Tissue Engineering

[Fredca]

This seems to be the most interesting news in some time on the subject we care so much for.

Apart from poor marketing situations, which I am not so convinced of, likely another factor is at hand as to why this technique is not implemented in humans yet. First of all we do not know whether the rabits were in pain or not and how the 'functionality' was achieved. Also there are no reports of tissue asphyxiation and other complications or the prevalance rate of it.
The Doctor in question has proven that it 'can be done' but that on its own doesnt mean anything. We are missing a lot of information that would justify becoming enthusiastic.

[newguy]

Pardon my ignorance, but where is the Advocacy, Awareness and activism section?

http://www.peyroniesforum.net/index.php/board,11.0.html

[Fred22]

Ken,

Would you be interested in drafting a letter on behalf of the PDS, we could reach out to him as a site, after we kick around the idea, if people think it is something worth pursuing. Please post any replies in the Advocacy, Awareness, and Activism section if your interested.

Comebackid

Pardon my ignorance, but where is the Advocacy, Awareness and activism section?

[ComeBacKid]

Ken,

Would you be interested in drafting a letter on behalf of the PDS, we could reach out to him as a site, after we kick around the idea, if people think it is something worth pursuing. Please post any replies in the Advocacy, Awareness, and Activism section if your interested.

Comebackid

[kendotx]

I wrote a letter to Dr. Atala and his staff responded. I simply said that I was interested in the corpora cavernosa regeneration program and asked if he could predict when human trials would begin. Dr. Atala's staff responded by saying that the program is active and research continues however, it is not possible to predict when the technology will be widely available in a clinical setting. I believe the more of us that write the more interest will be devoted to the project, providing hope for the future. Thanks

Ken

[SSmithe]

Kendox,
I will definitely write a letter about my interest in the WFIRM as a Peyronie's patient.  Thanks for providing the address.  Any advise on how you think is best to word the letter?  IE What will get their attention, take me seriously, etc.  Do I write it to Dr Atala or Richard Dean?  Perhaps their response to you would shed some light on their thinking.
Thanks,
SSmithe

[kendotx]

Fred,
Dr. Atala is the director for Wake Forest Institute for Regenerative Medicine and he is also the Chief of Urology at Wake Forest University Baptist Medical Center. During Dr. Atala's urological career, I'm sure he has seem many Peyronies patients thus he should be very well aware of our plight. Anyway I simply wrote a letter indicating my interest in the program, and I'm happy to report they responded within a week. Perhaps we could all contribute to our own well being by doing the same. Conceivably, WFIRM administrators would realize how much demand there is for this research simply by receiving letters from Peyronies sufferers. I could be wrong but it certainly couldn't hurt for many of us to write and express our interest in the program. The address for Wake Forest Institute for Regenerative Medicine is listed below, I encourage everybody to write. Thanks

WFIRM
Richard H. Dean Biomedical Building
391 Technology Way
Winston-Salem, NC  27157-1083

[Fred22]

Fred22,
That 60 minute video is freaking amazing!  That second segment where the powder helps the body regrow organs is really cool.  I agree with you, of course they can help with Peyronies Disease.... How do we  bring our cause to their attention??

Told you it was amazing!  Tim might know more about how to bring our cause to their attention.  If I remember correctly he said he either met Dr. Attala (sp.?) or heard him speak.  To me this is the most promising research going on.

Fred

[SSmithe]

Fred22,
That 60 minute video is freaking amazing!  That second segment where the powder helps the body regrow organs is really cool.  I agree with you, of course they can help with Peyronies Disease.... How do we  bring our cause to their attention??

[Fred22]

Dito... I would gladly donate to an organization if I knew it was going directly to Peyronie's research.
SSmithe

I was speaking specifically of this tissue engineering work.  I really believe it can be done.  If they can make a bladder why not a penis.  If you didn't see the 60 Minutes show here's the link.  It's amazing.  http://www.cbsnews.com/stories/2009/12/11/60minutes/main5968057.shtml

[SSmithe]

Dito... I would gladly donate to an organization if I knew it was going directly to Peyronie's research.
SSmithe

[Fred22]

There seems to be confusion about exactly what parts are regenerated and how the process works. If one reads the article titled “Laboratory-Grown Replacement of Penile Erectile Tissue In Animals Suggests Potential to Benefit Patients,” on the Wake Forest Institute of Regenerative Medicine website, you can get a brief explanation of what happens. I will attempt to paraphrase the content.
The process only regenerates the Corpora Cavernosa, other penile tissue such as the glans, urethra, and skin remain intact.
-   Smooth muscle and endothelial cells are harvested from the existing erectile tissue.
-   Cells are multiplied in the laboratory
-   A 3D scaffold is molded using biodegradable material designed to dissipate after the organ has developed.
-   The scaffold in implanted into patient.
-   Cells are injected into the scaffold using a two step process allowing a great number of smooth muscle cells to be introduced.
-   The Corpora Cavernosa begins to develop and continues to do so until maturity level is reached. The entire process took about a month in the rabbit model.
According to an April 14, 2010 “Wired Science,” Article, the rabbits had fully functional penises at the conclusion of the experiment. Using logical thinking one could conclude the following;
-   A rabbit, although not human, has the same basic penile structure; Corpora Cavernosa, urethra, etc.
-   Functional human bladders have been regenerated and implanted for several years now, why is it so difficult to believe that the same is not possible with erectile tissue.
-   The cell’s origins are from one’s own body therefore eliminating rejection issues.
I believe the procedure is certainly feasible and I think the technology already exists. It’s simply a matter of refining the process to ensure safety and effectiveness.  Perhaps funding for this type of research is a concern, but given the large number of men with Peyronie’s disease, seems like donations alone could account for significant progress; just a thought.

Id gladly contribute if I knew the money would go to the correct place.  I saw the program on 60 Minutes and these doctors were performing miracles.  If we can organize a way to help fund this count me in!

[kendotx]

There seems to be confusion about exactly what parts are regenerated and how the process works. If one reads the article titled “Laboratory-Grown Replacement of Penile Erectile Tissue In Animals Suggests Potential to Benefit Patients,” on the Wake Forest Institute of Regenerative Medicine website, you can get a brief explanation of what happens. I will attempt to paraphrase the content.
The process only regenerates the Corpora Cavernosa, other penile tissue such as the glans, urethra, and skin remain intact.
-   Smooth muscle and endothelial cells are harvested from the existing erectile tissue.
-   Cells are multiplied in the laboratory
-   A 3D scaffold is molded using biodegradable material designed to dissipate after the organ has developed.
-   The scaffold in implanted into patient.
-   Cells are injected into the scaffold using a two step process allowing a great number of smooth muscle cells to be introduced.
-   The Corpora Cavernosa begins to develop and continues to do so until maturity level is reached. The entire process took about a month in the rabbit model.
According to an April 14, 2010 “Wired Science,” Article, the rabbits had fully functional penises at the conclusion of the experiment. Using logical thinking one could conclude the following;
-   A rabbit, although not human, has the same basic penile structure; Corpora Cavernosa, urethra, etc.
-   Functional human bladders have been regenerated and implanted for several years now, why is it so difficult to believe that the same is not possible with erectile tissue.
-   The cell’s origins are from one’s own body therefore eliminating rejection issues.
I believe the procedure is certainly feasible and I think the technology already exists. It’s simply a matter of refining the process to ensure safety and effectiveness.  Perhaps funding for this type of research is a concern, but given the large number of men with Peyronie’s disease, seems like donations alone could account for significant progress; just a thought.

[ComeBacKid]

Ocelot,

Actually, given that my own tissue used as a source of stem cells to generate a new penis would theoretically be at risk for developing Peyronies all over again, I think it is *entirely* reasonable to start out a few inches longer and thicker than I ever was!

Just saying...

Tim

Possibly not for everyone though, as my peyronies disease started from a severe trauma, I didn't just get it!

Comebackid

[Fred22]

Tim,

If this treatment pans out, what is your professional medical opinion as to when it might be offered to the general public? It's my guess it would take years , but I'm not familiar with the procedure.  Also, how would it work?  Would they have to remove the diseased tissue and inject stems cells to grow new tissue or......?

Fred

[newguy]

This certainly does seem like an area of promise. If real attention was paid to it, I'm sure that rapid progress could be made in the field of peyronie's. Of course for reasons stated, we're probably going to be playing a waiting game. It seems to me that progress is being made in various areas, just not very fast.

Once a emthod like this is available, I wonder how many men will come out of the woodwork and seem treatment for peyronie's.

[Skjaldborg]

Research into regrowing tunica will probably have to be "piggy backed" on to some other research, such as growing other forms of tissue in the body. If they figure out how to reliably grow bone and nerve tissue over some form of matrix and safely place it in the body, it stands to reason that doing the same thing for the penis would be in the realm of possibility.

On a side note, I wonder how many young men have lost sexual functioning due to IED blasts in Iraq and Afghanistan. It's got to be a significant and sad number. You get a wounded warrior with no legs sitting next to his wife and the funding problem would not be so bad as it is now. Regrowing penile tissue would be a boon to many forms of penile trauma, not just Peyronie's, or you know "The hilarious bent penis disease that only old men get™".

-Skjald

PS The quotation marks indicate sarcasm.

[Tim468]

Fred,

I completely agree about the suffering engendered by Peyronie's. But if you go look at the cute kids on the CFF site (www.cff.org) and you then go look in the mirror what do you see? I see an average looking middle aged man staring back at me compared to a beautiful baby.

So how would we market this? I think one goes to the people with the problem - the men with Peyronie's Disease. I may not get others to contribute, but if every man with Peyronies Disease gave a dollar, there would be 20 million bucks to spend gathered in one day (in the US alone - just imagine a global effort).

My point is that these goal are not mutually exclusive. We should be able to pay for cancer research and also for research into sexual functioning.


ComeBackKid,

Some of us would settle for a rabbit penis if it worked! I am not quite there yet at least!


Ocelot,

Actually, given that my own tissue used as a source of stem cells to generate a new penis would theoretically be at risk for developing Peyronies all over again, I think it is *entirely* reasonable to start out a few inches longer and thicker than I ever was!

Just saying...

Tim

[ComeBacKid]

They don't care if your suffering, the question is can money be made selling the product?  As for J's assessment of xiaflex, if it works I don't care if insurance covers it or not, I mean obviously I'd like them to, cause thts the purpose of insurance, but if they don't I'll pay out of pocket for it. 

Comebackid

[Skjaldborg]

Would insurance pay it, just to 'improve' the sex lives of baby boomers? I doubt it.

As a 31 year-old with Peyronie's, I would hope that the medical establishment knows that old men aren't the only ones dealing with this disease. I also hope that they know that some men have such terrible curvature, pain, deformity or Peyronie's-induced ED that sex is impossible, so allowing them to have a functioning organ is not just "improving" their sex life, it's about improving their quality of life.

-Skjald

[j]

I think the liability issue would be a huge barrier.  In fact that may be a big reason why more reasearch isn't happening.   I'm somewhat surprised that Auxilium had the guts to try penile injections of Xiaflex, even though I'm sure the patients signed more waivers than a Space Shuttle pilot.   

If some surgical group decided to do this, the cost would be astronomical. Would insurance pay it, just to 'improve' the sex lives of baby boomers? I doubt it.

In my opinion this sort of treatment is decades away.  Disclaimer: I tend to be a pessimist.

[ComeBacKid]

If my memory serves me correct, this was a rabbit penis right?  Thats still a bit off from regrowing a human male penis and attaching it however they would do such a thing, and not having the body reject it.  I also thought they could inject cells or genes into the penis to regrow over the old tissue, thats just a theory though...

Comebackid

[ocelot556]

I'm surprised. If they have learned how to regenerate the tissue in the penis, and implanted new working tissue in rabbits -- couldn't they regenerate the tissue in the penis to be... oh, say... 5 or 6 inches longer than the original member?

I suppose this can't be true, because if it were -- how hard would it be to find an investor for that? If it worked, you'd be the world's richest man!

[ComeBacKid]

I'm not confused by lack of enthusiasm, most people don't even know what peyronies disease is, or laugh off a bent penis joke.  Penis reconstruction surgery isnt that common int he united states.  On the other hand surgeries on women are much more common. We need to show the market there is a demand for a product to cure peyronies and DC and then you will see more investment in a solution to try to cure it.  No one will lay down capital to build a housing development if there isnt a demand for housing.  The higher the demand, the more developers and developments spring up.  The PDS can be a tool to help facilitate interest by showing a huge membership.  The bigger our membership, the more credit we will get when we write government agencies, doctors, institutions, and research labs, drawing more attention to ourselves.  You have to remember, people don't do things for the hell of it, they do it to make money.  They are gong to build/create/construct things which can make them money. Thats the whole point of our mass mailing project, to get every single possible person registered on here , including doctors, and spread word of our existence, and offer a place for support and education.  I'm kind of puzzled people are confused that doctors and companies AREN'T interested in investing millions in research for a rare disease.

Comebackid

[kendotx]

Hi Manrico - I agree, I am also puzzled at the lack of enthusiasm. Perhaps its due to the funding problem for Peyronies that Tim mentioned earlie, or perhaps it simply that tissue regeneration still seems like science fiction to most, I don't know. Dr. Atala is the chief of the Department of Urology at Wake Forest Baptist Medical Center so you know he's seem many Peyronie's patients who are desperately seeking a solution to their curved penis problems. Dr. Atala is also the director for the Wake Forest Institute for Regenerative Medicine, thus he has a lot on his plate and I'm sure that many other projects take priority over Corpora Cavernosa. Having said that, I'm also sure that as the chief of Urology, he seeks a solution for patients with penile problems. That's my best guess anyway, who knows I could be way off base. I'll say this, I certainly have hope and I really think this new technology could solve our problem.  - Ken

[Manrico]

I'm a little confused by this.  How much of a solution to our problem would this be?  It sounds to me like it might solve it.  Maybe a little unpleasant, but it seems the end product might be as good as new?  If this is the case, why aren't we more excited by it?  Is it just a matter of a little money and poof we have a solution? 

[kendotx]

I wrote a letter to the Wake Forest Institute for Regenerative Medicine basically asking when they expect human trials to begin on penile regeneration. They responded in less than a week with a personally signed letter. The letter stated that the institute continues to actively work in this area however it is impossible to provide a time estimate for bringing the technology to widespread clinical use. I was very pleased they responded in such a quick fashion and I want to contribute to their progress therefore, I made a recurring credit card donation on the institute's website. I have provided the web address in the event anybody else is interested in donating. Perhaps if the majority of this site's members were to contribute, it may help with that funding problem that was mentioned earlier.

I am simply fascinated with this new technology and I think everybody would have to agree that new working corpora cavernosa generated from one's own cells is far superior to anything else available today. So pass the word - Donate. The website is:

wfubmc.edu/wfirm/ - The  link for donations is on the right side titled "Ways to Give."

[ComeBacKid]

Fred,

I think this disease varies greatly from person to person from everything I've heard over the last decade.  Some people have indentations, others bends, twists, thinning, venous leakage.  It just causes deformities of all kinds.  Right now I've got a huge stock of pentox and intend to stay on it over the long haul.  We can garner the interest of the medical community by growing our membership to show there are many sufferers, and catch the attention of the private market research companies, looking to make a product and make a profit doing so.  All the more reason to get involved in our mass mailing campaign to recruit new members.  This month we are at a pace to beat last months numbers for new registrations.  We are registering almost 3 people per day, which is a good clip, but escalated to 4 or 5 per day would be incredible growth for the PDS.  I think its hard for us to be called legitimate in size until we hit the 10 thousand member mark.

Comebackid

[Fred22]

Of course, cute little kids dying of their disease get more donations than cranky older men who can't have sex the way they used to .....Tim

Tim,

I know you realize from your own experience that Peyronie's creates more suffering for some than was implied by the above quote.  I could deal with not being able to "have sex the way I used to" if I could just be pain free.  I know for many, pain is a minor and temporary issue , or in many cases not an issue at all, but some of us have endured years of pain.  This is my primary issue, and from our discussions I know it's also an issue with you.  If not for the pain, my wife and I could have a relatively "normal" sex life (she actually prefers oral sex anyway).  I wonder every day why there is such a variation in this condition from one person to the next.  Some never have any pain, some for a number of months and it goes away (the "textbook" scenario), and then those of us who experience almost daily pain/discomfort for years.  I hope that those conducting research in this area are made aware that there are many who do experience varying degrees of pain (sometimes excruciating) on a daily basis. 

Fred 

[Tim468]

Atala's work is amazing - I saw him speak when he came to my city and was so excited about it.

Unfortunately, there is limited funding for this research. I wrote to Dr. Gonzalez-Cadavid who is one of the best basic science researchers in this field and he is leaving it for a lack of funding.

If you have bladder cancer and a resection of the bladder and urinary incontinence, a reconstructed bladder (and the research into it) gets funded as "Cancer Research" - lots of money. "Sexuality Research" doesn't stand up next to "Cancer". For Bladder cancer, the numbers are: New cases: 70,980 per year; Deaths: 14,330 per year.

Peyronies affects anywhere between 0.5% to 8.9% of all men - meaning anywhere from 1.4 to almost 20 million men have Peyronie's Disease (this is prevalence - the number who have it - not the number who develop it in a given year, which is the incidence).

One could well argue that death is worse than Peyronie's, and so bladder cancer is more "important". I would argue that the importance of one disease does not mean that another disease is not important - both can be worthy of funded research.

I have long argued here that we need a separate funding mechanism for Peyronie's Disease, similar to how Cystic Fibrosis is studied through independent mechanisms funded through the CF Foundation. Of course, cute little kids dying of their disease get more donations than cranky older men who can't have sex the way they used to (and, yes, Noway, I know that you are young, as was I when I developed Peyronies - I am talking about perceptions).

Still eventually Peyronies will benefit from Atala's work. He did the rabbit penis studies as a "proof of principle" when I asked him why it had been done - he did it to show it could be done. Now, if we can only find a good post-doc in his lab who wants to work on it...

Imagine - one smart PhD funded by us (and paid a little more than the other young docs in Atala's lab)... We develop a fund and call Atala and say "Get one smart doc there to start working on this and we will fund him for 5 years". Do direct and indirect costs - make it 750,000-1,000,000 over five years, with the goal of developing a protocol that can be used to help men who have lost their penis to trauma (not rabbits), and we would be off and running.

Or, encourage the DOD to fund the trauma research (lots of soldiers have lost their private bits to explosive devices) and ask if we can fund a separate pathway for research on fixing Peyronies, and piggyback it to the DOD project(s) (I think Atala gets money from the DOD).

Dreamily,

Tim

[kendotx]

Hey Guys – My name is Ken and this is my first post on the site. I'm 48 years old and was diagnosed with Peyronies in 1989 therefore I'm encouraged by some of the advances that are on the horizon such as tissue regeneration. Tissue engineering technology is here today! The technology exists today to fabricate and replace a complete corpora cavernosa using your own cells thus eliminating any tissue rejection issues. I base my statement on the following:

1.   Dr. Atala and his team from Wake Forest Institute for Regenerative Medicine has fabricated and surgically implanted functional Corpora Cavernosum into rabbits. The corpora cavernosum were generated by building a scaffold and spraying the scaffold with the smooth muscle and endothelial cells, and then allowed to grow. The new rabbit penises are functional and operated well.
2.   Dr. Atala’s team has been surgically implanting functional bladders into humans for the past four years, thus reducing some of the learning curve associated with human subjects and tissue engineering.
3.   Dr. Badylak from the McGown Institute of Regenerative Medicine has a different approach to regenerating body parts. His team uses a substance called ECM, Extra Cellular Matrix, extracted from pig bladders. The substance is places on the injured body part and it provides signals and instructions to jolt the cells into regenerating themselves. Amazing

I think we should use networking and a collective writing effort to encourage further research including human subjects as soon as feasibly possible. There are a lot of us with damaged organs and psyches that have been waiting a long time for good news, I really think this could be it. One can go to the Wake Forrest Institute of Regenerative Medicine site for more info. CBS News also has a couple or three pieces on tissue generation, two on 60 Minutes, and one on CBS Sunday Morning. I attempted to post the links however this site will not permit posting links.