Nubeqa monotherapy update

[joeguy]

It is about 6 months in to my experiment with Nubeqa monotherapy, and so far, so good. Latest PSA saw a slight increase from .90 to 1.0, but the thinking is that this may be the PSA range I settle into while on Nubeqa, and as long as it holds there, all is good. My T level is holding in the 500 range. Im not sure how much T I am actually able to benefit from since the ARs are being blocked by the Nubeqa, but I feel great! There is no comparison to the way I felt for 3 years while on constant ADT, and how I feel now. There was a brief battle with the insurance overlords, because the company I work for changed insurance companies. This resulted in the new insurance declining coverage after they discovered I was not taking ADT with the Nubeqa. The fact that I am slightly metastatic didnt help either. I am not sure how, but we were able to win on appeal, and my new insurance is now covering the cost! Hoping for a nice, long run on the Nubeqa, because once it stops working, I think it will be chemo or LU177 time.

[Jmr11820]

Great news! How often are they checking your PSA? Congrats on your insurance appeal too.

[joeguy in reply to Jmr11820]

Thanks......Get PSA checked every 1-2 months

[Jmr11820 in reply to joeguy]

You mentioned doctor burnout a few months ago, did you ever go to MD Anderson or stay at USO locally? Just wondering what we might be missing at times not being at a “Center of Excellence”.

[joeguy in reply to Jmr11820]

Im still at USO and OCSRI in Tulsa. I have been looking into the LU177 trial at MD Anderson, so I will probably get established with a doctor down there eventually. The only problem will be that most trials, including the LU177 trial, require castration level T.

[joeguy]

I forgot to mention that we also have CT scan evidence that the Nubeqa monotherapy is working. The largest lymph node tumor was 3.2 cm before starting Nubeqa, and it is now 1.5 cm. So good news all around !

[Jmr11820]

Fantastic. Was it your MO or Urologist who put you on the mono therapy?

[joeguy in reply to Jmr11820]

It was my decision to give Nubeqa monotherapy a try after some bad cardiac effects from 3 yrs of ADT, and cognitive problems from Xtandi on top of the ADT. I had reached undetectable PSA and decided to stop all hormone therapy for about a year for some time to recover. After PSA got up over 5, I started Nubeqa monotherapy. My urologist, knowing the problems I had had with ADT, agreed to let me give it a try. I really like my Uro.

[Jmr11820 in reply to joeguy]

Dr. Doyle your urologist?

[joeguy in reply to Jmr11820]

yes, he did my RP

[Philipino]

I've never heard of it. Are there any side effects from it?

[joeguy in reply to Philipino]

It is about the newest hormone therapy drug out there. I think they refer to it as a "third generation" drug, It has very few side effects

[GeorgeGlass in reply to joeguy]

The big question is getting approval. I’d like to start the nubeqa now but didn’t know they’d approve it without being able to show no cancer from ct scans. ???

[joeguy in reply to GeorgeGlass]

It is only “approved “ for non metastatic patients that are also on ADT. Your in for a fight with your insurance otherwise. But if you are persistent, you can win the battle

[GeorgeGlass in reply to joeguy]

ok, but you also have to be castration resistant, correct? I wish they would approve it for castration sensitive and non metastatic.

[joeguy in reply to GeorgeGlass]

It’s kind of dumb, but yes, the overlords have only approved it for castration resistant, non metastatic PC. It’s much like the nonsensical way xtandi was only allowed for metastatic cancer a few years ago

[GeorgeGlass in reply to joeguy]

You're right, sad and stupid. If it's not dangerous, they should let us take it if we want to/FDA approved

[leo2634]

That's great to hear . How often is it administered?

[joeguy in reply to leo2634]

The normal dose is (2) 300mg tablets twice per day.

[Alexcohen]

i am starting nubequa monotherapy shortly and my oncologist explained why its incredibly unlikely to be every approved as monotherapy. As nubequa doesnt bring down testosterone to castrate levels -- which is the sole measure of anti-androgen effectiveness assessed in FDA-approved studies, its much too expensive for a drug company to study nubequa monotherapy effectiveness because Overall Survival would have to be compared with individuals on lupron category drugs and this would take many years and probably $100 million dollars.

[joeguy in reply to Alexcohen]

Im at the point where I couldnt care less what our corrupt government "approves" of. All that matters is what I approve for use in my body to treat my cancer.

[Aldo62]

I am also going this road of Nubeqa monotherapy. I don't see why doctors wouldn't use this approach as the first protocol, before ADT. After two years, how has it held up for you?