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Would like to pause Lupron injections. Taking Nubeqa and Lupron.
Taking Lupron for 1 year. PSA undectable for 11 months. Also taking Nubeqa for 4 months. Stopped Erleada because of skin rash after 6 months. Testosterone under 8. Cancer drugs shrunk lymph nodes. Side effects are severe fatigue and diminishing lifestyle. 86 years old and would accept longevity risk for more energy. Was diagnosed with stage 4 metastatic PC. Last scan showed one small trace of cancer in left hip. Before I was diagnosed I was very active in golf(90 walking rounds per year), tennis, biking, hiking, and pickleball. I was an elete age group runner until my last race at 80. Cross country bicyclist at 67 and Norweigen Birkebeiner ski race at 65. I am thinking I could handle a return of testosterone with Nubeqa blocking its use for cancer cells. I would monitor PSA and testosterone(monthly) and resume Lupron if needed. Getting bone scans every six months. I want to get some quality of life back even if it is only for a few months
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@round5
I was only on it for four months but had very serious side effects for 9 months with a tapering off during the next 3 months. I believe my side effects were so serious that another shot would have killed me. I am 83 years old and my severest side effects were migraine headaches, 24 hour/day heavy sweating, aching joints and muscles, dizziness, enlarged heart, and hot sweats hourly. My doctor agreed that my side effects were severe enough for me to stop Lupron.
Regarding Nubeqa only, I’m finding that fatigue, espescially in my legs is increasing over time. My low T while on Lupron and Nubeqa was 22 ng/L It’s rebounded to 367 ng/L since I dropped Lupron two years ago. Walking has become increasingly difficult. My theory is that while Nubeqa allowed my T to rebound, it blocks the utilization of T as if it isn’t available to mediate certain bodily functions. Anybody else observe the same Nubeqa-only fatigue?
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1 Reaction@mmacaulay I was thinking of jumping on the Nubeqa monotherapy wagon by eliminating orgovyx. With this in mind I will have to re-think that. Thanks.
@mmacaulay
I know them more than six people that are on Nubeqa Alone and never heard of a problem with fatigue. Have you had a blood test to see if you have anemia?
I stopped taking Orgovyx For eight months and was just on Nubeqa. My PSA kept rising, but I never had any fatigue. Had to go back on because it rose too much even though I’d been on ADT for seven years at the time.
@pesquallie being 25 years younger than you when I started it my symptoms were not near that bad initially. It was the long-term cumulative effect that got to me. Sounds like you did the right thing getting off it.
I speak with little real scientific basis,but my oncologist has paused my injections for several months at a time in the past and then resumed them again. It allowed some return to testosterone normalcy. I'm 72 and have had low testosterone "naturally" to begin with of 150 to 290 for over 15 years. Diagnosed with PC in 2010. I have not metastesized as far as Pylarify scans have indicated. I'm not confident of the hospital's scanning department's ability to read and report on these scans,yet. I'm interested in learning much more about my situation. Particularly the Rubeqa and Orgovyx seem like possible options.
@derxwerx17
Nubeqa and Orgovyx work quite well to get PSA down.
I am on both and have been for about three years. I’ve been undetectable for the last 29 months. I had surgery 16 years ago and radiation 3 1/2 years later. I’ve had four reoccurrences and even though I have BRCA2 those two drugs keep my PSA Undetectable.
While Orgovyx Side effects are a little bit easier. It still takes your testosterone down to Below five, which may cause you problems if it has in the past. Nubeqa Alone works quite well for a lot of people I know, as I mentioned, Keeps the PSA undetectable and allows your testosterone to come back since it prevents the testosterone from allowing the prostate cancer to grow.
Are you having a problem with your PSA rising if you are not on ADT? If you’ve managed to keep your PSA undetectable for a while, you might try dropping all drugs.
Very reasonable request. My MO at JH actually put me on testosterone replacement when my T did not recover after one year on Lupron with undetectable PSA. I had limited metastatic disease. I, too, felt terrible without testosterone. No energy, muscle wasting, hot flashes, no libido etc etc . He said quality of life was important and I was a " 70 year old man living in a 90 year old body " without testosterone. I realize that there is the potential for the cancer to reactivate with testosterone but there are downside risks living without testosterone as well. Persistent lack of testosterone hastens the development of castrate resistant cancer which is harder to treat.
So, as just another guy on this board dealing with this disease I say go for it and enjoy some time with your testosterone back. At your age it might not rebound and replacement therapy may be needed if you and your doctor want to go that route. Good luck!!