatic prostate cancer. And thank God, several people responded and others reading were encouraged. I'm looking for others to chime in with there personal journeys with regard to the length of time they remained castrate sensitive. For example, I am at the 2 year mark. But I was treated based on triplet therapy based on the ARSENS trial. To date, time castrate resistance has not been reached with that study. Because the men in that study that received 6 cycles of chemo, ADT, and Darolutamide are still alive and many still castrate sensitive. I'm asking if there are other out there that are still castrate resistant after several years 5, 10 etc.
Hi @wooldridgec. I am so happy to hear that you are currently receiving triplet therapy. You should definitely feel encouraged and rest assured that you are receiving cutting edge treatment. As you mentioned, the results from the ARASENS study definitely show a huge improvement in the time to castrate resistance which is encouraging. My father, like you, is currently receiving triplet therapy and is over one year now since the start of his treatment, and remains hormone sensitive.
One small correction I did want to point out (sorry, I am a bit of a statistics nerd), is that it is unfortunately not the case that castrate resistance was never reached amongst the triplet therapy group in the ARASENS trial (if I am understanding you correctly). What was not reached by the time the data was analyzed (approximately four or five years after data collection started?) was the median time to castrate resistance. Median in statistics is the point at which a half-way mark is reached, kind of like the median in the middle of the road. It is the point in time where exactly half of the group reaches a given endpoint (in this case, castrate resistance), and the other half does not. By saying that the median time to castrate resistance has not been reached, they are basically saying that from the beginning of the study until the time of analysis, the point in time where half of the triplet group have become castrate resistant has not yet been reached. In other words, after four years, more than half of the individuals in the triplet therapy group have not reached castrate resistance (by that time, only 225 out of 651 - or 35% - of the triplet therapy participants had become castrate resistant).
I have attached the graph from the ARASENS trial for your reference, where you can see over time on average what the time to castrate resistance might look like over a four/five year period (for those with triplet therapy and those without).
I'll let you know in a few months. I am 3.7 years in and just entering the doubling zone. Which means my castrate sensitiveness is on the move. Thankfully we've, my oncologist, wife and I, have been mindfully watching this for the last 9 months and it's time to make a new plan. Appointment is tomorrow, thinking Step Up Bat trail.
I have APC and did 4 rounds of chemo followed by 3 month cycled Lupron injections. In 2019 was switched to ORGOVYX . Have had PSA 0.02 levels since. Side effects have increased but manageable with exercise. So have been castrate sensitive for more than 5 years. I am 74 yo. My oncologist does not recommend taking a break from treatment.
I'll let you know in a few months. I am 3.7 years in and just entering the doubling zone. Which means my castrate sensitiveness is on the move. Thankfully we've, my oncologist, wife and I, have been mindfully watching this for the last 9 months and it's time to make a new plan. Appointment is tomorrow, thinking Step Up Bat trail.
I can't answer that, others on the forum may based on their experience.
Think statistics and the Bell Curve. Some on ADT will get the "standard" time on ADT before adaptation and resistance. What that time is, not sure. Others will get one or more standard deviations to the right, longer, others to the left, less.
Problem is, the medical community doesn't know, they have no definitive answer of if this, then that. It's like asking (or your medical team saying!) how long can I expect to live...
Are they cures, no... Can they extend life with a degree of quality, possibly...
If you have not already, ask your medical team to have Genomic testing done.
If not already, access to cutting edge treatments and thinking may necessitate consultation and care at major NCCN Centers of Excellence.
Attached is my clinical history. I have chosen the intermittent route for several reasons. One was the concern of resistance. When deciding to come off treatment in April, my oncologist was arguing for six more moths on Orgovyx, while I was arguing to come off it. He didn't have the conclusive data about the benefit - extending PFS, OS...I didn't have the data about becoming resistant...so, we agreed to come off and actively monitor, labs and consults every three months, criteria to go back on. My first labs are today, I am expecting no surprises but...
You can read through the NCCN Guidelines, the PCRI and PCF both have excellent guides as well as videos. You can also search for Dr. Kwon's videos, they are useful in informing any decision you take with your medical team.
As others have said, you are not out of options but you have homework to do so that you can discuss the way ahead.
I have had Genomic testing 2x and there were no genetic markers found. I am de novo metastatic stage 4. I was diagnosed on my Birthday 7/27/2022. The Cancer spread to the bone only (spin, pelvis, ribs). I was started on Casodex first and radiation (10 cycles to the spin) and 5 additional cycles to the ribs. After 30 days I was put on Eligard shots every 3 months) along with Nubeqa. I immediately started chemotherapy and completed 10 cycles (Docetaxel 3 weeks apart). I have very few side effects from the chemo other than extreme fatigue. Radiation was absolutely the worst and very difficult to endure. To date, I remain castrate sensitive with my PSA < 0.100. My oncologist says I have beaten the odds up to this point. So, I am castrate sensitive 2 years now and I will be checked again in 3 months. My treatment plan was patterned after the ARSENS study. But what I am learning is that no matter what, every man responds differently to treatment.
I have had Genomic testing 2x and there were no genetic markers found. I am de novo metastatic stage 4. I was diagnosed on my Birthday 7/27/2022. The Cancer spread to the bone only (spin, pelvis, ribs). I was started on Casodex first and radiation (10 cycles to the spin) and 5 additional cycles to the ribs. After 30 days I was put on Eligard shots every 3 months) along with Nubeqa. I immediately started chemotherapy and completed 10 cycles (Docetaxel 3 weeks apart). I have very few side effects from the chemo other than extreme fatigue. Radiation was absolutely the worst and very difficult to endure. To date, I remain castrate sensitive with my PSA < 0.100. My oncologist says I have beaten the odds up to this point. So, I am castrate sensitive 2 years now and I will be checked again in 3 months. My treatment plan was patterned after the ARSENS study. But what I am learning is that no matter what, every man responds differently to treatment.
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I can't answer that, others on the forum may based on their experience.
Think statistics and the Bell Curve. Some on ADT will get the "standard" time on ADT before adaptation and resistance. What that time is, not sure. Others will get one or more standard deviations to the right, longer, others to the left, less.
Problem is, the medical community doesn't know, they have no definitive answer of if this, then that. It's like asking (or your medical team saying!) how long can I expect to live...
There are as others have said, many treatment choices. The SECURE Trial is one example - https://www.urotoday.com/conference-highlights/asco-2024/asco-2024-prostate-cancer/152557-asco-2024-secure-a-dose-escalation-expansion-study-to-assess-the-anti-tumor-efficacy-of-67cu-sar-bispsma-in-patients-with-metastatic-castrate-resistant-prostate-cancer.html?utm_source=newsletter_13080&utm_medium=email&utm_campaign=advancements-in-psma-based-treatments-in-metastatic-castrate-resistant-prostate-cancer
There are the PRINCE and UCSF trials - https://www.urotoday.com/conference-highlights/snmmi-2024/152776-snmmi-2024-combination-treatment-of-prostate-cancer-using-pembrolizumab-with-psma-based-radioligands.html?utm_source=newsletter_13080&utm_medium=email&utm_campaign=advancements-in-psma-based-treatments-in-metastatic-castrate-resistant-prostate-cancer
and this - PSMA-targeted radionuclide therapy - https://www.urotoday.com/conference-highlights/suo-2023/suo-2023-prostate-cancer/148290-suo-2023-psma-radioligands-current-and-future.html?utm_source=newsletter_13080&utm_medium=email&utm_campaign=advancements-in-psma-based-treatments-in-metastatic-castrate-resistant-prostate-cancer
Are they cures, no... Can they extend life with a degree of quality, possibly...
If you have not already, ask your medical team to have Genomic testing done.
If not already, access to cutting edge treatments and thinking may necessitate consultation and care at major NCCN Centers of Excellence.
Attached is my clinical history. I have chosen the intermittent route for several reasons. One was the concern of resistance. When deciding to come off treatment in April, my oncologist was arguing for six more moths on Orgovyx, while I was arguing to come off it. He didn't have the conclusive data about the benefit - extending PFS, OS...I didn't have the data about becoming resistant...so, we agreed to come off and actively monitor, labs and consults every three months, criteria to go back on. My first labs are today, I am expecting no surprises but...
You can read through the NCCN Guidelines, the PCRI and PCF both have excellent guides as well as videos. You can also search for Dr. Kwon's videos, they are useful in informing any decision you take with your medical team.
As others have said, you are not out of options but you have homework to do so that you can discuss the way ahead.
Kevin
I know the statistics. What I am asking is for peoples personal experience with regard to time to castrate resistance. For example, there are other threads where people have asked if anyone has lived longer than 10 years with metastatic prostate cancer. And thank God, several people responded and others reading were encouraged. I'm looking for others to chime in with there personal journeys with regard to the length of time they remained castrate sensitive. For example, I am at the 2 year mark. But I was treated based on triplet therapy based on the ARSENS trial. To date, time castrate resistance has not been reached with that study. Because the men in that study that received 6 cycles of chemo, ADT, and Darolutamide are still alive and many still castrate sensitive. I'm asking if there are other out there that are still castrate resistant after several years 5, 10 etc.
I have APC and did 4 rounds of chemo followed by 3 month cycled Lupron injections. In 2019 was switched to ORGOVYX . Have had PSA 0.02 levels since. Side effects have increased but manageable with exercise. So have been castrate sensitive for more than 5 years. I am 74 yo. My oncologist does not recommend taking a break from treatment.
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1 ReactionHi @wooldridgec. I am so happy to hear that you are currently receiving triplet therapy. You should definitely feel encouraged and rest assured that you are receiving cutting edge treatment. As you mentioned, the results from the ARASENS study definitely show a huge improvement in the time to castrate resistance which is encouraging. My father, like you, is currently receiving triplet therapy and is over one year now since the start of his treatment, and remains hormone sensitive.
One small correction I did want to point out (sorry, I am a bit of a statistics nerd), is that it is unfortunately not the case that castrate resistance was never reached amongst the triplet therapy group in the ARASENS trial (if I am understanding you correctly). What was not reached by the time the data was analyzed (approximately four or five years after data collection started?) was the median time to castrate resistance. Median in statistics is the point at which a half-way mark is reached, kind of like the median in the middle of the road. It is the point in time where exactly half of the group reaches a given endpoint (in this case, castrate resistance), and the other half does not. By saying that the median time to castrate resistance has not been reached, they are basically saying that from the beginning of the study until the time of analysis, the point in time where half of the triplet group have become castrate resistant has not yet been reached. In other words, after four years, more than half of the individuals in the triplet therapy group have not reached castrate resistance (by that time, only 225 out of 651 - or 35% - of the triplet therapy participants had become castrate resistant).
I have attached the graph from the ARASENS trial for your reference, where you can see over time on average what the time to castrate resistance might look like over a four/five year period (for those with triplet therapy and those without).
Take care,
Phil
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1 ReactionI'll let you know in a few months. I am 3.7 years in and just entering the doubling zone. Which means my castrate sensitiveness is on the move. Thankfully we've, my oncologist, wife and I, have been mindfully watching this for the last 9 months and it's time to make a new plan. Appointment is tomorrow, thinking Step Up Bat trail.
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1 ReactionAre your stage 4 metastatic?
I am very sorry. Are you stage 4 metastatic? Did you by any chance have triplet therapy or did you do doublet therapy or your initial treatment?
Thank you Kevin,
I have had Genomic testing 2x and there were no genetic markers found. I am de novo metastatic stage 4. I was diagnosed on my Birthday 7/27/2022. The Cancer spread to the bone only (spin, pelvis, ribs). I was started on Casodex first and radiation (10 cycles to the spin) and 5 additional cycles to the ribs. After 30 days I was put on Eligard shots every 3 months) along with Nubeqa. I immediately started chemotherapy and completed 10 cycles (Docetaxel 3 weeks apart). I have very few side effects from the chemo other than extreme fatigue. Radiation was absolutely the worst and very difficult to endure. To date, I remain castrate sensitive with my PSA < 0.100. My oncologist says I have beaten the odds up to this point. So, I am castrate sensitive 2 years now and I will be checked again in 3 months. My treatment plan was patterned after the ARSENS study. But what I am learning is that no matter what, every man responds differently to treatment.
What a journey, impressive, your willingness to undertake the treatment!
I just got my labs back yesterday, PSA .01 and T 328.
I'll take those results after 12 months on Orgovyx and SBRT
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2 ReactionsYes since 2018. After MRI etc. and bone biopsy , cancer cells were found in bones.