First, I'd like to thank the many good folks that contribute this forum. Your inputs have been a life send to me over the past several years, especially Tall Allen who recommended UW Medicine where my MO and RO are located. They have been fantastic to work with.
The short story - Diagnosed in 2018. Had RP in early 2019. Never went undetectable. Had Full Pelvic Radiation with boost to two lymph nodes that showed uptake on PSMA scan. PSA eventually started rising and next PSMA showed a single site uptake in a retroperitoneal LN. Passed on ADT due to side effects and opted for SBRT MDT to his LN. Scans showed it was successful.
PSA dropped and has now shown a small rise. Latest PSMA shows 3 nodes with uptake. I know this is whack-a-mole, but was hoping to delay ADT. 2 of the 3 nodes are easy but the 3rd is touching the lower intestine and my RO is hesitant to zap it due to possible harm to the intestine.
At this point my thought is to initiate Lupron/Abi/Prednizone and hope to be able to take a vacation in 2 or 3 years. Seems to me there is no loss in zapping the two nodes that showed active but not sure if my RO would go for that. Any thoughts?
I believe my MO will be leaning toward life long ATD without an vacations. My initial 6 month shot of Lupron gave severe hot flashes, night sweats and joint pain. Of course, man boobs and fatigue as well. Exercise had helped a bunch I'm sure. If this is what is going to prolong my life with the family, I can suck it up.
Any suggestions would be appreciated. Meeting with MO on Wednesday.
Thanks again for all of the great information and support.
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GBMV
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I agree completely. However, do you think along with ADT there is a bit of benefit by zapping 2 of the 3 lymph nodes as there was some success previously. Kind of like a "why not" thinking?
Got it... Thank you. Does Lupron/Abi/Prednizone look like the best next step at this point? Maybe with discussing taking a vacation after 2 or 3 years? This past year without ADT has felt great, bummer is not knowing what it has cost me in the long-term.
You Da Best.... Thank you! And thanks for all of your time sacrificed to this forum. Seems the no brainer is to accept minimal 2 to 3 years of ADT (hopefully it continues to work that long) and if I still want to consider taking a vacation, think about it towards the end of the 2 to 3 years. For now, my best route is to get rolling with ADT. Does this sound like a reasonable plan?
get a couple of portable fans to carry around with you, my daughter is a wound care nurse and has been very helpful in getting me all different types of fans. As long as we are on the right side of the grass the sweats will just be a constant pain in the butt. Good luck warrior. 🙏🙏🙏
I also had persistent PSA after prostatectomy with 2 lymph nodes identified. Just finished 35 sessions of full pelvic radiotherapy and now on ADT plus Abiraterone for 3 years. I don’t think you will notice much difference to adding abiraterone to your previous regime. I am pretty fatigued but I think it’s mainly after effects from the radio treatment so hopefully that wears off. Really hope your new treatment works out for you 🙏
FYI regradings SEs: I have been on Lupron and Aberaterone for most of my 11+ years of treatment. SEs for me included immediate weight gain, manboobs, night sweats, hot flashes and (I think) minimal joint pain. Over the past few years, the hot flashes have declined in both frequency and intensity. I wasn't aware at the time but have since learned that, early on, one can take medicine to treat the "manboobs", and that while I still had night sweats, I recently started keeping my bedroom pretty cool with the a/c (my wife complains it's too cold) my night sweats have diminished or disappeared.
My view is contrarian so please consider that. I was in the similar situation with 2nd round of 2 lymph node oligomets in difficult locations. My RO targeted them with SBRT a year ago. Perhaps using a different linac with MRI guided higher precision would be better, such as the Viewray MRIdian system (search for locations). After much consultation and research review, I decided that the longer ADT (2-3 years) was not worth the added toxicity to my health and could well promote castrate resistance. So I only did 6 months adjuvant ADT.
I also opted for "second-strike" treatments to then go after the likely remaining disease such as micromets. For this I chose an alternative radioligand, monoclonal antibody Lu177-J591 in Perth Australia. It went well. My PSA remains undetectable 15 months later. I also do a modified BAT program, as a number of us do outside of SOC. For me this consists of 3 months of high testosterone (SPA) alternating with one month of ADT (Orgovyx plus Darolutamide. There is a sub-community of us, not on HU/APC if interested. Paul
The plan for me was lifetime ADT. I don't see why anyone would consider the chance of cancer to be worth it. Perhaps if your PSA becomes undetectable and the tumors also you could stop taking one ADT med or the other for a time.
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Would appreciate Your Thoughts
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