Would like to pause Lupron injections. Taking Nubeqa and Lupron.

Posted by reb1200 @reb1200, 1 day ago

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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xahnegrey40 | @xahnegrey40 | 23 hours ago

tell your doctor- not really enough info BUT at your age, I say go for it, PSA every 3 months and if you have a recurrence, maybe just quick radiation...you say PSA is undetectable so that is a good start. and just stay on the Nubeqa regime.

I am considering exactly that scenario at end of yr or this time next yr..

round5 | @round5 | 18 hours ago

For some reason, most doctors love prescribing Lupron. I quit it over a year ago after I insistedand went on Nubeqa monotherapy. My plan is to never take it again. I’ve had surgery, salvage Radiation twice, chemotherapy with carboplatin and Docetaxel and Pluvicto over my 10 year battle and I feel the Lupron was the worst thing. I have an undetectable PSA now and my last scan was good.

lsk1000 | @lsk1000 | 18 hours ago

Thanks for that reb1200 and round 5.
Eliminating just the testosterone deprivation part is a novel idea. I’ve been asking my doctor about a drug holiday for both Orgovyx and Nubeqa, but he’s not a fan until the completion of two years so I doubt he’ll give me the ok. In the meantime, without telling my doctor, I reduced my dosage of Nubeqa to one pill a day hoping it would help with the fatigue and lack of energy. PSA remains 0.014 which is as low as the lab test can register.

kujhawk1978 | @kujhawk1978 | 17 hours ago

Why not...!

Given your age, clinical results to date, MDT may be a way to manage your PCa while balancing quantity and quality of your life.
https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/165396-stereotactic-ablative-body-radiotherapy-for-psma-pet-ct-staged-oligometastatic-prostate-cancer-a-multi-centre-study-beyond-the-abstract.html
Kevin

pesquallie | @pesquallie | 17 hours ago

A year after stopping Lupron my severe headaches, 24-hour sweats, and aching joints and bones are just starting to get better. New surveys by Duke and Harvard question that Lupron helps more than a small percentage of men but causes most to have severe side effects and injuries to joints and organs.

mmacaulay | @mmacaulay | 16 hours ago

Similar to my case. Not as athletic however. Stage IV b. Gleason 9. Did Taxotere chemo and IMRT radiation with Lupron and Nubeqa. Stopped Lupron at 13 months. Continued on Nubeqa-only since Jan 2024. PET scans every three months. PSA steadily 0.1.

Jeff Marchi | @jeffmarc | 16 hours ago

I know a number of people in your age range that are taking Nubeqa As they’re only drug and it works great. One of the guys in a bimonthly group I attend moved to South Africa and decided to go on only Nubeqa. He had a very serious case Gleason 9 With metastasis. He’s doing great and he’s been undetectable for the last six months after many years of treatment.

At your age, you’ve waited a year it’s definitely time to try dropping off Lupron to see what happens.

If you have to go back on, definitely try to get Orgovyx since it has fewer side effects for a lot of people.

You should speak to your doctor about this, but be proactive and let him/her know this is what you want and you are willing to even get tested monthly if that’s necessary.

jim18 | @jim18 | 15 hours ago

Sounds like a plan. Remember, it is very rare to get relief from Lupron within the first 6 months of the "effective" end date and pesquallie experience of 1 year is not unusual. Orgovyx has recovery in 2-3 months and less side effects so if you ever have to go back on ADT you do not want Lupron. Insist on Orgovyx unless there is something new out by that time.