11 anniversaries since diagnosis of stage 4 prostate cancer

Thank God! Your story is very encouraging. I am denovo stage 4 prostate cancer high volume to the bone only (spin, ribs, pelvis). I was diagnosed on my birthday 07/27 in 2022. So, I am almost at my 2nd anniversary. Since age 50, I required my PSA to be tested every one to two years. There was never any concern. My highest PSA was 2.9. In March 2021, my last PSA before being diagnosed with cancer 16 months later, my PSA was 2.0 and my prostate was normal and even smaller than expected for my age. My Journey with prostate cancer then started in May 2022 when I contracted COVID after 3 Pfizer vaccines right after my March 2021 PSA of 2.0. While I was ill with Covid in May 2022 and started PaxLovid, I suddenly developed severe back pain. I was in constant agony and was unable to lay on my back for over 2 months. I had to try to sleep sitting up on couch surrounded by pillows to try to keep myself upright. Laying down was impossible. After 3 emergency room visits with no definitive diagnosis, it was determined my gall bladder needed to be removed. By the time that was determined, I was in so much agony that I required hospitalization and emergency surgery to remove my gall bladder. Rather than getting better, I got worse and severe back pain continued. A lumbar MRI that I was in too much pain to lie still for revealed bone metastases throughout the spine. I was rushed back to the emergency department and was hospitalized again. I had no idea what primary cancer could have caused the bone metastases and I requested a PSA upon admission. The PSA was 32 then 25 then 28. I had a bone scan and a bone biopsy from my hip. Testing detected additional metastases to the ribs, hips, collar bone, left knee, femurs, and cranium. Pathology confirmed Adenocarcinoma and primary Prostate Cancer. That was July, 27, 2022, my 60th birthday. I was immediately started on Casodex and radiation to the spine (10 cycles) and ribs (5 cycles) to stop the agony I was in. After radiation and Casodex for 30 days, I was started on Eligard (3 month injection) and Darolutamide (Nubeqa). Oct 11, 2022, I started docetaxal Chemotheropy. My PSA had dropped to down 1.005. My PSA dropped very slowly during Chemotheropy. On my 4th cycle on Chemotherapy my PSA rose from 0.6 to 0.7. I was justifiably concerned. After the 5th cycle, my PSA dropped to 0.53. After my 6th cycle of Chemotherapy my PSA dropped to 0.384. My doctor and I decided to continue to a full 10 cycles of chemotherapy because I had very few side effects other than fatigue. After the 10th cycle, my PSA dropped to 0.234. After chemotherapy, my PSA continued to drop to undetectable. I have remained undetectable ever since. So, it took me between almost a year to get to a PSA < 0.100. When I was going through treatment and my PSA was dropping slowly it frustrated and scared me. One of my oncologists said that PSA's drop for men with prostate cancer in three ways. For some, the PSA drops rapidly, for others it drops and then it starts to rise due to resistance, and the third type drop slow and steady. I am obviously the third type. I read an NIH study from 2017, "Rapidly decreasing level of prostate-specific antigen during initial androgen deprivation therapy is a risk factor for early progression to castration-resistant prostate cancer." Nonetheless, I remain troubled by how rapidly the cancer I am battling emerged seemingly out of nowhere. The literature on denovo metastatic prostate cancer does not explain what happened to me. Denovo metastatic prostate cancer purportedly occurs in men who do not monitor their prostate health and PSA, or have a rising PSA or high PSA and do nothing about it. They are usually older than I am and usually do not have adequate health insurance nor adequate utilization of health professionals. They are usually not financially stable and lack resources for adequate health care. They typically do not go to doctors frequently nor follow the recommendation of doctors when they do. They typically have some form of bad genetic player like BRCA1 or BRCA2 of it's cousins. None of that it true for me. I have no known bad genetic actors and no family history of prostate cancer. I did everything recommended to protect my prostate cancer health. Despite all of that, in a brief 16 month period of time I went from a small prostate with a PSA of 2.0 to a PSAs of 32, 25, 28, agonizing pain, and high volume widespread bone metastases. Because I was in so much pain and denovo metastatic stage 4, I never received a prostate biopsy. I have no Gleason score, nor cancer grade. I have no idea how diseased my prostate was or remains. My gut tells me to do more. To get metastasis directed therapy for the bone mets and to deal directly with the prostate. This is the approach of Eugene Kwon and other prostate cancer researchers. I continue researching and searching for answers. It frustrates me that the approach of systemic and directed therapy is only available for oligometastic PcA, 5 or less metastases. There is an ongoing study SABR COMET 10 that is taking this approach for up to 10 metastases. Hopkins had a study with men with up to 9 metastases upon PSMA PET were allowed to remain in a study for oligometastatic directed treatment. There is not consensus regarding how to define oligometastatic. I hope someday the definition will change to overall volume or the number of treatable metastases increases so I can receive systemic and metastasis directed treatment and treatment of the prostate. I am a man of faith. I could not get through this without my faith. I pray for scientific breakthroughs and miracles. The long time director of NIH's Cancer Institute recently retired after more than 40 years there searching for how to understand and replicate why some with metastatic stage 4 cancer spontaneously are cured. He reports seeing a variety of types of stage 4 cancer suddenly just disappear and he dedicated his career at NIH to find out how this happens and how to make it happen for all cancer patients. His emphasis is powering up the immune system to successfully fight back. There is always hope.

Thank God! Your story is very encouraging. I am denovo stage 4 prostate cancer high volume to the bone only (spin, ribs, pelvis). I was diagnosed on my birthday 07/27 in 2022. So, I am almost at my 2nd anniversary. Since age 50, I required my PSA to be tested every one to two years. There was never any concern. My highest PSA was 2.9. In March 2021, my last PSA before being diagnosed with cancer 16 months later, my PSA was 2.0 and my prostate was normal and even smaller than expected for my age. My Journey with prostate cancer then started in May 2022 when I contracted COVID after 3 Pfizer vaccines right after my March 2021 PSA of 2.0. While I was ill with Covid in May 2022 and started PaxLovid, I suddenly developed severe back pain. I was in constant agony and was unable to lay on my back for over 2 months. I had to try to sleep sitting up on couch surrounded by pillows to try to keep myself upright. Laying down was impossible. After 3 emergency room visits with no definitive diagnosis, it was determined my gall bladder needed to be removed. By the time that was determined, I was in so much agony that I required hospitalization and emergency surgery to remove my gall bladder. Rather than getting better, I got worse and severe back pain continued. A lumbar MRI that I was in too much pain to lie still for revealed bone metastases throughout the spine. I was rushed back to the emergency department and was hospitalized again. I had no idea what primary cancer could have caused the bone metastases and I requested a PSA upon admission. The PSA was 32 then 25 then 28. I had a bone scan and a bone biopsy from my hip. Testing detected additional metastases to the ribs, hips, collar bone, left knee, femurs, and cranium. Pathology confirmed Adenocarcinoma and primary Prostate Cancer. That was July, 27, 2022, my 60th birthday. I was immediately started on Casodex and radiation to the spine (10 cycles) and ribs (5 cycles) to stop the agony I was in. After radiation and Casodex for 30 days, I was started on Eligard (3 month injection) and Darolutamide (Nubeqa). Oct 11, 2022, I started docetaxal Chemotheropy. My PSA had dropped to down 1.005. My PSA dropped very slowly during Chemotheropy. On my 4th cycle on Chemotherapy my PSA rose from 0.6 to 0.7. I was justifiably concerned. After the 5th cycle, my PSA dropped to 0.53. After my 6th cycle of Chemotherapy my PSA dropped to 0.384. My doctor and I decided to continue to a full 10 cycles of chemotherapy because I had very few side effects other than fatigue. After the 10th cycle, my PSA dropped to 0.234. After chemotherapy, my PSA continued to drop to undetectable. I have remained undetectable ever since. So, it took me between almost a year to get to a PSA < 0.100. When I was going through treatment and my PSA was dropping slowly it frustrated and scared me. One of my oncologists said that PSA's drop for men with prostate cancer in three ways. For some, the PSA drops rapidly, for others it drops and then it starts to rise due to resistance, and the third type drop slow and steady. I am obviously the third type. I read an NIH study from 2017, "Rapidly decreasing level of prostate-specific antigen during initial androgen deprivation therapy is a risk factor for early progression to castration-resistant prostate cancer." Nonetheless, I remain troubled by how rapidly the cancer I am battling emerged seemingly out of nowhere. The literature on denovo metastatic prostate cancer does not explain what happened to me. Denovo metastatic prostate cancer purportedly occurs in men who do not monitor their prostate health and PSA, or have a rising PSA or high PSA and do nothing about it. They are usually older than I am and usually do not have adequate health insurance nor adequate utilization of health professionals. They are usually not financially stable and lack resources for adequate health care. They typically do not go to doctors frequently nor follow the recommendation of doctors when they do. They typically have some form of bad genetic player like BRCA1 or BRCA2 of it's cousins. None of that it true for me. I have no known bad genetic actors and no family history of prostate cancer. I did everything recommended to protect my prostate cancer health. Despite all of that, in a brief 16 month period of time I went from a small prostate with a PSA of 2.0 to a PSAs of 32, 25, 28, agonizing pain, and high volume widespread bone metastases. Because I was in so much pain and denovo metastatic stage 4, I never received a prostate biopsy. I have no Gleason score, nor cancer grade. I have no idea how diseased my prostate was or remains. My gut tells me to do more. To get metastasis directed therapy for the bone mets and to deal directly with the prostate. This is the approach of Eugene Kwon and other prostate cancer researchers. I continue researching and searching for answers. It frustrates me that the approach of systemic and directed therapy is only available for oligometastic PcA, 5 or less metastases. There is an ongoing study SABR COMET 10 that is taking this approach for up to 10 metastases. Hopkins had a study with men with up to 9 metastases upon PSMA PET were allowed to remain in a study for oligometastatic directed treatment. There is not consensus regarding how to define oligometastatic. I hope someday the definition will change to overall volume or the number of treatable metastases increases so I can receive systemic and metastasis directed treatment and treatment of the prostate. I am a man of faith. I could not get through this without my faith. I pray for scientific breakthroughs and miracles. The long time director of NIH's Cancer Institute recently retired after more than 40 years there searching for how to understand and replicate why some with metastatic stage 4 cancer spontaneously are cured. He reports seeing a variety of types of stage 4 cancer suddenly just disappear and he dedicated his career at NIH to find out how this happens and how to make it happen for all cancer patients. His emphasis is powering up the immune system to successfully fight back. There is always hope.

Bless you. How long has it been since you you were diagnosed? My 2 year anniversary is coming up. For a mid 80's guy I'm doing very good but I wonder sometimes.

Thank God! Your story is very encouraging. I am denovo stage 4 prostate cancer high volume to the bone only (spin, ribs, pelvis). I was diagnosed on my birthday 07/27 in 2022. So, I am almost at my 2nd anniversary. Since age 50, I required my PSA to be tested every one to two years. There was never any concern. My highest PSA was 2.9. In March 2021, my last PSA before being diagnosed with cancer 16 months later, my PSA was 2.0 and my prostate was normal and even smaller than expected for my age. My Journey with prostate cancer then started in May 2022 when I contracted COVID after 3 Pfizer vaccines right after my March 2021 PSA of 2.0. While I was ill with Covid in May 2022 and started PaxLovid, I suddenly developed severe back pain. I was in constant agony and was unable to lay on my back for over 2 months. I had to try to sleep sitting up on couch surrounded by pillows to try to keep myself upright. Laying down was impossible. After 3 emergency room visits with no definitive diagnosis, it was determined my gall bladder needed to be removed. By the time that was determined, I was in so much agony that I required hospitalization and emergency surgery to remove my gall bladder. Rather than getting better, I got worse and severe back pain continued. A lumbar MRI that I was in too much pain to lie still for revealed bone metastases throughout the spine. I was rushed back to the emergency department and was hospitalized again. I had no idea what primary cancer could have caused the bone metastases and I requested a PSA upon admission. The PSA was 32 then 25 then 28. I had a bone scan and a bone biopsy from my hip. Testing detected additional metastases to the ribs, hips, collar bone, left knee, femurs, and cranium. Pathology confirmed Adenocarcinoma and primary Prostate Cancer. That was July, 27, 2022, my 60th birthday. I was immediately started on Casodex and radiation to the spine (10 cycles) and ribs (5 cycles) to stop the agony I was in. After radiation and Casodex for 30 days, I was started on Eligard (3 month injection) and Darolutamide (Nubeqa). Oct 11, 2022, I started docetaxal Chemotheropy. My PSA had dropped to down 1.005. My PSA dropped very slowly during Chemotheropy. On my 4th cycle on Chemotherapy my PSA rose from 0.6 to 0.7. I was justifiably concerned. After the 5th cycle, my PSA dropped to 0.53. After my 6th cycle of Chemotherapy my PSA dropped to 0.384. My doctor and I decided to continue to a full 10 cycles of chemotherapy because I had very few side effects other than fatigue. After the 10th cycle, my PSA dropped to 0.234. After chemotherapy, my PSA continued to drop to undetectable. I have remained undetectable ever since. So, it took me between almost a year to get to a PSA < 0.100. When I was going through treatment and my PSA was dropping slowly it frustrated and scared me. One of my oncologists said that PSA's drop for men with prostate cancer in three ways. For some, the PSA drops rapidly, for others it drops and then it starts to rise due to resistance, and the third type drop slow and steady. I am obviously the third type. I read an NIH study from 2017, "Rapidly decreasing level of prostate-specific antigen during initial androgen deprivation therapy is a risk factor for early progression to castration-resistant prostate cancer." Nonetheless, I remain troubled by how rapidly the cancer I am battling emerged seemingly out of nowhere. The literature on denovo metastatic prostate cancer does not explain what happened to me. Denovo metastatic prostate cancer purportedly occurs in men who do not monitor their prostate health and PSA, or have a rising PSA or high PSA and do nothing about it. They are usually older than I am and usually do not have adequate health insurance nor adequate utilization of health professionals. They are usually not financially stable and lack resources for adequate health care. They typically do not go to doctors frequently nor follow the recommendation of doctors when they do. They typically have some form of bad genetic player like BRCA1 or BRCA2 of it's cousins. None of that it true for me. I have no known bad genetic actors and no family history of prostate cancer. I did everything recommended to protect my prostate cancer health. Despite all of that, in a brief 16 month period of time I went from a small prostate with a PSA of 2.0 to a PSAs of 32, 25, 28, agonizing pain, and high volume widespread bone metastases. Because I was in so much pain and denovo metastatic stage 4, I never received a prostate biopsy. I have no Gleason score, nor cancer grade. I have no idea how diseased my prostate was or remains. My gut tells me to do more. To get metastasis directed therapy for the bone mets and to deal directly with the prostate. This is the approach of Eugene Kwon and other prostate cancer researchers. I continue researching and searching for answers. It frustrates me that the approach of systemic and directed therapy is only available for oligometastic PcA, 5 or less metastases. There is an ongoing study SABR COMET 10 that is taking this approach for up to 10 metastases. Hopkins had a study with men with up to 9 metastases upon PSMA PET were allowed to remain in a study for oligometastatic directed treatment. There is not consensus regarding how to define oligometastatic. I hope someday the definition will change to overall volume or the number of treatable metastases increases so I can receive systemic and metastasis directed treatment and treatment of the prostate. I am a man of faith. I could not get through this without my faith. I pray for scientific breakthroughs and miracles. The long time director of NIH's Cancer Institute recently retired after more than 40 years there searching for how to understand and replicate why some with metastatic stage 4 cancer spontaneously are cured. He reports seeing a variety of types of stage 4 cancer suddenly just disappear and he dedicated his career at NIH to find out how this happens and how to make it happen for all cancer patients. His emphasis is powering up the immune system to successfully fight back. There is always hope.