PURPOSE of Baylor study...

Science PFS Research
#1

I got a response back from Baylor with info on the study and what to expect. I must say though that I am VERY concerned with the whole ‘premise’ for doing this study. Nowhere does it mention PROVING Propecia CAUSES PFS. Instead, they appear to only be searching for those with DNA that are more likely to get PFS. To me, this says the Baylor study is more concerned with identifying and blaming our DNA than it is with proving cause. We already know the freakin cause. Furthermore, this is the sort of testing that Merck should have done before the FDA approved it for sale.

…from the email I got…

First off, thank you for your interest in this study. I’d like to start by giving you a brief overview of the study so you will have an idea of what to expect. Please see below for information regarding this study that we are conducting at Baylor College of Medicine.

It’s important to emphasis that this study is not a treatment or therapy investigation. Rather, the purpose of this study is to try to determine why some men who take finasteride develop PFS but others do not. The principle investigators in this study (Dr. Khera and others) believe there might be a genetic reason – that certain men might be more susceptible to developing PFS compared to others. The aim of this study is to investigate, at the genetic level, men who took finasteride and compare them against men who did not take finasteride. The goal is to identify a difference, which might then lead to answers about what causes PFS and how it may be treated or avoided.

#2

Yea, got to love or avoided.

#3

Your concern is 12 months too late. This information has been available since the study was announced a year ago.

They are also examining AR expression, similar to BWH.

#4

The information they are investigating is vital. To know what is the difference between someone who gets PFS and someone who doesn’t. This might facilitate ‘answers about what causes PFS and how it may be treated or avoided.’ My emphasis.

Obviously there is the usual safe use of language in their statement. They say ‘may’ and ‘might’ instead of ‘will’ and ‘definitely’. This is the nature of research. They don’t know what the outcome is until it has happened. They take a line of enquiry and then explore it. That is what is happening here.

As stated in your post, this research ‘might lead to answers’.

This is more than worth backing, it is critical.

#5

Potentially going backwards it can be of help, potentially. If they identify a certain group of genetic factors that we all share, they might understand based on those factors what we actually suffer from. To be honest, I was never too interested in the Baylor Study, I anticipate at least some findings from the Harvard study, that can help scientists investigate even more based physical symptoms and blood work.

Example- that dermatological study I posted where doctors were alarmed that an increasing number of men who took finasteride developed melasma. That’s an actual symptom that leads to more answers about what our bodies and why our bodies are reacting a certain way. I think finding similar physical conditions will lead to an answer eventually

#6

Maybe you should ring these universities and explain your fucking massive insights and expertise on this matter. Obviously you know far more than the people at the PFS Foundation and the researchers working on this.

#7

So gelhead, do you mean like when I theorized for two years that there is an estrogen to progesterone imbalance and then a few weeks ago the dermatological study came out that demonstrated finasteride patients were showing an alarming rate of Melasma, which they theorize is do to an imbalance of progesterone/estrogen?

You mean I should have said something 2 years ago?

#8

I agree Gelhead. What an absolutely laughable comment by Finatruth, yet again.

He was “never too interested in the Baylor study”, but he DOES anticipate “at least some findings” from the Harvard study. Well, thank god he thinks at least one of the studies might be worth everyone’s time!

HAHAHAHAHAHAHAHAHA

It appears we still need more participants for the Baylor research. Lets focus on things that actually matter, and not waste time on borderline insane posts such as these.

The notion that anyone here is more qualified on how to attack this than actual research institutions will always be completely absurd. That is not going to change.

#9

Amen. We should be ON OUR KNEES thanking Baylor and Harvard that they are even looking into this condition. Just get your ass to Baylor so we can have TWO major studies released in ONE year!

#10

I am very thankful for both studies, it seems like the finger is pointed in the wrong direction. Our DNA or Merck.
Regardless of any study identifying susceptible DNA profiles for getting PFS, there are dozens of scientific articles which clearly show how dangerous Finasteride is already.

I suspect there are other reasons for such a LOW participation rate at Baylor. They only have 12 guys and need 13 more and it’s been well over a year. If they have to meet the goal of 25, should we even expect Baylor to publish results with so few participants? Could it be the study design?, Poor response to those who inquire? What else could it be that would cause such a low turnout? I’d like to know how many have inquired and were rejected or simply didn’t get a response back from Baylor.

It seems PFS may be to blame for negative mindsets as well, so I can understand and relate to those who post negative responses. It’s best to just move on and try to be as intentionally positive or helpful, even if your being hounded by negative thoughts. I try to keep it real and honest, even if it invites criticism.

I’ve already had the vast majority of tests listed by Baylor, so I emailed them back to see if they would accept test results from my other doctors/labs. No response. No followup.

#11

I wouldn’t give up just because they haven’t called back. I agree with you that we should keep our responses positive…but it can be hard.
I am back on my feet financially - and am stable enough to keep my job as a teacher so I will be making a $300 monthly donation to the PFS Foundation. Here is today’s payment: imgur.com/aLNXHaw

Please - if you CAN donate, DONATE.

#12

This has already been discussed, towm8er.

It’s largely because, without insurance, participants are expected to pay $4,500 in medical fees. Add to that, travel and accommodation - many are simply unable to cover the costs.

#13

If you are having issues with lack of response then you need to PM Awor with the details, if you haven’t already. He requested people do this in a previous thread.

Please see signature in respect of payment of fees.

#14

Gelhead, the statement regarding fees in your signature does not appear to be valid. Please look into it.

#15

Mark_UK…have you contacted me and I told you that there was no money? Contact me if you want to participate…

#16

I already did, along with Philip Roberts. You both said the same thing - a small sum had been put aside to cover the cost of just two people. Two U.S residents had already been pre-selected. I sought updates and was told there had been no change.

Is this no longer the case?

#17

No. That is not the case. We have the money. I am sorry you were mistaken, but please stop making this post. Contact Phillip Roberts again and it will be taken care of. Anyone else - same thing. Let’s get this done.
Adam

#18

Thanks for clearing that up, Jorbie.

Anyone thinking of participating in the Baylor study should go right ahead and get involved.

#19

I live 1500 miles away from Waco texas so I’d really prefer not to go there, but if they are really not able to do their research because only 12 people have showed up, that’s atrocious and will do my part.

I’ve emailed shatabdi.satpathi@bcm.edu just now, and will wait to hear back.

Also, a big thanks Gelhead and Jorbie for keeping optimistic and positive.

#20

Don’t wait for anything regarding Baylor. It’s the mother of all mistakes. Hound them until you get the response you need.

Also, hate to be pedantic, Jorbie. But I was not “mistaken”. I was explicitly informed otherwise. However, thanks for the update.