My dad is in his 70's and is taking Lupron shots every six months but it is negatively impacting his mental health to the point where he is going to stop taking it. He had his prostate removed and radiation about ten years ago when he was first diagnosed. I'm really worried about him because at this point he's so depressed he doesn't have the energy to take care of his health and find other treatment options. His PSA is currently at .31 and when I asked him what his Gleason score was he said he didn't know what that was. At this point, I'm concerned that the oncologist he's been seeing is not a good fit and isn't giving my dad the information he needs to make decisions. My dad is retired and on medicare so he can go to any doctor or facility in the US that accepts medicare and I want to help him find a good doctor. What's the best way to find an oncologist in a situation like this? Also, what has your experience with Lupron been and how do you combat the awful side effects? Are there any other treatments besides this?
How do you find a good oncologist and... - Advanced Prostate...
How do you find a good oncologist and how do you overcome the side effects of Lupron?
Where does he live?
You may find these useful:
prostatecancer.news/2017/12...
prostatecancer.news/2017/12...
He lives in Nevada. Thank you for the links! I'll look into them.
Hi. Lupron or meds like it, can really have bad side effects, even if they are vital in suppressing the Prostate cancer cells. It in effect, lowers testosterone and that causes hot flashes, muscle and bone loss and a very heavy fatigue. Because it can impact men's sense of identity as a male, it can lead to depression. Sleeping does not make the man feel refreshed. Only exercise can help minimize the symptoms...but it needs to be consistent and vigorous. If there is a major hospital nearby, you can Google it and look up Best doctor for Prostate Cancer care. It is worth it to travel a bit to be in the best hands. Good luck.
The one treatment for the SE for me was to simply find something else with less SE.
Ok - So.
I had very bad mental effects when I started Lupron - It all built up on me. It was during covid and we are isolated, our son left for college and we became empty nesters, and then cancer.
But I'm so very much better now, perhaps than I have been in years. For me it was a multi-phased approach.
1. I checked my diet, and ensured that I was getting enough EPA oils from Omega 3's
2. I started talking with a therapist (I still talk with her)
3. I joined a few online prostate cancer support groups. I'm still with a couple that I like
4. I exercise. Currently I lift weights 3 days a week, I do kickboxing 2 hours a week, and I go to Zumba classes for 5 hours a week.
Of these 4 items, exercise is the single greatest impact on the Lupron side effects. Exercise is easier with a buddy (hint hint) and for us, it needs to be consistent and rigorous. Strength training of some variety to help with the bone and muscle loss, and cardio to help with everything else. The Zumba has been a godsend for me, as I found a home with people who are interested in moving and having fun.
As for finding a doctor: Make an appointment to meet with a new oncologist. It's important that you can build a rapport with the doctor, that you father does not feel ashamed to talk to the doctor, and the you both feel some degree of trust in what the doctor is telling you.
Thank you for sharing your experience and what helped you, I really appreciate it! The articles and studies I have read keep emphasizing a healthy lifestyle and I agree with you. it makes sense to me that rigorous exercise and weight training is required to keep some quality of like and keep your bones strong while on Lupron.
Unfortunately, my father eats almost exclusively fast food and at the local buffet and does not exercise. I bought him a gym membership several months ago but he rarely goes. He doesn't drink or smoke but he seems hellbent on his soda/fast food/TV diet. I am wondering if the next step would be to get him a physical therapist and a physical trainer to come to his house everyday and force him to start lifting. He used to be a gym rat in his 20's and I need to find a way to get him back in that mindset.
I want to help him find a new oncologist but I don't know where to start. Do you have one you recommend?
I'm in the Seattle area, so I don't have a recommendation for your father. A physical therapist might be a good start if you can get one by the house - for my mental health, getting it and to the gym, and joining in the group classes really helped.
Okay thank you! I'll work on getting him a pt and group fitness classes.
Darolutamide, Xtandi, or Zytiga monotherapy might be appropriate.
ncbi.nlm.nih.gov/pmc/articl...
urotoday.com/recent-abstrac...
clinicaltrials.gov/ct2/show...
urologytimes.com/view/dr-to...
More clinical trials are underway.
I prefer darolutamide or Zytiga.
I'll look into these, thank you!
chick green is correct. Weight training 3 days a week for an hour to all body parts. Start slow and very low weights. Find a trainer to get started. Makes all the difference. Lupron makes your muscles turn to mush if you don’t fight it by resistance training. That’s what said the energy.
Schwah
IMHO, don't necessarily blame Lupron for the depression. That could be from anything, from just being alive. My understanding is that the Lupron dose is one size fits all, it's not like there's an option to take less.
Others can give you ideas for alternative medications but as far as your oncologist, you've probably been with this one long enough to know whether they're any good or not. Your oncologist should be empathetic and should answer all of your questions, even if the answers aren't what you want to hear.
Keep asking questions, keep giving them feedback, but IMHO if you're not happy now you should look around. It probably doesn't much matter where you live, there are other oncologists in that location.
Exercise is indeed the most important health factor and also the shortest and most direct path out of the side effects. His diet may be poor but being sedentary is much worse. Also diet often improves naturally if exercise is added. Suggestions for a trainer, classes etc are spot on.
It’s not easy but if he doesn’t want to live in misery that should be motivating enough. The good news is the weaker and more out of shape he’s become, the faster he will improve.
I have a lot of thoughts about this -
1) Does he even want to live? Or has he given up and is slowly (and secretly) committing suicide? Maybe a good heart-to-heart talk with him, or a therapist, would be helpful. Maybe he's thrown in the towel and believes he has nothing to live for and maybe that's true, but it might be useful to ferret that out.
2) If he does indeed want to live, I've had good luck with Wellbutrin for energy. It got me up off the couch.
3) Is he overweight? I've been on keto for the past several months and have lost a significant amount of weight, and weight alone drags you down A LOT. I'm 70, my BMI has gone from 36.7 to 31.3. Still qualify as "Obese," but working my way out of it. Also, keto gives you a TON of energy and there are lots of yummy foods to eat without carbs.
4) As the other guys have said, exercise really does work miracles. Your dad is likely eligible for a Silver Sneakers - type deal through his insurance for free gym membership. How can you beat that? Getting your strength back, like you had in your youth, does wonders not only for your body, but your outlook as well. It puts a positive spin on life, for sure. I only spend about half an hour in the gym 3-4 days a week doing only upper body and abs, come back home and get on my cheap Amazon exercise bike parked in front of the TV and go for about 5 miles (half an hour) almost every day. It gets to be a habit and getting engrossed in some TV helps you forget you're even on the bike.
5) I've been on Lupron for the past 4-5 years. With that and covid (and beer) gained close to 70 lbs. I blamed it on the Lupron but have discovered, to my great delight, that losing weight on Lupron is not as onerous as has been described. Once I got it through my thick skull that this weight ain't coming off by itself, I resigned myself to the fact that I need to actively do something about it - there is no other way.
At one point, not too long ago, I had completely given up. I was so fat and so weak, so fragile, damn near helpless, I thought I could never pull out of it, and it scared me. I live alone without support and if I simply had a fall, didn't know if I could even get back up. Probably depressed as well but, didn't acknowledge it. I truly thought it would be impossible to lose all that weight and get some strength back.
Well, I'm here to tell you that things can indeed turn around. A year ago I couldn't even conceive that I might get my youth back, but it seems I have. It's amazing. I really thought I would die like the guy in The Whale (lol, wasn't quite that bad) but changed my mind and decided I'd rather live fast, die young and leave a good-looking corpse. "Living fast" has a whole new meaning now, and I just might die leaving a good-looking corpse. A long time from now, hopefully.
I see that your post is from two days ago but it just appeared in my feed, I hope you see this and it gives you some ideas.
To Life!
Thank you for your advice and thoughts, I really appreciate it! I like your idea of the bike in front of the TV. Maybe I could do something like that for him.
I started on the lowest possible setting (no resistance at all, just pedaling) for only TWO MINUTES. Just to get on the bike, the feel of it and get a little blood flowing. Now I'm on setting 6 out of 8. I didn't even push it either, as my legs became stronger, it just felt better on a higher setting. Hardest thing though, is getting your butt off the couch and onto the seat of the bike! But anyone can do it for two minutes.
Good luck!
Why not try a receptor blocker as mono therapy such as Xtandi or Nubeqa?
I've never heard of these, I'll look into them. Thank you!
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