Adding a second medicine question

Posted by pjsatz @pjsatz, Jun 21 3:36pm

I am told by doctors they would like to add second medicine to Orgovyx which I have been doing ok on for about 2 1/2 months. They say I could stay on Orgovyx only but there is possible benefit to adding a second one. I did not do well on abiraterone and prednisone, had bad headaches. If approved I could try Yonsa with a different type of steroid. I could try one of the androgen receptor inhibitors. Is it worth taking an androgen receptor blocker when my testosterone is around 10 ng/d and psa has dropped a lot?

A second drug could possibly help with delaying disease resistance. But it can also encourage some types of resistance. I don’t know that there is a definite answer here but just looking for any ideas or experiences in a case like this.

Thanks,

Phil

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Profile picture for pjsatz @pjsatz

Thank you, seems like one of the best combinations in many cases.

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Thank you. Makes my spirits soar to hear that.

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Profile picture for jeff Marchi @jeffmarc

After all this time, if your PSA has remained < .01 For over a year, stopping ADT really makes sense.

You can get blood test every month for three months(or longer) to see if the PSA starts rising, Then every three months if still low and eventually every six months.. Close to 70% of people with PC are cured or at least go into long-term remission.

I know a lot of doctors would recommend that, you could get another opinion.

I attend weekly advanced prostate cancer meetings with Ancan.org. We had somebody come in to a meeting recently who had his PSA start to rise 30 years after he had surgery, He was a Gleeson nine also. We actually get a lot of people in who are Gleason nine and their PSA starts to rise after many years off drugs.

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"Close to 70% of people with PC are cured or at least go into long-term remission." I hope and pray you are correct. With Stage 4a, Gleason 9, and Decipher .99 at diagnosis its been hard for me to be positive. I've had removal + radiation + ADT (Orgovyx 29 months). Although my PSA has been < 0.01 for 25 months now post radiation, It's scary to risk coming off ADT. But, someone else on here said that maybe the "PSA trajectory" has been changed. I know I probably need to come off ADT to see what will happen, but that's scary.

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Profile picture for northoftheborder @northoftheborder

The -lutamides (Apalutamide, Enzalutamide, and Darolutamide) are newer than Abiraterone and don't require a steroid, if you want to ask your oncologist about them. I've been on ADT + Apalutamide for nearly 4 years, and the combination has been highly effective for me (your mileage may vary).

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Is the ADT you are now taking is Orgovyx?

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Profile picture for boniyabes @boniyabes

Is the ADT you are now taking is Orgovyx?

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Yes. Firmagon for the first 2½ years, then Orgovyx (basically Firmagon in pill form) for the past 14 months.

Orgovyx has been a real game changer compared to getting the injections — my body's much happier with a daily microdose than it was being whacked with a monthly megadose.

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Profile picture for ga73ds @ga73ds

"Close to 70% of people with PC are cured or at least go into long-term remission." I hope and pray you are correct. With Stage 4a, Gleason 9, and Decipher .99 at diagnosis its been hard for me to be positive. I've had removal + radiation + ADT (Orgovyx 29 months). Although my PSA has been < 0.01 for 25 months now post radiation, It's scary to risk coming off ADT. But, someone else on here said that maybe the "PSA trajectory" has been changed. I know I probably need to come off ADT to see what will happen, but that's scary.

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Yes, your cancer is a high risk cancer. The thing is, you’ve gone 2 years with undetectable PSA. Can’t hurt to stop for one month to see if your PSA starts rising.

In my case, after almost a year of undetectable, I reduced my Zytiga From four pills to three to see if it would help with brain fog. In 18 days, my PSA went from .2 to 1, Back to four pills right away. I have BRCA2 Which causes real problems with prostate cancer growing from time to time. So in my case, I can’t stop the drugs without my PSA rising.

I know a lot of people with Gleason nine that have stopped taking the drugs and been able to do it for quite a long time, Over a year, Before their PSA started to rise in most cases.

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Profile picture for ga73ds @ga73ds

"Close to 70% of people with PC are cured or at least go into long-term remission." I hope and pray you are correct. With Stage 4a, Gleason 9, and Decipher .99 at diagnosis its been hard for me to be positive. I've had removal + radiation + ADT (Orgovyx 29 months). Although my PSA has been < 0.01 for 25 months now post radiation, It's scary to risk coming off ADT. But, someone else on here said that maybe the "PSA trajectory" has been changed. I know I probably need to come off ADT to see what will happen, but that's scary.

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It is very common to take a drug “holiday”. After maybe 6 months, or If and when PSA rises, vacation is over and we go back to work.

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Profile picture for jeff Marchi @jeffmarc

Yonsa is another version of abiraterone. Yonsa is a micronized formulation with increase bioavailability according to Sun, pharmaceuticals. You can take with or without food and you also take half the dosage of regular Zytiga 500mg. It even uses a different type of steroid methylprednisolone,

Should be interesting to hear the results after taking that drug. please come back and let us know.

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I did not do well on Yonsa. I took a half dose of Yonsa and methylprednisone twice daily for a few days but started to get high blood pressure, headache and unsteady, effects were similar to abiraterone but probably not quite as bad.

Am also on Orgovyx. I may start on Nubeqa. I will be on medicines for 18-24 months, am 3 1/2 months on Orgovyx and am in radiation.

I am wondering what happens when I try to get off an ARSI like Nubeqa? Nubeqa is often prescribed indefinitely. Does anyone have experience getting off of the first or second generation ARSIs while still hormone sensitive? Hoping I will still be hormone sensitive at that point and can attempt to finish treatment as doctors are aiming for curative intent. Do the blocked androgen receptors come back ultra sensitive and increase my risk in the long run?

Nubeqa is actually not approved for what I have non metastatic hormone sensitive. I am oligometastaic with localized 2 lymph nodes positive and hormone sensitive. There are no test results yet for my scenario but the doctors are willing to prescribe Nubeqa for me as I am sort of in a grey area in terms of metastatic.

Thank you,

Phil

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Profile picture for pjsatz @pjsatz

I did not do well on Yonsa. I took a half dose of Yonsa and methylprednisone twice daily for a few days but started to get high blood pressure, headache and unsteady, effects were similar to abiraterone but probably not quite as bad.

Am also on Orgovyx. I may start on Nubeqa. I will be on medicines for 18-24 months, am 3 1/2 months on Orgovyx and am in radiation.

I am wondering what happens when I try to get off an ARSI like Nubeqa? Nubeqa is often prescribed indefinitely. Does anyone have experience getting off of the first or second generation ARSIs while still hormone sensitive? Hoping I will still be hormone sensitive at that point and can attempt to finish treatment as doctors are aiming for curative intent. Do the blocked androgen receptors come back ultra sensitive and increase my risk in the long run?

Nubeqa is actually not approved for what I have non metastatic hormone sensitive. I am oligometastaic with localized 2 lymph nodes positive and hormone sensitive. There are no test results yet for my scenario but the doctors are willing to prescribe Nubeqa for me as I am sort of in a grey area in terms of metastatic.

Thank you,

Phil

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You can Just drop ARSI’s without any tapering. You do have to taper prednisone, however if you took abiraterone.

I’m a little puzzled, You say you have non metastatic hormone sensitive, But then, in the next sentence you say you are oligometastatic. That means you are metastatic hormone sensitive. You have up to five metastasis, That takes away the “non”

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Profile picture for jeff Marchi @jeffmarc

You can Just drop ARSI’s without any tapering. You do have to taper prednisone, however if you took abiraterone.

I’m a little puzzled, You say you have non metastatic hormone sensitive, But then, in the next sentence you say you are oligometastatic. That means you are metastatic hormone sensitive. You have up to five metastasis, That takes away the “non”

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My diagnosis is T1cN1M0, they consider the two lymph nodes I have to be localized. I think this is sometimes also referred to oligometastatic

A recent review of past studies, some of which is about this is entitled:

Pharmacological treatment landscape of non-metastatic hormone-sensitive prostate cancer: A narrative review on behalf of the meet-URO Group

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Profile picture for pjsatz @pjsatz

My diagnosis is T1cN1M0, they consider the two lymph nodes I have to be localized. I think this is sometimes also referred to oligometastatic

A recent review of past studies, some of which is about this is entitled:

Pharmacological treatment landscape of non-metastatic hormone-sensitive prostate cancer: A narrative review on behalf of the meet-URO Group

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T1cN1M0 is a staging designation used in cancer, specifically for non-small cell lung cancer and breast cancer. Not prostate cancer.

This doesn’t correlate with what you are saying about prostate cancer.

Individual Lymph nodes frequently have prostate cancer, not unusual and yes Oligometastic means that you actually have metastasis. You are metastatic, so you can get Nubeqa.

Unless you have some other type of cancer as well.

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