Diagnosed five years ago, had prostrate removed in my fifties, year later it was back, twelve weeks of radiation, and started lupron. It has come back three times in the three years.
My grandfather was diagnosed in his 70's with Prostrate Cancer and my dad in his 60's me in my fifties, I have five kids (four boys and one girls and five grandsons. Think I worry much about them?
Lupron? Have any of you gone through severe fatigue and walked around in a daze from this stuff? I drive local deliveries for a living. I zoned out the other day and almost crashed into several cars. I'm afraid to drive.
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Popsie
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MayorMike
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Hi Popsie,welcome to the group. Be careful when driving, I have always driven on therapy, Lupron will become a new normal as others will say, It is hard to lose the testosterone that has defined us as males, Has it brought your psa down to undetectable? Are you on any other meds. There is lots of good advice in this forum, many have done a lot of research. Learn all you can. I wish you the best
I had 18 months of lupron, and 40 rounds of radiation, and I couldn't work. I too drive. I have a tractor trailer, and no way I could work. Besides the brain fog and memory loss, I had muscle atrophy and it caused arthritis in every joint.
It decayed my teeth, so I have none. It felt like every bone in my body was broke, not to mention the hot flashes and sweats. I was 54 when diagnosed with stage 3.
I'm now good and back to work but will sat even the pain pills didn't work but cannabis worked great for appitie, sleep, pain. I couldn't stop the tooth, bone, and muscle loss.
I will caution a bit of advice. If something bad did happen, you will be the one blamed, because even if you feel fine, brain fog is impaired driving.
I ‘ve had the same treatments as you . I was 53 Stage 4. I went through all of your same symptoms to a T , even been on the canaby as you have. Haven’t seen anyone else break it down even to the joint pain. What a ride.... Hope conditions improve for us both.
In some men the hot flashes from Lupron can interrupt sleep cycles. You might consider looking in that area for things that might help with daytime fatigue or alertness?
I was retired when I started Lupron 4 years ago at age 65 with a ridiculously high PSA (5,006) and lots of bone and lymph node mets. My physical capabilities since have been a slow decline type of thing. A year ago I added Xtandi, and some more fatigue was added to the on-going physical trend.
In my experience, I've also had some occasional times with certain treatments and other medical conditions when I definitely would not/could not have wanted to drive (much less all day), or try to hold down a full-time job. It may be prudent for you to think about such things, and any workarounds and options, earlier rather than later. Almost everybody makes some sort of transitions involving work and health and other things in the later years of life. With the added realities and constraints of prostate cancer and treatments, exploring and planning some of the non-medical options in the day-to-day aspects of one's life might be good topics for family discussions in the near term future.
Just some thoughts...
Charles
P.S. I like your handle "Popsie". When I was a kid, we called my paternal grandfather "Pop". It's the kind of thing that endures.
Five kids, five grand kids and thirty co-workers call me popsie, given to me by a stepson whose dad died of cancer. he was four when his daddy died and didn't want to call me daddy in memory of Bob, I was ok with it. He is now 30, and I love the name.
Can any of your kids help out with the driving? Sometimes it is hard to ask for help, but we all need to get past that and realize that whether it is the treatment drugs or the disease - there are times when we need support. This might open up whole new aspects of your family ties. Also, with a family history, you might want to consider getting a germ line genetic test done and perhaps your sons might consider this as well. It any case, make sure they are getting baseline psa testing which should start in their 40's and they should watch their numbers carefully and cautiously. They should have a good urologist who is aware of the family history. Just saying..... I have two sons and sometimes they don't want to listen, but they can't shut me up.
first two are step sons, and my genes ...... but we are close and one would do anything when he's not at work. My two and the other step are out of the area. A sorry laugh my one son expense, he says, "I'm a man - nothing will happen to me." The other one says, "I'm only 30 and don't fear the finger - if they want to do it now go for it." His boss is close to my age and has PC and he hearing it from both ends on top of that he's going to be a daddy in three months.
Are you on the 3, 4 or 6 month Lupron injection? After I switched to the monthly injections, the side effects almost disappeared.
Sometimes I get dizzy after my Lupron shot and go down to the cafeteria in the hospital until I feel like I can drive home. Usually for 5 days after a shot I have side effects and tiredness in the afternoon. The second day is the worst. Maybe get your shot on a Friday would help. I have been on Lupron for 6 years and the side effects are much smaller than they were at first. I take Tylenol timed release 650mg at night and I can sleep better because it lasts for 8 hours. It is available in generic. I use a CPAP mask when I sleep, because I snore when I sleep. This gives me energy because it increases the oxygen in my blood. I use the mask even when I nap and feel much better when I awaken. Hope you feel better soon.
I was glad the wife was driving when I got my eligard shot. What I felt was beyond dizzy. I thought of having her take me to the ER but I toughed it out. I was OK the next day. This was a six month shot and it hit me like a ton of bricks.
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I've never had that kind of side effect, from either Lupron or Eligard. What I do get is one royal pain in the ass!
So sorry you had this effect. I will not get a 6 month shot because of your experience. Also, I want to see my oncologist at least every 3 months just on general principles.
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First shot I did was eleguard ..10k per and a powerful med at that.
thank you, will try napping in bed instead of at my desk, and try my CPAK
Hi Popsie,
Yes, Lupron gives you a doozy of a brain fog. Unfortunately, in my case anyway, it was like a slow build-up, and it felt like I had a bad head cold, without the cold. I've been on Lupron for almost eight years. I'm experimenting with this BIRM stuff. I'm on an off cycle now, and I can feel the fog coming back. I took it for four and a half months, and now off it for a month. But, it does clear the fog up. Others here are also taking it, and I assume with mixed results.
Hey Pop - Sie we all react differently to Lupron... I've had 23 injections starting 03/18/2008 and up to the latest one on 10/04/2017. Except for very few mild hot flashes in the beginning my energy is that of a 16 year old. I'm sorry that you're having a bad experience with Lupron but bring that to the attention of your Oncologist.
Wow! Lupron impacts us all differently. I have brain fog now and then resulting in momentary memory loss. And I take naps due to insomnia. I find it’s vital to exercise vigorously to keep body and mind healthy.
I thought the brain fog and the memory loss was due to the fact I'm an old fart, but wow. I have been exercising more but the steps dropped off a bit since my last shot, trying to ramp up again. Although I going i for a heart cath on top of it all.
I'm on Lupron, my recommendation is to do cardio for 30-45 minutes at night, preferably jogging or elyptical. This type of exercise lowers your testosterone naturally, plus it will keep you in shape and help you sleep like a rock at night. In the morning, with your organic steel cut oats with almonds, hemp seeds, chia seeds and flax seeds, have a cup of Matcha green tea powder tea. Have another one in the afternoon too. I helps fight cancer and gives sustained energy all day. Avoid food that has no nutrition. I don't drink or eat dairy, I eat oatmeal for breakfast, big salad with extra virgin olive oil and apple cider vinegar. No: croutons, bread, cheese or meat. Have healthy seafood and vegetables for dinner. Healthy seafood is: wild Alaskan salmon (not atlantic farm raised salmon), sardines, mountain trout, wild halibut and farm raised catfish. Mussels and oysters are healthy too but don't fry them. Don't eat any fried food or candy or added sugar or snack cakes, chips etc. For snacks, eat carrots and hummus and or almonds, walnuts etc. Your energy will be much much higher on this diet. It wont make you tired or sleepy. I know from experience because these are the changes Ive made and its working pretty well so far.
I said that mountain trout / rainbow trout is great. I eat it at cracker barrel with broccoli and salad on the side. Best entrée on their menu. Avoid lake trout.
There is a professor in England that is an APC patient and he did a study on how ADT effects a mans sence of direction . I lose spacial orientation and now get lost easily ....before ADT & RT I was confident in navagating the planet. Not so much now. So in effect having > Psa causes some of us mortal men to lose our bearing. I’ve also gone through months of chronic fatigue syndrome. What has helped me is my loving active wife getting me going. Left on my own I just wouldn’t have the motivation to get as much exersize . A good partner, or any one that tells you “ get movin, and keep moving” .helps ....I’m enjoying being a passenger more after driving close to a million miles myself in life.
FYI, I don’t say “good” morning anymore!!! Be very careful with brain fog. The best analogy I can make (being “somewhat” experianced with both) is that it can be like being, not so much drunk, but buzzed. You don’t think that your drunk..(don’t worry about me, I can drive) but you actually are. And no one took your keys!!!
While I was driving daily routes, I would forget where I was and at times, where I was going!! How about the old “how the f&$# did I get here moment!!!! As if I didn’t know, my wife pointed out the numerous VERY POOR decisions I would make while driving!!! I’d just blamed it on the other guy “he’s going too fast, she didn’t use her directionals” etc. No accidents, but I was in the wrong. All this before the fatigue sets in.
Watch for deminishing cognitive abilities too. My attention span is now that of a goldfish which as you can imagine, comes into play often!!!
I can’t read a GPS map to save my life and can’t follow it without turn by turn “voice” instructions!!! It just doesn’t make sense to me!!!
So, I don’t wonder far by myself, nor cart the grandkids around anymore!!!
Be very careful out there!!! This s*&t is saving your life....don’t let it get you (or someone else) hurt or killed!!!
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