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

@round5 I've also been on Lupron for 4 years and 2 years Nubeqa. I struggle with the weight issues, breast enlargement, and possibly the medicine being connected to heart issues. PSA is 0.08 and low T. Recently had PSMA Petscan and no trace of cancer outside the prostate. I've suggested to my doctor Nubeqa monotherapy and Holliday from both medicine. So far he has rejected both suggestions. How long have you been on the Nubeqa monotherapy, I would like to try to get off the Lupron also. I was first detected 10+ years ago with a biopsy of 6 and did a few years of watchful waiting. Had another biopsy a few years later and it went up to a couple cores 3+4 and I decided focal laser ablation at that time. After 3 years PSA started rising again and had another biopsy with 4+5's found in the prostate, doctor performed radiation to the pelvis area and prostate, he suspected a lymph node was in question. Was on Lupron after the radiation, a few years after that the PSA started to rise again. Been on Lupron and Nubeqa since then with undetectable PSA and no cancer detected outside the prostate.

@mrd1000
Low Testosterone causes a sluggish metabolism, reduced muscle mass, increased abdominal fat storage, and low energy for exercise. Low-T creates a cycle where weight gain further lowers testosterone, requiring lifestyle changes or medical intervention to break.

Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

Between low T and the inability to cut out meals. It’s really annoying how hard it is for prostate cancer patientsto lose weight. When it comes down to is we really need to change our diets.

You are at the point where many people stop the ADT drug and just go on Nubeqa, or nothing. Maybe you need to be more emphatic more proactive with your doctor and tell him you want to do it not can you do it? Nubeqa has very few side effects so it’s not hard to stay on it, and it will keep your PSA down in almost all cases.

I’ve seen many people with Gleason nine that have done this and have been able to go for a long period of time without having to have ADT again. Some people do have to go back on ADT soon, but it varies a lot.

@mrd1000 With a PSA of .08 PSMA cannot detect lesions even if they are there and inactive. Doctors do not want to get sued for malpractice so you will probably need to tell your doctor you will continue Nubeqa but not take another Lupron shot if that is what you want. He may tell you the cancer will run wild if you do that. It will still take many months for the effects to subside.

Can Orgovyx be prescribed with Nubeqa for Gleason 9 patient who has localised prostate cancer?
Medical oncologist for my husband said Nubeqa is prescribed for metastatic cancer only. Is that true?

https://www.nubeqa-us.com
/WHAT IS NUBEQA®?
NUBEQA® (darolutamide) is a prescription medicine used to treat adults with prostate cancer:

that has not spread to other parts of the body and no longer responds to a medical or surgical treatment that lowers testosterone
that has spread to other parts of the body and responds to a medical or surgical treatment that lowers testosterone
that has spread to other parts of the body and responds to a medical or surgical treatment that lowers testosterone in combination with docetaxel.

It is not known if NUBEQA is safe and effective in females or children or small animals or surly waiters or unpleasant in laws ;=)

Yes I think it can be prescribed for non metastic PC..I take Orgovyx with Nubeqa myself.

@mrd1000 i’ve been on Nubeqa monotherapy for 13 months and my testosterone is just now becoming detectable but barely like in the 40s and 50s. I’ve had a total of 64 months of intermittent Lupron over my 10 year plus battle therefore making it harder for recovery. The longer you’ve been on it that much longer it takes for recovery.. If you seriously want to do Nubeqa monotherapy you’re going to have to change from “suggesting” to “telling” your doctor you’re going to do it. Three months before I went to monotherapy I suggested it and the doctor talked me into taking another Lupron shot. After further research, I regretted that decision and was adamant when I went back in the next time to refuse the Lupron. He actually went along with it pretty good when he seen I was adamant about it. Just remember if you do stop it now the lingering effects will stay with you for much over a year. When I was on it the first few times for only a few months I bounced right back but when you take it over two years recovery is a lot harder to obtain if ever.

Even if you decide to continue on ADT + Nubeqa, tell your doctor you want to take Orgovyx instead of the Lupron which has more severe side effects and takes longer for testosterone levels to recover after discontinued.

@ambika Yes, but that is off label since the label says for local should be castrate resistant (means Orgovyx no longer works). Problem will be getting insurance coverage off label in USA for drug with list price over $12K per month. Will probably want to start step therapy with Zytiga since it is a low-cost generic. Side effects much worse but has same clinical effect as Nubeqa.

@ambika
At this time, it is prescribed for metastatic, castrate sensitive prostate cancer. If it’s not metastatic, then it’s not approved yet.

Usually, they will prescribe Erleada (apalutamide) In that situation.

Hi,
Look into the ADT drug Orgovyx which is a newer drug with milder side effects, Also it’s in daily pill form so if you are have bad side effects you can stop the next day while a shot can last for several months.
Dave 3+4