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.

I have stage4, I occasionally step in that hole of "well this is not good". I have to fight to make sure I get out of the hole. I tell myself that I'm not really thinking about the cancer all the time, focus on the side effects of the meds I'm taking. This site has really helped me to take joy in the small things in life. Also, everything I'm going through, there are others on here going through the same thing. It has really helped me since finding this site to keep moving forward. To be honest if someone had told me they had prostate cancer before my diagnosis, I wouldn't know what that involved. Here on this site we can learn from others and get inspiration from their journey. Everyone is here to help each other. Best to all.

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@northoftheborder

One other thing I experienced early on was the irrational (but apparently common) belief that if I refused to accept cancer and the changes it brought to my life, there was somehow still a magical chance that things might go back to the way they were. I never would have articulated it this way, and would have agreed that it was dysfunctional (and absurd) if anyone asked me, but still, it was there.

What I was really doing was refusing myself permission to learn to love my new life — after all, time doesn't have a reverse gear — but I'm not beating myself up for it, because I think I had to go through that then to get to where I am now (loving my life exactly as it is).

Acceptance means making peace with change and uncertainty, not giving up hope.

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I read that as a G7 I could go up to five years without symptoms if I chose no treatment, and that was my plan until several family members BEGGED and cried for me to try some kind of treatment, so I reluctantly agreed, but I had no idea treatment would be this awful and painful so part of the reason I avoid them now is anger. My original plan was to just take the five years (or whatever it was) and then do medical assistance in dying (legal in my U.S. state) if/when it became painful.

Now I'm told I could live 10-15 or more years but I can't imagine feeling this way for that long. All kinds of physical and mental problems I NEVER had before starting ADT. The joint pain is the worst but doctors in the U.S. no longer care about or treat pain in any meaningful way and I have a bleeding disorder so can't use Aleve or Ibuprofen (Tylenol is useless) and I'm too old to know a drug dealer to buy pain meds from (only half kidding). I tried THC gummies and they work but I'm not a huge fan of being high.

Still, I suppose somewhere in me is a shred of hope because I keep going to the gym to do resistance training and taking my dog for 5 mile walks. I think the best way to describe how I feel right now is like a birdcage but the door opened and the bird flew away and now there's just the empty cage.

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I just saw your post. My heart goes out to you. I was diagnosed at age 69 (now 71) and have had similar issues but also have complete ED after fantastic sex life over the years with a loving and beautiful wife. After starting Lupron in 10/22 as part of Triplet therapy for Stage 4 prostate cancer, I became depressed and anxious. Six months after the start of Lupron my Testosterone was < 3 (Lupron working) but fatigue and depression were prominent. My MO at Hopkins insisted I see a psychiatrist and get on antidepressants. I did and it worked. I've been off Lupron for a year and my T is slowly rising. I have forced my self to walk 5 miles a day and go to the gym 3 days a week. I plan golf 3-5 times a week.
I say all of this to tell you that you are not alone. The good news for you is 1) you might be cured and 2) you can still get erections, even if they take longer to achieve.
At your age and relatively short course of AFT, your T will likely return, it might just take a while. I know you have probably heard this but see a therapist (to get on antidepressant and have someone to talk with/vent) and consult a dietician (it doesn't should like you dietary plan is very sound). You will regain your muscle mass. You can have a satisfying sex life. You can be happy again. In a state of depression it's hard to see those things but they are achievable. Take the steps; life is worth it!

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@retireddoc

I just saw your post. My heart goes out to you. I was diagnosed at age 69 (now 71) and have had similar issues but also have complete ED after fantastic sex life over the years with a loving and beautiful wife. After starting Lupron in 10/22 as part of Triplet therapy for Stage 4 prostate cancer, I became depressed and anxious. Six months after the start of Lupron my Testosterone was < 3 (Lupron working) but fatigue and depression were prominent. My MO at Hopkins insisted I see a psychiatrist and get on antidepressants. I did and it worked. I've been off Lupron for a year and my T is slowly rising. I have forced my self to walk 5 miles a day and go to the gym 3 days a week. I plan golf 3-5 times a week.
I say all of this to tell you that you are not alone. The good news for you is 1) you might be cured and 2) you can still get erections, even if they take longer to achieve.
At your age and relatively short course of AFT, your T will likely return, it might just take a while. I know you have probably heard this but see a therapist (to get on antidepressant and have someone to talk with/vent) and consult a dietician (it doesn't should like you dietary plan is very sound). You will regain your muscle mass. You can have a satisfying sex life. You can be happy again. In a state of depression it's hard to see those things but they are achievable. Take the steps; life is worth it!

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Thanks. I agree that therapy would be helpful. I want to find someone not connected with a cancer center since I know that all the major cancer centers have staff that work together and coordinate things and I think I would trust a neutral third-party more than someone who worked for the cancer center (not that the people at my cancer center aren't caring just that sometimes a third party opinion is helpful).

I realized it's not just lack of sex that has me depressed but the physical joint pain I'm in constantly if I move wrong, and the lack of sleep. Also, the pain from the injections themselves was almost unbearable, though fortunately I just got my last six month shot so shouldn't be getting any more.

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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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IMO it's not about how much you lift, it's more about do you get a thorough, safe workout where you walk away thinking "I'm spent." In my case over the course of two weekly training sessions we hit every muscle group, large and small, and do various body weight, balance, core, etc exercises. It's not "Arnold" level stuff but I take every set to within one or two reps of failure. That's as good as you can do and how much you lifted doesn't matter that much in terms of combatting the ADT side effects. With me, I just like being challenged and striving to improve.

I don't think you'll find a trainer specializing in PCa patients. However, and this is the one downside, it is not cheap, so most my trainer's clients are seasoned citizens who are more likely to have health issues. Out of the dozen or so clients my trainer has, one other is a man with PCa who is on ADT. Call some trainers and talk with them.

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@scottbeammeup

I read that as a G7 I could go up to five years without symptoms if I chose no treatment, and that was my plan until several family members BEGGED and cried for me to try some kind of treatment, so I reluctantly agreed, but I had no idea treatment would be this awful and painful so part of the reason I avoid them now is anger. My original plan was to just take the five years (or whatever it was) and then do medical assistance in dying (legal in my U.S. state) if/when it became painful.

Now I'm told I could live 10-15 or more years but I can't imagine feeling this way for that long. All kinds of physical and mental problems I NEVER had before starting ADT. The joint pain is the worst but doctors in the U.S. no longer care about or treat pain in any meaningful way and I have a bleeding disorder so can't use Aleve or Ibuprofen (Tylenol is useless) and I'm too old to know a drug dealer to buy pain meds from (only half kidding). I tried THC gummies and they work but I'm not a huge fan of being high.

Still, I suppose somewhere in me is a shred of hope because I keep going to the gym to do resistance training and taking my dog for 5 mile walks. I think the best way to describe how I feel right now is like a birdcage but the door opened and the bird flew away and now there's just the empty cage.

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I'm sorry about the joint pain. And the anger is fully understandable — it doesn't matter whether it's deserved or not, because you're the one experiencing all the hard parts, and you have a right to feel how you feel. Anger can also eat away at you though, so for your own sake, you might want to take up the advice elsewhere in this thread and talk to a professional — since you're a gym rat 🙂 if you prefer you can think of them as a mood coach or trainer (which is really what they are) instead of a therapist.

My ARSI (Erleada) makes Ibuprofin practically useless; opiods give me vivid nightmares (I was on them for a couple of days post-surgery), and CBDs did nothing for me. Because my pain was mostly nerve-based (from the spinal compression and surgery), Pregabalin (Lyrica) helped quite a bit, but I didn't love the side-effects, so after consulting my medical team, I gradually titrated off it.

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@northoftheborder

In the U.S., I could fly a tiny ultralight solo, because you don't need a license for that, but I still couldn't fly a cross-country plane Cessna or Piper — it would be like being able to drive an ATV but not a car (so not all that useful). In Canada, you need a medical even for an ultralight. The general rule of thumb for any serious cancer in either country is 5 years cancer free and not on active treatment for an aviation medical, which isn't ever likely with stage 4.

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Background: I've had PC for 20 years - surgery & radiation in 2004 then no sign of cancer for 6 years followed by 9 years of intermittent lupron / eligard. This year after a four-year break from Lupron my PSA climbed, had Lupron shot with another coming in 2 weeks. I hate the side effects, but I am here for my family.
IN REFERENCE TO FLYING - IN 2011 OUR FBO MANAGER WROTE FAA HEAD "I WANT TO FLY THE PLANE NOT _ _ _ _ IT!"
HE GOT HIS TICKET BACK!

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@airportone

Background: I've had PC for 20 years - surgery & radiation in 2004 then no sign of cancer for 6 years followed by 9 years of intermittent lupron / eligard. This year after a four-year break from Lupron my PSA climbed, had Lupron shot with another coming in 2 weeks. I hate the side effects, but I am here for my family.
IN REFERENCE TO FLYING - IN 2011 OUR FBO MANAGER WROTE FAA HEAD "I WANT TO FLY THE PLANE NOT _ _ _ _ IT!"
HE GOT HIS TICKET BACK!

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I think the Canadian equivalent would be "Sorry to bother you, but if it's OK, I'd really like to fly." 🙂

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@russ777

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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Thanks. The personal trainer story is encouraging. When I started ADT, I bumped up my weightlifting to four days a week instead of three but am still losing muscle mass and strength. The psychologist is an excellent idea, just from re-reading my own post I think I need it!

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