After 3 years from robotic RP with a 5+4 Gleason score, my PSA moved from zero to .099 ng/mL. See my profile for more data.
August – Meetings with expert Dr. Collins (Georgetown). Wants to move fast with 5 days for 5 weeks radiation with six months of ADT (Orgovyx) due to my high Gleason from RP Biopsy (see profile).
Plan & Timing:
9/18/23 – Second Opinion Meeting with expert Dr. Horwitz (Philadelphia).
9/19/23 – Another PSA Test to look for change .
9/28/23 – PSMA Scan (Georgetown).
10/7/23 – One Week Later, (Georgetown) Scan Review discussion.
10/12/23 – Two Days Later Targeting meeting (Georgetown).
10/19/23 thru 10/28/23 – Beach trip with Grandkids & God Daughters Wedding Yeah!
10/30/23 – Start the 5 Weeks of Treatment along with six-month Hormonal suppression.
12/17/23 – Told I should start to recover enough to resume normal life but expect an impact for another year!
Notes:
1) If second opinion from Horwitz is different, then reconsider plan!
2) If 9/19/23 PSA Test shows no increase from .099 ng/mL then do I delay???
Questions:
1) How to balance risk of metastasizing versus quality of life. When do I move out???
2) Does this plan make sense, what have you all experienced?
3) Any and all comments welcome 😊
Written by
Murk
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* Meeting with Doc Horwitz at Fox Chase was great. He is friends with Doc Collins at Georgetown and confirmed a similar going forward plan, so it was a no brainer staying with Doc Collins. IMO Horwitz is focused on initial PCa patients veruss patients like me that have had RP.
* I stared taking Orgovyx for last 2 weeks and besides some initial short term spacey feeling or fog and some body warmth at night, there has been little impact for now.
* After the first 7 Radiation blasts of the 25 I am to get, I feel nothing different at all. Doc Collins says since I run 2 miles and lift light weights every day, I may skate the radiation and drug effects. But hey its now 1/3rd of the way through so who knows.
So here is a question, what if this doesn't work and I move on to the next phase?? Does this include other drugs and Chemo? What would be my next plan??
I hope for the best but wanna prepare for the worse.
OK finished 5 weeks of Radiation and tolerating the once a day dose of Orgovyx. Here is what I learned.
* Orgovyx and the night time heat flashes are manageable. Keep a fan close by along with covers. You wake up sweating and then 10 minutes later you are freezing LOL. So dress lightly at night and have a fan on with lots of covers. Then when the heat comes at night throw covers off and ten minutes later bundle up.
* The Radiation Staff at least at Georgetown MedStar are amazing. They make such a difference. At the end I gave them music sticks and a big candy box. They made it all manageable. I actually will miss them
* I had zero side effects except for the Orgovyx night sweats and at the end I seemed to poop twice as often. But the reality is I wouldn't have thought of any different if I didn't know or look for any changes.
* Life style changes of not eating fiber heavy things was minor. I admit I am dyeing for a killer Greek Salad and a bowl chocked full of nuts and seeds. SO in another week I will chow down. But I ate a ton of sushi, fish, chicken and other great thigs.
* So in three months I get a new blood work test and I am still on Orgovyx which doesn't bother me except the sweats at night. Even managed to chase the wife around so Doc says I am in that 10% bracket where it hasn't completely knocked me back hahaha.
* In three months blood work should show PSA back to nothing but the real test is over the long term which the Doc and I will be watching closely. So I may not be cured but I am all over it, winning and watching diligently.
I am finishing up 5-6 months of ADT Orgovyx and only side effect is the 3 times a night sweat breakouts. Even though I exercise every day for well over an hour with a mix of weights and cardio, I have gained almost 10 lbs. which for me is a lot. So will be glad that this period will be over. All side effects from radiation are gone and life feels pretty normal.
My three months after Salvage Radiation doctor visit was good. PSA is now .015 and the rest of my blood work looked good except for my A1C which bounced from 5.5 to 5.9. Other than that not a lot of difference in the standard blood / Urine test results.
So I am in the wait and see world and will re-visit Doc in three months (June 2024) for another set of blood tests and discussion.
June checkup showed PSA remains the same while my Testosterone has gone back up from 10 to 600. Very few side effects remain while the weight gain remains and I get night sweats occasionally. Next checkup in three months, September.
My PSA now .34, 2 yrs after RP. radiation is next. PSMA Pet scan neg. What were your PSMA results prior to radiation? MRI guided SBRT or what? Protection to bladder, rectum, etc during radiation? Thanks.
I had two PSMA scans before the RP and then just before the Salvage Radiation and it never showed anything. Its time we call out this expense exercise as Bull Shit and should be a no charge item since its so weak.
I should add that after radiation I only had some bowel movement changes but nothing that I could adjust too.
Yes please get salvation radiation from a great facility and an RO that has done thousands.
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