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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@ptjeep

I have a question, is anyone besides myself that is angry. I mean downright angry that the medical community once they treat you and you have suffered through the barbaric biopsies and the placement of markers and the space or and then being chemically castrated for a year or longer, that none of them care about the mental grief you go through ? I've been off Lupron for 14 months and I have no libido no nothing in the tank at all and my urologist just thinks I should get over the loss of everything and move on. No matter that I'm dealing with extra breast tissue that I don't want, leaking urine that I don't want, trouble with bowel movements that I don't want, anger in the fact that I will never be normal again, I miss the intimacy I had with my wife of 48 years that seems to have evaporated over the last 2+ years because I never know when I'm going to leak urine and believe me that's a real turn off, I'm angry that I have to wear pee pads and carry an emergency pee bottle in my car because I never know when I'm going to get struck with a sudden urge, or a gas bubble is going to press against my bladder hard enough to make not going impossible. Out of the 10s of thousands of the men that get prostate cancer every year am I the only one that thinks it's insane that there isn't really any aftercare given for us?
The depression is overwhelming.

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Ptjeep, I hear ya. I live in New Hampshire & there is not even a support group up here that I can find. However this site does help.
You should consider an anti depressant. It may help. I know what you are experiencing is normal for us. Somehow this journey makes me feel flawed. However you may have heard this before that we can’t let this define us. Hopefully your side effects will improve over time. Hang in & be well.
Bob

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@ptjeep

I have a question, is anyone besides myself that is angry. I mean downright angry that the medical community once they treat you and you have suffered through the barbaric biopsies and the placement of markers and the space or and then being chemically castrated for a year or longer, that none of them care about the mental grief you go through ? I've been off Lupron for 14 months and I have no libido no nothing in the tank at all and my urologist just thinks I should get over the loss of everything and move on. No matter that I'm dealing with extra breast tissue that I don't want, leaking urine that I don't want, trouble with bowel movements that I don't want, anger in the fact that I will never be normal again, I miss the intimacy I had with my wife of 48 years that seems to have evaporated over the last 2+ years because I never know when I'm going to leak urine and believe me that's a real turn off, I'm angry that I have to wear pee pads and carry an emergency pee bottle in my car because I never know when I'm going to get struck with a sudden urge, or a gas bubble is going to press against my bladder hard enough to make not going impossible. Out of the 10s of thousands of the men that get prostate cancer every year am I the only one that thinks it's insane that there isn't really any aftercare given for us?
The depression is overwhelming.

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First of all, you MUST deal with the depression; it is a real thing that colors your every perception of the world. You cannot address any of the anger because it’s all from your chemically unbalanced state brought about by Lupron.
Some people can have their brain chemistry altered permanently due to medication and you just might be that guy.
When people hear “depression” they think of a catatonic state, an immobility of sorts. But schools have been shot up, entire families killed by their loving fathers and other acts of violence perpetrated by people who were depressed; and that turned to intense anger.
I suggest you reach out and find a psychiatrist who can prescribe something to reverse - or at least counteract - the effects of the Lupron, which is KNOWN for causing depression.
Yes, all the shitty things about this disease make me angry as well - let’s face it, our lives were ruined by it. But I have come to terms with it, turned the anger into “whatta ya gonna do?” and I have moved past it.
But I was not on ADT as long as you were so I was not so affected.
Oddly, I was happy and of light spirit while on Orgovyx. Now, coming down from it I find myself crabbier, bitching all the time and screaming at the TV again. Even my wife commented that I was a different person on ADT and I really WAS!
Just the opposite of what we were told - that I would have mood swings, depression, etc….Nope, just the opposite. So who can say that you SHOULD be all better now since nobody really knows what effects - short and long - ADT has on all people….we’re both different, that’s for sure.
So please get professional help - this is not something anyone can do alone…Best,
Phil

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@rparsons

Jeffmar, what is your secret
not having no anxiety about prostrate cancer anymore. 😊I have not been able to get past that yet. However the gabapentin helps. As you know it’s prescribed off label for anxiety.
Bob

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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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@ptjeep

I have a question, is anyone besides myself that is angry. I mean downright angry that the medical community once they treat you and you have suffered through the barbaric biopsies and the placement of markers and the space or and then being chemically castrated for a year or longer, that none of them care about the mental grief you go through ? I've been off Lupron for 14 months and I have no libido no nothing in the tank at all and my urologist just thinks I should get over the loss of everything and move on. No matter that I'm dealing with extra breast tissue that I don't want, leaking urine that I don't want, trouble with bowel movements that I don't want, anger in the fact that I will never be normal again, I miss the intimacy I had with my wife of 48 years that seems to have evaporated over the last 2+ years because I never know when I'm going to leak urine and believe me that's a real turn off, I'm angry that I have to wear pee pads and carry an emergency pee bottle in my car because I never know when I'm going to get struck with a sudden urge, or a gas bubble is going to press against my bladder hard enough to make not going impossible. Out of the 10s of thousands of the men that get prostate cancer every year am I the only one that thinks it's insane that there isn't really any aftercare given for us?
The depression is overwhelming.

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Wow you hit the nail
On the head , I’m feeling everything you mentioned and I do get angry that I ever went through all this and my oncologist said the same thing forget about sex, I could have stuck him with a triple dose of Lupron . It’s frustrating to hear how treatable prostate cancer is but they fail to say most of us life will never be the same

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@ptjeep

I have a question, is anyone besides myself that is angry. I mean downright angry that the medical community once they treat you and you have suffered through the barbaric biopsies and the placement of markers and the space or and then being chemically castrated for a year or longer, that none of them care about the mental grief you go through ? I've been off Lupron for 14 months and I have no libido no nothing in the tank at all and my urologist just thinks I should get over the loss of everything and move on. No matter that I'm dealing with extra breast tissue that I don't want, leaking urine that I don't want, trouble with bowel movements that I don't want, anger in the fact that I will never be normal again, I miss the intimacy I had with my wife of 48 years that seems to have evaporated over the last 2+ years because I never know when I'm going to leak urine and believe me that's a real turn off, I'm angry that I have to wear pee pads and carry an emergency pee bottle in my car because I never know when I'm going to get struck with a sudden urge, or a gas bubble is going to press against my bladder hard enough to make not going impossible. Out of the 10s of thousands of the men that get prostate cancer every year am I the only one that thinks it's insane that there isn't really any aftercare given for us?
The depression is overwhelming.

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I agree with you totally. I was so focused on the physical healing after RP in Jan. About 5 weeks out I hit a wall of emotional distress and anxiety over what had actually happened with my body. I didn’t see that coming until it was real. I knew all the risks and possibilities before but having it all in real time, especially the ED and consequences of all the sensations, etc. of prostate gone, overwhelmed me. It’s a grieving process and a difficult one at that. It’s especially challenging with a younger partner who knew the possible outcomes yet encouraged me to go with it. We both where unaware of how different and challenging reality is from what we expected to work through. The real impact on relationship has been far more distressful than I imagined. There seems to be very little attention paid to emotional and mental health attention and preparation provided from the urology and other medical resources both pre and post- op. I’ll have to say I wasn’t prepared for the depression I’ve been experiencing. Trying ways, like this support blog and seeking out professional therapist, to address it.

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P.S. just re-reading this and wonder you mean by "they increased my dosage." The dosage listed on the Lupron Depot web site is 7.5 mg per month. There are higher doses, like 45 mg, but that is for six months so it still works out to 7.5 mg per month.

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@ptjeep

I have a question, is anyone besides myself that is angry. I mean downright angry that the medical community once they treat you and you have suffered through the barbaric biopsies and the placement of markers and the space or and then being chemically castrated for a year or longer, that none of them care about the mental grief you go through ? I've been off Lupron for 14 months and I have no libido no nothing in the tank at all and my urologist just thinks I should get over the loss of everything and move on. No matter that I'm dealing with extra breast tissue that I don't want, leaking urine that I don't want, trouble with bowel movements that I don't want, anger in the fact that I will never be normal again, I miss the intimacy I had with my wife of 48 years that seems to have evaporated over the last 2+ years because I never know when I'm going to leak urine and believe me that's a real turn off, I'm angry that I have to wear pee pads and carry an emergency pee bottle in my car because I never know when I'm going to get struck with a sudden urge, or a gas bubble is going to press against my bladder hard enough to make not going impossible. Out of the 10s of thousands of the men that get prostate cancer every year am I the only one that thinks it's insane that there isn't really any aftercare given for us?
The depression is overwhelming.

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I can relate 100% I had my prostrate removed in 21 leaked normal amounts for a bit did great until early 24 cancer was detected in lymph nodes started radiation and lupron 1 YT ago 46 radiation treatments now I leak constantly mental state is definitely not right mood swings no sleep no sex life so I go to onocologist last week I tell him I can handle it but I need help from a sleep aid or something lol I guess they expect you to handle it I was told to ask my primary care for any type meds for anxiety etc

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We often hear about the physical benefits of exercise to minimize the side-effects of hormone therapy (https://m.youtube.com/watch?v=YE61HSAsFb0). But, there are also mental health benefits as well: https://m.youtube.com/watch?v=8n0cIhamFvo
As they mention, Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more. Incorporating resistance-training exercise is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.
Many cancer treatment centers have counselors to help patients and family members in dealing with the emotional and mental aspects of prostate cancer and hormone therapy. You might consider reaching out to them.

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@stevieg

I can relate 100% I had my prostrate removed in 21 leaked normal amounts for a bit did great until early 24 cancer was detected in lymph nodes started radiation and lupron 1 YT ago 46 radiation treatments now I leak constantly mental state is definitely not right mood swings no sleep no sex life so I go to onocologist last week I tell him I can handle it but I need help from a sleep aid or something lol I guess they expect you to handle it I was told to ask my primary care for any type meds for anxiety etc

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Steve,
So very sorry to read this, but keep seeking help, I just don't understand why our Dr's. don't have a plan for our aftercare.

Very Best Regards,
Jeff

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@brianjarvis

We often hear about the physical benefits of exercise to minimize the side-effects of hormone therapy (https://m.youtube.com/watch?v=YE61HSAsFb0). But, there are also mental health benefits as well: https://m.youtube.com/watch?v=8n0cIhamFvo
As they mention, Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more. Incorporating resistance-training exercise is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.
Many cancer treatment centers have counselors to help patients and family members in dealing with the emotional and mental aspects of prostate cancer and hormone therapy. You might consider reaching out to them.

Jump to this post

While on Lupron + abiraterone/prednisone,I enrolled in a 6 month clinical trial which incorporated diet counseling and 30 minutes of aerobic exercise (heart rate above 70% of max for age) and 30 minutes of resistance training, ( a dumbell and body weight workout) at home, but with live virtual instructors, 3 times a week. Though temporary, each session provided a break from the fatigue and a sense of well being, both of which helped me get through the 24 months of ADT. It became a habit which I am continuing. In addition, getting outdoors to appreciate nature each day was helpful.

While evidence of the efficacy of dietary changes on prostate cancer is inconclusive, efforts to optimize a healthy diet not only improved my blood work labs and helped control weight and body composition, but it introduced us to recipes for dishes from many different cuisines and eliminated much of the meat, added sugar and sodium in our diet without any feeling of sacrifice. Combined, these changes make me feel as though I am less likely to succumb to the wide array of comorbidities triggered by ADT and aging. Besides all of that, eating incredibly seasoned healthy foods puts joy in my heart and a smile on my face!

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