Ready to throw in the towel
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.
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scottbeammeup, there are alternatives to Lupron. They are all terrible, but Lupron has an extra devastating side effect of depression. There is a way out of this and you don't have to be cheerful about it. Prostate cancer alone is depressing enough.
You may have made it clear to your family and friends that you'd like them to leave you alone. That is quite honestly what I would want. I would want them all to just go away.
If you haven't informed your provider of the depresssion and anxiety ( I'm assuming your rapid heart rate is anxiety). It isn't sufficient to tell the nurse. It needs to be in your chart.
You don't mention if you had nodal involvement. Are there any numbers after the N following the Gleason 7 T2b. And have you had genetic testing of the tumor itself. Those genetics would give you the likelihood of metastasis and the wisdom of such a long application of antiandrogen. One of the tests is Decipher. It is done on the biopsy sample already extracted, so all you have to do is request it.
You might get a bone scan. Bone loss is another gift from antiandrogens like Lupron.
You might temporarily find another gym.
Sorry.
Keep writing here. It helps all of us. And may offer you something.
@scottbeammeup
Having dealt with PTSD, ACID shocks, prostrate cancer, injuries, COVID I can sense your mental outlook.
Colleen is an excellent monitor of posts and hope she contacts you.
I go to Mayo Jacksonville and see a hosts of medical professionals including Mayo's Psychiatric Division. Your mental health is just a important as physical health. I am not sure where you live but if anywhere close to a Mayo would strongly recommend trying to go there.
There are many many medications that can help anxiety and depression. I am on them. I think that and the excellent psychiatric specialist I see at Mayo has made all the difference it may ability to deal with all these life issues. I see the psychiatric specialist every 6 months and go through an assessment to see if need to alter or add medications. She works with every single other medical professional I see to make sure they are working as a team.
I can feel your pain and strongly recommend seeing a psychiatric speciality clinic like a Mayo, Cleveland Clinic, or other major institution. Mayo works as a team and treats not only my physical health but my mental health. All are concerned and work together to help I get the best quality of life possible with all my conditions and stress.
Your anxiety and depression can be addressed both medically and prescriptions to help you improve your quality of life. If I can help you in anyway or would like to send secure message please do so and will gladly help you as I felt the same way as you did but got the help I needed.
Scott…. Mental side effects from ADT certainly exist. I was on lupron and Erleada for a year plus surgery for high risk PC. Depression, brain fog, weight gain and muscle loss, etc. Nevertheless, living is worthwhile and there are things that you can do to make life better. I changed my routine like, no gym but walking, no sad movies, mostly plant based diet, tuned out people that upset me, saw my doctor about depression and sleep and got some medication that helped. You need to keep an open mind as to things that you can do to make the present better and you need professional help to get through this stage of life. Good luck!
There are no numbers just G7 T2B. I will ask about genetic testing. Thanks for reading my admittedly negative rant.
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.
P.S. I did not know about Lupron and depression. I asked the side effects and was told "you'll get some hot flashes" and I've gotten a few here and there but they weren't that bad. I will investigate alternatives to Lupron. Thanks again.
Did you ask the doctor if Anti Androgen is required? You G7 T2B seems low grade.
Welcome to the site, you've certainly come to the right place. Talking with others is great but until you meet the people on this site, you are missing out. I had no idea there were so many others going through the same thing I am. Not everyone is in the same boat but we are all in the water. Keep coming back, vent, complain, share moments of joy, everyone is here to help each of us get through this. Best to all.
I'm so sorry about your situation. I'm going to suggest ending the 500 cal/day diet and going back to enjoying well-balanced, healthy meals.
I lost 40 lb post surgery in hospital because of a prolonged ileus, then gained back 60 lb when I was home in bed and a wheelchair after my appetite came back. My family doctor's advice to me was "First get strong, then we'll talk about weight." You can't be strong on 500 cal/day, and it's hard to be happy, either.
Unfortunately, ADT *will* change your body shape, but if you find a way to make peace with that (and I know it's not easy), you might discover that there's still a lot of joy out there waiting for you.
I'm not suggesting you eat an XL pizza every day, but you're fighting cancer — that's enough s**t to deal with without starving yourself, too.
As for erections, read some the threads here about pumps. I haven't tried one yet, but I'm seriously considering it.
There's also a loss of identity. You probably thought of yourself as the fit guy at the gym with an active love life, and that's been taken away from you. I was a private pilot and small-plane owner for 19 years. and while I still have my license, I can't use it without a current medical (they told me they're never likely to approve one again).
These are real losses, and it takes time to grieve for them — for months. I cried every time something reminded me of the plane. But (to use a flying metaphor) you can eventually break out above the clouds into the sunshine.