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Anyone take a Treatment Holiday? Intermittent use of ADT (hormone Tx)
I wish there was more info. on 'drug holidays' or 'intermittent use of ADT', with or without concurrent or prior surgery or radiation; especially as may relate to ADT 'orally alone' emphasizing Quality of Life, which may be a consideration particularly in order (over 75) men. I see plenty of discussion about side effects (common between ADT regimens it seems, whether injections or pills, which have lower long QT heart risk); but I see nothing dedicated to 'Orgovyx alone without any other treatment; and then 'if' one stops; and restarts... meaning is there an 'end point' of the course'; and then a patient does nothing more.
Maybe I saw one study in Japan; but not U.S. .. Again no discussion on say an older guy (over 75) taking Orgovyx … as ADT alone… without surgery or radiation. IE: QOL concern given it seems longevity is about the same (statistics don't help much; as once someone hits 80, longevity won't vary much regardless of treatment). So I'm wondering if 'ADT alone.. mono therapy' is a wise course. Also, is there info. on after successful year of treatment with Orgovyx and then PSA pops up a bit (say from .1 to 3. ..) will another few months restarted treatment be sufficient, and then 'do nothing' beyond. Or just skip it after going through a year of Orgovyx with the usual side effects (hot flashes etc.. )
May not be what supports clinics; but wonder if it's a quite reasonable choice (for 'localized' PC, Gleason Score 8; not metastasized). I have conflicting views from doctors; one for 'radiation' despite pacemaker; another: 'just pause the Orgo. and restart'; to lastly another doc: 'you had a course of Orgo; let things stabilize; enjoy life and don't think about it".
I realize there's no perfect answer; would appreciate reflections on this topic…especially if you did Orgovyx alone and stop and restarted or not. Thanks! I appreciate Coleen's efforts to help this group! (Lurking so far; my first post here ever.)
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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No problem, that's what this forum is for, share our experience and understanding!
Greetings. I attended a webinar, yesterday hosted by the Prostate Cancer Foundation on this very subject. They discussed all ADT, namely a host of new drugs in two categories, ones like Firmagon and others that surprises the receptor cells. The two doctors, a radiologist oncologist and surgeon both agreed, it seems to be standard protocol to take a break from ADT. The consensus was to monitor and restart if needed. Also that recovery can take as long as the ADT regime. And that some could have resistance to the adt and others could never see their testosterone ever return and may need replacement. They also agreed that any of the treatments are better than none and to mix drugs. Also that the cancer isn’t gone just retarded and once on any form of ADT, that one will probably be on them again. There was also a discussion on side effects, more than I’ve heard before, the same outcomes. Not exactly what I was told at onset of treatment. I received, two years ago, two Firmigon and one Eligard with Proton radiation. I’m still feeling the effects and my testosterone is still low. I was stage 1, intermediate Gleason 4+3/7. To date my psa is at .29 and the Docs are happy, myself I’m indifferent. Always been skeptical and the webinar only confirmed my doubts.
Go to the PCF website and check their webinars, it’s supposed to be posted there. The news, while good is still a rough road to travel.
Stay strong my Brothers
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2 ReactionsI was disappointed that they didn’t mention that people who were on Orgovyx recovered their testosterone a lot quicker than other ADT drugs.
I've been on a break for 3 and 1/2 years. My last PSA (after minor ups) is now down to 0.07. I take Turkey Tail mushroom tea daily which can kill prostate cancer stem cells. I started with a PSA of 54, local metastasis in the pelvic cavity, and a Gleason of 8.
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1 ReactionWhat treatment did you have?
42 sessions of IMRT ending in March 2021. (no surgery) I had one year of various ADT injections and oral meds (Orgovyx). I could not have Space OAR due to the location of one of the suspect metastasis. My urologist tells me he is surprised that I am doing as well as I am!
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2 ReactionsMy husband has had vacations on and off for over 2 years. He started on a 6 month shot of Lupron along with Xtandi. He is now on Orgovyx and Xtandi. After 6 months his PSA was under 2.0 - he was off all drugs. Every 6 weeks he gets a blood draw - under 2,0 off meds until PSA goes over 2.0 then back on meds. So far so good.
When he is on a holiday, is he off ALL meds or just the ADT?
There are a lot of people that have stopped taking ADT and are taking one of the lutamides By itself. They have the ability to suppress testosterone, so unless it’s really high, they can work quite well.
I know a lot of people on Darolutamide (Nubeqa) alone, including me. Others are on Xtandi, Zytiga and Erleada alone.
Thanks for the helpful info Jeff. I’m a little confused. I am currently taking Nubeqa with Orgovyx. Could you be more specific about how Nubeqa works alone and how the side effects differ from Orgovyx & Nubeqa together. Thanks in advance!