Stopping Nubeqa and Orgovyx after 6 months

Posted by glabelle @glabelle, Aug 31 5:20pm

Diagnosed with stage 4 PC. Single 4+4 lesion on prostate, two others at 4+3. PET showed small spot on my pelvis and even smaller one on a single lymph node in my pelvic area. PSA 17.
Started ADT 5 months ago and had MRidian SBRT 4 months ago (5 consecutive days).
My PSA has been < .04 for past three months.
Follow up PET showed spot on pelvis and lymph node fully resolved.
When I started on ADT, oncologist told me that he thought 6 months of ADT might be adequate. As most of you guys can attest, ADT is no fun.
I’m worried that my oncologist will tell me that another 6-months would be ideal.
Anyone out there with a similar diagnosis that has only been on ADT for 6 months. If so, how did things work out?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

The Mayo Clinic would be amazing but I live in Canada so I assume that the costs would be exorbitant for us. I hear references to Centres of Excellence, so often, in videos, etc. There are positives to our Canadian Health Care system... we aren't paying for the ADT, etc. but the down sides are that it is a public health system. Wait times are atrocious. And, we kind of get what we get in terms of physicians and surgeons, unless it is something which is not required.

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Profile picture for jeff Marchi @jeffmarc

If you have a bone lesion that means your cancer has already spread outside the prostate and it’s probably in your bloodstream. That means it can pop up anywhere. You really should be on ADT For a lot longer than six months if you’ve already had spread. This is something you really need to discuss with your doctor and your Gleason score is very important when it comes Deciding how long you should be on ADT.

They have pills for nausea. When I was put on a PARP Inhibitor they also included pills for nausea because it was a common issue. Speak to your doctor about this they can probably come up with a solution.

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Thanks, Jeff, and yes, a bone lesion on a rib means out and running freely. My doc said I'd be on my ADT for 2-3 years. I was just interested in hearing a different opinion, if he got one. I'm taking Zofran, with limited success. I'll see my doc next Monday and I'll raise that issue.

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Profile picture for gkgdawg @gkgdawg

The Mayo Clinic would be amazing but I live in Canada so I assume that the costs would be exorbitant for us. I hear references to Centres of Excellence, so often, in videos, etc. There are positives to our Canadian Health Care system... we aren't paying for the ADT, etc. but the down sides are that it is a public health system. Wait times are atrocious. And, we kind of get what we get in terms of physicians and surgeons, unless it is something which is not required.

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I've wondered how aggressively your system would treat a 65 yr old with Stage 4? I hear, for instance, that in England some late stage cancers in younger seniors simply don't get the treatment pre-seniors would. Is that true in Canada?

BTW, my grandfather was from PEI and my daughter lives in Newfoundland. So, best wishes AND cheers from The States!

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Profile picture for glabelle @glabelle

Thank you!
A little more background on my situation. I have been treated at UCLA Medical Center and am seeing a Genito Urinary oncologist there. I have also gotten a second opinion from a Genito Urinary oncologist at MD Anderson. Both docs well known and highly respected for their positive outcomes.
I think that their suggestion (both of them) that I might be best served by a holiday after 6 months of ADT is a real balancing act. I am meeting with them both in two weeks to really dive into my options and whether I might opt for this holiday. Testosterone deprivation is not a benign treatment and I think that more and more specialists realize that ADT can most certainly shorten life-expectancy in itself, and most definitely have a real negative effect on quality of life. I suffer from major brain fog, fatigue, irritability, anemia, significant joint pain, low white blood cell count, hot flashes that interfere with my ability to get quality sleep and a resting heart rate that has risen significantly. And yes, I ride my Peloton 3-4 times a week and do resistance training 2-3 times a week. I can’t imagine how I would be feeling if I did not do this.
Obviously, I consider all of these side effects better than dying from próstatas cancer, but I do think that forward thinking oncologists are now thinking that “holidays” from ADT, rather than just putting men on this toxic protocol for years and years on end, might be a more beneficial approach overall.
I am not sure how I will proceed but at least they are giving me this option. More specifically the option of taking a holiday and then monitoring my PSA closely to see if it rises above 0.1 and then possibly reapplying ADT or some form of radiation (based on PET Scan). I was hoping that someone else in this group had taken this path, but at this point I have not seen that response. Soooo, if I decide to take this ADT holiday, I will certainly let you all know how it goes. Good luck to you and keep fighting the good fight.

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I'm a Gleason 9 with no spread on PSMA. In my initial consult with a radiation oncologist at Moffit Cancer Center I expressed a desire to minimize ADT. I completed Brachytherapy and IRBT and was "allowed" to stop my Orgovyx at 6 months.

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Profile picture for mccannr @mccannr

I'm a Gleason 9 with no spread on PSMA. In my initial consult with a radiation oncologist at Moffit Cancer Center I expressed a desire to minimize ADT. I completed Brachytherapy and IRBT and was "allowed" to stop my Orgovyx at 6 months.

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How long have you been off?

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Profile picture for odie10 @odie10

I've wondered how aggressively your system would treat a 65 yr old with Stage 4? I hear, for instance, that in England some late stage cancers in younger seniors simply don't get the treatment pre-seniors would. Is that true in Canada?

BTW, my grandfather was from PEI and my daughter lives in Newfoundland. So, best wishes AND cheers from The States!

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My husband was considered to be Stage 4. He had 5 weeks radiation, and ongoing hormone injections and ADT (abiraterone)and prednisone.

I am not sure if younger prostate cancer patients are treated differently than the more senior ones.

I realize that I listed the PSA incorrectly. It is, presently, < .2.

My grandmother was born in PEI, as well. I live in Western Canada. Best wishes to you, as well.

Glenda

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Profile picture for odie10 @odie10

Thanks, Jeff, and yes, a bone lesion on a rib means out and running freely. My doc said I'd be on my ADT for 2-3 years. I was just interested in hearing a different opinion, if he got one. I'm taking Zofran, with limited success. I'll see my doc next Monday and I'll raise that issue.

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If you have the prostate treated and the bone lesion zapped Then you might be able to stop the ADT after a year of undetectable PSA. If you did that, you should do monthly tests to make sure it doesn’t come back.

I know this is something a lot of people do, You want to talk to your doctor about this and see if there’s some overwhelming reason they feel that you need two or three years even if you stay undetectable for a long time. Was there something in the biopsy that is a problem?

Is it possible you could get a decipher score so you know the likelihood of a reoccurrence? If the decipher number is low, then It increases the chance that you could stop ADT Without the fear of it coming back.

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Profile picture for glabelle @glabelle

How long have you been off?

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Three weeks, I still feel all the side effects. I will probably ask for testosterone level testing at a primary care visit in one month. I'm 75 so....

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Thank you and best of luck!

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Profile picture for glabelle @glabelle

How long have you been off?

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a month

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