@robertov
I started with PSA 143 end of December. I started Ogovyx and Nubeca January 1st. It went down to 9.6 at the end of January and 2.4 at the end of February. So far so good.
@jeffmarc that too is confusing medical speak,
PROSTATE AND SEMINAL VESICLES, RADICAL PROSTATECTOMY: - PROSTATIC ADENOCARCINOMA, GLEASON GRADE 3+4 = 7 (GRADE GROUP 2) - CARCINOMA INVOLVES BOTH SIDES OF PROSTATE, AND APPROXIMATELY 15% OF PROSTATIC TISSUE - NON-FOCAL EXTRAPROSTATIC EXTENSION BY CARCINOMA IS IDENTIFIED - BILATERAL SEMINAL VESICLES ARE FREE OF CARCINOMA.
Then I “think” they took 7 lymph nodes and they were negative?
LYMPH NODES, LEFT PELVIC, DISSECTION: FOUR LYMPH NODES, NEGATIVE FOR METASTATIC CARCINOMA (0/4)
LYMPH NODES, RIGHT PELVIC, DISSECTION: - THREE LYMPH NODES, NEGATIVE FOR METASTATIC CARCINOMA (0/3)
@mcnite yes it is a bit over whelming. Lots of new medical terminology...but essentially this:
you have a somewhat aggressive Gleason 7 cancer...but many have more aggressive and lived a long time...you will be given ADT therapy ( prob Orgovyx-one a day..first month is tough usually getting used to side effects+ another 2nd gen drug prob)
PSA will usually drop dramatically in first 3 months w/ ORGOVYX !
after 3 months you will prob get 9 weeks of radiation ( 45 sessions)
Lots to learn- start exercise program, start eating healthy foods, educate yourself and make sure your docs talk to you and tell you what is happening...welcome to the club...lots of info on this site..but make sure your questions are coherent...you will be rewarded..we are on your side.. good luck !
@robertov
I started with PSA 143 end of December. I started Ogovyx and Nubeca January 1st. It went down to 9.6 at the end of January and 2.4 at the end of February. So far so good.
@mcnite yes it is a bit over whelming. Lots of new medical terminology...but essentially this:
you have a somewhat aggressive Gleason 7 cancer...but many have more aggressive and lived a long time...you will be given ADT therapy ( prob Orgovyx-one a day..first month is tough usually getting used to side effects+ another 2nd gen drug prob)
PSA will usually drop dramatically in first 3 months w/ ORGOVYX !
after 3 months you will prob get 9 weeks of radiation ( 45 sessions)
Lots to learn- start exercise program, start eating healthy foods, educate yourself and make sure your docs talk to you and tell you what is happening...welcome to the club...lots of info on this site..but make sure your questions are coherent...you will be rewarded..we are on your side.. good luck !
@xahnegrey40 thank you. I just finished month one of Orgovyx and PSA went from 2.7 to .13 Only side effect (that I see) so far is hot flashes. I don’t know the next drug after radiation. Radiation is 39 weeks and I’ve been marked just waiting to start, they said about two weeks. I’ve always gotten along without exercise but now I’m following their advice as far as exercise. Eating better will be challenging. Thank you for your comments.
My husband and I went for a first meeting with Stanford RO Dr. Buyyounoski . I requested for Decipher, Hereditary tests and Prostox and he got irritated by my requests. Basically he meant they were not necessary based off his long experience of treating patients with radiation. I am surprised why he said so. All I hear on support groups and videos on the prostate topic that they are necessary especially given my husband's Gleason 9 diagnoses. His cancer is very aggressive high grade and yet RO was sure there was no need to do any of those tests. I know these tests are perhaps ordered by medical oncology or urology team but deny their value was strange. He said my husband will need one session of LDR Brachytherapy and 23 days of IMRT and lymph nodes will be radiated even if PSMA confirms the cancer is very much contained with prostate which makes sense because PSMA PET can miss micro spread outside. RO was eager for us to start off with hormone therapy ASAP and by middle of May 2026 he suggested that we start radiation. We still have to meet Dr. Mach Roach who seems to have very good reputation and I heard a few people praise him very much. It is very distressing when RO talk more like doing business with patients and glossing over all the negative side-effects of radiation and ADT by not willing to address them honestly. Thanks to support groups, AI and videos on the topic patients already know how difficult ADT journey is going to be. Any feedback on who will be better choice between him and Dr. Mach Roach UCSF?
@jeffmarc
I'm metastatic with nodgels in my lungs, thyroid and some bone. This was after robotic surgery in May, 2016
After two PSA tests that showed under .2 I had no more PSA test after they asurred me It was eliminated. In 2022 and 2024 it was missed from scans by me and primary care Doctor. Finally had a pet scan, biopsys that showed the spread.
@jeffmarc
I'm metastatic with nodgels in my lungs, thyroid and some bone. This was after robotic surgery in May, 2016
After two PSA tests that showed under .2 I had no more PSA test after they asurred me It was eliminated. In 2022 and 2024 it was missed from scans by me and primary care Doctor. Finally had a pet scan, biopsys that showed the spread.
@bobbybaby
Time for chemo or Pluvicto. Yes they can put you on ADT and an ARPI at the same time but those are the treatments when there’s multiple metastasis.
@bobbybaby
Time for chemo or Pluvicto. Yes they can put you on ADT and an ARPI at the same time but those are the treatments when there’s multiple metastasis.
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Mine was 0.84 -> 0.41 at 3 and 6 months and then < 0.1 after radiation (I attribute that to Orgovyx).
@robertov
I started with PSA 143 end of December. I started Ogovyx and Nubeca January 1st. It went down to 9.6 at the end of January and 2.4 at the end of February. So far so good.
-
Like -
Helpful -
Hug
1 Reaction@mcnite yes it is a bit over whelming. Lots of new medical terminology...but essentially this:
you have a somewhat aggressive Gleason 7 cancer...but many have more aggressive and lived a long time...you will be given ADT therapy ( prob Orgovyx-one a day..first month is tough usually getting used to side effects+ another 2nd gen drug prob)
PSA will usually drop dramatically in first 3 months w/ ORGOVYX !
after 3 months you will prob get 9 weeks of radiation ( 45 sessions)
Lots to learn- start exercise program, start eating healthy foods, educate yourself and make sure your docs talk to you and tell you what is happening...welcome to the club...lots of info on this site..but make sure your questions are coherent...you will be rewarded..we are on your side.. good luck !
-
Like -
Helpful -
Hug
1 Reaction@bobbybaby
Have you had your testosterone checked? Is it below 20?
Hopefully your PSA continues to go down, It should be undetectable soon.
Have you had a PSMA PET scan To see if there are any tumors in your body?
Have you had your primary treatment for prostate cancer?
@bobbybaby
I hope I'm not finished.
@xahnegrey40 thank you. I just finished month one of Orgovyx and PSA went from 2.7 to .13 Only side effect (that I see) so far is hot flashes. I don’t know the next drug after radiation. Radiation is 39 weeks and I’ve been marked just waiting to start, they said about two weeks. I’ve always gotten along without exercise but now I’m following their advice as far as exercise. Eating better will be challenging. Thank you for your comments.
-
Like -
Helpful -
Hug
1 ReactionMy husband and I went for a first meeting with Stanford RO Dr. Buyyounoski . I requested for Decipher, Hereditary tests and Prostox and he got irritated by my requests. Basically he meant they were not necessary based off his long experience of treating patients with radiation. I am surprised why he said so. All I hear on support groups and videos on the prostate topic that they are necessary especially given my husband's Gleason 9 diagnoses. His cancer is very aggressive high grade and yet RO was sure there was no need to do any of those tests. I know these tests are perhaps ordered by medical oncology or urology team but deny their value was strange. He said my husband will need one session of LDR Brachytherapy and 23 days of IMRT and lymph nodes will be radiated even if PSMA confirms the cancer is very much contained with prostate which makes sense because PSMA PET can miss micro spread outside. RO was eager for us to start off with hormone therapy ASAP and by middle of May 2026 he suggested that we start radiation. We still have to meet Dr. Mach Roach who seems to have very good reputation and I heard a few people praise him very much. It is very distressing when RO talk more like doing business with patients and glossing over all the negative side-effects of radiation and ADT by not willing to address them honestly. Thanks to support groups, AI and videos on the topic patients already know how difficult ADT journey is going to be. Any feedback on who will be better choice between him and Dr. Mach Roach UCSF?
@jeffmarc
I'm metastatic with nodgels in my lungs, thyroid and some bone. This was after robotic surgery in May, 2016
After two PSA tests that showed under .2 I had no more PSA test after they asurred me It was eliminated. In 2022 and 2024 it was missed from scans by me and primary care Doctor. Finally had a pet scan, biopsys that showed the spread.
@bobbybaby
Time for chemo or Pluvicto. Yes they can put you on ADT and an ARPI at the same time but those are the treatments when there’s multiple metastasis.
@jeffmarc
Thank you, I'll talk to doc about it 😊