A good positive story and 5 year prostate cancer update.
History: My dad, Gleason 9 with small mets, 17PSA, had nodules discovered during a Colonoscopy in March 2018. He had needed to pee 10 times a night for years and I urged him to check it out.... he resisted for years (I found out later his PSA was 5.6 in 2012 and that he declined a biopsy. He didn't realize the importance. He should have just had it removed back then!) Once diagnosed in May 2018 I went on a mission to choose the best treatment. I was the annoying but highly educated daughter at every appointment!
Treatment: Because he was still hormone sensitive, we started Zytiga 1000mg AM with prednizone 5mg AM/PM, Flowmax and also a statin. (Lipitor 20mg gave him leg pain, switched to Crestor 5mg). He did 20+ sessions of radiation. PSA dropped to "undetectable" in 2 months and stayed there). In 2020 he reduced his Zytiga to 2 pills, 500mg a day, because he hates "horse pills", but knows it's working. Doc says that's okay due to his age. He takes two at 6am and doesn't eat til 9am.
Status: He's 78 now and he just had a pelvic CT scan and his minor lumbar spine lesions are relatively unchanged since his 2018 scan. An echocardiogram shows his heart is okay too thankfully. He just had pneumonia but is recovering. He had a TURP and may need to do it again, lots of tissue. That was scary and a lot of blood for a week, but it helped. He was holding 600ml of urine after peeing(!), now is holding 290ml. Which is still a lot. And he has changed his eating habits (less butter, salt and processed junk), and has trimmed down but has a belly.
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I'm sharing because he was initially resistant to ALLLL of this. He wasnt a fan of doctors and meds. I WISH MORE THAN ANYTHING that he had just addressed his symptoms sooner. But he did the right thing at our urging. He became a grandpa 3 years ago, and I'm so grateful to still have my very best friend, and for him to have a grandson.
A note on Kaiser. They did a good job and honestly I feel the service has really improved and they are trying harder with regard to preventative care. We have experienced good followups, short waiting room times, thoughtful care and swift action. They have stepped it up! (LA, Desoto Location and Simi Valley).
So, warriors and their helpers.... you are doing what you can! Choosing health is the best choice you can make. Stick to it, manage your health stay on top of your docs.
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THANK YOU to this community. It informed me when I was terrified and I'm thrilled that he is in okay health, although showing his age. He is undetectable after almost 6 years and I'm so glad.
Best wishes and please ask any questions/send advice in case he starts to fail Zytiga.
- Daughteronamission
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DaughterOnAMission
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Encouraging post, and a message to lots of folk out there hesitating about getting checked. He’s lucky to have a daughter like you in his corner. Well done and continued good luck.
At 86 years old, Gleason 9, and just started with the same drugs, hopefully with similar results. I'm doing 1000-mg of Zytiga, and wondering if I would be better off at 500-mg. The Orgovyx and Zytiga have raised my blood pressure somewhat to 145 - 77 from 125 - 74.
It's men........... we do not like doctors or anything that has to do with medicine in general. Well, kudos to you for getting the old geezer (78) under control and him taking his health seriously. You're a great daughter and if possible can I (87) rent you for awhile?.....
Remind your Sweet Dad that "This is no country for old men" and to act young!!!
Happy Christmas to Him, you and et. al.
Note: I wish to offer my apologies if I offended anyone regarding my so-called humor about "race" or "misogyny". To me, humor is boundless and since we entered this word crying, I thought it would be a good idea to exit laughing.
My situation is somewhat similar, although I'm older (86). I just started on this journey: Orgovyx, which dropped my PSA to 1.69 from 12, also Gleason 9 in a 3-month period, Hoping to drop it further I just started on Zytiga, at 1000-mg and 5-mg on Prednisone. What is concerning me is my blood pressure, which was normal is now 150 by 80. Did your father have an issue with blood pressure?
This is so encouraging! My husband, age 71 was diagnosed in Dec. ‘23 with Stage 4, Gleason 9 with some mets (lymph nodes, seminal vesicles and small spots on clavicle and a couple ribs.). He’s on Zytiga with prednisone with an Eligard (same as Lupron) injection every 3 months. He just completed his 28 radiation treatments. He’ll have his PSA checked next month in April. I was kind of pushing for Triplet therapy (adding Docetaxel chemo to his regimen) but his oncologist doesn’t feel he needs that right now mostly because the metastases aren’t in vital organs. I know other men have chemo at the onset with the same numbers as my husband, but at the same time, I realize quality of life plays a big part, too. If he can get to the point that your dad has without chemo, then that would be an ideal scenario. We’ll know more after his PSA test and down the line another PSMA PET scan.
I agree with the doctor. Go for chemo only if needed. Its there if the time comes. What was his PSA at diagnosis? It tends to be slow growing in older men especially. So once his testosterone is down, it won't be able to grow. Just a note on urination, my dad has had the TURP precedure twice now, because he seemed to get scar tissue in the prostate from radiation, while this is normal, he was holding a lot of urine. So he got his pipes cleaned out so to speak. Not a big deal and was home same day both times. just had a catheter for 4 days each time. Anyway.... I suggest him taking vitamin D to keep his bones strong, and eat a banana a day, since these meds lower potassium A highly esteemed doctor at UCLA told us both of those, when we went for a second opinion. You guys are on the right track. You will have many more happy years
Thank you for your kind response. His PSA at the time he was diagnosed was 12.3, not as high as I’ve seen others, though.
I keep hearing that “standard of care” now is Triplet therapy for advanced metastatic prostate cancer, so that’s why I’ve been frustrated that his oncologist isn’t on board with that, almost making me feel that he isn’t keeping “up with the latest” treatments. He’s young, though, so I would think he IS well-versed in what’s SOC. Again, he feels that my husband’s mets are low volume enough that he doesn’t think he should add chemo. And yet, I hear from physicians like Dr. Kwon (videos) at Mayo that chemo works best if given at the onset as part of treatment along with ADT. And that adding it later if needed won’t give the same favorable results. That’s the only thing that bothers me. Is waiting going to inhibit longevity? Or am I just being paranoid? Looking at your father’s results so far has really given me hope, though. Maybe my husband CAN live a longer life without adding chemo right away. It’s such a hit or miss thing, I suppose. And every patient is different. For one thing, my husband has had very little side effects from ADT and radiation. And yet, others her have had horrible issues.
He’s been taking a good dose of Vitamin D with calcium ever since the beginning. Right now he won’t take the Zometa for bones the oncologist encourages because he needs to have a tooth extracted and an implant. So he wouldn’t have dental clearance for Zometa. He had a baseline DEXA bone density test and he has no signs of osteopenia or osteoporosis. His vitamin D level was also normal. Frankly, he’s hesitant about having Zometa infusions because if the side effects he’s heard of, especially in the jaw bone. He runs on the treadmill daily and lifts some weights, so he’s getting good weight bearing exercise. And his weight is normal.
He would love to eat a banana everyday! I’ll have to buy some. Thank you!
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(I found out later his PSA was 5.6 in 2012 and that he declined a biopsy. He didn't realize the importance. He should have just had it removed back then!) Once diagnosed in May 2018 I went on a mission to choose the best treatment. I was the annoying but highly educated daughter at every appointment!
A highly esteemed doctor at UCLA told us both of those, when we went for a second opinion. You guys are on the right track. You will have many more happy years 
xtandi 
Does not taking zytiga consistently and missing a few days here and there affect PSA levels 
My story - 16 years with metastatic prostate cancer - I’ve had just about everything
PSA after salvage radiation
Husband thinks PSA undetectable means cancer is undetectable...I think not
