Anyone on Erleada + Lupron + Xgeva treatment?

Posted by johnravens @johnravens, Oct 18 9:58am

Anyone on Erleada Lupron Xgeva treatment ?

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I had apalutimide (Erleada) and Lupron about 6-8 years ago. They bought me some time. I had targeted beam radiation prior. Then, Pluvicto in 2021-22. After a scan about 8 months ago showed increased tumor growth, including a tumor on my hip had displaced some of the bone, I had ARC targeted beam radiation for that and some other tumors followed by starting Exgeva treatments to help bone resistance and regenerate bone growth. I've had no noticeable side effects from the Egeva and bloodwork has remained constant for me.
I will continue the Exgeva injections for an indefinite (?) time. I have bloodwork each 6 weeks and will have a scan in 3 week to evaluate the tumors and bone.
I'm also the stage 4 metastatic castration-resistant prostate cancer patient who started the repeat of the Pluvicto treatments 6 weeks ago. Entering unknown territory, to say the least. I received treatment #2 (8 total to-date) this week and will continue the entire 6 again, if the bloodwork stays in the normal range AND the scan shows positive results throughout my body. My PSA is low and has already dropped significantly. I responded remarkably well with the first 6 treatments as a clinical trial patient, which resulted in the decision to repeat the program.
There are a lot options and standard protocol treatments. Do your homework, get a good medical team and stay positive. My personal non-medical advice is, don't wait for anything or anyone and get multiple what-if options ahead of you if and when needed.

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Thanks for your reply. My story starts back in 2003 when my PSA was 13.9 I was 50. I had 40 rounds of direct beam radiation, seed implant, and 3 years of hormone therapy. I was in remission for 18 years. I reached PSA failure in 2016 when my PSA went over 2. I had biopsy and nothing was found. My PSA continued to go up by.2 or .4 until 9/21 when I went to my family doctor for regular check up. He told me my PSA was 36.
I knew I was in trouble. My Cat scan showed metastatic which had spread to my spine, lymph nodes, and other bones. It has been 3 years of Erleada, lupron and xgeva and I medicine is still working PSA is .1 I have the cancer in all my bones except my cranium. My latest pet scan showed some reduction in some of the tumors. The doctor says my cancer is in hibernation. The problems I have is I need a knee replacement and probably need spine surgery to alleviate pain from sciatica and stenosis but I have been told I am a bad candidate. I am in a lot of pain at times and want to exercise but it’s tough. I just wanted to talk with other folks in a similar situation and how they are doing and what they are doing to get ideas for me thanks again any suggestions or advice

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@smc24

I had apalutimide (Erleada) and Lupron about 6-8 years ago. They bought me some time. I had targeted beam radiation prior. Then, Pluvicto in 2021-22. After a scan about 8 months ago showed increased tumor growth, including a tumor on my hip had displaced some of the bone, I had ARC targeted beam radiation for that and some other tumors followed by starting Exgeva treatments to help bone resistance and regenerate bone growth. I've had no noticeable side effects from the Egeva and bloodwork has remained constant for me.
I will continue the Exgeva injections for an indefinite (?) time. I have bloodwork each 6 weeks and will have a scan in 3 week to evaluate the tumors and bone.
I'm also the stage 4 metastatic castration-resistant prostate cancer patient who started the repeat of the Pluvicto treatments 6 weeks ago. Entering unknown territory, to say the least. I received treatment #2 (8 total to-date) this week and will continue the entire 6 again, if the bloodwork stays in the normal range AND the scan shows positive results throughout my body. My PSA is low and has already dropped significantly. I responded remarkably well with the first 6 treatments as a clinical trial patient, which resulted in the decision to repeat the program.
There are a lot options and standard protocol treatments. Do your homework, get a good medical team and stay positive. My personal non-medical advice is, don't wait for anything or anyone and get multiple what-if options ahead of you if and when needed.

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Thank you for your story, it is truly a battle and you have to be your best advocate

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Your story is a long winding path. I'm curious as to your treatments, or lack of, between a PSA of 4.0 (the typical trigger point of concern) and the "surprise" of 36. Have you and your medical team considered Pluvicto of something similar that can hit all the cancer targets? The drugs you mentioned, Erleada, lupron and exgeva help reduce testosterone and strengthen bone, but do not attack the cancer directly. As much as I've been through, I have not yet experienced bone sarcoma. You noted your PSA is low again, so my opinion is stay focused and create a plan to stay ahead of your current condition.

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No I haven’t tried Pluvicto. I believe my team missed this reoccurrence in the making. I had lower abdomen pain, weak stream. I was going to Johns Hopkins Urology so I thought they knew what they were doing. They decided it was urethra scarring from my radiation treatments. They did A “Roto Rooter” of my urethra and looked at my bladder. I was retaining urine. I eventually started using catheters a couple times of day.
I started to feel better. My PSA was 3.4 at that time. I started feeling better. In Fall 2019 I again was having groin pain. I was diagnosed with a hernia. The pandemic started and held off until fall of 2020 and had hernia repair with mesh implants. I again started feeling much better. My PSA continued going up .2 or .4 then fall 2021 it jumped to 36. I look back now and wish I asked or was told to get a CT scan back in 2019. People tell me it was brought on by my surgery or my Covid shot. I think it goes back to me not being more demanding. Way back in the nineties when I had sex I sometimes had discharge. My family doctor said it was an STD. I didn’t know back then about Prostate cancer and no internet. I got a computer in 2000 and had some more discharge and finally asked my doctor about PSA he said no I was under 50 I asked please and PSA was 13.9. I believe I my cancer started when I was 40. I talk to everybody about getting checked.
Thanks for your info and support. Please forgive my rambling but talking with folks helps. Best Regards

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