"Compliance" with meds taking and timing is a big issue, as we all know. And research shows that especially with the elderly, compliance to meds regimes and timings by day and by week is difficult to follow. And the consequences are not good.
When one is on doublet therapy (whether or not one had also chemo and then triplet for a while) there's typically a schedule to follow every day. Some drugs like Abiraterone need to be taken every day on an empty stomach.
And then there are meds such as prednisone (which in this case goes along with the Abiraterone) that need to be taken on the other hand every day with food.
Many of us also take some supplements, e.g. especially vitamin D and calcium for the threat of osteoporosis from ADT. (And the ADT itself is in my case a monthly injection.)
The pharmacokinetics of the drugs above are slightly tolerant of imprecise dose timing. For the pills, by hours, and for the injections, by days.
But then we come to the new oral ADT Orgovyx / Relugolix. And because of the pharmacokinetics of this excellent GnRH antagonist ADT drug, it's recommended that you take it every day at exactly the same time.
And if you miss a dose apparently it's not a good thing. Testosterone production can resume quickly, thus triggering androgen receptors on your prostate cancer cells.
The big picture here is people with any kind of cancer often have to take drugs everyday according to a strict schedule. And one's risk is apparently significant if one doesn't stick to the schedule or even worse misses a day or two or more.
So I started thinking about this because of Orgovyx ADT. And I've been thinking that it would be great to be on Orgovyx because its profile for side effects, especially for cardiovascular disease, is very good. And then you don't have to have an ADT injection every month or every 3 months etc.
But what about interruptions in access to your meds? I originally was thinking about interruptions in terms of travel. Or worse, what if your house burned down?
Then I started to wonder about arrest. I have never been arrested in my life, thank goodness. And I don't believe I'm at risk of being arrested. But lots of people are arrested. And no doubt there's an overlap between populations of people who are arrested and people who are taking pill-based cancer meds.
If you are arrested, you might miss the following day's meds taking. And if this is Orgovyx this is not good. Even assuming you get bail right away. Probably not a big risk but for me I'm thinking maybe that would be a reason not to switch to Orgovyx.
And then I broadened out my reading to general pre-existing metastatic cancer situations and meds that all of us have to take every day. And what happens if one is arrested and has to go to jail. There's the initial period before bail, and then if one is convicted for a period of time the question of reliable and timely access to one's own prescriptions.
Also in a situation of incarceration, what about chain of custody for the meds? And security for the meds against tampering?
I found it oddly difficult to find out what one could expect if one is jailed and where one has a pre-existing medical situation that requires daily meds.
It was distressing to learn, maybe I'm naive, that one is at significant risk for not having secure and timely access to one's meds in jail. Although there seems to be a lot of variation by type of institution and jurisdiction. And as for supplements, even for something essential like Vitamin D, probably forget it.
My initial concern was both curiosity and just wanting to be prudent. Being a person with metastatic cancer is a strange situation, even if it not as uncommon as we would like.
But it's now in my mind that the situation for many people is likely very dire. There is incarceration and then there may be a "metastasis" of punishment, unintended but permitted.
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JohnInTheMiddle
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Thoughtful post. Keeping track of pills especially when travelling is a big deal. I have a 7x4 pill matrix which I load up before travelling, with buffer if return is delayed. Jail is another scenario which would need special arrangements.
Bravo! (And then you have to keep track very carefully of that 7x4 pill matrix 😃.)
One thing I learned, when I was away from home briefly and I was keeping pills wrapped up in tin foil in my breast pocket, was that the pills became quite warm even though they were several layers of fabric between my body and the pills. Who knows the impact?
Not sure about incarceration but they do have a program in place if you lose your bottle of Orgovyx, or it somehow goes missing. You have to jump through a few hoops but they'll get you a replacement quickly. You can probably guess how I know that, haha.
Avoid trouble and pray. I waited to start my Orgovyx so I have a lead time in stock. Not really an option once you start. I was told a missed dose means you need to do a restart 2 pill dosing. More worried about a SHTF event. - many of those on the horizon .
Wow! I'm guessing when you learned about Orgovyx, your doctors or the manufacturer "read you the riot act"?
And you actually delayed starting so you would have an in place stock! I do not recall saying this mansion to anywhere!
I've always wondered even about this with my Abiraterone - and even though it's provided without charge by our public health insurance here in this part of canada, they won't let you order your next bottle until 10 days before the previous one runs out!
I'm beginning to wonder how many disasters there are that we don't hear about because of this parsimonious "just in time" cancer therapy review.
Is your "delay starting" Orgovyx something a lot of people do that you are aware of?
"Is your "delay starting" Orgovyx something a lot of people do that you are aware of?" Answer I doubt it. I was given the brief on The standard of care , I now refer to as the The standard of scare,lol Here in the US during the big C you couldn't even find a roll of toilet paper to buy . How fragile is that.
I am aware of what some people do about Abiraterone with food, in some cases to lower the cost. It is less precise of course. But it seems that it could be a good idea in an emergency!
As for your second point I think we need to clarify it.
(1) Orgovyx/Relugolix is ADT (stop the production of testosterone "from the beginning"). (2) Abi is an ARPI (the path "in the middle" between manufacture of testosterone and its intended target at the androgen receptors), whereas the others you mentioned are (3) AR antagonists (ARAs) (they jam up the androgen receptors on the surface of prostate cancer cells, sort of "at the end").
I have never heard that anybody does just "singlet therapy" either with an ARPI or with an ARA. The whole meaning of the giant RCT trials which have defined doublet therapyfir mPCa is that "two things are better than one".
One example - under extreme selection pressure, prostate cancer cells can evolve to vastly multiply the number of androgen receptors on the surface of their cell walls! So that these receptors can catch even sparse suppressed testosterone molecules floating by. This is just one of the tricky mechanisms that we have to fight against. There are others. (Having more than one therapy is kind of an insurance policy.)
"Doublet therapy", which is the amazingly successful regime that many of us are enjoying now, is based on ADT + (ARPI or ARA). My sense is "yes it's a big deal" if you miss one of the elements in your regime.
However, with regard to "singlet therapy" with the four things I mentioned, I think at least several posters on this forum, among others, are doing Daro or Enza, for example, as a monotherapy. And I believe that some trials are testing that very treatment, or have already.
But I'll leave it to those doing that monotherapy to step forward and say so.
I didn't mean to quibble with your post, which raised very good issues.
I like to organize things into patterns - because at the beginning all the different therapies and whatever seemed kind of confused and like playing a game of whack-a-mole.
I have also seen people who seem to be doing singlet therapy.
My sense is that monotherapy may appropriate in situations after resistance where there are different protocols and the big triplet therapy RCTs no longer apply. It is no longer "de novo". So it would be nice if somebody could systematically and simply summarize monotherapy and when it is applicable.
Because newbies on the site I think sometimes get overloaded and confused. And we read something and we think, hey what about monotherapy? And then they are not prepared to talk systematically and effectively with their oncologists.
Under de novo diagnoses there are acknowledged appropriate therapy patterns. And after resistance there are different acknowledged appropriate therapy patterns. And then there's the different individual circumstances for each person.
You are doing a great job of doing exactly that. My comments were just comments to supplement what you said, although perhaps they were more confusing to a newbie than enlightening.
Thanks DHCCPA! (By the way previously I had wondered if your your moniker was related to the ubiquitous DHCP networking protocol - apparently not. But this time I thought name looked like the name of a political party in a small country. LOL.)
As for newbies and confusion, bravo this forum. It's odd but I find there's something about a forum that is sometimes better than lots of newsletters and helpful posts and articles from big institutions. I do wish however that Health unlocked would invest more and improving this forum specifically. The search and the curation of helpful material is poor.
You and I have been around for a while and let's keep it that way 😂
We all know that compliance is an issue with any drug taking regime. And for those of us with metastatic hormone-based cancers, we also all know that after a while all of our therapies, sadly, fail. And what I'm getting a sense of from the replies so far is that this is a bigger deal than we imagine.
Maybe the failure our therapies, and the development of resistance and progression, could be related, least partially, by a few compliance mistakes over the course of a few years?
I did some searches on this and didn't turn up much. It would be a hard thing to study.
I do believe that following one's regime closely is a good idea. This is one of the reasons I'm against holidays. And the topic here is the risk associated with surprise interruptions in meds availability.
I have an emergency pill vial that is attached to my wallet. I did not go to jail but to the hospital with a pathological fracture. You would think that the hospital would have aces to your medical records and start you right away on your meds or at least respect your right to take prescription drugs that you brought with you. No they seize them and possibly give them back when you are release.
So what I learned is to hide your emergency stash. This is probably not possible in jail but who knows what their policies might be.
The last place I was at for "after care" took my narcan which I keep with me since I am taking morphine and on release they could not find it.
It took days to get them to respect my PRN prescriptions for morphine and I had much more pain that I should have.
Sorry doublet and triplet mean nothing to me.I had 33days (5 days a week) of radiotherapy and 4 sessions of chemo (1 per week) should have been 7 but it was too much for me so said no thanks.
This was for a tumour in the throat (pharynx) now 4 weeks after the rt the consultant put a scope down my nose looked round the throat and said the tumour is gone. Still got to have a scan to confirm but looks hopeful.
That's why it's called "The Joint"...........cause you could get as much as you want. As far as meds are concerned just get real friendly (or marry one or two) with your fellow inmates for anything you need...
Hi John not to make light of your over thinking 😀. But my husband switched to orgovyx and it was was a big difference than the Lupron injection. He no longer had HBP his blood sugar levels went back to normal and the best part if he had a reaction all he had to do is quit taking it. He now is just on Orgovyx and Lynparza and is holding. And he is way overstock so we don't worry about running out. The Pharmacy calls every month and asks how many do you have left like were going to run and count then 😂. Ship them out next day we have not had a problem. We have had to get those containers to put your daily pills in that have Monday - Sunday because half the time you can't remember if you took your morning dose. Then rarely that night you might see you miss morning🤷♀️. We went to Europe for 19 days and ended up coming back in 5(I had him stop taking meds in Paris) my husband was in pain and sick we thought it was his cancer took him to Emergency with 102 fever turns out he got Covid . But I am glad I had him stop the lynparza because that weaken immune system . But he was off everything for two weeks he did do a start up and his numbers did go up just a little next test but now they are down below what they were so I am glad he went off everything it took him longer than usual to recover from Covid. Anyway I sorta went off in a different direction. Just wanted to say the committee in your head is over thinking it and especially if your not even going to jail🤭 Oh and the house burning down thing my husband was putting his pills away some place safe when were going on vacation( he takes a Xanax hates to fly) another time and little did I know he put them in the oven. So I turn the oven on when we arrived home after vacation and they were in a basket and caught fire and melted🫣 OMG I had to call all the pharmacies and get them replaced . So embarrassing !
Thanks for the even entertaining story Meshel 😃 and as for Orgovyx it's great to hear how your husband has a much better ADT experience with it and with Lupron. That's why I'm interested in it!
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