Some days ago i was surfing on the internet and i found out this: FCX-013 by Fibrocell. Here you have the link: FCX-013 linear scleroderma therapy in development : Fibrocell (http://fibrocell.com/pipeline-clinical-trials/fcx-013-gene-therapy-for-linear-scleroderma/)
What is FCX-013? Essentially, it's a developmental drug which aims to ameliorate or solve Scleroderma. It consists in a genetically-modified fibroblast which "over products" MMP-1, which is a metalloprotease which breaks down collagen. Pay attention: it's not like Xiaflex: we already got MMP-1 in our body, endogenous MMP-1s, but this drug "over expresses" the genes who start the production of it. It will be injected under the skin, then you'll have to take an oral drug which stimulates more the protein expression. Once the fibrosis is resolved, the patient will stop taking the oral compound which will control further MMP-1 production.
What do you think about it? I've already contacted Karen Casey just 5 minutes ago, at the end of the post you'll see the email i've written to her.
What do you think about the compound? Could it be beneficial to us, in your opinion? Let me know. Sorry for my bad english.
"Dearest Mrs. Casey,
my name is -----, i'm 25 years old and i'm texting from Italy. I am a member of the biggest Peyronie's Disease forum in the world, Peyronies Society Forums - Index (https://www.peyroniesforum.net). I'm writing this message to you looking for some hope from Fibrocell. Luckily, i'm not suffering from Scleroderma, but from Peyronie's Disease. Peyronies Disease is, essentally, a buildup of scar tissue inside the penis, which causes pain, horrible deformities and erectile dysfunction. As you can imagine, this is not a life-threatening disease, because it's impossible to die from Peyronie's; but it has DEVASTATING effects on men's mental health and men's quality of life. Partners and other members of the family are often involved in the pain causaed by this kind of disease, since medical cures cost a lot and have little or no effects.
The gold standard is, at the moment, the "Xiaflex" which is a new drug which only ameliorates a little bit the bend, but doesn't cure the disease nor prevent future worsening of the condition. Other possible "treatments" are surgery, which have high costs, horrible outcomes in most cases (for example, huge loss of penile lenght and functionality) and doesn't cure the disease itself, but only correct the curve.
So why am i talking to you of Peyronie's? Because i strongly believe that, in some ways, FCX-013 can benefit and be a real cure for people like me. If MMP-1 are really able to "eat" the scar tissue, this would be really fast in a "small" area like the penis; and it could solve the problem to its root, bringing light and hope to the patients and offering the first, real cure for the disease.
I know that you're targeting scleroderma only, but i would really be glad to know if, theorically, your drug can work on Peyronie's disease too and if you are willing to talk to the doctors of Fibrocell to bring them the "idea" to apply the drug to this devastating disease.
From the deep of my heart i thank you and wish you an happy new year."
I just emailed her as well. If she replies back I will post.
it scares the hell out of me to have to live with genetically modified cells for the rest of my life, even though they supposedly require an activation to do their thing...
Why does that "scare the hell out of you"? If you had a straight choice of having a crippled Peyronie's dick for the rest of your life or live with genetically modified cells, we all know which one you would've picked.
I totally agree with "Godisreal" (i don't trust God anymore, i trust what you just said LOL). What do you think about this bro ?
UPDATE: No answer from Mrs. Casey yet.
hope795, I believe a solution is already here, or possibly around the corner. As my case is now, I'm "okay" with it. Oral treatment is working, no doubt, but it's still a very depressing situation for me.
It is getter better, which is an overwhelming & great thing to admit. However, I can't stop thinking about the forgotten and hidden solutions like tissue engineering & stem cells. The cure is, like I just mentioned, already here.
Hello Godisreal, happy new year! If the cure is already here, tell me please, cause i've found no cure for my case, even if it seems one of the most beautiful peyronie's cases ever (no plaques, only collagen buildup that you can't even touch since there is not a "plaque" but just an hardening of the tissue)
Hey hope sorry to hear that, but is that collagen deposition seen on ultrasound, can you see where it is
Tissue engineering & stem cells are revolutionary when it comes to fibrotic diseases like this one. But you're right, there's not much you can do if you're a sheep of the law. FDA-approval is mandatory for medicine/new techniques to become available for the public, legally speaking.
Me personally is very young and my case is not horrible as many others but I still won't settle for this in the long run. There are indeed things that are proven to work, but a cure is already here. Most people, however, won't do anything that could end them up in jail. Same goes with doctors.
I have a collagen build up like you on my dorsal side, close to the glans. I know this is completely reversible with the available treatment, but I will definitely step out of the law's boundaries and get the treatment that will cure me for real, one day.
Godisreal looks like us in the first place. Great hopes, then time goes by. And beliefs start wearing out.
Do you know why "beliefs start wearing out"? That's because you are sheep. If you wanna wait for an additional 5 decades before these top treatments gets approved by the law, go ahead.
If you want to keep whining for the rest of your lifetime, go ahead. I believe venting is a great thing, but just crying constantly over a problem that already has a solution - is in fact pathetic.
Very interesting Hope
I can see the similarities between this condition and Peyronies
Let us know what their reply is please. Fingers crossed this could lead somwehere
Fix
GIR, could you state your opinions and beliefs without calling folks sheep and pathetic please?
Ehi dude, guard your tongue. I have 3 straightening surgery ay my back and I travelled many countries in order to tackle my problems. Also I'm the only one who went in person to look for autologous graft replacement, In North Carolina. Right from Italy. In an American based forum...
Go play games with your God and don't step in things you don't know.
Agreed. I have plenty of resources and I'm not afraid of anything. If you know of a "cure that already exists," then please inform us. Otherwise it's just ridiculous talk.
3 different adult men getting pisst off because of what? Because you wont admit the truth? I never said you hadn't tried a list of things in order to fix your problems, Jack, that is great for you btw.
Congratulations, you stepped out of your comfort zone. That is step one.
But how many times do I have to say that just because trials and medicines are not approved by the law, doesn't mean they don't exist? If you're so proud over your worldly travel to "tackle your problems" then try hitting the unlicensed geniuses up, those who don't get permitted by the law because their methods or trials are a little bit out of the ordinary, or a little too expensive, or a little too difficult. Then we can talk about tackling problems.
Money can buy the majority of people in this world, if you wanna call that statement childish reasoning or whatever - go ahead. But it's the world, man, weather you like it or not.
As soon as I've given my case the time it needs with the legal treatment that is available, I will most certainly step out of this socialistic sack of sh*t and fix my problems for real.
Obviously there could be major complications involved with stem cells for example, things that keep the law from legalizing and approving it. That is completely sane and there's really nothing weird about that. But we don't know that, because they won't share those types of things with the actual sufferers out here surrounded by law system.
However, it's sad that you say "it's ridiculous talk", I know just as much as you people. But the difference is, I don't fold for the law-system - this is mainly because ive met too many "professionals" in my short life-time that have their professionalism laying on a kindergarten level. They are driven by money and greed, like the majority of people with spotless psychical health are. They don't give two f*cks.
These arrogant pricks are not only the doctors that have been "helping" me with my dick problems. They are to be found everywhere, but most people just accept this pure arrogance and chooses to feel bad for the rest of their lives instead.
Tony, I didn't call anyone pathetic, I said that the act of crying over a problem that is solvable is pathetic - which it is imo. And yes, I did call him a sheep, not because he hasn't tried and tried to solve his problem with great optimism for years - but because he denies the actual existence of a cure, which I strongly believe are stem cells & tissue engineering. This goes for all fibrotic diseases. The research is here, the trials have been made on animals with very alike body-plans as humans - I promise you that if a human w/Peyronies Disease would give a qualified doctor a chance to treat him like he treated the rats he experimented on - this disease would become irrelevant very fast. It would be a similar reaction (but in a smaller scale) as the discovery of antibiotics that Alexander Fleming shocked the world with.
The difference is, our disease isn't life-threatening, that equals the legal system don't give a f*ck about it. Why do you think Vitamin E is still the most commonly prescribed treatment for this disease? Because ITS NOT LIFE THREATENING. Cancer = A lot of attention because ITS LIFE THREATENING. HIV? A lot of attention because, guess what? It's in fact life threatening.
Our problem JUST slightly f*cks up our only dick that we use so passionately throughout our life, people that don't suffer from Peyronie's couldn't give a f*ck about a disease that JUST deforms the male genitalia.
The thing that is "ridiculous talk", Samsung, is to say that a cure doesn't exist just because your local doc won't stick it up your fkn mailbox and hand it right to you. Because that is what you expect, isn't it?
Ignorant people, gets me sick.
Play games with God? Haha
My text here is a new little bible for you, maybe it can knock some sense into your heads.
What is the cure again? ...
OMG, this string is getting ridiculous! GIR, many here would pay anything and go off FDA approval for a cure...we're all here in the same boat!
GIR, i didn't read anything in your little bible about the cure. I repeat the question over and over again: If you're really aware of an existent cure, can you tell us please? I would be 100% satisfied if you show us your pictures before and after the cure and proof that this "cure" works.
I wait for your reply. Thanks to GIR and to everyone for the high involvement in this post!
Listen here Mr. Pornstar, the cure is for the 100th time stem cells and tissue engineering.
There is, for the 1000th time, a reason scientists perform experiments on rats.
For one thing, we're both mammals and give birth to living young. We're both warm blooded, and rats eat everything we do... and live where we live. More importantly, rats and humans often suffer from the same diseases - therefore, combined with our similar body plans and functioning, rats that get cured from diseases often prove that humans also get cured from the same disease with the exact same treatment. So NO, I CANT SAY IT WORKS TO 100% BECAUSE NO HUMAN HAS OFFICIALLY GOTTEN Peyronies Disease-TREATMENT OF THESE KINDS. Which means no one can say it works to 100%, but the probability is astonishingly high since it in fact CURED rats/w Peyronies Disease that received the treatment.
So in conclusion, to me, a treatment with +90% success rate is already here. It's just not tested out on humans yet. If there was a guinea-pig offer for getting treatment of this kind, where I would personally pay for all the eventual consequences & complications, I would take the offer within the blink of an eye - and so would you.
And it will happen.
God bless
Godisreal: let's start with the first statement. I didn't like the introductory part "Listen here Mr. Pornstar". What do you want to say with that? Are you joking me because you read my signature? Remember that we're all in the same boat, "brother", and i may not be perfect anymore but if you're lurking here it means that neither you are. Always remember it, especially next time, before making fun of a sick guy with the same disease as you have.
Regarding the next part, i 100% agree with you, stem cells and tissue engineering can easily be the solution to this crap - and FCX-013 which i made a post about too.
But, as you said before, stem cells do not grow on the trees, so unfortunately they're only available for researchers or MDs. If a MD would propose to me to do that, i would do it without any doubt.. but, unfortunately, they will wait the usual 3 clinical crappy phases before making it available to the sick people. Like always.
Can you link me any studies about what you were talking about? I would be really interested in reading them.
Please do not take my joke seriously. I'm also a man who loves sex and women, and yet here I am like the Devil sent me down a bottomless pit just for fun. You have a crippled dick & so do I.
We're both f*cked at the moment, and we are stuck with the most pathetic and also one of the most forgotten diseases in the world. Not to forget, the disease with possibly the biggest psychological burden on the mind of the man.
This disease; however has upgraded my mindset from level 1 to 10, I have more knowledge about life and a better perspective than I ever thought I'd have. Especially at this young age. If we get a out of this living nightmare, we will be at a mind-state that 90% of the world's men will never experience.
But if I, personally, don't get my dick back to nursing health - I won't be happy at the end. I know that for sure.
I can achieve happy things and live thoroughly through happy moments of my life, but I won't ever be fulfilled without my dick. And to me, it's not my dick down there anymore. It's just a scarred mess.
But God will take us out to the bottomless pit, "brother".
And with God I mean stem cells & tissue engineering alongside a skilled surgeon.
And the study I was talking about was from 2014, when Dr. Atala successfully performed stem cell surgery on rats with Peyronies Disease. They were completely cured. Think about that for a second. The cure is already here, man. JUST FKN HANG IN THERE, WE ARE ALL GONNA CURE.
Just think about stem cells in general, and how fascinating it is.
Quote
"Stem cells are undifferentiated cell populations with antifibrotic properties that are capable of self-renewal and of differentiation into various kind of cells or tissues".
Same professor (Atala) was with the first medical team who implanted a lab-grown bladder into a human. The human has remained with full bladder-functionality many years later. This was a long time ago. And if you people do not believe that professionals are already capable of removing scar tissue and replacing it with lab-grown stem cells (that are in fact proven to have the same function & healthy properties as the original tissue) you are very naive and/pessimistic.
Just because "nothing has happened" in many years doesn't mean nothing has happened.
The sufferers just don't have access to much information regarding "new" treatments that hasn't been "tested enough yet", as the government keep saying.
I can assure you that it is tested enough. All of those that do not have underlying issues along with Peyronies Disease (diabetes, genetic issues etc) will be able to get fully cured with stem cells. Believe me.
But try and think about your career or other things that matter in the meantime, because I swear to you, my Italian friend - we are gonna cure. Not get better, we're gonna cure.
Lastly, a top tip from GIR to all of you out there who suffer from Peyronies Disease;
Get the money, stack up, achieve currency, hunt the benjies - call it whatever you like.
The stem cell surgery is gonna be the most expensive treatment for fibrosis in history (imo) and therefore you would want to stack that money up in order to get your dick fixed.
Stop crying, and take my word on that. Get the money.
And hope794, i have a lot on my plate nowadays, but I can dig the original study up and post it on this thread when I have time some day.
All love, man. Take care.
Great comment GIR, sorry if i looked like rude. I just misunderstood your intent. I'll wait for the papers. Thank you very much for your involvement in this post. I don't 100% agree with you on every point but yes, basically i think that SC could easily be a solution.
Any update on this or should we also start emailing them?
No replies from her. I'm sorry guys. If anyone is willing to help me, let's make Fibrocell pay some attention to us! Email them, call them, go there!
I will and we should too, I think we should focus our efforts into contacting RND companies that have the ability to make a cure
In theory, isn't the that what P shot / PRP Stem cell injections? Although I've also read that there are no stem cells in Priapus shot injections ( despite often being sold as such )