Ready to throw in the towel

Posted by scottbeammeup @scottbeammeup, Jul 19 6:50am

I'm 60 and was diagnosed as Gleason 7, T2B. Was given Lupron, 5 sessions of SBRT and they want me to continue Lupron for a year. I just got my second six month shot.

I honestly don't think I can make it. I worked REALLY hard to stay in shape but now my arms and legs are like toothpicks and my stomach is huge. I've forced myself on a 500 calorie a day diet (two protein shakes and a multivitamin) for the past month and it's STILL not getting rid of my belly. I stopped going to the gym because, frankly, I'm embarrassed to be seen there among my old gym buddies.

I had a fantastic sex life with a good number of f***buddies but now it takes so long to get an erection by myself that it's not even worth it.

Worse, though, is that I am SO sad with a grief I have never felt in my life before--not even when my parents died. I feel like I am underwater looking up at a hazy world. I cry or feel sad at least 4-5 hours a day.

I sleep, at most, four hours a night even though I take a double dose of Xanax (2 mg total) and two Benadryls. The drugs knock me out but I wake up at 2 or 3 AM and can't go back to sleep.

Today, I casually told a nurse I can't wait for the next six months to be over because that's the end of Lupron and she said it's going to be more like 18 months to get back to normal because Lupron takes a very long time to leave the body. Hearing that made me want to hurl myself off the roof of the medical building--I just literally froze with fear.

I'm technically "alive" but there is no quality to anything. My day consists of faking my way through work, then coming home and crying on the couch and staring into space. Sometimes my heart will start racing at 150-180 bpm for a few minutes and I pray I will just have a heart attack and die.

My friends and family have given up on me, and I honestly don't blame them. I also got tired of their "you need to be positive," "you need to have a positive outlook" bull****.

I guess what I'm asking is how the hell do so many other guys do this and still have any kind of a life. I feel like I'm 100% destroyed inside.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@michaelcharles

I would suggest addressing the emotional issues with a counselor.
Perhaps begin with the medical professional prescribing your Xanax.
The medical treatment piece seems to be in place for the next 6 mos with the recent Lupron injection.
Address the emotional aspect now, as that sounds like the most immediate issue.
There are information strings on this site about men dealing with ADT/Lupron side effects which may be helpful.
And other resources, such as the Prostate Cancer Foundation, that address nutrition, physical and emotional aspects of PCa and treatment.
Best wishes.

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That's good advice. Alternatively, instead of risking additional side-effects with a medication like Xanax, a psychologist could work with the original poster on non-pharmaceutical therapies like CBT or ACT, which have proven as effective as medication (often more so) in multiple studies over the past few decades. Sometimes CBT or ACT also use medication initially to help get started, but the goal is to move beyond it quickly.

(Note that that applies only to basic depression and/or anxiety; more complex diagnoses, like bipolar, will almost certainly need medication as part of the therapy.)

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I felt some of the same awful stuff in my first few mos. At age 75 I dismissed it all as life saving side effects. Been on Lupron, Zytiga and Prednisone for (ZOMBIE) 2 yrs. I have 10 days to go until I'm done. Looking forward to GRADUALLY getting back to what ever the NEW normal is. Life is the goal. The quality may be diminished but it's still living. BEST OF LUCK

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I’m sorry to hear you are going through this and here on the forum, but to that extent, you have found a strong support community, so that is a plus! There is tons of good input so far, so will try to share just new ideas

Meaning/Purpose – You are age 60 and claim to be “faking my way through work”. Congratulations, you are employed and have a job where your abilities allow you to be productive and add value. The issue here is that you are fully aware that your contribution has changed significantly, that is often hard to accept. My suggestion is to map out your retirement and come up with scenarios that allow for early retirement by reducing your annual expenses. Once you have a few scenarios mapped out, then take a step back, relax, and ask yourself about the meaning/purpose of your life. This is an extremely hard question sometimes (sometimes it is easy), but in general my suggestion is to get a piece of mind about the necessity of employment and in doing so to re-energize a new sense of meaning/purpose.

Perception by others – You are human, so it is perfectly fine to have raw emotions that result in worries and feeling down about how others perceive you as your body takes on radically different shape and ability, and your daily activities change. Just remember the physical side of our lives is just a tiny layer of physical material that is wrapped around who we are as a person. Your friends, family, sexual partners ultimately love you for who you are, not for the size of your muscles or the ability to maintain an erection. If folks truly don’t want you in their lives because of physical imperfections, let them go, gently.

Your feelings – How you feel is who you are, so embrace it (it is a gift of equal value to be happy or sad) and seek out a professional to talk to about how you feel. Dealing with cancer and the active grief that it brings may be the catalyst for bringing to the surface a multitude of pre-existing conditions not limited to trauma, loss of innocence, abandonment. This is heavy stuff, and you just need to talk with someone. You might need cognitive behavior therapy, who knows, but start talking with a professional and stick with it, they will help peel back this onion with you.

Three things – Refine quality of life by three things. 1, having a healthy bowel movement. 2, having a good night sleep. 3, being kind to people each day. A healthy bowel movement requires a good diet, increase your fiber, reduce ultra processed foods, but do what you enjoy and be mindful. You want a hot dog or ice cream, have it and enjoy it, just don’t do it frequently. A good night sleep might require taking long walks before going to bed, taking a shower before bed, stretching, drinking tea, etc. Find a way to infuse gratitude and calmness into your end of day activities and your brain should slow down and allow for sleep. Kindness - Being kind to people is key, sure you used to be very active and have f& buddies and do pre-cancer stuff, those are great memories and cherish them, but now try to be more Zen-like and express good wishes to people you see and think good thoughts.

Final thoughts – None of these steps are easy, life isn’t easy. Pace yourself. Your past is a treasure trove of memories and experiences, no one can take it away from you, share it widely and often as the opportunities present themselves. See this as an entrance into a new chapter of your life. Life is mysterious which means it is beautiful and terrifying at the same moment, we are lucky to have today.

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Scott, you sound exactly like me when I first started Lupron. I am an Internist and understand these things a bit more than most.
Please ask your Oncologist to drastically decrease your dose of Lupron. Try the 3monthly dose which is less than half of what you seem to be getting now. Decreasing the dose helped me tremendously without affecting the efficacy of the drug. I remained hormone sensitive for about three years and was able to continue to work 12 hours a week to date doing consults in my practice.
By all means see the Psychiatrist and the mental health team for all else they bring to the table.
Stop the starvation diet and find a way to accept the fact that your sex life will most likely never be the same. The brain is your most important sex organ and the diagnosis and treatment of prostate cancer primarily robs you of libido. In my case, a naked woman or even erotica might as well be covered furniture.
I would quit the gym. Do as much walking as you can but don’t exhaust yourself.
Remember, we are very lucky to be living in this Universe at this time, the probability is in the trillions of trillions, so ride it out. You can still find some joy once your maintenance treatment is adjusted to manageable doses.

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@brianjarvis

I went through the same thing with my Eligard injections.

When you say that you “worked REALLY hard to stay in shape…” what does that mean? Were those significant resistance-training (weightlifting) multi-joint exercises that utilize the body’s largest muscle groups (mainly squat, deadlift, bench press, row, overhead press, and lat pulldown)? Or were they just regular, easy, low-level exercises that people generally do?

Also, there is no need to go to a 500 calorie diet. Besides being very unhealthy, it’s unnecessary. It’s almost always about calories in vs calories out. In my case, in addition to weightlifting, I had to add alternating days of running 5Ks with swimming 35-45 minutes of laps every week.

Did you hire a physical trainer specializing in resistance-training prostate cancer/hormone therapy patients?

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

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 should consider reaching out to them.

Having heard in a PCRI Conference presentation that resistance-training helps to minimize many of the possible side effects of hormone therapy, I ramped up my strength-training program prior to my first injection.

As a result, my side-effects from Eligard were minimal - just minor “warm” flashes and muscle atrophy (resulting in about a 30% loss of strength). I did have a loss of libido, but no ED. No mood swings, emotions, fatigue, forgetfulness, confusion, memory loss, insomnia, night sweats, weight gain, etc., things (“male menopausal”) that are typically mentioned.

(By not starting a robust weightlifting program prior to starting on Lupron, you put yourself way behind and will have much to make up. It will not be easy.)

As for the loss of libido (with my testosterone level dropping to 3.0 ng/dL), everything still worked. (I was not going to take this lying down, if you’ll pardon the pun.) So, that loss of libido did not prevent me from maintaining the physical relationship with my wife. There was no desire, but I went through the motions anyway. Sometimes you simply do what you have to do. Life is that way sometimes…… The relationship survived without issues. I simply had to lift some weights and push through it.

Now with 20/20 hindsight, my Eligard experience was just a mild annoyance. Just as was presented in the PCRI Conference presentation, very intense resistance-training was the key.

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I've been doing relatively significant resistance training (not like the guys at Venice beach but much more than the weekend warriors) since I was about 35 as well as swimming for aerobics and yoga for flexibility. Had to give up running around 50-55 due to knee issues. At present, I can lift about half of what I did before starting ADT, still swimming but it takes a bit longer and have been on and off with yoga because I come close to fainting when I stand up quickly from floor poses or poses where my head is below my knees. I also walk my dog 5K every day. Before ADT I was doing it in 40 minutes now it takes an hour but I still do it.

How do I go about finding a personal trainer with experience in cancer patients?

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Look up the thread ‘radiation without ADT’ - someone posted a youtube link to Dr Sholtz sp?) concerning just how devastating ADT is to a male. At the first injection you begin to enter menopause in THIRTY DAYS - not 5-7 YEARS as a woman normally has.
In a nutshell, you MUST lift weights almost every day to maintain tone - forget bulking up be cause the estrogen won’t let you! Your belly snd loss of muscle mass are totally from the hormones, so starving yourself will accomplish nothing. Estrogen causes the body to treat fat cells differently which is why women have breasts and rounder bellies and butts; it’s also why some men develop breasts and lose body hair.
As northoftheborder points out, you NEED proper nutrition - protein, veggies, etc to stay healthy and at least ‘tread water’ while you’re on this crap.
I too am facing hormones after relapsing from surgery 5 yrs ago - NOT HAPPY as I too have always taken pride in my physique and have avoided certain wonderful goods which might have made me gain weight. Well, all those many years of diet, exercise - and pride - are about to go out the window….who will I be then?? After reading your post I had to take a few deep breaths since you articulated my worst fears come true. But after thinking about how stacked the deck really is, I instantly decided my new mantra is: JUST BE - just be alive and go forward….maybe Yoda said that? Don’t know but I am going to forget all that nonsense and burden I’ve placed on myself and I am going to just freakin LIVE and get thru it….I’m just gonna BE.
Glad you came to the board and shared your feelings - it’s something we all need and the support you will get here is the BEST.

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@scottbeammeup

Thanks, I think I do need some mental health help and will try to find it. My concern about taking a depression med is that I've heard they make sexual side effects even worse and I'm at least hoping *something* will come back in that area in the future.

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First and foremost, love your email username! One of my favorite flippant responses when someone is gaslighting me is "Beam me up, Scottie!"

Importantly, I would not assume that seeking help for depression automatically means you'll be taking antidepressant medication. First, you call the shots as to what meds you put in your body and which you don't. Secondly, merely getting into psychotherapy with a therapist who you can work with can work wonders.

Amidst several bad decisions, I made three brilliant decisions when I knew what I was facing: (1) leaned on family and friends; (2) once I knew I'd be going on ADT for 2 years I hired a personal trainer and have trained with her for 2.5 years, losing 40 lbs, gaining strength and, get this, having a blast; and (3) started seeing a psychologist every two weeks the moment my post-RP PSA came back at 0.091.

Ignore the various bits of excellent advice she's given me along the way; the mere fact that I've been able to meet with her every 2 weeks and dump every emotion I'd been experiencing out in her office. Dealing with this disease and side effects of treatments is a heavy burden for all of us. You can't deal with all of that on your own.

Hang in there!

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@scottbeammeup

I've been doing relatively significant resistance training (not like the guys at Venice beach but much more than the weekend warriors) since I was about 35 as well as swimming for aerobics and yoga for flexibility. Had to give up running around 50-55 due to knee issues. At present, I can lift about half of what I did before starting ADT, still swimming but it takes a bit longer and have been on and off with yoga because I come close to fainting when I stand up quickly from floor poses or poses where my head is below my knees. I also walk my dog 5K every day. Before ADT I was doing it in 40 minutes now it takes an hour but I still do it.

How do I go about finding a personal trainer with experience in cancer patients?

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In addition to the links I provided above, here’s a paper about the benefits of exercise to counteract the adverse effects of ADT —> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

I don’t run as much as I used to, but I still use an elliptical machine at the local gym - anything to keep things moving. At one point I enrolled in a water exercise class at the local Y - that form of resistance training helped keep the pressure off of the knees. Again, anything to keep things moving. No excuses.

Being a gym rat, I managed my own weightlifting and cardio regimen without the need for a personal trainer. Based on my tracking, along with a noticeable loss of muscle mass, I experienced an approximate 30% loss of strength. But, it never prevented me from engaging in any vigorous activities. As my strength dropped (due to the loss of testosterone), I had to reduce the weights I was lifting so as not to injure myself (muscles and joints) during that time. (Always listen to your body.) Setting expectations as to what’s possible while on ADT is important.

Despite being on Eligard at 65y, I pushed myself and swam in U.S. Masters and Senior Olympics events in my state in 2021. I didn’t make any world records(!), but I was competitive in my age bracket. More importantly, it kept me active and in shape while on Eligard. Never give up.

Just as most cancer centers have trained counselors to help men and their families get through the mental health aspect of prostate cancer, many have fitness programs to help men get through the physical and dietary aspects of prostate cancer and hormone therapy. Consider contacting them.

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@scottbeammeup, you've gotten incredible support and tips from the gang here. I knew they would come through. I have but one thing to add. Sometimes it can be hard to find people who are qualified to work with people who have cancer like mental health professionals, physiotherapists, personal trainers, etc. I suggest asking if your cancer center has a social worker specializing in oncology. They can help recommend people and places.

Learn more about oncology social work in this blog post:
- - How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

PS: This discussion is helping many people. Thanks for starting it.

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Scott: I know what your are going through as I had a Gleason 7 and 8 and had radiation and 18 months of ADT. It sucked!
I found that helping others helped me a lot. I volunteered to drive the shuttle bus at the local hospital one day a week and did some volunteer work at the church. It helped in getting my mind off of my own problems and gave me something to do. I also had a wife who I loved and I could complain to her often and she understood.
I did get some counseling and that helped me as I was just MAD that I had prostate cancer. Again, gave me someone to complain to.
Good luck and God Bless. Take it a day at a time.
Mike

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