Hi, this is Pupdog. Had prostate removed in 2013 (gs of 8, all 14 cores were 100% cancer) Surgeon thought he got it all. Under biopsy there was cancer in one of the 9 lymph nodes removed. Went on hormone therapy for two years. Surgeon said that was what was needed. Two years later had .6 reading. Back on therapy. No reading now after 6 months. Mets in two bones, pelvis and vertebra.
Soooooo tired.
Sounds like we all are tired. Let’s be strong together.
Pupdog.
I've only been on ADT for 16 months but I know that it's a forever thing. I do get tired before ADT I used to get up at 5.30am and go to work now I am doing well to get up by 9am. But I try to stay active, I go to the gym 3 days a week play tennis twice a week and walk the dog daily. It seems to help. So stay as active as you can and make the most out of every day.
Same thing happened to me pupdog. Team thought cancer was still confined to prostate due to clear bone scan prior to surgery. Then post surgery PSA began to rise again and bone scan showed mets on pelvis. In retrospect I should have refused the surgery.
Listen my friend. First & foremost we all have to make an informed decision... ON OUR OWN.It's like playing Black Jack. We never know what will show up.My PSA was 39.5 at time of my radical in 2000.Somehow I am still here on no meds. PSAis 0.27. Was 0.29 but has dropped 0.02.Ask me or any other doc he will say never heard of this this situation before. I truly am blessed.Great Luck To All.
You...are one of the lucky ones. Glad to hear that you've survived this long and are still not progressing. 👍👍👍
Same:
High Risk PC. Bad needle biopsy. Prostatectomy, T3a (bad surgical biopsy, prostate 70% cancer), lymph nodes removed were negative (a few others “lit-up” on scan? an “artifact” I was told), post-surgery PSA 0.00. Now on Lupron for 7+ years. Was initially told that “we got it all” ... then “it will return,” Lupron for life ... PSA 0.00 ... we will wait for “the” reoccurrence. I’m going with this program, protocol sited by the NCCN.
Subsequent (not before during initial diagnostic scans) lesions appear: in a vertebrae bone lowers spine, 4 on liver, one on adrenal gland. As the PSA is a steady 0.00, we wait as insurance needs a rising PSA for PC drugs ($$$). I’m not going to go through a lot of expensive, invasive diagnostics. Or more decimating treatments: chemo, or being fried by radiation.
But Doctor says: “You are doing well! ” But through through these years (cumulative and growing) extreme, debilitating fatigue, terrible pain in the vertebrae bone, and (new) aching hurt/pain in shoulder blade bone.
Monthly appointments to Pain Management with a monthly prescription of pain medication (thank God! all pain gone, aches gone, and can function so much better ... and depression is relieved).
We are waiting till the shit-hits-the-fan (reoccurrence) along this devastating road to hell with Prostate Cancer.
——————
I know that this cancer will eventually kill me (I’m generally very healthy). But I’m tired of the fatigue and pain. My goals articulated to each of my doctors:
• No pain! (From treatment or cancer.)
• To be happy. (I’m 74, have ... or had ... a life, so what ever it takes that doesn’t kill or destroy my quality-if-life. Looks like the plan is to stick with opioids for the remaining years.
I am tired, worn out, often no-peace, depressed (Lupron ADT), aches/pains, life ruined, but am doing the best I can.
Ask your Dr. For a low dose of Ritalin. Works for me. I’m using less than prescribed as time goes by. I’ve figured out when the fatigue starts and know when to take it. Some days I make it on one dose some none at all.
Good luck
Sorry about the recurrence Pupdog though 100% Gleason 8 cancer in all biopsy cores means your chances of surgical success were pretty limited.
ADT damages the mitochondria that convert food to useful energy carrying molecules in our muscles. So far, the only proven treatment for that is exercise.
I exercised religiously on ADT. My capacity was way down. Instead of jogging 4 miles at moderate speed, which I used to do, I could only manage 1 mile at slow speed. But it worked! I was able to go to work every day and work at my desk all day long. I was able to go on 5 and 6 mile walks with my wife. I was able to stay awake all day though I did often need 9 hours sleep at night instead of my usual 7 or so.
Try it. You can lift weights, do pushups and situps, walk, swim, jog, whatever. Build up over time and push yourself. I think it will help.
Good luck.
Alan
Pupdog, ADT kicks my but too. So tired, fatigued, hard to do everything. Drives you crazy when the drugs make you feel worse than the cancer. Stay strong!
You know, it is crazy, this ADT simply takes away our drive and causes tremendous fatigue. it is 11:20 AM right now, and I have so much to do and have not even taken a shower yet. I was planning on going on a bike ride at 8:30, but here I am. i know, when we are tired, it seems the worst thing to do is sleep and the best thing to do is go for a walk, go to the gym, take a long bike ride, and that, for me almost completely fends off the symptoms for the rest of the day. Common sense dictates to get exercise early n the day as the quality of our day will be substantially better. The trick is, to find a way to do it! I am right there with you my friend!
You are describing me: I know, I know! But I am so tired (fatigued).
Just got out of the house and took my dogs for a walk, now to the gym. Just need to get out a little earlier tomorrow! Good luck making it out yourself!
Am trying ... through discouragement. I take my dog out for walks each morning, 20 years a gym-rat (bodybuilder ... quit due to fatigue that I wasn’t recovering from), socialize, out with friends lunch/dinner. Am getting (over the last year) so that I don’t enjoy much of anything due to the fatigue and pain. Frightening as can feel it slowly progressing. Also neurological issues: depression, memory, focus, etc.
You can see my “trip” and photos on Facebook (William Cooper) Savannsh GA. (How in the hell did this happen to me?)
I’m really positive ... but oh so tired.
First of all, Pupdog, sorry to hijack your thread. William, nothing and no one is ever the same. I am on both Lupron and Zytiga and cut my prednisone to 5 mg per day about two months ago. I can feel my energy level lower since I cut back from 10 mg, but that is another story. With that, if you used to be a gym rat, maybe you still can. I just took my dogs for a walk, then went to the gym and just walked two brisk miles on the treadmill. Just 30 minutes, and I feel relatively normal compared to feeling like a dried up slug two hours earlier. Maybe set a time in the morning to work out, or do just a little cardio, Start with a mile, every day. To me, exercise absolutely makes me feel better, the rest of the day, so why not do some in the AM so every day can be better after your work out? Example, I did not make it out of the house to exercise until this afternoon. Had I done so earlier, my entire day would have been more productive and my mind, a little focused, relaxed and clear. There are also studies that people who walk daily with cancer stave off the progression of cancer a little more than those who don't walk. Please message me if you like and I will share more with you. Best of luck brother!
Great attitude and information from your experience. Very similar wave length as me. Thanks.
William, I have found any kind of exercise for 30 minutes is a huge help. Walking a couple miles at any pace too. I found if I over exercise I am in bed the rest of the day, so know your limits. Fight back and don’t let the bastard run your life. Stay strong and be brave!
Yes!!!
After surgery and now PSA 0.8 - what's next?
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