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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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Most of the side effects you’re having are coming from Orgovyx. It reduces the testosterone to below 20 which causes numerous problems. These are the common problems.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing
Nubeqa alone does not reduce testosterone, it reduces the ability of testosterone to work to feed the cancer. If enough time has gone by for your testosterone to come back after having used Orgovyx, then most of these side effects mentioned above do not continue to occur.
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1 ReactionJeff:
I appreciate your posts. They are very informative.
ThankS!
Well here goes. This is related to my husband.
In 2003 he had agreesive prostrate cancer and had surgery, in 2011 it returned and he had 38 radiation treatments. We recently changed our oncologist, the new one ordered a pet scan and showed he had recurrence in his lobes on the side of his urethra. Stage 4. Dr suggested ADT. 2 weeks of pills to help prior to the injection and 2 weeks more of pills, he will then be put on 3 month injections. I learned about ADT from a previous thread on Mayo. I noticed there is a new pill Relugolix with less heart issues but it appears to be in pill form only? I am wondering which ADT people have found works the best? He took his first pill of 14 today?
My husband has MCI he is forgetful but it’s nothing that we can’t manage right now. I decided it would be better to just tell him his psa has risen and the dr wants him on pills to lower it avoiding the “C”. I don’t see any point in him worrying about it? No one mentioned taking the 14 days of pills before the injection and 14 days after.
It doesn’t seem to get any easier as he also had lung cancer and I have had 3 also. Just when you think you’re sailing along?? Any info would be appreciated? Thanks
One last which ADT is the best and safest if that is possible?
To @jeanadair123
All of the ADT Products affect people in pretty much the same way. I’ve been on Lupron for 7 years and then Orgovyx (relusgolix) for about a year. There is no difference in the side effects.
These are the most common side effects
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing
Orgovyx is the one most of us prefer, While the side effects are the same when you stop taking it, your testosterone comes back faster so you feel better quicker. Well, that list of side effects seems daunting not all of the side effects. Hit everyone.. I’ve been on ADT for eight years and it’s really not a problem, Even after 15 years of PC, and 4 reoccurrences my life is the same as just about everyone else. I just have to get blood test every month.
If you get him on Orgovyx He will not need that 14 days of pills before starting. The thing is, Many doctors do not give those 14 days of pills before, yet it is essential. That tells me the doctor you were going to knows what they are doing and is quite knowledgeable.
Unfortunately, you did not give us enough information for us to really give you some help. What was your husband‘s Gleason score? What was his PSA at discovery of prostate cancer?. How old is he? Did he have a decipher test and what was the result?
Was a PSMA pet scan done on him? This is sort of essential and should be done before starting ADT. You need to ask the doctor about this and requested to be done, Though I would suspect your doctor already knows that.
Have they talked about the fact that he’s going to need radiation and or chemotherapy? Radiation is probably needed, but chemo would only be needed if he had a lot of metastasis. This is something your doctor needs to talk to you about and you need to be real aware of what options you have.
You ask if ADT is the best and safest and the answer is NO. The patch trial Completed in England recently and showed that estradiol worked just the same as ADT, but had many fewer side effects. It’s easier on your cardiovascular system, On your bones (osteoporosis), causes fewer hot flashes and less brain fog. If your doctor has not heard of the patch trial, there is a lot of information about it so come back and we can help you. Estradiol is the most commonly used in a patch, But they also have injections and gels that make it easier to use. If you come back and ask, you can get more help on this.
I also had surgery, 3 1/2 years later, it came back and I had radiation, 2 1/2 years later, it came back and I started on ADT drugs. I also had SBRT radiation on my spine, where I had a metastasis. Your husband may need the same sort of thing, to metastasis on his body. ADT (or estradiol) can shrink it before radiation.
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