Dad has been on orgovyx ADT since 3 weeks. Since 3-4 days he complains of not getting proper sleep like earlier.
Does ADT cause this ?
ADT causes insomnia ?: Dad has been on... - Advanced Prostate...
ADT causes insomnia ?
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Tinkudi
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Testosterone levels are linked to sleep patterns. Both high and low T can adversely affect sleep.
From the Sleep Foundation: “In men and people assigned male at birth, a low testosterone level may cause insomnia-like problems, including difficulty falling asleep or staying asleep.”
ADT lowers T to near zero. I started ADT nearky 2 years ago. No sleep problems the first year. Now I quickly fall asleep but I’m wide awake after 4 hours. There is no falling back to sleep, so I get up, make coffee, enjoy some quiet time, then workout.
A nap always helps, but many days I don’t have time for one since I’m still working. I don’t want to take another drug to help me sleep. I just deal with the new sleep pattern.
Be aware that just having cancer means you often wake up in the middle of the night with ruminant thinking; about what you’re going through, how it will affect others, and your eventual demise. Speaking from experience here.
There’s also the matter of having to get up and pee 2-3 times a night.
Only 2-3 times, lol?
This past 6 months I have taken 2 X 5 mg slow-dissolve melatonin plus 1 X fast dissolve 5 mg under the tongue melatonin about a half hour before I go to bed. As has been written about on this forum previously, if you take pills before bed it is better to be lying on your right side if you can.
1. I'm enjoying a very good sleep now. I cannot prove it but I think it may be related to the melatonin.
2. As you know bad sleep is very bad for health especially when challenged by cancer.
3. There's all the things that everybody goes on about in terms of sleep hygiene. I grew up where the parents insisted that the windows were always open preferred proper ventilation. Nowadays when it's noisy outside lots of people just shut themselves up into a little box. And then the CO2 rises through the night. Fresh air is important. And everything else too 😂
4. I think I'm taking the melatonin because in fact I had persistent poor sleeping, especially when I didn't follow my exercise program. But I can't remember (🙄).
5. Here's the bonus. Apparently there is decent evidence (not RCT clinical evidence!) that melatonin may be active against metastatic prostate cancer.
6. I did quite a bit of reading on this ("that's a surprise John!") and did not find anything worrying that would suggest I should not take melatonin.
7. I don't remember at the beginning whether ADT Firmagon or Abiraterone caused poor sleep. I mean there's just so much to think about and so much to worry about it would be hard to figure out what causes what.
Thanks John. I hope the firmagon reaction is ok now 😊. Missed hearing from you
Thanks Tinkudi!
It's ironic you mentioned Firmagon. Because a week ago I had Firmagon #30 🎉! And as I've mentioned many times I've tolerated it very well, especially after having the injection done by a knowledgeable and professional nurse.
And surprise I got a severe case of shivers about 8 hours after the morning of the injection and had to leave the dinner table and slept 14 hours and had a 2° C fever. And a big red bump which was slightly painful and took 5 days to go down!
But then 48 hours later I was fine again! I think Orgovyx might be a better idea! But we can't get it here in Canada yet last time I checked.
But let's put this in context - Firmagon/Degarelix is better on CVD risk and I never have hot flashes through the month. And two days is nothing. And it's not even a big deal.
I trust your Dad as coming along well!!!
you did mention last injection you had a bigger reaction than usual and hence I asked. I am glad it is ok now.
Never had hot flashes ? Wow. Even with zero testosterone !
Dad is ok. I had posted the test results here - had you seen them. Orgovyx seems to be working. Have to start xtandi soon and am nervous about that. I can see the low testosterone is making him kind of slow and dull. 🙁
Tinkadu,
I'd suggest finding ways to increase his exercise levels to offset the slow and dull issues. Appropriate exercise is a key to maintaining some QoL with PCa. How that works when you're 83 and in India is beyond me, but I'm sure you are up to it.😀 Plenty of informative data in threads on this site.
There is an injectable (subcutaneous) version of Orgovyx/Relugolix which gained earlier approval from the U.S. FDA. I wonder if it is available in Canada. (cetrorelix, degarelix, ganirelix). One does not have to remember to take a daily pill but it does sometimes have injection site reactions.
I've written quite a lot on this forum about Firmagon / Degarelix - which I prefer as it is a GnRH antagonist. It has been available for years in Canada. It is the right ADT for me for now.It's funny you mentioned not having to remember to take the pill everyday! And as for injection sites I've also written about nurse competency for injection.
Good morning 😊. Your posts were a big influence on me to tell the doc I want to do with orgovyx compared to agonists. !
Don't forget to cycle off from melatonin every few weeks so that your body doesn't lose the ability to produce melatonin on its own.To prevent this from occurring, I often take l-tryptophan instead of melatonin. It is a precursor that helps your body to generate more melatonin on its own rather than replacing it with an external source.
Hope this helps!
Mascouche, thanks for this important note.
So this was an opportunity for me to review taking melatonin. It's a good idea to review any supplement from time to time!
Here's my point by point summary of my review today, and then a few references:
1. NO DEPENDENCY - The literature seems to say that there is no evidence that taking melatonin will reduce the body's ability to make melatonin.
2. MAGNESIUM - The literature often mentions magnesium. I take magnesium everyday and a magnesium pill before I go to sleep.
3. SIMPLICITY - From Occam's Razor (make things as simple as possible) I don't want to do any "meds cycling with tryptophan", because it's complex and more of a cognitive burden -- and apparently unnecessary. However thanks to our friend here, I have now learned that tryptophan (famously abundant in turkeys and thus everybody goes to sleep on Thanksgiving in North America 😂), is a precursor to melatonin! This is interesting at least!
4. BECAUSE PCA - I'm not addressing this question here but one of the reasons I'm taking melatonin is the suspicion that it is active against metastatic prostate cancer. This is not a high-quality determination.
5. RESTLESS LEG - I used to have restless leg which was very aggravating. I have just recalled that I do not have restless leg anymore. Whether this is related to taking magnesium and melatonin I cannot say. But this was my intent.
6. EFFECTIVENESS? - Some articles highlight the concern that melatonin doesn't actually make much of a difference. My own anecdotal experience is that it is helpful. But I also note that if my brain is racing, then I won't fall asleep regardless of taking melatonin. I'm trying to practice more sleep discipline.
7. UNCERTAINTY - There is a lot of research on melatonin going on right now. Concerning all of sleep support effectiveness, safety and off label as effective against cancer specifically metastatic prostate cancer. And apparently we don't know as much as we'd like to know.
8. SAFETY - When taking any supplement, one needs to be confident in the supplement's safety. And one thing apparently is a concern that your melatonin supplement is the source question, i.e. that your product is in fact good quality and actually melatonin. I'm okay with my brand of melatonin and I'm okay with the overall safety. And as always, it's a good idea to check interactions with any supplement and other supplements and primary meds. From my reading melatonin seems pretty safe.
9. REGIME - just repeating it from my original comment, I take a mixture of instant-dissolve and extended-release melatonin. The literature suggests taking melatonin significantly before going to bed. I have not managed to do this yet, but I should.
10. WHY BOTHER? SLEEP! AND... - All this seems like a lot of work, to understand melatonin. This is justified because of the importance of sleep. Sleep is so important for general health and especially in circumstances of cancer. And then as mentioned above there are the potential additional benefits against metastatic prostate cancer as well. Okay some references.
Here is a key quote by a "Dr. Horvat" from the Cleveland Clinic in 2022, which seems to be a reputable institution:
"There is no concrete evidence to suggest that taking melatonin will suppress our body’s ability to produce melatonin. The idea that our bodies could become dependent on an external supplement has not been proven.”
health.clevelandclinic.org/...
If you start reading about melatonin the first things you come across are all kinds of popular interpretations. And often scare mongering. I have grown to distrust poor-quality journalistic summaries of medical questions.
Speaking of which, here's a journalistic article from an institution focused on sleep. They are warning against melatonin:
sleepreviewmag.com/sleep-tr...
On the other hand, here's a pretty good pro-melatonin article from University of Michigan, which I would consider a high quality source:
medicine.umich.edu/dept/psy...
Thanks to everyone for giving me this opportunity to review one of my supplements! 😂
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So this is my reply. I suppose I should make it a actual full post. It's a ongoing disappointment that this item will now go into the black hole of Health Unlocked. Decent resources that many people post are very hard to find once time goes by a bit. There's no decent voting and curation function on this website. From the software perspective there's not enough investment and improving the resource.
For restless legs, magnesium, b6 and b12 are all supposed to be of some help.
Magnesium for sure. (And probably exercise too 😃) I'm not sure about the B vitamins. I don't take any as a supplements; no doubt I'm getting lots from diet. From what I have read each B vitamin is different and it is all very complex. And there seems to be some risk - so no B vitamin supplements for me for now.
From food is always preferable 
Someone on board told me that Dr Sartor from some big medical centre said vitamin B12 is a big no no if one has prostate cancer and also vitamin E
JohnInTheMiddle, just want to express appreciation for the depth and clarity of your review of Melatonin in this setting. I completely agree. Also for Magnesium: most common and inexpensive is Magnesium Oxide which is notorious for causing diarrhea. Magnesium chloride does not have this problem. I take it in the product Slow Mag, time release, 1 or 2 tablets per day. Then there is Magnesium-L- Threonate which is the only one that crosses the BBB into the brain for cognitive and CNS benefits. It is more expensive but worth it in my opinion. I take one every evening. Kind regards to you and all. MB
Magnesium Citrate also causes diarrhea at higher doses, like at 400mg per day. I've switched to Magnesium Bisglycinate and that did not cause any bowel issues.
I have tried L-Threonate hoping for cognitive benefits but after the second bottle was emptied I did not purchase any more as I could not feel any difference. I have since added Curcubrain and Dopa Mucuna for brain and cognitive support and I feel like I get more mileage from those but it is not quantifiable, just a feeling.
I had problems and now use THC to sleep like a baby
The information you’re getting is all meaning well of course, although some of it is purely conjecture, hearsay etc. However, that he should get as much exercise as possible is inarguable. Even then his sleep may still be less than great-it can be a very pernicious thing with our disease for a lot of reasons.
But exercise often cures the problem and if it doesn’t, is more beneficial in more ways than anything else he can do or take by far.
Mainly resistance training ? I have spoken to one physiotherapist who can come home and make him do exercises with maybe resistance bands
Resistance and cardiovascular both, ideally. What are his exercise habits currently?
He walks for an hour and does some stationary cycling
Yes resistance training for sure then. He needs it anyway, but ADT heightens that need. The testosterone suppression wastes muscle, something no older person can afford. Cycling is good but not nearly enough.
It will also almost certainly help him sleep better if he does it regularly. Great luck to you!
At first I had to take lorazepam. It made me sleep but it causes addiction and bad mood. I managed to stop using it. Then I used melatonin 2 mg.But really now I can sleep ok after 5 years on ADT without taking anything.
Just Idon't drink much the hours before, and so I don't wake up to pee several times.
If there is pain, ask the doctor about what to take to stop the pain.
Most important, don't use the phone before going to bed or in the bed. And never watch it if you wake up.
I was on Orgovyx for 6 months and had terrible insomnia. I would fall asleep ok, but then wake up 1-2am and for the life of me could not get back to sleep. Melatonin helped a little. Since treatment and recovered T my sleep is back to normal
Orgovyx does. I normally slept between 7 and 9.5 hours a night. Since I began Orgovyx last month, every night I wake up after 5 hours of sleep. Eerily consistent.
Also, falling asleep has become more difficult under Orgovyx. Takes much longer at night and I have become unable to take short naps because it takes more than a hour to fall asleep.
Doubtful. I've had occasional insomnia since long before cancer and ADT has not changed anything. If you're saying your dad is 3 to 4 weeks into treatment, that's far too soon to make any conclusions about the treatment's side effects.
I have been on orgovyx the past 12 months, and several years ago also for 12 months. It absolutely causes me to not be able to sleep, sometimes I can't fall asleep and other times I wake up after 4 hours and can't get back to sleep. Another thing that most ADT drugs do which is verified by my urologist is that they somehow seem to sensitize the bladder and cause one to get up and have to pee more often during the night which also interrupts sleep. Between those two side effects my sleep is bad and I'm tired most of the time. I take all the supplements mentioned above and I exercise 3 hours a day 4 days a week but as soon as I go back on orgovyx insomnia sets in very quickly. I have tried melatonin but it made me sleep worse. The oncologist suggested the prescription Ambien but that has a number of side effects especially if taking long-term.
I have been on all three types of ADT drugs and would still choose orgovyx over the other two.
I wish your dad the best of luck I just figured it is what it is and there's really not much that can be done without taking more drugs which I'm not willing to do.
Does he have hot flashes at night?
Yes it absolutely does. Shortly after I startrd Orgovyx my sleep cycles have been all screwed up. Insomnia is very bad I have no doubt it was caused by the ADT.
I agree with the ruminent thinking, post surgery peeing patterns, lack of post coital exhaustion (it cannot be under estimated), but I have foun if I can keep 3 dogs off the bed, it also helps. Seriously though, I’m in agreement with the preponderance of deeper existential thoughts and reflection on aspects of the past, present and future
See my reply to JohnITM above. Regards. MB/Paul
yes - it sucks . Pot gummies work for me
I take magnesium glycinate two hours before bedtime and time release melatonin one hour before bedtime. Melatonin inhibits magnesium absorption so I don't take the two together. 266 mg of magnesium and 4mg melatonin. Also, magnesium glycinate pulls water into digestive tract so don’t over do it. Magnesium chloride does not have a laxative effect but isn’t as good as a sleep aid. If your dad is a milk drinker, a small glass with the magnesium may help. I hope this helps, God bless.
Thank you for the useful tips 😊
Tinkudi, Orgovyx has definitely diminished my sleep. I’ve been on it for 5 mos now. The problem stems from one of the SEs I’m having: high BP and pounding heart. My tinnitus has also doubled in amplitude. So, between the the CV issues and very loud ringing in my ears, I get about 5 to 6 hours of intermittent sleep. I’m not taking anything for it. Sorry, no suggestions.
In my experience. Insomnia at begining but after a year or two, no more insomnia.I would avoid meds for insomnia if I could go back in time
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