Stem Cells & Adult stem cell injections for Peyronie's

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koolx

I dont know how relevant this may be, but I read this article on scarring. Its worth a reading:

Tissue scarring in scleroderma: New clues -- ScienceDaily



james1947

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

koolx

I have said the same thing ages ago when priapus first came up in discussion in the forum.. for the last time, PRP = Pirapus

Priapus is just a cosmetic marketing name for PRP, nothing more.  

james1947

Yes Koolx, you have said it, just not ages ago, incautious opened the Priapus topic at February 13, 2014. :)
Let's continue on this topic with stem cells, not with PRP.
We have other topic on PRP

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

rellisacct

Hey guys,

So it has been over a month and a half since my stem cell procedure (March 15) at Wake Forest and I have mixed emotions. If anybody has been following my saga of PRP/Stem Cell trials, then you will know that it has been a rollercoaster with more downs than ups, however, I will try to give you the positive and negative results of the procedure.

Background Basics: I had a mix of PRP & ADSC's (Adipose Derived Stem Cells) injected into the penis along with a special gel of growth factors. The full process took about a month and a half to perform. On the first trip I flew down to Mexico with the lead urological tissue engineer from Wake Forest University. I went under general anesthesia and had liposuction performed on my abdomen in order to harvest the stem cells. Over the course of about a month, they differentiated and expanded the cells into three different lines...Epithelial, Smooth Muscle, and Nerve Cells.
On the second trip, I was again put under general anesthesia and the ADSC's, PRP, and gel were injected all over the penis and that was basically it.

Positives: I went from having zero ability to get a meaningful erection (we're talking a hanging piece of scar tissue) to being able to get an erection while on Cialis (only 5mg daily). This in and of itself is remarkable. The firmness is decent and is hard enough for sex, although I'm nowhere near my pre-injury days. Additionally, I have met a girl and we've hit it off over the past month. We've had sex a few times and she had no clue that I ever had any problems until I told her a little about my history. For the first time in about 2 years I really feel alive again!

Negatives: The size is no where near where I used to be. I've lost about an inch in length and probably about 1.5 inches in girth. The ADSC's did not fill out the penis quite as much as I was hoping they would, but going from the dark depressive hell that I was in to where I'm at now...it's night and day. I believe that for people who have less scarring and shrinkage than I had and have a more localized plaque or indention, this procedure could be a near cure. Also, people who just have old penile tissue that needs a little rejuvenating, this could work miracles. Please don't misunderstand...I'm not calling this a cure, but I do believe that this has the possibility to improve people's condition significantly. Last negative: It's freaking expensive. We are talking down payment on a house expensive.  

Overall, I still will be looking forward to the day when they can do complete replacements of the tissue, however, I'm hoping/praying that this will hold me over until that day comes. If you have any questions about anything, please let me know.  
"Opportunities multiply as they are seized."
― Sun Tzu

james1947

rellisacct

First congratulations for the positive outcome:
Quote...For the first time in about 2 years I really feel alive again!
Two things are bothering me:
The very high price. Maybe you posted how much is costing you, please let us know again.
Two general anesthesia. I am scarred of it.
As I understand things will improve as you are just 7 weeks after the treatment. :)

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

rellisacct

Thanks James...

The very high price is around $15,000 including flying the doctor and myself down to Mexico and back twice. This has literally taken the downpayment on the house that I was going to buy. It's more than worth it to me to be able to have sex again, so the house can wait a year or two.  ;)

The general anesthesia was very light, so no problems at all with that.

Just as with any new technology, the price of the procedure will come down in time. I'm hoping that this will be available to more people in the near future, but there's no way of knowing. I wanted to write this primarily to keep people's hopes up.  
"Opportunities multiply as they are seized."
― Sun Tzu

james1947

QuoteI wanted to write this primarily to keep people's hopes up.
Thanks for that rellisacct and continue to update us in the future

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

koolx

james1947, first off, you dont need to remind us when Incautious first mentioned this PRP topic. Second, it was ages ago since he brought up this topic while we're in May and the topic keeps coming up for the past 3 months. Its best that you advise the original poster of this topic to end its recurrence, not the ones complaining about it.  

rellisacct, very happy about your progress. My prayers are with you, brother.



james1947

koolx

I don't understand your post, maybe I should clarify mine:
* This topic is about stem cells, not about PRP/Priapus/... We have an other topic regarding PRP to discuss the subject and not here.
  Discussing here PRP is hijacking the topic.
* 3 months are not ages for me.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

koolx

James,

Exactly, the thread is about stem cells not PRP. You just made my point.

Youre strange to think that talking about the same topic for 3 months isnt a long time... yeah ok.

Your post makes no sense. Oh well, on to more important things....

james1947

Let it be koolx, appreciate your attention :) :) :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

koolx

Thank you, James. I appreciate all your input and contribution to the forum.  

Chef Chris

Chris

james1947

Some remarks regarding the link:
QuoteThere is an ongoing FDA study of a drug (phase 3) called Xiaflex
Not updated, the trials ended, FDA approved already.
QuoteNon-surgical therapies include: Vitamin E, Potaba, colchicine, tamoxifen, carnitine, and Omega-3 fatty acids.
No mention of Pentox and Cialis that leading urologists are using as oral treatment.
QuoteStromal Vascular Fraction (SVF)
Is a name he is using for stem cell therapy. On this topic itself we have the testimonies of forum members that had made this therapy.
Interesting to know how much they are charging.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Chef Chris

Yes i was thinking about the Adipose-derived Stem Cells treatment he is providing  
Chris

james1947

I am also sure they are making good money from desperate people like us :(

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

op

rellisacct, thank You for such fresh & information based posts! Also, as i remember no one have posted(sorry if I've missed) about stem cells being filtered & etc... to: Epithelial, Smooth Muscle, and Nerve Cells. That's something new...



rellisacct

No problem Op, I'm thankful that I'm able to share such information.

Wake Forest is the only place that I know of right now that is differentiating and expanding the cells before injecting. I believe that this is a major reason that the procedure worked as well as it did.

"Opportunities multiply as they are seized."
― Sun Tzu

james1947

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

stopthismadness

Thank you for the post James, that is indeed very encouraging. Now i just hope that it happens quickly for us humans.  8)

Crankitup

Are we averse to sharing pictures on this forum? Because I've never seen any even though our disease sort of naturally takes to description through pics more than the word trains always found here.

Rellisacct, really happy for you, man. And very good to know that "they're doing a lot of work" down there in WF. I don't put a price on ridding this problem but I do hope they improve on the size loss front a bit more.

So I understand nobody around here benefited much from injection of undifferentiated cells?

james1947

Crankitup

You can post pictures on:
https://www.peyroniesforum.net/index.php/board,47.0.html
The board above can't be seen by search engines and guests.
We made it this way not to attract people that have other interests than find solution for they Peyronies.

james  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

jmsurfer

Does anyone know if the treatment relissact got at Wake Forest ( stem cell treatment in Mexico) is still available or is it not because it was done in the setting of a clinical trial? Do you guys think there are any risks of worsening ED from this?

james1947

jmsurfer

Hope rellisacct will answer you, can also send him a PM

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

rellisacct

"Opportunities multiply as they are seized."
― Sun Tzu

MACCC

i am very much interested also to know if the treatment relissact got at Wake Forest ( stem cell treatment in Mexico) is still available or it is something quite far from available generally to all peoole? I got a very localised plaque and ED and really wish it could be a cure.  

rellisacct

Hey Maccc,

It was a very long process for me to be able to get into the clinical trial. I had to literally exhaust every other option before they would allow me to go that route. I would strongly suggest going with PRP first and seeing how things go with that, especially if the plaque is localized. The stem cells were more for rebuilding the corpus Cavernosum, which it appears that this may not be an issue for you?

I believe that they will be expanding the trial fairly soon since they have had some really good results. Where are you located? It helps that I'm literally an hour down the road from their urology office.  
"Opportunities multiply as they are seized."
― Sun Tzu

Crankitup

Hey all :) It's been 2 months since the last post. Any interesting updates?

rellisacct

Nope...been scouting out the depression and suicide boards lately. Unfortunately nothing further to add here.  
"Opportunities multiply as they are seized."
― Sun Tzu


Fubar Penis

From what Stan with APDA, who sat down with the leading researcher spear heading the stem cell research for body parts and penises, he said we are at least a decade or two from fully testing it out on humans for full treatment of penis issues. By the way, it is mainly being researched to replace missing penises for like veterans who lose theirs during war, for transplants of cadaver penises using stem cells as the bonding agent or to assist in making the penis a part of the tranplantee's own body. How it will be used for peyronie's or if real research money is going into it for that purpose is still up for debate. From what I heard, the other issue is we would probably still have to have some form of surgery to remove the scar tissue and then implant the stem cell graft to grow new cells. I don't believe you can inject the stem cells and have them replace or dissolve the plaque causing our problem to start with, if I understood what was told to me correctly and what I read. Once again, nothing is clear cut and dry with this nasty condition. I just keep hoping that in a year or two or tomorrow, they find a way to safely remove our unhealthy penises and replace them with John Holmes penises. Lol! Then also keep in mind, like our current surgery options, insurance is probably not going to want to cover most of it; and I would imagine it would be hella expensive. You know if they could replace safely our penis with a John Holmes penis, they would be charging a million dollars for the surgery, since every man with money would be in line to to get one. Maybe with these 3D bio printers being developed, we can eventually all have new penises after we rob 5 big banks to pay for it. Lol!  

Crankitup

@Fubar. Wow that is really depressing news, tbh. I was hoping in 5 years there'd be a change in landscape, if not much else. Who did Stan sit down with exactly?

Btw, I just saw that futurologists are predicting complete organ replacements by 2020.

Lollaro

Guys.. I don't think so... The studies of Dr.Atala are very positive...I think (and hope) that the defenitive care it will in five-seven years..

Fubar Penis

Crankitup,

He had a conversation with Atala directly I thought. He didn't sound real hopeful for a cure for our peyronie's in the next decade or so, but I hope Lollaro is right. I hope and pray Lollaro, you are right. I thought he said Atala said the primary focus will be on replacing missing body parts, not in curing peyronie's. You know the FDA is too. If the cure is found in 7 years, it will take another 7 years to get approval. Europe will probably be curing peyronie's 5 years before we get approval approval to do so. I guess then it would be time to sell the house and maybe sell some crack (just joking of course-but you know the surgery will cost a fortune) and move to Europe for me.  

Lollaro

https://www.google.it/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=0CD8QFjAD&url=http%3A%2F%2Fwww.huffingtonpost.com%2F2014%2F10%2F09%2Flab-grown-penis-human-testing_n_5953806.html&ei=fnCBVOfDD4i7PZ2mgLAF&usg=AFQjCNEh65gbt5GBoWOoqJKQbaNN1mRIeQ&sig2=KjbpYbv5KRK_K_BnqSvMSA&bvm=bv.80642063,d.ZWU This is the link of the interview

james1947

Thanks for the link Lollaro.
5 years is not a long time, especially for the younger between us.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Lollaro

Yes... i have 18 years ...

How much u think the costs of the surgery?

rellisacct

Penis replacement trials are going to begin much sooner than that, but not in America. The good and moral folks over at the FDA are, as usual, slowing the clinical trial process to a snail's pace. In order to get things moving, the clinical trials will begin in Mexico by Spring 2016 at the latest. The only holdup is that Wake Forest is currently waiting on the the AFIRM II funds from the military to come through before proceeding to plan the procedures and clinical trial protocols.

Additionally, the research beneficiaries definitely include individuals who have severe peyronie's disease as well as congenital abnormalities, injuries, etc.

This is straight from the doctor that actually heads up the research and will be administering the trials. The only thing keeping this from being in clinics and widely available in 3-5 years will be our own government.
"Opportunities multiply as they are seized."
― Sun Tzu

Lollaro

it's good news
Rellisact .. but it would be better to wait for the Wake Forest is
move in this direction ?? Would not it be a better certification?
Who guarantees that in Mexico they can actually do a good job?

Edit : Will be able to regain the structure exactly as it was before the injury?

rellisacct

Lollaro,

The clinical trials in Mexico would be administered by Wake Forest, with Wake Forest doctors. Additionally, some of the primary researchers are Mexican and thus have the expertise needed to perform the procedure. So actually it will be U.S. doctors in charge of the procedure with help of the Mexican researchers.

I have been down to the hospital where they will do the procedure and it is a world class research lab/operating room. They had a large financial gift from a private individual with our condition which went into upgrading their equipment and lab to the point that it needed to be to proceed with clinical trials.

There is absolutely no promise that the structure will be like it was before and there is no guarantee that the procedure will even work. They have 20 years of great research history behind them which hopefully will translate into a human cure. In theory, there shouldn't be much of a difference in how the penis used to be and how it will be post-op. There is no guarantee in any surgery, especially one that hasn't been performed before.
"Opportunities multiply as they are seized."
― Sun Tzu

Lollaro

Rellisact .. I meant the expectations of care ..
It should be a permanent cure? That hypothetically could bring the penis before? Can you tell us more about how?
O the methods?


diamondback55

Rellisacct, Can you please give me the contact information for the doctor you were working with at WF?  I suffer for straight ED and would like to discuss treatment options.  My email address is stcampbell01@gmail.com .  Thank you.


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RodFUBAR

Hello comrades, I'm new here and this is my first post. I recall reading on here somewhere, some time ago, that there was some clinical trials taking place for stem cells and there was this doctor in San Francisco or San Diego who's looking for guinea pigs. I'm sure I'm too late but wanted to know whats it all about and am I on the right thread? I recall something like growing new corpus Cavernosum, and rabbits, and what not lol... I'm down to experiment with growing me a new corpus. Now does this experiement require injecting stem cells into our existing one or grow us a new one and swapping them?
Don't see why we cant grow ourselves a new penis (overdosed on hgh & testosterone of course) in a lab, or be on a waiting list from organ donors? Anyone think organ donations will ever include penises? Thanks folks, I welcome all information and help on the subject.

Jack1909

Penis transplant was performed in 2006. Surgery went good but the patient then asked for being removed it because of psychological problems. Anyway, penis lab grown is the way Dr Atala is reaching. He has already created and implanted parts of penis and entire vaginas. He is about to start human trials for entire penises. The obstacle to overcome, from what I heard, is the fact the penises implanted show a weak erectile power..not absent, but as a 60 years man. In any case, it's not the worst problem they could come across.
I also think that the psychological wall of seeing a different penis will be climbed up by using 3d printers. 3d printers can recreate your penis shape exactly.
Last year in Holland it was performed the first skull 3d Printer created in a woman suffer from a rare disease that prevented her from having a normal life. They recreate it perfectly, and not because of psychological issues, but because it needed to fit to the head and the brain.  
31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

james1947

Quote from Jack1909
Quote3d printers can recreate your penis shape exactly.
Unfortunately I don't have pictures of my original strait, pink penis and I don't want they will make me a penis based on what I have now. :(

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Jack1909

James your penis is bad even when it's down?

James, I read about your link about stem cells sued for treating Sclerosis multiple..right yesterday I came across an article where it was explained that in GB they are already (!) using a cure defined as a miracle. Practically your immunological system is swept away (you need to stay isolated for a while) and reprogrammed by using stem cells. People gained back sight and legs and so on. It's a real extreme way to approach..but I wondered if could be a way to approach even for your problem.
In general, we should be more optimistic about stem cells. I know, we have been hearing about them for years..but someone knew that it has been approved the first stem cells drug last month? The first one in the world (and it is italian..don't know how it's possible :D) and is very working. It let you gain back your sight by regenerating part of the eye. So, this is the proof we are on the way to fix things..


I've read some posts below..it's clear that Atala's way is not the Peyronies Disease's cure, it's the way to have a new healthy penis. But I think that all of you will accept to remove their penis for a new one sane.
 
31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

james1947

My post was more to put some humor in the very serious topic Jack.
I am active sexually, but I miss my lost 2", lost girth and capability to maintain an erection as long as I wish. ;D

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum