I have been on this for close to a year, at first, I had few side affects, now I have extreme tiredness and extreme fatique. Do not have any energy at all, really screws up my day. I'm wondering if anyone else is on this same treatment and if so what is or has been your experience and how did you fight it, if you did.Had radiation back in June, last year... After radiation, ... PSA has dropped to 0.05 from 28.
Psa had been up to 105 when I got a kidney stone 2 years ago and had surgery to have it removed. That's when PSA Sky rocketed to 105. Started taking a pill that starts with a M but cannot remember the name. Took that pill once a month and Lupron injection once a month. That took PSA down to 25 but after a couple months the PSA started climbing again. Went up to 45. Was taken off that med and put on the Nubeqa twice a day with lupron injection. Four months after starting the Nubeqa I started radiation in Jume 2024.. Radiation was a breeze, a far cry from what I was told it would be and cause.
After the radiation PSA dropped to 0.03. PSA has been steady at 0.05 for several months now but the tiredness and fatique are taking their toll on me. Happy PSA is doing great .... Just feel like I'm getting ready to kick the bucket all the time the way I'm feeling on these treatments. Doc says I have to stay on these meds another year to year and a half be on the safe side to put the cancer in check.
Anyone else on, or been on these treatments
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check your magnesium levels… I was extremely tired for 2 months after going on Nubeqa, keep yourself moving and make sure electrolytes aren’t depleted.
After excercise I take. NUNN tablet dissolved in water. I take a daily multivitamin and Magnesium glycinate as well as 1000 mg of Calcium citrate with D3… Helps a lot
Oh yeah I totally hear you! Go back to sleep or get up, pee, and then have to pee again in a bit. What’s worse is my pelvis aches after I lie down again. Doctors have determined that part of it is pelvic floor problems not cancer.
I was advised to take 4 nubeqa day by the ONC but reduced it to 2/ day now, PSA was 0.5 months ago so that works for me. Lupron is the one that causes the fatigue, try Zoladex to reduce testerone.
I’m almost 81. Had RRP 17 years ago. PSA was quite low until about 1 year ago. I’m now taking Xtandi 160 mg daily and Lupron 3 month injection. PSA is <0.1 Testosterone is 14 so drugs are working. However I have no energy and have several of the side effects. Sometimes the treatment is worse than the disease. But I want to keep going.
In my experience, Nubeqa was far more “fatigue inducing” than casodex. I’ve been getting Lupron shots for 14 months and recently changed from casodex to Nubeqa.
My PSA did drop from 82 down to 8.5 on Lupron/casodex. Adding some radiation and changing to Nubeqa dropped me to 2.1 but the exhaustion sucks.
Just started Pluvicto infusions yesterday.
Hang in there.
This is a joke: They should write for cocaine - 2 lines as needed for exhaustion. 😁
Gleason 8 with Seminal vesical invation but otherwise localized. Diagnosed 8/23. Started monthly Lupron shots 11/23. Started 750mg Abiraterone 2/24. Extreme fatigue that leaves me in multiple hour naps many afternoons. Although very difficult I find the only thing that helps is contant physical activity. I walk almost daily and go to gym for moderate weights 2X per week. I try to get out and drive to various errands. Seems to reduce the fatigue. Good luck
I'm having the same fatigue problem. I have'nt had any radiation yet, but am on lupron once every three months with Abiraterone/prednisone once a day. It's been suggested I need bone meds which I am disinclined to do given the awful side effects. I haven't decided yet.
I try to force myself to exercise upper body muscles at lest 45 minutes a day using a big "rubber resistance bands" with handles and weather permitting, take walks in the park, about half a mile. Ironically,, I find increased exercise helps me overcome the fatigue somewhat. I'm on partial Kino diet, cutting back on carbs and eating protien-rich foods with fat. Otherwise, it's the Mediterranean menu--fish and approved vegetables. Hand in there friend, I understand your frustration and dismay.
I’m on Nubeqa (2 tabs/twice daily). In the beginning I thought Nubeqa would be a breeze. But a couple of months in the fatigue hit. My doctor prescribe Ritalin twice a day.
I have had Robo prostatectomy, 39 radiations, and a Gleason 9. I also had 3 surgeries to instal and AUS because incontinence (10 pads daily) was kicking my ass.
Dropped Casodex and replaced it with Nubeqa (twice a day) and continued on Lupron shot every 3 months since April of 2023. Not really tired but shit I'm 88 and I'm bit of a house husband and I get winded climbing stairs. I'm training my wife to carry me up three flights of stairs.... she's only up to 2 now but I have complete confidence in her completing the task.
Did you check your blood lately? We both have, Mediterranean blood in our veins which means we're strong as bull throwers. Come on now get off the couch and help with the house work. That will keep you energized and awake.
If I told you the following then I'm sorry for repeating myself. Here goes, close your eyes.
Question: What is the definition of Italian foreplay?
You don't mention any PSMA scans, have you had any? You mentioned radiation was that to the prostate? You were on Lupron and Nubeqa during radiation. You've been on them now a year, and your testosterone is not mentioned but likely very low.
So you can't tell if radiation was successful because the drugs have your PSA and PC suppressed by depriving it of testosterone. ADT won't cure you, it can kill tiny PC mets but not all of your PC, and your PC will work around these drugs making you castrate resistant over time.
To see where your PSA number goes and how fast and to find where your PC is you need to get off ADT So the question is when do you get off ADT. (By the way some doctors say you need to stay on ADT for life. But with your numbers If your doctor says that get other opinions and likely find a new doctor)
Typically Lupron was given alone for one and a half to two years with RP or Prostate gland radiation, although your on a second level ADT as well. Which is more aggressive than Lupron alone so you need to determine if enough is enough, or continue for some period of time
Lupron alone earlier BEFORE radiation wasn't working you thought but you had only been on it for two one month injections. It takes a while for Lupron to kick in, and you were on one month shots which like all various months versions begin to wear off need the end of their term.
So I don't think you were on Lupron and on the correct dosage long enough to tell that.
Your radiation to the prostate hopefully killed your PC in the prostate, now there is still prostate tissue there so you will have a additional 2 PSA added to you nadar to determine whether you rise to a stable PSA or not.
It would be great if you rose to a stable PSA, but you may have more work to do before that could happen.
So once off all ADT your PSA will rise, you test monthly with ultrasensitive PSA to get data on this.
At this point you could just get whole pelvic radiation straight away or you'll get MRI and PSMA scans to see where your cancer is. It may take some time and a few scans to find it. And then get whole pelvic radiation probably anyway.
Now you might be told to get back on ADT for ever, I would not do that, or for a few months, or stay off ADT just see what you PSA does after whole pelvic since you already where on ADT for a extra period of time.
The point here is to let your PSA rise until you get positive PSMA results, then you can hit them with SBRT or several other methods, with SBRT being the most likely.
This will be a repeated process off ADT letting PSA rise find it kill it. Repeat...repeat as necessary.
You should find you find the next positive scan at lowered PSA as you eliminate your prostate cancer load.
You're looking for cure or run the time out on your PC.
YMMV but even if you completely stop ADT treatments testosterone will climb very gradually; in my case, >1 year. If you're down to about 18 months consider toughing it out. Best of luck.
Read your bio and your current and latest treatment approaches above. Sounds like when I read them you have had a major shift in thinking over those two years. Glad to see that.
I was 78 when I started my journey. I will be 80 next month. There are many of the guys here who support exercise as a way of overcoming the fatigue. Like you I needed to beat the fatigue. None of my doctors had any real concrete advice. So I listened to the “exercise crowd”
When I started I could barely walk/hike for 5 minutes. I keep at it and also went to my local community gym and started lifting weights daily along with my daily walks. Amazing but the fatigue cloud slowly disappeared.
Fast forward 2 years. I now walk about 5.5 to 6.5 miles everyday, do 30 minutes of resistance training everyday. I have the energy level of when I was 50. One additional benefit was I was welcomed by a group of retired guys who also frequent the gym daily.
The two biggest benefits of all this is a total revitalization of my energy level and my physical appearance. I lost 3” off my waist, developed the top 3 rows of a six pack and changed my diet. The second benefit is my total appreciation of the “eye candy” I experience daily.
I have taken Lupron every six months since I was diagnosed with stage four prostate cancer over a year and a half ago. Between my chemotherapy and my current therapy, which is the Lu - 177 Plavicto. (Sp?)
I was not nearly in remission as long as I had hoped to be. I was told 2 to 3 years by my doctor that I’d be in remission. I have recently taken my 4/6 Plavicto (nuclear medicine injection) .
I started this journey with 10 rounds of radiation because my cancer had metastasized starting from my sacrum and pelvis all the way throughout am I initial PSA was 635.
so yes, I’m tired today. I have minimal pain presently but that just flares up from time to time…. but the exhaustion, the low T. The hot flashes, depression, for which I’m seeking help.
One thing that my cancer team did for me was give me a megadose of steroids. 60 MG of prednisone times three days then 50 mg for three days, then 40 and after about a week and a half or so I felt wonderful and I was up and walking And hiking with my dogs out in the woods, walking up and down hills it was wonderful. I haven’t been able to do that for a long time. Perhaps it’s time for me to ask for another boost?
Anyway I hope something I said there was helpful to you. Keep your faith. Don’t give up the ship. And keep moving forward. I have a granddaughter on the way. I just can’t wait to spend time with her. I see myself with her for a long time.
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