Calling for Study Participants for First Molecular Level PFS Study EVER ********************

Awor, if were are fortunate enough to find the root cause and there is nothing known to counteract it what direction do you suppose the research and this community take from that point?

Mass suicide? Maybe we should just cross (or jump off) that metaphorical bridge when we come to it. I know we all want cured yesterday but we need to be patient.

They say necessity is the mother of invention. Even if there is no readily available treatment that is no reason to give up, we would still be better off than we are now as at least we would know what it is we are actually trying to address.

I agree mariobros, this research is nothing but extremely positive

the most exciting thing i have read is that if we find our answer, it may actually help a lot of people and go into sickness beyond just “pfs”… i do not even know exactly what it means, but when i imagine it, it just sounds fascinating… thanks guys!

Awor, not to be overly optimistic, but you had previously mentioned that the scientists had a few potential therapeutic substances in mind.
In light of the recent discovery/discoveries does the possibility still exist that those same substances could help, or is that idea out the window at this point?

Thanks for all the updates!

I never said that. What I said was (copy paste from an earlier post):

Summary: We will only be able to assess the possibility of potential therapeutic approaches once we have a list of potential therapeutic targets at the gene level. Arriving at this list is what the next series of experiments will be all about. Any talk about curability etc. before having those results would be pure speculation, and I’m not inclined to do that.

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This is the comment being referred to.

I understand what you’re saying about speculating at this stage. I just remembered reading that and going “whew”. Sorry for any misinterpretations and for bringing up such an old post.
Take care.

Ok, got what you meant. My statement there was slightly misleading in its wording. What I meant to say was that there is a chance that existing substances can target potential candidate genes to favorably influence gene expression signatures. The alternative would be to develop new chemical structures from scratch, which would basically mean developing a new medication. This would be completely unrealistic, as the development of a new pharmaceutical product typically costs in the area of billions of dollars.

To round it up: We will only know if an existing substance can be of any use once we:
a) know which genes are abnormally expressed inside the cell
b) this knowledge results in a clear therapeutic target (i.e. the gene expression picture is sufficiently “clear” and limited to a small number of genes)
c) a substance exists which can influence the potential therapeutic target in the desired way

In order to arrive to c) we first need to have a), then we can start thinking about b).

Is that any clearer?

Again, sorry for the misleading wording in the earlier post. I am well aware of the fact that I have to be careful in my wording, but sometimes my own condition or time constraints don’t allow me to be perfectly clear in my statements.

Yep, perfectly clear now. :slight_smile:
Thanks man.

If its a molecular problem with the penis perhaps we can just grow a new one,
digitaljournal.com/article/281945
or get a transplant.
en.wikipedia.org/wiki/Penis_transplantation
Problem will be finding a donor :smiley:

Funny, but it wouldn’t solve the cognitive issues or the hormonal and chemical changes that have occured to us on a molecular level. Meaning that not just the genetics of tissues in the penis have been effected.

Hey Awor, any idea how long it will be to figure out a), b), and c)? If your starting the organization now, when do you think you’ll have analyzed the data and determined c)? End of 2012?

I really hope that this study is officially published soon Awor as I hope it will wash away much of the nonsense surrounding the problem. And that by doing so, people will stop trying to be armchair physcians and scientists and instead rally behind a more systematic and defined approach to solving our dilemma

Is it true that the publication is delayed because the scientists wanted more subjects to increase the power, giving them a better chance of getting published in a more respectable journal?

I agree that getting the first study published quickly would greatly benefit us. That way we have proof to show doctors that this isn’t “in our head” and will hopefully get more smart and dedicated doctors to start looking for possible treatments. Once we get the ball rolling we should see more benefits in terms of awareness, possible treatments, etc.

Either way, I’ve talked to (or had family members talk to) doctors across the country and in Europe and for the most part they all acknowledge that finasteride causes persistent side effects, but they are also still under the impression that “it should go away.”

Thats crazy because many doctors and even nurses I’ve talked to said that after a drug is out of your system which should only take a week or so with fina it should only take a few months for you body to normalize and if it doesn’t…

if it doesn’t…what?

What I was saying is that doctors think “time” will heal if it hasn’t already, which doesn’t seem to be the case. But, they still recognized the problem. Only one doctor I went to said that it was impossible for finasteride to cause my problems, but he was a dumbass. I went to see a guy with a much better reputation (he’s on the us news top 1% best urologists) and he said he knows about the problem but unfortunately doesn’t know the mechanism causing it.

Pls keep this thread on topic – ie, the research study, not experiences with doctors etc. Thx

This will in large part depend on how fast we can get the required funding together and how fast the patient recruitment process will go. Once we have all the biopsies, the scientists will have first results within weeks. But like last time, we won’t be able to disclose any information until the results have been published. Until then, the process will continue rolling internally, which after all, is the most important thing.