I too have stage 4, Gleason 9. Metastasized to hip,left leg bone spine and spots on rib bones. I have had your meds and chemo. I just finished my 6th treatment of Pluvicto. I'm taking daily Abiraterone and prednisone. Quarterly eligard, monthly zometa infusion for bones a daily pill for hot flashes and numerous supplements and vitamins. I found out in December 2020 and stated the treatments and fighting this cancer in 2021. I started out with my PSA at 1,834 and about 10 days ago it was down to 7.9
I will continue the fighting and treatments to be with my family
Best wishes to all of us "fighters" and survivors.
I would love to talk more to you. My dad was diagnosed with stage 4 back in April. I would love to hear more about your plan, chemo . We haven’t been able to find anyone to talk to that’s there and knows. Please contact me.
There are people here in the forum who've passed their 10th anniversary with stage 4 prostate cancer and are still going strong.
I've had stage 4 since 2021 myself, and have experienced no progression since then — my PSA remains undetectable (< 0.01). I had the following treatments:
- emergency debulking surgery to the lesion that was compressing my spine
- ADT (Firmagon, then Orgovyx) and ARSI (Erleada) since October 2021, ongoing
- 20 gy of post-op of radiation (SBRT) to my spine
- 60 gy of radiation (SBRT) to my prostate
The advances in my treatment (vs, say, 10 years ago) are the addition of a 2nd-gen ARSI (Erleada), which significantly slows progression and improves overall survival, and recognising my cancer as "oligometastatic" and treating it aggressively instead of just providing palliative care, as used to be routine for stage 4.
I am under the care of a large Canadian Cancer Centre, but I should acknowledge that our hosts at Mayo played an important role in standardising more-aggressive treatments for stage 4 prostate cancer like mine rather than just "keeping me comfortable."
@lorenze76, you'll notice that I removed your personal email address. Connect is a public forum. It is better to share personal contact information using the secure private message function.
However, I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Prostate Cancer support group you benefit from the knowledge and experience of many members.
Lorenze, how is your dad doing? Is he currently on treatment?
Two examples of hope:
1) I was diagnosed with stage four prostate cancer, Gleeson score 10, 4 cm tumor on my prostate, involvement of other areas in my pelvic region, and metastasis to my pelvic lymph nodes and lymph node in my chest. My Big Ten University doc would not offer me chemotherapy, stating it was not effective. My wife found Dr. Eugene Kwon, at Mayo clinic Rochester, Minnesota. He continued my Lupron, added chemotherapy through Minnesota Oncology and radiation through Mail clinic. I have been clear for 18 months.
2)I Became friends with another patient under Dr. Kwon. He had stage four PC with many bone metastases and a PSA of 3400. (Yes that is correct.) He Is currently clear also. He required additional treatment of chemotherapy with Lutecium. I highly recommend you check out the YouTube videos of Dr. Kwon. Just searc on his name and prostate cancer.
We are not patients with a rare outcome. Quite the contrary.
Dr. Kwon is frequently in the PCRI videos. He’s very knowledgeable and seems to have a lot of steps that can be taken depending on the treatment needed.
He is only a urologist, not a Genito urinary oncologist. The people who run Ancan.org are not real pleased with how he has treated all patients. In many cases, he has not started people on drugs that were really essential for their situation. Many people that have used Dr. Kwon have come to advanced prostate cancer meetings at Ancan and have found their treatment is lacking in some respects.
It might be the doctor Kwon has too much going on, don’t really know for sure but getting treatment from a Genito urinary oncologist could be preferable.
Dr. Kwon is frequently in the PCRI videos. He’s very knowledgeable and seems to have a lot of steps that can be taken depending on the treatment needed.
He is only a urologist, not a Genito urinary oncologist. The people who run Ancan.org are not real pleased with how he has treated all patients. In many cases, he has not started people on drugs that were really essential for their situation. Many people that have used Dr. Kwon have come to advanced prostate cancer meetings at Ancan and have found their treatment is lacking in some respects.
It might be the doctor Kwon has too much going on, don’t really know for sure but getting treatment from a Genito urinary oncologist could be preferable.
Thank you for your information and response. More information is a good thing and I’ll have to look up that organization. I should note that Dr. Kwon does bring in other specialist in radiology oncology and surgery. My chemo treatment was directed through a referral to Dr. Vladimir Hugec at Minnesota Oncology. I am very glad to be in remission and my friend is also.
I would love to talk more to you. My dad was diagnosed with stage 4 back in April. I would love to hear more about your plan, chemo . We haven’t been able to find anyone to talk to that’s there and knows. Please contact me.
Good evening,
I have no issues talking with you.
I was busy today and tomorrow I will give my neighbors a ride the airport. Private message me and I will give you my cell number
Thursday I meet with my oncologist
Two examples of hope:
1) I was diagnosed with stage four prostate cancer, Gleeson score 10, 4 cm tumor on my prostate, involvement of other areas in my pelvic region, and metastasis to my pelvic lymph nodes and lymph node in my chest. My Big Ten University doc would not offer me chemotherapy, stating it was not effective. My wife found Dr. Eugene Kwon, at Mayo clinic Rochester, Minnesota. He continued my Lupron, added chemotherapy through Minnesota Oncology and radiation through Mail clinic. I have been clear for 18 months.
2)I Became friends with another patient under Dr. Kwon. He had stage four PC with many bone metastases and a PSA of 3400. (Yes that is correct.) He Is currently clear also. He required additional treatment of chemotherapy with Lutecium. I highly recommend you check out the YouTube videos of Dr. Kwon. Just searc on his name and prostate cancer.
We are not patients with a rare outcome. Quite the contrary.
Two examples of hope:
1) I was diagnosed with stage four prostate cancer, Gleeson score 10, 4 cm tumor on my prostate, involvement of other areas in my pelvic region, and metastasis to my pelvic lymph nodes and lymph node in my chest. My Big Ten University doc would not offer me chemotherapy, stating it was not effective. My wife found Dr. Eugene Kwon, at Mayo clinic Rochester, Minnesota. He continued my Lupron, added chemotherapy through Minnesota Oncology and radiation through Mail clinic. I have been clear for 18 months.
2)I Became friends with another patient under Dr. Kwon. He had stage four PC with many bone metastases and a PSA of 3400. (Yes that is correct.) He Is currently clear also. He required additional treatment of chemotherapy with Lutecium. I highly recommend you check out the YouTube videos of Dr. Kwon. Just searc on his name and prostate cancer.
We are not patients with a rare outcome. Quite the contrary.
Big fan of Dr. Kwon! PSA was rising fast by mid-2022. Then age 72. Researched biopsy methods and was impressed with Mayo’s methodology. Met with Dr. Kwon in October 2022. Biopsy and PET scan findings diagnosed stage IVB “CT3a, CN1, CM1a, PSA 23.4, Grade Group 5”. Spread to pelvis and lymph nodes, including chest area. Started Lupron injections every three months. Later changed to monthly shots. Did six chemo sessions (Taxotere) at Minnesota Oncology where I also started Nubeqa. Then did 26 sessions of “intensity modulated radiotherapy
” at Mayo Northfield, ending In May 2023. Lupron ended Feb 2024 after 13 months. Continuing Nubeqa. Strength returning as T rises. PET scans every three months have been clear.
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I would love to talk more to you. My dad was diagnosed with stage 4 back in April. I would love to hear more about your plan, chemo . We haven’t been able to find anyone to talk to that’s there and knows. Please contact me.
My dad was diagnosed in April with stage 4 and I’d love to discuss with you and maybe we can share experiences.
Please reach out to me.
My dad was diagnosed in April and we need someone to talk to. Thanks
@lorenze76, you'll notice that I removed your personal email address. Connect is a public forum. It is better to share personal contact information using the secure private message function.
However, I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Prostate Cancer support group you benefit from the knowledge and experience of many members.
Lorenze, how is your dad doing? Is he currently on treatment?
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Helpful -
Hug
1 ReactionDr. Kwon is frequently in the PCRI videos. He’s very knowledgeable and seems to have a lot of steps that can be taken depending on the treatment needed.
He is only a urologist, not a Genito urinary oncologist. The people who run Ancan.org are not real pleased with how he has treated all patients. In many cases, he has not started people on drugs that were really essential for their situation. Many people that have used Dr. Kwon have come to advanced prostate cancer meetings at Ancan and have found their treatment is lacking in some respects.
It might be the doctor Kwon has too much going on, don’t really know for sure but getting treatment from a Genito urinary oncologist could be preferable.
Thank you for your information and response. More information is a good thing and I’ll have to look up that organization. I should note that Dr. Kwon does bring in other specialist in radiology oncology and surgery. My chemo treatment was directed through a referral to Dr. Vladimir Hugec at Minnesota Oncology. I am very glad to be in remission and my friend is also.
Exactly. Health is all about moderation, not complete self-denial.
Good evening,
I have no issues talking with you.
I was busy today and tomorrow I will give my neighbors a ride the airport. Private message me and I will give you my cell number
Thursday I meet with my oncologist
That's so great to hear. Thank you for you share
I like those lifes journey
Big fan of Dr. Kwon! PSA was rising fast by mid-2022. Then age 72. Researched biopsy methods and was impressed with Mayo’s methodology. Met with Dr. Kwon in October 2022. Biopsy and PET scan findings diagnosed stage IVB “CT3a, CN1, CM1a, PSA 23.4, Grade Group 5”. Spread to pelvis and lymph nodes, including chest area. Started Lupron injections every three months. Later changed to monthly shots. Did six chemo sessions (Taxotere) at Minnesota Oncology where I also started Nubeqa. Then did 26 sessions of “intensity modulated radiotherapy
” at Mayo Northfield, ending In May 2023. Lupron ended Feb 2024 after 13 months. Continuing Nubeqa. Strength returning as T rises. PET scans every three months have been clear.
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Helpful -
Hug
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