Today I’ve had my next medical check. PSA still undetectable after RT IMRT/VMAT to prostate bed and pelvic floor accompanied by 24 months of Lupron. This was my third regimen after DXed in 11/2017, for more details pls refer to my bio.
I will now stop Lupron, let’s see what the future will bring.
It sounds really great and really hopeful. Fingers crossed 🤞 you’ve got this. Please keep us posted. Stopping Lupron means better QOL but it’s still scary. But your numbers are low so that’s fabulous.
Many thx and all the very best for 2024 for you, too! I was pretty nervous the last days as I didn’t want to get hormone resistant on the last mile before stopping. I take every day as a present, especially after I was DXed with an unexpected NHL last year. After six R-CHOP chemo cycles and some more treatments in 2023 I’m in complete remission, too. So staying positive, completing regimens and add, what you can add, worked for me so far. I’m on plant based diet plus fish, exercising daily (jogging, weight lifting, gymnastics) and meditate. I left all stress behind - changed my life by 180 degrees. You never know what’s really working out, but all together it worked just fine by now.
REMISSION: What a wonderful word to hear!👏👏👏 I am beyond happy for you. I read your profile and you been through a lot.. it’s just so wonderful to hear happy 🍀things happening to fellow members on here. I hope we are as lucky too!
Many many thx! I think it’s always a holistic piece of art: we need treatments, complementary activities and luck. And we never know the percentage of these three. Whatever we do, it’s fruitful to try to enjoy every moment and find something good every day.
Luck is a highly under ratted piece of the equation.
Fantastic. Keep us posted.
Wishing you the best of luck.
I stopped Lupron for four years, back in 2016-2020, after intermittent ADT for four years. PSA rose, gradually, and at 36 I reverted to Lupron in 2020 but the risk at the time was worrisome. Scans showed progression. Not advising it but it does give an idea of what to expect. Since resuming Lupron my PSA is undetectable.
You’ve waited to 36? Wow! I would re-start around 2. Once year we also do a PSMA Pet/CT, just see if there are any changes. Wish you many more years of undetectable PSA!
Nusch -- your bio does not mention your initial diagnosis details. Metastatic stage 4? Advanced? High risk? Any possible bone mets? Its interesting that you don't seem to have ever used Abiraterone et al.
Sorry, you are right. Here some more details: Besides a PSA of 2.222 and GS 8 my tumor was out of prostate. CT, bone scan and MRT didn’t show any metastasis (PSMA Pet/CT wasn’t available in the hospital back in 2017.). Tumor wasn’t ready for surgery at time of diagnose 11/2017. So we started ADT and Taxotere. Doctor was very surprised that PSA went down quickly and tumor shrank. So in 4/2018 we did RP. I could keep my bladder but a lot had to go out (eight hours surgery). Up to now I’ve had only a few metastasis in pelvic and a possibility of recurrence in prostate bed. We fought both with IMRT/VMAT and more Lupron. If you have any more questions, please ask.
We hope for the best for you. Hope you can put this behind you with non detectable non recurrent PC. Only periodic PSA testing the rest of your life.
If you have any PC left you'll see a rise at low PSA now that you're off ADT, this rise can be detected better with a ultrasenitive PSA test if you want to know sooner rather than later, you may not want to know this as well.
Your doubling time will be obscured by coming off ADT which you should see in your testosterone rise, so get your testosterone checked say quarterly or three times per year. To verify your testosterone has and is recovering.
You should feel a dramatic rise in well being and strength, loss of hot flashes, better urine control if you had any issues there. You will begin felling this within a couple months with dramatic improvement probably around six months. All dependent on testosterone recovery.
It may take a year or more to regain your full testosterone level, did you have one taken before all this? A few patients might not see a recovery in their testosterone.
If God forbid you continue to have PC then you'll be looking for your next chance to try to knock it back or eliminate it. You'll most likely need your PSA to rise to 1.0 or greater, then plan to get a PSMA scan and locate the source, Then attempt to kill any metastasis through any of a wide variety of treatments.
Your doctor should be on board with this plan if you go this way.
I am with you. Just stopped abiraterone and Lupron after 2 years. 🤞🏻
I hope I could stop ADT someday but think that's not the case when metastatic. Time will tell. 2 more chemo sessions to go then see what next steps are.
Lupron verses Eligard
Stopping Zoladex or Lupron 
Medicare Lupron authorization
Lupron injection.
Erleuda + Lupron + Xgeva 
