@Sugarhouse and @axolotl - Many Users wonder that the Baylor Study has been waiting for release now since April and nothing ist Heard about. Do you have some further Informations for the community. @holyhead says it can take 4 - 6 Months?! Thanks
They donāt know eitherā¦I talked to axo about it awhile backā¦All we know is itās done and submitted since atleast April.
Unless the have a mountain of studies to go through and this one is just thrown on the pile?
Do you really expect the study to bring about an immediate treatment or cure?
No but it could bring peace of mindā¦Iām dead either way but I would like to know what was discoveredā¦letās donāt go down thus rabbit hole againā¦Anyone who has been here awhile knows the condition is permanent and as awor and others have said there probably wouldnāt be a treatment or cure in our life timesā¦pfs is as complicated as curing cancerā¦
Much like hormone resistant prostate cancer billions have been spent with not much answers and I think they did believe at one time that same mechanism is related to pfsā¦
Everybodyās dead either way, PFS or no PFS. I donāt see how it would bring peace of mind - we know something has happened to us all regardless of whether itās published or not.
Wouldnāt you like to know scientifically I mean?
Yes nobody gets outta here alive unfortunately
Well, it would be nice to know what we are dealing with.
Like, is it something you can potentially cure?
Really? When?
Itās in the 2009 thread here where awor first started organizing the studies and talking with experts on the androgen receptor and androgen signaling.
Time frame for this stuff isnāt even years. Itās decades baylor proved thatā¦it takes enormous amounts of time and money for this to move forward. He did say some hope in that our own bodies repairing was more of a hope.
I would say if anything that mindset has only strengthen since that timeā¦
One good news after another
Itās unpredictable and unknown howeverā¦but the years are rolling by fastā¦we need a sudden advancement in this.
But if you and others are saying that there will be āno treatment or cure in our lifetimeāā¦then why would a āsudden advancementā be hoped for or could even help us IF thereās nothing
Anyone who says there will be nothing, are they saying this out of immense frustration and negativity (which i completely understand)
I just wanna know where it comes from
Can anyone really say thereās ānothingā
Personally, I donāt think thatās true
Or maybe I donāt want it to be true
Idk
Guys, itās none of you in particular, but this is why we typically end up shutting down Baylor threads
They just lead to endless speculation and pointless back and forth.
None of us know when it will be released or what it will show. Thereās no point talking about it until itās released. If it happens, great. If it doesnāt, we just need to get on with the things we can control, which weāve mentioned on countless other posts.
Can this disease be cured? Again, nobody knows. The fact is there has been such little research to understand the condition nobody can possibly say, or put a reasonable timeframe on it. Awor never said a cure isnāt possible, only that if we continued on our trajectory it would take many years.
That was a decade ago and in the years since, this community has continued on mostly the same path. Letās not waste another decade. Get involved with what weāre doing, control what we can control and letās start actually taking some small steps forward.
I wanna know for sure if anyone on GOOD authority said there will be nothing for certain in the way of a treatment or cure
If not? People gotta STOP saying that on here
I completely understand the despair, unfortunately
But some visit here for help or guidance and instead get āyouāre fucked, deal with itā
How can u offer guidance itās extremely dangerous as some peopleās advice has worsened them considerably even causing suicide as what helps some has hurt othersā¦
I wouldnāt in good conscience advise anyone on here in terms of trying ātreatmentsā because there isnāt anyā¦
Guidance, reassurance, moral support
Itās a lot better than negativity
Just so someone feels not alone is what I meant
And Iāve never advised anyone on treatments except for a few benign supplements like magnesium for insomnia even though Iāve dabbled in some other treatments
I wouldnāt in good conscience tell anyone to take something especially if they arenāt comfortable with it
But moral support? Absolutely
Yea thatās great I wouldnāt take any supplements awor simply took milk thistle and worsened considerablyā¦to the point he never recovered back to his previous baselineā¦
No one knows the future but just being realistic I wouldnāt set myself up thinking baylor would be a cure or something like thatā¦
A sudden advancement might be detailed genes that are damaged that could tie in to other issues like the prostate cancer issue I mentioned earlierā¦A guess is its genes that are highly adaptable that control this so prostate cancer still grows without the androgensā¦It is like the opposite has happened to us that the expression has changed or adapted that we are incredibly insensitive to androgensā¦
Nobody knows. Itās as simple as that. We donāt know the nature of the issue. Nobody will ever say nothing can be done even if we did know what it was, as the state of the art is always advancing and the future may hold technologies which might be able to assist us.
@holyhead some do improve with time while a very unlucky few of us unfortunately get progressively worse. Whatās your story āsorry couldnāt find itā and what are your sides / current situation