Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Congratulations to Old Man the longest active member on the forum
yesterday was his 14th anniversary of supporting the best forum on the internet.

READ THE TRIBUTE: https://www.peyroniesforum.net/index.php/topic,12336.0.html

Pages: 1 [2]   Go Down

Author Topic: Wake Forest- Good news  (Read 8241 times)

0 Members and 1 Guest are viewing this topic.

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #50 on: December 14, 2018, 02:20:44 PM »

Pam Gippert, Dr. Terllecki' personal secretary returned my call,  I have not heard back from Mary-Clare Day at this point.  Pam Gippert seemed unaware of any trial information and said that Dr. Terlecki is out of the country this week. She was very friendly and did give me her email address.  She volunteered that she would give my message to him when he returns.

I wrote an email introducing myself and the forum and posed all the questions we formulated.

I think I will still attempt to reach out to Mary Clare-Day and Dr. Atala's offices again next week.

I will keep you posted.

Hawk
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 536
Re: Wake Forest- Good news
« Reply #51 on: December 16, 2018, 06:44:10 AM »

Thank you for keeping us updated. I'll stick around this topic, cause I still feel like Regenerative medicine is the way to go for me in the future.
Logged
Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #52 on: December 17, 2018, 10:16:57 AM »

Thanks Hawk! Keep us updated.
Logged

Werther

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 202
Re: Wake Forest- Good news
« Reply #53 on: December 22, 2018, 10:35:50 AM »

Hawk,

did you get any response back from Terlecki, Mary Clare-Day and Atala during the week?

Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #54 on: December 23, 2018, 09:04:10 PM »

Yes, Mary Claire Day tried to contact me by phone but left a voice mail for me and sent an email.  I am going to try to call her back because I would like a two-way conversation.  I think she contacted more because of the email and contact that I had with Pam Gippert than because of the phone message I left her.  Ms. Gippert forwarded my email to Ms. Day.

At this point, the information I received by voice mail and email is sketchy and incomplete.  Dr. Terlecki nor Dr. Atala contacted me.  At this point, I feel like Ms. Day will be my best contact, at least initially.  As I said, I do have some partial answers to my questions, I just want more answers before I unpack for the forum.

My Guess is that Christmas week might slow down and communication for several days.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

hope794

  • Solid Contributor
  • ***
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 282
Re: Wake Forest- Good news
« Reply #55 on: December 30, 2018, 11:30:27 AM »

Thanks for your work, Hawk!!
Logged
24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #56 on: December 31, 2018, 06:22:02 AM »

It has been a slow process.  The time of the year could account for that.  I am going to call again today but it might be later in the week before I get through.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #57 on: December 31, 2018, 07:50:50 AM »

Hawk,

Please ask them the main questions that were wrote in first page of this thread. Thanks.
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #58 on: December 31, 2018, 09:31:58 AM »

Alex,

 You can rest assured of that.  That is the whole reason I asked for submitted questions.  If I am nothing else, I am through, often to the point of annoying people that aren't.  i have already submitted those questions in writing.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #59 on: February 01, 2019, 02:14:59 PM »

Hawk,

Any news&updates?
Logged

Werther

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 202
Re: Wake Forest- Good news
« Reply #60 on: February 02, 2019, 10:22:54 AM »

I was going to bump this thread by myself too.

What happened? Almost two months have passed since you first got in touch with Wake Forest's personnel and Christmas Holidays have long been finished... So? Did you get any form of response?
Logged

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 536
Re: Wake Forest- Good news
« Reply #61 on: February 13, 2019, 01:08:16 PM »

Anything new?
Logged
Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #62 on: March 06, 2019, 11:55:53 AM »

I have had trouble talking live to anyone (that could answer questions) on numerous attempts.  I am encouraged that they did try to call me once but I missed the call.

Here is some email information that I received from Mary Claire-Day.  This is part of an email that included my questions and their response in red font..

1.  Can WFIRM confirm that the eventual goal of this study is to resolve erectile dysfunction, deformities, curvature, and size loss that are linked to Peyronie's Disease or, more generally, erectile tissue's fibrosis? If you don't intend to confirm that with regards to your phase-1 study - since it's only a safety study - is it your goal to confirm it at least for phase-2? In other words, what's the aim of the whole trial? Is it to solve erectile tissue's fibrosis and resulting side-effects?    THIS IS A SAFETY AND FEASIBILITY STUDY AND WE HOPE TO MOVE ON TO A PHASE 2 FOR OTHER INDICATIONS THAT REQUIRE REPLACING CORPORAL TISSUE

2.  Why does candidates' enrolment for this phase-1 study have to take at least 2 years? What's the reason behind this? Is it like this because of the FDA or is it a WFIRM's choice? Can anyone do anything to reduce the timeline expected for closing candidate enrolment for this phase of the clinical trial? If so, specifically what can be done?  Can we help?   WE ARE REQUIRED BY THE FDA TO STAGGER ENROLLEMENT – WE ARE REQUIRED TO WAIT 3 MONTHS IN BETWEEN PATIENTS TO ENSURE THAT THERE ARE NO ADVERSE EVENTS.  THE FDA ALSO REQUIRED THE 3 YEAR FOLLOW-UP PERIOD

3.  What about the "whole penis development"'s project? WFIRM announced to the media that they were able to create "half a dozen human penises" back in 2014 (here's the link: https://www.theguardian.com/education/2014/oct/04/penis-transplants-anthony-atala-interview [theguardian.com]) but it is taking many years just to replace small parts of erectile tissue? Will you ever be able to bioengineer the whole organ? And why was there a report that you did this in a lab years ago?  Was this accurate or was it simply hyped media reporting?   WE ARE REQUIRED BY THE FDA TO SHOW SAFETY IN STEPS (CORPORA, URETHRA) BEFORE WE MOVE FORWARD WITH A WHOLE PENIS SURGERY.  I DO NOT HAVE ANY MORE INFORMATION THAN THIS

4.  What kind of adverse events do they think can happen with this experimental procedure? Are you able to provide a full list of possible adverse events?  I AM HAVING TROUBLE SENDING ATTACHMENTS WITH MY EMAIL BUT WILL TRY TO SEND YOU A COPY OF THE CONSENT FORM SO THAT YOU CAN SEE THE POTENTIAL ADVERSE EVENTS – THE LIST OF ADVERSE EVENTS WAS ALSO, IN PART, DICTATED BY THE FDA  Guys, See the "RISKS" document that I attached below these questions

5.  What are the causes of the constant delays with this trial?  a member reports he was once told by Ms. Day that they had to begin with enrolment last May, then - after another email's contact - she reported they would have begun enrolling people by June or July; now we read on clinicaltrials.gov [clinicaltrials.gov] that you are not recruiting yet. What's the reason for this? When are actually going to recruit candidates?  Can we help?   THE DATES WERE ESTIMATES – WE HAVE BEEN WAITING FOR ALL ADMINISTRATIVE APPROVALS TO BEGIN AND ARE NOW WAITING FOR OUR LAB TO TELL US WE CAN BEGIN.  I HAVE BEEN TOLD THAT WE SHOULD BE ABLE TO RECRUIT STARTING IN FEBRUARY, BUT I AM AT THE MERCY OF THE LAB

6.  Does WFIRM have an approximate timeline with deadlines for the whole trial? Can you estimate when you will begin phase-2 and phase-3 and when you will be completely finished with this?   How many years will it take for all of the tests, trials, and approvals before this technology finally will be available in clinical practice? What is the most optimistic hope for availability to the patient (5 years, 10 years, 20 years)?  (We ask because men are actually delaying implant and other surgeries in the hope that this will become available as a better solution.)  NO WE DO NOT HAVE A TIMELINE. IT MAY TAKE UP TO 5 YEARS TO COMPLETE THE PHASE 1 WITH THE 3 YEAR FOLLOWUP INCLUDED.  WE PLAN TO SUBMIT THE PHASE 2 TO THE FDA PRIOR TO THE COMPLETION OF ALL THE FOLLOW-UP.  ANY FUTURE STUDIES WILL BE MULTICENTER SO THAT ENROLLMENT MAY BE QUICKER

_____________________________________________________________________________________________________________________________________________

What Are the Risks of the Study?
 

Being in this study involves some risk to you. You should discuss the risk of being in this study with the study staff. It is important to note that if you take part in this study and experience an adverse event, it may limit or eliminate the possibility of having a future treatment or surgery for that condition because of infection or deformity.   

 

Risks and side effects related to the biopsy and corpora cavernosa construct treatment that we are studying include (but are not limited to):

 

Anesthesia Risks

Your will be placed under conscious sedation (made very relaxed and/or sleepy with medication but not put completely to sleep) and/or general anesthesia (put completely to sleep with medication) twice - once for the biopsy and once for the corpora cavernosa construct implant procedure.  If you were not enrolled in this study, and underwent the current standard of care surgical treatment, you would also receive anesthesia once as part of that treatment.  While under anesthesia, you could have difficulties breathing requiring emergency care to help you breathe, or she could have serious cardiac dysrhythmias (abnormal heartbeats), changes in liver, nausea, vomiting, itching, stroke, or suffer brain damage or death.  These are complications that can occur with any operative procedure. Dr. Terlecki, or a member or the study team, will discuss with you these general surgical and anesthesia risks.  These risks will also be explained before your surgery in a separate consent form provided by Wake Forest Baptist Health that you will be asked to sign.  A copy of that consent form will be placed in your medical and study records.

 

Risks Associated with the Biopsy and Implant Surgeries

·         Pain, bleeding that is hard to stop, infection at the site of the biopsy and/or the corpora cavernosa construct implant.

 

We may not be able to obtain the corpora tissue/cells from the biopsy due to unexpected and unforeseeable (not currently thought of) technical reasons, the cells may not become part of the scaffold as expected or at all, or the implanted corpora cavernosa construct may fail and have to be removed. If any of these occur, you may choose to receive standard of care surgery or other options at a later date.
 

Potential risks that are similar to the standard-of-care penile prosthesis implant procedure include:
pain which may be temporary or long term
infection which could require antibiotics and/or result in loss of penile tissue and/or the construct implant
damage to surrounding tissue (blood vessels, nerves, muscles) requiring immediate or delayed surgical repair
injury to the urethra, urethral stricture and/or abnormal voiding which may require temporary or permanent catheter
penile abscess or fistula formation which would require additional surgery and possible catheter placement
injury to the rectum which would require additional corrective surgery
continued or worse erectile dysfunction  which may require medication or another surgery
penile curvature which may require surgery or may not be able to be corrected
 

Blood Draw Risks

Pain, bruising, bleeding that is hard to stop, infection at the site from which the blood is drawn, and fainting may result from the blood draws at any of the visits.
 

X-Ray/Radiation Risks

Exposure to x-rays if you have the chest x-ray at screening .You will be exposed to amounts of radiation above what you would normally receive in daily life. To be sure that you do not receive an unhealthy amount of radiation from participation in this study, you should let the study doctor know if you have had, or are going to have, any other scans or x-rays as part of your medical or dental care. It is very important that you let the study doctor know if you are already participating in, or plan to participate in, any other research study that involves radiation exposure.

 

Risks Associated with the Scaffold

Because the cells used on the scaffold will be your own (also known as Autologous), we do not expect any bad reactions that could occur if someone else’s cells would be used (also known as Allogeneic), but there is always a small risk of an allergic-type reaction which may lead to the need for the implant to be removed.
 

There is a risk of infection from bacteria and other disease causing agents that may be accidentally introduced during the process of creating the scaffold/construct.   The entire procedure will take place within the sterile environment so this is not expected. 
 

There is a risk that any improvement in function that you may have following the treatment may not be permanent.  Some of the early studies that were performed in rabbits have shown that penile function improvement began to fade after about 6 months.
 

Confidentiality Risk

There is a slight risk of a breach of confidentiality.  Taking part in this research study may involve providing information that you consider confidential or private.  Efforts, such as coding research records, keeping research records secure and allowing only authorized people to have access to research records, will be made to keep information safe.


Other Risks

There also may be other side effects that we cannot predict. You should tell the research staff about all the medications, vitamins and supplements you take and any medical conditions you have. This may help avoid side effects, interactions and other risks.


A Data Safety and Monitoring Committee, an independent group of experts, will be reviewing the data from this research throughout the study.


Other Issues to Participating in Research

 
As part of this study, you will be tested for HIV (human immunodeficiency virus, which is the virus that causes the acquired immunodeficiency syndrome [AIDS]); Hepatitis B and C, and other infectious blood diseases/viruses. You will be told of the results of the testing, and counseled as to the meaning of the results, whether they are positive or negative. If the test indicates that you are infected with any of these diseases, you will receive additional counseling about the significance of your care and possible risks to other people. We are required by law to report all positive results of these tests to the North Carolina State Board of Health. The test results will be released only as permitted by applicable law. If you do not want to be tested for HIV, Hepatitis B or C or other infectious diseases, you should not agree to participate in this study.  If any of the tests are positive, you will be excluded from the study.

Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #63 on: March 06, 2019, 05:03:25 PM »

From my read, it could be 15 years or more before extensive replacement of organ components is available, assuming the trials are actually successful.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

pfract

  • Think Tank
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 1544
  • #whateverittakes
Re: Wake Forest- Good news
« Reply #64 on: March 07, 2019, 10:17:20 AM »

One of the best bits on information on this topic, the reply above. Thank you hawk!

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #65 on: March 07, 2019, 01:50:14 PM »

Thanks for information Hawk.

15 years... in other words it's over.
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #66 on: March 07, 2019, 03:50:52 PM »

What's over?

I am guessing but it looks like up to 5 years just for phase 1 and all of this assumes that everything progresses without any significant setbacks.

I think this research (and all organ regeneration research) is very positive for future patients.  My personal view is that anyone that is planning to forgo 10 or 15 years of a sexually capable life waiting on this has to be wired far differently than I am both from a standpoint of thought process and sex drive.  There are solutions now.  All solutions suggest there is a problem.  No solution is as convenient as not having a problem to begin with but the solutions range from being easily attainable to requiring a major financial commitment depending on your location, your finances, medical insurance, and access to the right doctors.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #67 on: March 08, 2019, 07:53:52 AM »

There s no a solution for everyone...I repeat, maybe I’m the only one on this board but I dont think I’m the only one in the world..people like me with massive neuropathy and pain are often rejected from implant specialists.

Same thing goes for people in their twenties....with the all duty respect Hawk, but you are more than 60. A 25 years old putting an implant needs to take into account things you don’t..

I dont see how this needs to take so long, never heard about a phase 1 lasting so much..the technology is already here, it must be something else....

This why we need to act together and take this over, because this is about us. Not about Terlecki nor this Marie.

Otherwise we can die, right away. Casted out by the hypocrisy of the society we live in.
Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #68 on: March 08, 2019, 07:59:07 AM »

2 plus 3 years of follow up is a ridiculous term imposed by FDA...with all the crap surgeons are allowed to put into patients..ridiculous terms by a ridiculous agency. We need the same research in a country like Japan..

Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

pfract

  • Think Tank
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 1544
  • #whateverittakes
Re: Wake Forest- Good news
« Reply #69 on: March 08, 2019, 02:56:07 PM »

@Jack:

Waiting 15 years for a cure that might not come, especially when you have solutions now that work and allow you to have a healthy sex life is just Dumb. I may not be 25, but I was 27 when I fractured my penis and I am now 32. I find the implant super reasonable, and I am not alone. Nothing beats a normal penis, but in the absence of that... Wait till you are 45/50 just because you refuse to see what's in front of you is just ridiculous.

And also, trials and waiting time exist for a very important reason. In this case, imagine going for a graft developed by wake forest to solve your fibrosis and end up loosing your penis because of some unpredictable issue? Can't you see that?

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #70 on: March 08, 2019, 03:13:05 PM »

Prfact you have been telling this for 5 years but you have not already gone for an implant. What are you waiting for..please dont tell us you are saving money. The question is if you are saying what you are saying as you want to convince us or you are trying to convince yourself.

I already told you I have been rejected by an implant specialist who told me putting an implant in my condition would be insane. So...i need to jump out of the window that’s the conclusion.

The fact is many guys are solution less and that’s outrageous.
Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #71 on: March 08, 2019, 03:16:50 PM »

You can lose your penis even going for an implant surgery, you can die as well..come prfact, be serious. There are far more people suffering from huge complications from routine surgeries than people actually harmed by trials.. I’m one of them.
Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #72 on: March 08, 2019, 03:37:35 PM »

pfract,

I have to agree with Jack1909. You keep telling this for years and technically it's nothing other than "mental masturbation", in your case it's about implants that you constantly delay year after year. If implants are so great, why don't you haven't it done already? From your description: "Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate Erectile Dysfunction)"

What are you waiting for almost 5 years, when the solution is right there? I bet there's a chance that in the next few years you still will be posting here with a description under your post changing every year:

"Implant surgery 2026? 2028? 2030?"
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #73 on: March 08, 2019, 04:22:33 PM »

There s no a solution for everyone...Same thing goes for people in their twenties....with the all duty respect Hawk, but you are more than 60. A 25 years old putting an implant needs to take into account things you don’t..

I dont see how this needs to take so long, never heard about a phase 1 lasting so much..the technology is already here, it must be something else....

This why we need to act together and take this over, because this is about us. Not about Terlecki nor this Marie.

Jack, you are absolutely correct.  There are few if any solutions that are good for everyone regardless of their health issue.  Leading high volume surgeons routinely perform implant surgery on men in their 20's however and even in their teens.  There are very few teens that would prefer a non-working penis to an implant.  Most that get an implant consider it as good as their natural penis in their prime.  Xehonart just got an implant and just turned 30 years old so age has little to do with the decision unless you are too unhealthy for an implant.  In that case, a man would likely be too unhealthy for regeneration treatment as well, especially while the treatment is still in trial.

They are not going to speed this and no one is going to take over the FDA.  There are risks.  Nothing about this is a guarantee.  They are not experimenting on mice dicks.  They are using men.  The same people that want them to rush are the ones that would sue them if their penis was damaged even more from the treatment.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Werther

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 202
Re: Wake Forest- Good news
« Reply #74 on: March 08, 2019, 05:13:45 PM »

Thanks for the report Hawk.

I have to say that I'm pretty disappointed though. The unavailabilty of the people from Wake Forest tells a lot about their credibility: during the course of three months NOBODY was available to talk live... That's ridiculous.

The answers you were given were ridiculous too.

They didn't answer the first question at all (the most important one), even if you correctly pointed out that we all know that, being a phase-1 trial, its only purpose will be to determine if their procedure is safe or not. Nonetheless there's no reasonable motive to omit what do they expect from the surgery (i.e. why should it be performed on the people who're listed in their record instead of the current available procedures).

Then, what does the answer to question n. 5 even mean? What's this dictatorial "lab" Ms. Day is referring to? Is there some sort of masonic circle within their Institute that deliberately keeps postponing this trial just for the fun of doing it without even communicating the reason for this choice to their public referent? LOL. Does this Ms. Day really think that people contacting her are all a bunch of retards? She could have at least stated that she's not authorized to give these information. At least she wouldn't have made a fool of herself.

Besides I was already skeptical on their claims about the fact that they were able to create "whole penises". Now I'm sure they actually didn't: even the response to question n. 3 in fact doesn't make any sense at all: there's people who completely lost their dick and they don't need to wait for "step by step" processes; as a matter of fact they're being offered allogenic transplants by these people (https://clinicaltrials.gov/ct2/show/NCT03240822). If Atala was actually able to grow complete dicks from stem cells the trial for these people would be dealing with these organs rather than donors' ones.

The only useful and new piece of information that was revealed by this response is the attached informed consent. What we came to know is anything but promising however:

Quote
There is a risk that any improvement in function that you may have following the treatment may not be permanent.  Some of the early studies that were performed in rabbits have shown that penile function improvement began to fade after about 6 months

They never told the public that this experimental surgery wasn't successful in the long term.


As I said in the beginning, I'm pretty disappointed. BTW at least we now know how shallow these WFIRM's guys actually are...
Logged

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #75 on: March 08, 2019, 05:17:09 PM »

I won’t respond as it would be useless..you are polluting any thread of this forum with implants advertising. All the right to do it, but people have eyes.

And yes, people with issues on penis should are not allowed to have regenerative therapies on it. LOL

Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

pfract

  • Think Tank
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 1544
  • #whateverittakes
Re: Wake Forest- Good news
« Reply #76 on: March 08, 2019, 07:14:47 PM »

I like all these childish comments from Jack909 and Alexsamo, like spoiled little teens that cannot hear anything other than what they want.

But yes, I am saving money and paying bills and building my professional career in the process too. I was living in Portugal, fractured my penis in 2014, went broke financially asking doctors for help, emigrated to Canada in 2015, started life from zero, saved money and went to doctor Goldstein in 2016 to see if I was candidate for his surgery (penile revascularization) which is why I did the ultrasound there. The answer was no, so I started saving for the implant.

If you actually researched other treatments other than fantasy treatments that will come in 30 years, you would know that implants out of pocket in the USA cost between 25/30.000$ CAD. And then add some more for flights and hotels and what not. THAT IS A LOT OF MONEY THAT TAKES TIME TO SAVE!

If you were mature enough mentally you would know that and that life gets in the way as well, but no. Nothing but a cocky little trouble maker gets angry because people tell you that an implant is an option.

Why haven't you called Dr eid by phone appointment yet to tell him your beautiful story of how you were denied an implant? Why's that?

Grow up man

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #77 on: March 09, 2019, 01:16:36 AM »

cocky POS, well...LOL couldn’t expect anything better from you.
Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

Patientxyz1992

  • This member has been warned for abusive behavior/inappropriate language.!
  • Voting Member
  • **
  • Country: hr
  • Online Online
  • Gender: Male
  • Posts: 33
Re: Wake Forest- Good news
« Reply #78 on: March 09, 2019, 11:46:51 AM »

Hello guys my toughts are next,if they really develop this as patentable technology i think that whole replacement of corpora would be even easier than replacing a part of it,what you think?also i must say that even if implants are not perfect solution they are superior to anything else and personaly if i wouldnt have usable erection i would go with implant asap,if your leg somehow got choped off would you wait 20 years so maybe technology would replace it or would you put prosthetic on and start running?even if technology of regrowing will exist in near future i doubt it will be used becouse implants,pills and other stuff are very profitable,also  i think if they figure out how to regrow corpora,soon enough they will find out how to be immortal which is in my eyes very foolish and distant hope.......i hope im wrong...
Logged
This member has been warned for his abusive behavior and inappropriate language.!

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Wake Forest- Good news
« Reply #79 on: March 09, 2019, 11:50:17 AM »

pfract,

Yeah bruh, keep coping. When did you say you will get implants? In 2025 or in 2030 or maybe 2040? How much did you saved? Like 10 bucks per year? Anyway, implants are best. Keep talking your mantra every day bruh.

Quote
If you actually researched other treatments other than fantasy treatments that will come in 30 years
Why then you're posting in this thread if this is a "fantasy treatments that will come in 30 years"? This thread about tissue engineering, but you keep spreading your everyday mantra's about implants. Please do all of us a favor - choose other thread for spamming.

Post edited by Moderator- Name calling and other hostile attacks will not be tolerated - OFFICIAL WARNING ISSUED

Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #80 on: March 09, 2019, 12:01:07 PM »

I am a cancer survivor that will likely die of cancer even though at the moment I am healthy, symptom-free, and fit.  I do have cancer, however, and I follow tons of promising research with the hope that if I last long enough maybe there will be a treatment that is not just as bad as the cancer can be (far worse than the cancer is now).  I see how long these "promising new therapies" take and how limited their success is.  News media love to hype them either out of ignorance or sensational reporting to make a good story.  I am sure this same scenario exists in all medical circles, at least in the U.S. 

As far as "advertising for implants" that is stupid.  I have been here for 15 years trying everything from traction, VED, thousands of dollars in supplements, PDE5 inhibitors, Trazadone, manual stretching, and snake oil.  I feel stupid for all of it at this point and the same motivation that made me create this forum and spend thousands of hours and dollars is what makes me spread what to me and others is good news.  Call it advertising if you like.  I am sure like a smoker that finally accomplishes something by quitting, I annoy other smokers by preaching the word.  If you find a solution that makes you as happy as you were in your prime you will do the same.  The difference is that you will be welcome to do so on a forum that I pay for and that is maintained by the likes of me Pfact and others.  We will work to give you a forum to spread news of your solution without insults, accusations, or attacks like the ones that you like to direct at me.  It does not make you look either wise or mature.

Now, an end to the insults and back to the discussion on Wake Forest organ regeneration.

PS: Patientxyz1992 express my sentiments exactly.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

TonySa

  • Think Tank
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 3074
Re: Wake Forest- Good news
« Reply #81 on: March 09, 2019, 12:29:09 PM »

Alexsammo, I found your language of “like a toxic faggot” very offensive.  You should apologize, remove it from your post and not use hate speech any further.  I speak only for myself.

Logged
PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Wake Forest- Good news
« Reply #82 on: March 09, 2019, 01:18:34 PM »

TonySa Prfact with no reason called me and AlexSamo cocky piece of crap...isn’t this offensive..why no one moderated that.
Logged
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
** You will waste less time and get better answers **

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #83 on: March 09, 2019, 01:30:26 PM »

Jack,

It is time for you to put a lid on it.  If you have further comments that are not directly about Peyronies Disease or Erectile Dysfunction they best be made to me with a personal message

Hawk
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4384
    • Peyronie's Disease
Re: Wake Forest- Good news
« Reply #84 on: March 09, 2019, 01:34:19 PM »


So 15 years for the Wake Forest thing best case scenario? Oof  :-\

I don't think anyone said 15 years is the best case scenario.  I think that was my uneducated guess from the limited data I got from them that it could be that long.  That was a guess based on - they said 5 years for phase one.  In reality, this might not happen in a century and I guess could happen in 9 or 10 years if everything goes perfectly.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Patientxyz1992

  • This member has been warned for abusive behavior/inappropriate language.!
  • Voting Member
  • **
  • Country: hr
  • Online Online
  • Gender: Male
  • Posts: 33
Re: Wake Forest- Good news
« Reply #85 on: March 09, 2019, 02:59:22 PM »

Lets assume that they can make new corpora for people suffering from this disease, i will make a guess that implanting it in the penis would be as difficult or more than making new one,thats my fear!
Logged
This member has been warned for his abusive behavior and inappropriate language.!

suicidecomingsoon

  • Solid Contributor
  • ***
  • Country: aq
  • Offline Offline
  • Gender: Male
  • Posts: 225
Re: Wake Forest- No Good news
« Reply #86 on: March 10, 2019, 06:47:27 AM »

It's a pipe dream.
At the pace that advances wake forest this technology will not be offered even in 15-20 years from now and that if all goes ok. [email protected]<


Logged

Werther

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 202
Re: Wake Forest- Good news
« Reply #87 on: August 18, 2019, 05:42:56 PM »

Jack, your inbox is full! Please delete some itmes!
Thank you.
Logged
Pages: 1 [2]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
63 Replies
2170 Views
Last post November 15, 2018, 01:33:52 PM
by james1947
14 Replies
689 Views
Last post March 10, 2019, 04:07:37 PM
by Xehonart
3 Replies
1022 Views
Last post July 24, 2019, 07:34:40 AM
by Hawk