Side effects after stopping Eligard

Posted by john6stodolka @john6stodolka, Oct 5, 2023

I have stage 4, advanced, aggressive, Gleason 9, Grade 5 Prostate Cancer. One year ago, I went through radiation and started hormonal therapy, which brought my PSA to undetectable. In July, my oncologist said it would be best to stop hormonal therapy early as the risks were outweighing the rewards for me since I also have a blocked artery in the brain stem and heart failure. Eligard can accelerate strokes and heart attacks and in my case this is not good. My question is, has anyone experienced fatigue, hot flashes and malaise that have INCREASED in intensity since stopping hormonal therapy? All of these are getting worse instead of better for me.

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When was your most recent Eligard injection and for what length of time (1 mos, 3 mos ?).
I felt that my ADT side effects waxed and waned over time, and that it took months following tx for the ADT to move out of my system.
Hopefully you will feel some improvement sooner rather than later.
Best wishes.

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My most recent Eligard injection was last April. It's now been five months without a shot. What I've read is the side effects vary by individual. Some have no effects ever and some have long-lasting effects forever. I just can't figure out why they seem to be getting worse as the weeks go by rather than better. Appreciate your comment about feeling some improvement soon!

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I finished my last shot in April, then had treatment. I am suffering from dry orgasims. Was told that I just have to wait for the shots to wear out of my body. While I’m happy I’m doing great post treatment, no one tells you this. Come on Docs, let us know. I’m getting some positive movement, but they are slow. I’m positive and my confidence is off the chart. Just have to grin and bear it. I wish you happy sailing Sir.

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Sorry, forgot, yes I am having hot flashes, not many or dramatic, but I’ll feel warm ad realize, oh hit flash. And the tiredness has been ongoing since day one and can vary. However they do seem to be fading and I’m feeling better and like doing things as before. Good luck.

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Best word in your post is "fading!" Glad that's happening for you. I sure hope all of this starts fading for me soon. I have a hot flash regularly every two hours day and night. Usually, that's followed by fatigue and at night makes me get up and go to the bathroom. This is getting old!

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I had my last 6 month injection in early November so I am 8 months out on a 6 month shot. But I too notice increased intensity of hot flashes and fatigue. Hopefully it will start fading soon as the drugs work out of my system

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I received a total of 3 shots before radiation treatment. And none since about a year and a half ago. To answer your question, yes I experienced the same after the fact. Nothing intense but I noticed it. From what I found out that the side effects and the shots are a bit more long lasting than it sez. The effects now are subsiding, a year and a half after the fact. I know it’s rough, but hang in there. I’m with you. I’m sure you are seeing that you’re not alone.

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@slick64

I received a total of 3 shots before radiation treatment. And none since about a year and a half ago. To answer your question, yes I experienced the same after the fact. Nothing intense but I noticed it. From what I found out that the side effects and the shots are a bit more long lasting than it sez. The effects now are subsiding, a year and a half after the fact. I know it’s rough, but hang in there. I’m with you. I’m sure you are seeing that you’re not alone.

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In a nutshell, ADT has thankfully provided a lifeline to many prostate cancer patients who really had no other choice in order to keep the disease at bay. And for those of us with Gleason 7 (4+3), it has been a standard of care to supplement radiation with short course ADT to provide a boost to the effectiveness of radiation against biochemical recurrence. When I had to make my decision to supplement SBRT Proton with ADT in 2022, I admit it was a struggle intellectually to justify the action knowing the decision was being based on trial results by then decades old and in the context of potential metabolic and quality of life impacts that had to be measured against any negative odds of not agreeing to take the shot(s). It is natural that most of us want to approach this disease with a one and done strategy. That being said, my sense is that most urologists and radiologists who themselves are diagnosed with either grade of Gleason 7 cancer confined to the prostate today would forego ADT based on newer study results and new diagnostic testing advancements. Just as I was blessed with being treated with more advanced protocols (which at the time included ADT), than many who preceded me, future men afflicted with this disease will experience even less quality of life impacts than I did. I have no regrets in taking the ADT shot when I did. That said, if you have newly diagnosed 4+3 Gleason confined to the prostate today, I believe, at minimum, you need to think very hard about the net quality of life and survival benefits of chemical castration via ADT. Just my honest gut assessment.

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Would you be able to send a link or two regarding "would forego ADT based on newer study results and new diagnostic testing advancements." I haven't seen anything about this and it sounds wonderful. Thanks for the post.

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Hi John! Summary discussion of the newest legitimate research on ADT specific to Gleason 4+3 for "localized" prostate cancer can be found on a recent PCRI video on YouTube featuring Dr. Mark Scholz. I am currently traveling and not in a good area for being able to open large data links so I am unable to forward the exact link. But it is specific to the latest published findings which, in his opinion, pretty much confirm that ADT for those 4+3 patients who receive SBRT Proton radiation for "localized" prostate cancer will not generally improve overall disease recurrence and survival outcomes by combining ADT with the radiation. He generally believes these findings, combined with the advent of PSMA pet scans, newly available blood and urine biomarkers and genetic testing alternatives, shed new light on the relative benefits of ADT administration for this historically "gray" area of Gleason 4+3 with respect to net benefits of hormone therapy. At minimum, make sure your radiologist and oncologist are at least aware of this new legitimate research during your discussions on overall treatment decisions. Because Standards of Care are slow to change in the medical profession and with Medicare, these new findings will not necessarily correlate to systemic standard of care changes anytime soon, it is your overall quality of life you will be dealing with here, so just make sure to seek input on these new findings from oncologists from multiple centers of excellence to guide your personal decision on this important quality of life matter. Due to liability, most radiologists will stick to the accepted current standard of care protocol regardless of any particular new research findings. This is just to say that, as a person who struggled with the ADT decision in 2022, these new findings alone would likely have led me to forego the ADT for my Gleason 7 (4+3) localized prostate cancer. Hope this helps.

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