On Lupron experiencing major depression and anxiety

Posted by stevieg @stevieg, Feb 5 4:59pm

Been on lupron for a year they increased my dosage I’m having major depression and mood swings and anxiety attacks drs are like mediate & exercise what helps

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@bluegill

Yep. My PSA went way down, 0.0 something, so I earned a vacation from ADT. But, it didn't take long for my PSA to shoot up again, so I'm back on it.

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I'm interested in how long you were off of Lupron?
Did the major side effects go away?
I'm at three years of being on Lupron and my PSA has been non-detectable for al.ost that long. I'm tired of hurting and being fatigued. Oncologist and I have talked about it and I need to decide before my next injection in May.
Thanks

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@fredt

I'm interested in how long you were off of Lupron?
Did the major side effects go away?
I'm at three years of being on Lupron and my PSA has been non-detectable for al.ost that long. I'm tired of hurting and being fatigued. Oncologist and I have talked about it and I need to decide before my next injection in May.
Thanks

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Sounds like you are an ideal candidate to stop taking ADT. Just make sure you get blood tests every three months, If you keep monitoring your PSA, you can do something if it starts to rise. I know many people that have had holidays that were successful for a long time.

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I was on Lupron (Eligard) for 3 years, then one full year off. After a few months off Lupron, I started feeling better and was able to lose 25 pounds (of the 30 I gained on Lurpon).

The Downside? My PSA rose sharply and quickly. It went from .2 to 2 in about 10 months.

So, I've been back on Eligard for 3 months now, but I'm hadling it better this time (through resistance training).

I just saw my urologist today. My PSA went from 1.8 three months ago to 2.0 today. He's not worried about it. He wants me to just stay on Eligard for the rest of my life.

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@bluegill

I was on Lupron (Eligard) for 3 years, then one full year off. After a few months off Lupron, I started feeling better and was able to lose 25 pounds (of the 30 I gained on Lurpon).

The Downside? My PSA rose sharply and quickly. It went from .2 to 2 in about 10 months.

So, I've been back on Eligard for 3 months now, but I'm hadling it better this time (through resistance training).

I just saw my urologist today. My PSA went from 1.8 three months ago to 2.0 today. He's not worried about it. He wants me to just stay on Eligard for the rest of my life.

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Well, I just replied to your other message request, but this brings up another issue.

Your PSA is rising while you are on Eligard. You have to wait another couple of tests, but if it continues to rise, you need to be put on another drug. You would’ve become castrate resistant, your PSA continues to rise, even though you are on Eligard. Either Zytiga or a lutamide would normally be next.

You really are no longer with the correct doctor. You are beyond a urologists specialties, They are surgeons and urinary specialists, not prostate cancer specialist. You want to get yourself to a Genito urinary oncologist? Hopefully at Mayo, you can get some new answers from an oncologist there.

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@jeffmarc

Sounds like you are an ideal candidate to stop taking ADT. Just make sure you get blood tests every three months, If you keep monitoring your PSA, you can do something if it starts to rise. I know many people that have had holidays that were successful for a long time.

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Thanks for your response. It helped, every piece 🧩 of the puzzle helps.

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@jeffmarc

The deal is Bob, I’ve had this for 15 years. My fourth and last reoccurrence was in 2021. I did try reducing abiraterone from 4 pills to 3, to try to reduce the brain fog. My PSA went up from .2 to 1 in 18 days. when reducing to 3 pills, while on Abbie.

So that sort of set the future for me, Reduce or stop the drugs and my PSA will rise quickly.

The thing is, for over 4 years the drugs have kept PC Controlled, and even undetectable for the last 16 months. Even though I have BRCA2.

I still get monthly blood test, but I don’t even think about the fact that results may not come in until that night or the next day. It’s nice to see them, but the anxiety is just gone. It’s been so many years.

I remember the first few months after getting monthly PSA tests I would worry about the results and wait in anticipation of the results. I know that’s what’s happening for almost everybody out there who’ve only have had a few years of PC.

The other reason I don’t have anxiety is because I know that when Darolutamide stops working, I can move to a PARP Inhibitor and then chemo or Pluvicto. There are still many things that can keep me alive.

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Thanks Phil. You seem to be an expert in this prostrate thing. You have a lot of knowledge. I appreciate your knowledge & reply. I am sure I will be asking you many more questions.
Bob

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I had the same experience. I've had major depression and anxiety from my Parkinson's. I was on meds that were working.
Then I was hit the prostate cancer. My meds quit working and I went into a deep depression /anxiety spiral after my ADT shot. Almost suicidal.
Two things I'd recommend you check out, ketamine therapy and Transcranial Magnetic Stimulation.
I'm on ketamine therapy and it knocked the depression out after two three sessions. The anxiety lingered on a bit, but it's almost entirely gone. Problem is it's not covered by insurance. But if can afford it, it's the first thing I'd look into. Find a good clinic and check it out. I'm a poster boy for this therapy. It gave me my life back.
The second option is Transcranial Magnetic Stimulation (TMS). This takes longer but might be covered by your insurance. Medicare covers it. Usually daily 20 minute sessions for about six weeks. I'll be starting that next week in addition to the ketamine.
I have treatment resistant depression. Never heard of it till my meds quit working.
But have you tried or are you on any anit depression medications? If so, are they working?
Sounds like you got the usual the usual response from doctors. Most don't know how to deal with what you've got.
You might try going to psychiatrist for a check up and appropriate meds.
Bottom line, you need to take control of your care and seek other options if you're not happy.
Depression and anxiety are extremely debilitating and need to be dealt with.
Good luck. There are treatments and options for you.

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