At initiation of treatment in May 2024 my diagnosis was oligometastatic hormone sensitive prostatic cancer; GS (4+5)=9; iT3bN1M1A; NCCN Very high risk. As my current medical oncologist said, serious because it had metastasised to my pelvic region but not dire because it had metastasised to neither my bones nor my liver.
The Course of Treatment to date is:
Phase 1: 2024-04-25 to 2024-06-03: Eligard
Phase 2: 2024-06-04 to 2024-09-30: Eligard + Erleada
Phase 3: 2024-09-30 to 2024-10-25: Eligard + Erleada + Orgovyx
Phase 4: 2024-10-25 to 2024-11-17: Erleada + Orgovyx
Phase 5: 2024-11-18 to 2024-11-26: 5 Fractions of MRI Guided SBRT; Erleada + Orgovyx
Phase 6: 2024-11-27 to YYYY-MM-DD: Erleada + Orgovyx
The change from Eligard to Orgovyx was for logistical reasons since Orgovyx is a pill.
The effect of the hormone therapy on my PSA is as follows:
2023-08-21 17.5ng/mL
2023-09-25 18.5ng/mL
2024-03-28 37.3ng/mL (Three days before biopsy)
2024-04-28 ~40ng/mL (Day when initiated Eligard)
2024-05-17 25.0ng/mL (After 22 days of Eligard)
2024-06-28 2.01ng/mL
2024-08-26 0.39ng/mL
2024-09-10 0.19ng/mL
2024-10-10 0.14ng/mL
2024-11-11 0.09ng/mL
The decline in PSA along with a follow-up PSMA Ga68 PET/CT scan which showed the reduction or elimination of tumors in my pelvic region is most encouraging. By elimination I presume means reduction below the resolution of a PSMA scan if not complete elimination. Next labs will be in February since I presume the radiation precludes accurate labs for several months.
The hormone therapy has a minor effect on my quality-of-life. Perhaps a slight decrease in physical and mental energy at most. Not so for the five fractions of SBRT. Almost two weeks out and I little energy, mental or physical. In addition annoying urination/defecation issues, both predicted and both predicated to ameliorate in a few weeks. In the big picture trivial for staying alive.
I consider better than good results. First that I have prostate cancer and not a more lethal form of cancer. Esophageal cancer killed a boyhood friend within a year. Second that my prostate cancer became clinical when I was 82 years old and have lived a good life.
Hey old timer, your a great Secretary, I m impressed how you ve analyzed your predicament. Doing great for being in your 80s. No dementia in you: Mr. Einstein.
At initiation of treatment in May 2024 my diagnosis was oligometastatic hormone sensitive prostatic cancer; GS (4+5)=9; iT3bN1M1A; NCCN Very high risk. As my current medical oncologist said, serious because it had metastasised to my pelvic region but not dire because it had metastasised to neither my bones nor my liver.
The Course of Treatment to date is:
Phase 1: 2024-04-25 to 2024-06-03: Eligard
Phase 2: 2024-06-04 to 2024-09-30: Eligard + Erleada
Phase 3: 2024-09-30 to 2024-10-25: Eligard + Erleada + Orgovyx
Phase 4: 2024-10-25 to 2024-11-17: Erleada + Orgovyx
Phase 5: 2024-11-18 to 2024-11-26: 5 Fractions of MRI Guided SBRT; Erleada + Orgovyx
Phase 6: 2024-11-27 to YYYY-MM-DD: Erleada + Orgovyx
The change from Eligard to Orgovyx was for logistical reasons since Orgovyx is a pill.
The effect of the hormone therapy on my PSA is as follows:
2023-08-21 17.5ng/mL
2023-09-25 18.5ng/mL
2024-03-28 37.3ng/mL (Three days before biopsy)
2024-04-28 ~40ng/mL (Day when initiated Eligard)
2024-05-17 25.0ng/mL (After 22 days of Eligard)
2024-06-28 2.01ng/mL
2024-08-26 0.39ng/mL
2024-09-10 0.19ng/mL
2024-10-10 0.14ng/mL
2024-11-11 0.09ng/mL
The decline in PSA along with a follow-up PSMA Ga68 PET/CT scan which showed the reduction or elimination of tumors in my pelvic region is most encouraging. By elimination I presume means reduction below the resolution of a PSMA scan if not complete elimination. Next labs will be in February since I presume the radiation precludes accurate labs for several months.
The hormone therapy has a minor effect on my quality-of-life. Perhaps a slight decrease in physical and mental energy at most. Not so for the five fractions of SBRT. Almost two weeks out and I little energy, mental or physical. In addition annoying urination/defecation issues, both predicted and both predicated to ameliorate in a few weeks. In the big picture trivial for staying alive.
I consider better than good results. First that I have prostate cancer and not a more lethal form of cancer. Esophageal cancer killed a boyhood friend within a year. Second that my prostate cancer became clinical when I was 82 years old and have lived a good life.
At initiation of treatment in May 2024 my diagnosis was oligometastatic hormone sensitive prostatic cancer; GS (4+5)=9; iT3bN1M1A; NCCN Very high risk. As my current medical oncologist said, serious because it had metastasised to my pelvic region but not dire because it had metastasised to neither my bones nor my liver.
The Course of Treatment to date is:
Phase 1: 2024-04-25 to 2024-06-03: Eligard
Phase 2: 2024-06-04 to 2024-09-30: Eligard + Erleada
Phase 3: 2024-09-30 to 2024-10-25: Eligard + Erleada + Orgovyx
Phase 4: 2024-10-25 to 2024-11-17: Erleada + Orgovyx
Phase 5: 2024-11-18 to 2024-11-26: 5 Fractions of MRI Guided SBRT; Erleada + Orgovyx
Phase 6: 2024-11-27 to YYYY-MM-DD: Erleada + Orgovyx
The change from Eligard to Orgovyx was for logistical reasons since Orgovyx is a pill.
The effect of the hormone therapy on my PSA is as follows:
2023-08-21 17.5ng/mL
2023-09-25 18.5ng/mL
2024-03-28 37.3ng/mL (Three days before biopsy)
2024-04-28 ~40ng/mL (Day when initiated Eligard)
2024-05-17 25.0ng/mL (After 22 days of Eligard)
2024-06-28 2.01ng/mL
2024-08-26 0.39ng/mL
2024-09-10 0.19ng/mL
2024-10-10 0.14ng/mL
2024-11-11 0.09ng/mL
The decline in PSA along with a follow-up PSMA Ga68 PET/CT scan which showed the reduction or elimination of tumors in my pelvic region is most encouraging. By elimination I presume means reduction below the resolution of a PSMA scan if not complete elimination. Next labs will be in February since I presume the radiation precludes accurate labs for several months.
The hormone therapy has a minor effect on my quality-of-life. Perhaps a slight decrease in physical and mental energy at most. Not so for the five fractions of SBRT. Almost two weeks out and I little energy, mental or physical. In addition annoying urination/defecation issues, both predicted and both predicated to ameliorate in a few weeks. In the big picture trivial for staying alive.
I consider better than good results. First that I have prostate cancer and not a more lethal form of cancer. Esophageal cancer killed a boyhood friend within a year. Second that my prostate cancer became clinical when I was 82 years old and have lived a good life.
Hey rick, congratulations! You went thru a lot but came out better for it….one question I have: 5 fractions SBRT is usually associated with some form of CAT/MRI Cyberknife/Meridian treatment to the prostate gland.
But your cancer had spread to the pelvic region and even though the ADT shrunk those tumors to a size undetectable by PSMA, as you correctly point out - it doesn’t mean they are gone.
So why weren’t you given a more inclusive multi visit treatment with radiation that targets BOTH the gland and the pelvic region simultaneously - as in IGRT for salvage radiation?
I’m not an RO and probably displaying my ignorance here but did your doctor explain the ‘why’ to you? Just curious since I’ve met other men who’ve had similar cases and were given 25-39 lower dose treatments. Thanks!
"What are the latest treatment options besides radiation, Zytiga, Lipton? "
Zytiga is a first-generation ARSI from the 1990s. The second-generation ARSIs that have come out since about 2018 (Apalutamide, Darolutamide, Enzolutamide, and Flutamide, collectively known as the "lutamides") have shown dramatically-better results in many/most cases, both in overall survival and in slowing or preventing progression of the disease, but not every drug is available for every cancer situation, not everyone can tolerate them, and not every insurance plan in the U.S. will cover them, so it's important to have a conversation with your medical team.
To give one example, Apalutamide for mCSPC in the TITAN trial was so successful that they had to unblind the trial halfway through and make it available to the placebo group as well, because it would have been unethical to deny that group life-saving treatment. The study ended after 4½ years without reaching median overall survival yet, despite some of the participants having had fairly severe, high-load metastatic cancer at the beginning, and some having started on the placebo.
Beyond that, there have been significant advances in imaging and in treatment. Recognising "oligometastatic" as a separate category that can be treated aggressively with curative intent (that doesn't mean that it can be cured; just that it's worth trying) has been huge for those of us with stage 4b prostate cancer.
Using multiple attacks up-front at the same time (e.g. radiation, surgery, ADT, ARSI, and even chemo for high-load) has also made a difference in our survival prospects. And better radiation therapy, along with the ability to deliver radiation intravenously when metastases are widely scattered, all mean that even those of us diagnosed with stage 4b fairly young (I was 56 at time of diagnosis with oligometasatic PCa to my spine in 2021) at least have a shot at still living to old age now.
Note that all of these are things that the local urologist at the (non-teaching) hospital might not know about, depending on how much they keep up, so it's important to get to an interdisciplinary cancer research centre of some sort (e.g. a Center of Excellence in the U.S. or a regional Cancer Centre in Canada) to be sure of receiving the latest treatments.
Hey rick, congratulations! You went thru a lot but came out better for it….one question I have: 5 fractions SBRT is usually associated with some form of CAT/MRI Cyberknife/Meridian treatment to the prostate gland.
But your cancer had spread to the pelvic region and even though the ADT shrunk those tumors to a size undetectable by PSMA, as you correctly point out - it doesn’t mean they are gone.
So why weren’t you given a more inclusive multi visit treatment with radiation that targets BOTH the gland and the pelvic region simultaneously - as in IGRT for salvage radiation?
I’m not an RO and probably displaying my ignorance here but did your doctor explain the ‘why’ to you? Just curious since I’ve met other men who’ve had similar cases and were given 25-39 lower dose treatments. Thanks!
Good question. I misspoke there were two tumors detectable in my pelvis if left obturator lymph node is in the pelvis. The following is from the two scans before radiation therapy. I presume resolved means disappeared. My conclusion, if my understanding of the med speak is correct, is that the only tumors worth radiating were in the prostate and one or two very close to the prostate. So the radiation did, in fact, cover all. But perhaps your understanding of anatomy is better than mine. The MRI image I watched during radiation contained two areas. One was contained within the other, at some intervals touching and at other intervals with distinct separation. Since the radiation was three-dimensional the areas were projections but of what I do not know. Perhaps the inner was extent of radiation in one volume and the outer the extent of radiation in another.
2024-09-28 PSMA-Ga68-PET/CT w/IV Contrast
"History of oligometastatic prostate cancer with decreased PSMA uptake within the prostate, with a few remaining foci of intermediate uptake. Previously noted uptake within the seminal vesicles and a majority of the pelvic lymph nodes has resolved, with the exception of a left obturator lymph node and left pelvic sidewall lymph node, which now both exhibit intermediate PSMA. No evidence of new metastatic disease."
2024-11-08 1.5 T MRI OF THE PROSTATE WITH AND WITHOUT CONTRAST
"1. Previously seen PI-RADS 5 lesion in the left posterolateral peripheral zone is no longer seen on this exam, likely due to androgen deprivation therapy. No new suspicious lesions.
2. Similar appearance of left obturator lymph node measuring up to 5 mm compared to prior PET/CT."
Merry Holidays and Health, Wealth and Happiness in 2025!
Good question. I misspoke there were two tumors detectable in my pelvis if left obturator lymph node is in the pelvis. The following is from the two scans before radiation therapy. I presume resolved means disappeared. My conclusion, if my understanding of the med speak is correct, is that the only tumors worth radiating were in the prostate and one or two very close to the prostate. So the radiation did, in fact, cover all. But perhaps your understanding of anatomy is better than mine. The MRI image I watched during radiation contained two areas. One was contained within the other, at some intervals touching and at other intervals with distinct separation. Since the radiation was three-dimensional the areas were projections but of what I do not know. Perhaps the inner was extent of radiation in one volume and the outer the extent of radiation in another.
2024-09-28 PSMA-Ga68-PET/CT w/IV Contrast
"History of oligometastatic prostate cancer with decreased PSMA uptake within the prostate, with a few remaining foci of intermediate uptake. Previously noted uptake within the seminal vesicles and a majority of the pelvic lymph nodes has resolved, with the exception of a left obturator lymph node and left pelvic sidewall lymph node, which now both exhibit intermediate PSMA. No evidence of new metastatic disease."
2024-11-08 1.5 T MRI OF THE PROSTATE WITH AND WITHOUT CONTRAST
"1. Previously seen PI-RADS 5 lesion in the left posterolateral peripheral zone is no longer seen on this exam, likely due to androgen deprivation therapy. No new suspicious lesions.
2. Similar appearance of left obturator lymph node measuring up to 5 mm compared to prior PET/CT."
Merry Holidays and Health, Wealth and Happiness in 2025!
Thank you, Rick, that was my main question - about the pelvic lymph nodes - which are many.
I just received my final (yay!) report from Sloan and it stated: 6000 (Gys?) to prostate, 4500 to nodes. So since my PSMA showed nothing I got blasted thru and thru. Yours seemed to resolve in the nodes - except for those two areas - so I guess that’s why they used a more targeted approach?
Well, these things are for the RO’s to know and for US to ponder!
Merry, Happy - and HEALTHY - to you and all on the board!
Hey old timer, your a great Secretary, I m impressed how you ve analyzed your predicament. Doing great for being in your 80s. No dementia in you: Mr. Einstein.
Let me add that even bone oligometastatic prostate cancer isn't as "dire" as it used to be, either. The new treatment options are impressive.
What are the latest treatment options besides radiation, Zytiga, Lipton?
Hey rick, congratulations! You went thru a lot but came out better for it….one question I have: 5 fractions SBRT is usually associated with some form of CAT/MRI Cyberknife/Meridian treatment to the prostate gland.
But your cancer had spread to the pelvic region and even though the ADT shrunk those tumors to a size undetectable by PSMA, as you correctly point out - it doesn’t mean they are gone.
So why weren’t you given a more inclusive multi visit treatment with radiation that targets BOTH the gland and the pelvic region simultaneously - as in IGRT for salvage radiation?
I’m not an RO and probably displaying my ignorance here but did your doctor explain the ‘why’ to you? Just curious since I’ve met other men who’ve had similar cases and were given 25-39 lower dose treatments. Thanks!
"What are the latest treatment options besides radiation, Zytiga, Lipton? "
Zytiga is a first-generation ARSI from the 1990s. The second-generation ARSIs that have come out since about 2018 (Apalutamide, Darolutamide, Enzolutamide, and Flutamide, collectively known as the "lutamides") have shown dramatically-better results in many/most cases, both in overall survival and in slowing or preventing progression of the disease, but not every drug is available for every cancer situation, not everyone can tolerate them, and not every insurance plan in the U.S. will cover them, so it's important to have a conversation with your medical team.
To give one example, Apalutamide for mCSPC in the TITAN trial was so successful that they had to unblind the trial halfway through and make it available to the placebo group as well, because it would have been unethical to deny that group life-saving treatment. The study ended after 4½ years without reaching median overall survival yet, despite some of the participants having had fairly severe, high-load metastatic cancer at the beginning, and some having started on the placebo.
Beyond that, there have been significant advances in imaging and in treatment. Recognising "oligometastatic" as a separate category that can be treated aggressively with curative intent (that doesn't mean that it can be cured; just that it's worth trying) has been huge for those of us with stage 4b prostate cancer.
Using multiple attacks up-front at the same time (e.g. radiation, surgery, ADT, ARSI, and even chemo for high-load) has also made a difference in our survival prospects. And better radiation therapy, along with the ability to deliver radiation intravenously when metastases are widely scattered, all mean that even those of us diagnosed with stage 4b fairly young (I was 56 at time of diagnosis with oligometasatic PCa to my spine in 2021) at least have a shot at still living to old age now.
Note that all of these are things that the local urologist at the (non-teaching) hospital might not know about, depending on how much they keep up, so it's important to get to an interdisciplinary cancer research centre of some sort (e.g. a Center of Excellence in the U.S. or a regional Cancer Centre in Canada) to be sure of receiving the latest treatments.
@heavyphil
Good question. I misspoke there were two tumors detectable in my pelvis if left obturator lymph node is in the pelvis. The following is from the two scans before radiation therapy. I presume resolved means disappeared. My conclusion, if my understanding of the med speak is correct, is that the only tumors worth radiating were in the prostate and one or two very close to the prostate. So the radiation did, in fact, cover all. But perhaps your understanding of anatomy is better than mine. The MRI image I watched during radiation contained two areas. One was contained within the other, at some intervals touching and at other intervals with distinct separation. Since the radiation was three-dimensional the areas were projections but of what I do not know. Perhaps the inner was extent of radiation in one volume and the outer the extent of radiation in another.
2024-09-28 PSMA-Ga68-PET/CT w/IV Contrast
"History of oligometastatic prostate cancer with decreased PSMA uptake within the prostate, with a few remaining foci of intermediate uptake. Previously noted uptake within the seminal vesicles and a majority of the pelvic lymph nodes has resolved, with the exception of a left obturator lymph node and left pelvic sidewall lymph node, which now both exhibit intermediate PSMA. No evidence of new metastatic disease."
2024-11-08 1.5 T MRI OF THE PROSTATE WITH AND WITHOUT CONTRAST
"1. Previously seen PI-RADS 5 lesion in the left posterolateral peripheral zone is no longer seen on this exam, likely due to androgen deprivation therapy. No new suspicious lesions.
2. Similar appearance of left obturator lymph node measuring up to 5 mm compared to prior PET/CT."
Merry Holidays and Health, Wealth and Happiness in 2025!
Fantastic information. Truly appreciate everyone’s experience and input!
Thank you, Rick, that was my main question - about the pelvic lymph nodes - which are many.
I just received my final (yay!) report from Sloan and it stated: 6000 (Gys?) to prostate, 4500 to nodes. So since my PSMA showed nothing I got blasted thru and thru. Yours seemed to resolve in the nodes - except for those two areas - so I guess that’s why they used a more targeted approach?
Well, these things are for the RO’s to know and for US to ponder!
Merry, Happy - and HEALTHY - to you and all on the board!