Stem Cells & Adult stem cell injections for Peyronie's

[Knight]

Very interesting. When you say, "Very expensive" can you give us a clue?

Good luck!

[rellisacct]

With lipo, culture of cells/growth factors, injection, hospital bills, travel for myself and doctor to and from Mexico...Final cost will be ~$15,000. So take your pick between a (hopefully) improved penis or a new car.  

[Knight]

If it is successful it would be worth every cent. Please keep us posted!

Good luck!

[Mentos]

I choose renewed penis!

[Guztavo]

Hi Guys, just wanted to post an update as i promised.

I had the Stem Cell procedure with Dr Lander in California.

I am just 12 days shy of the 3 month deadline he mentioned to see results. Unfortunately, in my case, it didn't work. I have not seen any improvement whatsoever so far.
If anything changes i will let you know.

That said, not sure if it will be the case of everyone, i didn't have a plaque to start with just curvature, so he said he didn't have a "target". Also, i did feel they are serious and are looking for a legit cure for this, not a scam. However, in my case it didn't work.

Hope this information will be useful to others.

rellisacct please keep us posted on your progress, since what you describe seems slightly different to Dr Lander's procedure.

Cheers

[james1947]

Thanks for the update Guztavo.
Sorry it didn't worked for you, but maybe you will see improvements later. As I understand it can be up to 6 months to see if it really worked.

James  

[muffslayer]

I'd rather have peyronie's for the rest of my life, then support or use stem cell research.

[emasculated]

Ahhh.. come on..
I'd rather harvest and EAT embryos for the rest of my life then spend one more second with Peyronies Disease. How's that? :-P

[MattFoley]

muffslayer, these stem cells are "NonEmbryonic". They have nothing to do with harvesting stem cells from human babies.

[Guztavo]

haha that's right. They just take some fat off your love handle and inject it back into your penis. Not sure what's wrong with that.

I didn't get any benefit so far though. Maybe others will.

[koolx]

muffslayer, if this is your idea of trolling for laughs then we're not laughing. And you may be reported as a result.

[rellisacct]

That was a VERY ignorant comment...Let's all just pretend that nothing was even said.

I'll keep you guys updated as things progress. They are doing a lot of work here and it's taking them 6 weeks to culture/grow/manipulate the cells, so I know they are putting effort into actually finding a cure for us and not just screwing around. Additionally, the procedure had to be performed in Mexico as this process is illegal in the U.S., mainly because the FDA deems this process to be effectively creating a drug, whereas in the U.S. it is basically injecting adipose tissue into the penis and hoping something sticks. If the FDA outlaws something, then that increases my faith in its healing power. There is an inverse correlation between actual cures and FDA approval in my opinion.

Also, both of the lead doctors have stated that they have seen some great results. One guy hadn't had morning erections in 3 years and now gets them every morning. If nothing else, that was enough for me to try this.  

[MattFoley]

rellisacct, perhaps I'm confused as to what this process is versus the stem cell treatment that is offered by a doctor in my area. Dr. Chen in Fairfield, CA does stem cell lab work and then one of the urologists he works with does the injections. This process is legal. What is it that you're having done that is different and makes it illegal according to the FDA?

[rellisacct]

The doctor from Wake Forest said that the procedures that are being conducted in the U.S. are just getting ADSC's from the fat tissue and then re-injecting without being differentiated into multiple lines and grown to get maximum number of cells.

The procedure in Mexico is culturing the cells and differentiating them into 3 different precursor lines (endothelial, smooth muscle, and nerve). They are able to get more accurate measurements on the number of each type of cell that they are injecting vs just taking adipose tissue stem cells and injecting. Additionally, they are growing the number of cells over 6 weeks so in theory they should get a large number of each type of cell for injection.

I'm not a scientist, but I do trust that the doctor I'm working with knows his stuff. Additionally, I'm not trying to knock the doctors doing work here, but to me it seems that this process is more specific and directed work towards regenerating penile tissue.

[MattFoley]

Thank you for that info. It sounds like the process in Mexico is a great deal more specific and more effective. Once again the U.S. is lagging behind. I wish you great luck and success with it.

[Guztavo]

@rellisacct Do they have any tests or evidence in other patients that has fixed peyronies or curvature for them?

Would be nice if you could share.

Cheers and all the success with this!

BTW: when are you scheduled to have this treatment?

[muffslayer]

muffslayer, if this is your idea of trolling for laughs then we're not laughing. And you may be reported as a result.

Reported for what? I'm not trolling, just asserting my belief.

Albeit I was ignorant of the fact there are other types of stem cell research other than embryonic (until members of this forum pointed it out), and now I've done some research into it.

So let me clarify my belief. I'd rather have peyronie's for the rest of my life than support or use embryonic or fetal stem cell research. This is what I was originally trying to say.

If it's fat from your hip I have nothing against it. If it's from embryo's, then I'm fully against it.

[MattFoley]

I don't want to side-track this topic but I would have a serious moral dilemma if I was told that embryonic stem cells could cure my Peyronie's.

I don't know what I would do. I hope I'm never faced with that choice.

[rellisacct]

@Guztavo  I'm not sure if they have any evidence of this correcting curvature in Peyronie's, however, curvature is not my main problem. Internal scarring, significant girth shrinkage, and impotence are my main problems and they have had some good success with this. I'm sure that this would have some impact on curvature as good cells would be taking over bad scarring cells in theory.

Thanks for the kind words...I hope this works for me which will then be able to benefit a lot of other guys on here. The actual injections will take place around March 15 time frame.

@Muffslayer/Mattfoley It would be a difficult dilemma for me as well knowing that only embryonic stem cells could cure my condition. I'm so far gone and have had so much of my youth destroyed by this disease that, with an element of shame, I can't say that I wouldn't go through with it. Luckily this is not a decision that we will have to make.

[emasculated]

They are just cells in a petri dish. You have your priorities seriously screwed up in my opinion if you worry about a non-issue like that.  

[rd]

I agree with emasculated. It would be hard for me at all to decide. If they told me embryonic stems cells would cure me my answer would be and easy YES! I wouldn't even give it a second thought. But to each there own.

[restore]

I don't want to side-track this topic but I would have a serious moral dilemma if I was told that embryonic stem cells could cure my Peyronie's.

I don't know what I would do. I hope I'm never faced with that choice.

The CNN report is exciting news since it says stem cells can be made quickly and cheaply WITHOUT use of embryos.  

[james1947]

Yes restore, you are right, but the new way to make stem cells quickly and cheaply is not yet implemented in any institution (as I know, maybe I am wrong)

James  

[restore]

Yes restore, you are right, but the new way to make stem cells quickly and cheaply is not yet implemented in any institution (as I know, maybe I am wrong)

James

Yes think you are correct, and this is just now breaking news.  But I believe the article did say that this new method will accelerate more research in that direction and probably bring the practical use of stem cell therapies sooner.

[jnbarizona]

Hello again everybody. Sorry I haven't posted in a while. I wanted to update my experience so far with the stem cell treatment I underwent in December. I went to Dr. Lander in CA. I got an MRI before my procedure, which confirmed the location of the plaque. He did shock wave therapy before and after my injection of stem cells. I received 95 million stem cells, that were taken from my back. When he injected me, he noted that he could feel the plaque with the needle, and used the needle to break up the plaque. My plaque measures about 2 inches in length, but I can't always feel it, it just feels rigid(non-spongy) on that side of my penis. So far, there has been no improvement. In fact, it seems worse. I only had a slight bend before, now the bend is much more significant. I know I still have some time to wait to know for sure, but I have my doubts that this will do anything for me, other than empty my bank account. I will update again of any progress. I do have a couple questions for other members, so hopefully they are reading this...

@Rellisacct... it sounds like from your description of your symptoms, we have the same situation regarding our Peyronies Disease. I am very interested to hear about your results. Did you need a referral to see the doctor at Wake Forest? Was it necessary for him to go with you to Mexico to have this done?

@Guztavo... you said you don't have any plaque. I'm wondering, have you ever been diagnosed with Peyronies Disease? From my understanding, you actually have to have plaque to have peyronie's. So that also makes me wonder how you qualified as a candidate for the patient funded trial. I'm sorry it hasn't worked for you.  

[e2219e]

Stem cells are easily derived from marrow or fat.  It is totally unnecessary to use embryonic or fetal cells.  The idea is that, by delivering appropriate cells to the wound site, the body will remodel healthy, functioning tissue rather than scar (or plaque).  I am still learning about the disease state of peyronie's, but I would be skeptical of any cellular therapy that didn't first remove the plaque.  As I stated in a previous post, I am an independent rep for a company that sells a device that concentrates both PRP and bone marrow aspirate.  I have been involved with regenerative medicine for the past 7 years, and removing scars is typically critical when attempting to repair soft tissue.  I actually knew about peyronie's prior to suffering from it (onset in the last 12 months).  I haven't seen a single study which shows promise of a full, or near full, restoration, surgical or not.  The Nesbitt procedure seems barbaric to me.  I have a surgical idea which combines a biologic graft and PRP, and will be approaching a physician group about the idea.  If they are interested, I will approach them about posting before and after photos, along with technique.  If it works, and I believe it will, I will find a way to share the data with you all.  I'd prefer to avoid surgery, but none of the non-surgical approaches are working, and current surgical procedures often create a different problem.  

[emasculated]

@e2219e: Your thinking is absolutely right on this. I hope to read from you later what you found out. But how is the biologic graft placed? That would require excision of the plaque which is a quite invasive and risky procedure or did I not understand you correctly here?

[rellisacct]

@jnbarizona   I did not need a referral and since this is a clinical trial that I'm participating in, the doctor did have to go to Mexico with me.

[Knight]

emasulated - e2219e clearly stated that he was skeptical of any cellular therapy that didn't involve removing the plaque first. I'm no doctor or anything close to an expert but based on my experience of what I am living with I completely agree. Unless the scar tissue/plaque is removed or somehow magically transformed into some softer form of tissue than it currently is I can't see anything making that much difference for any long term benefit or improvement. Invasive? Yes, they need to get in there and cut out the bad stuff and whatever is removed will have to replaced with new tissue, most likely a graft of some sort. It is what it is, isn't it?

I do question the whole degloving thing, but again who am I? It just seems in this day and age with all the technology and microscopic surgery techniques that some genius would recognize a market and develop a less invasive way of accomplishing the task than peeling all the skin off for access. Perhaps the combination of microscopic surgery, stem cell replacement and/or the P-shot might be a solution? Just typing thoughts here.....

[mariobros]

rellisacct, all the best of luck with your procedure it sounds very promising, much more advanced than the current methods available.

Am i to understand that this trial procedure was actually endorsed by a doctor at Wake Forrest?

[rellisacct]

Thanks Mario, I'm not expecting a miracle but hopefully this will be a significant improvement from where I'm at.

Yes, I am flying down with the lead urological tissue engineering doctor from Wake Forest. He is actually co-head of planning for the AFIRM II grant from the US Government.  

[james1947]

One of the answers I got here where I am living while asking about Priapus shot is that they are doing Stem Cells injections for Peyronies.
What I should expect and after how long time from Stem Cells injections?

James

[rellisacct]

I wish I could tell you more, but I really have no idea James. I do know that much of what is going on right now in stem cells is a crapshoot.

It seems to me like most doctors are shooting a shotgun at a target and seeing how many pellets hit.  

I should be able to tell you more in a few weeks, but the primary answer that I've gotten is that stem cells along with growth factors will help to create new tissue and can break up some of the scarring. I'll give you more details as things progress.

[james1947]

Thanks rellisacct

I will make appointment next month with two doctors in two different cliques. Both 1:30 hours flight from where I am living.
I have to be there in any case next month.
Before going forward with something, I will tell the forum what they say and ask for opinions.

James

[jnbarizona]

Dear Mr. Moderator(or whoever is running this thing),

I have been posting in this section recently, because I underwent stem cell therapy in December, and I wanted to contribute to the discussion. My most recent post was removed, why? I know that in that post I did mention the possibility of doing the Xiaflex treatment prior to injecting the stem cells, and I was curious to see what others thought. Maybe it's because I mentioned Xiaflex, or maybe it's because some idiot posted a negative reply in an attempt to start an argument. Either way you're wrong for removing my post. Hell, you have reps on here talking about PRP injectons, and also talk about surgery, but you have a problem with MY post?  

Look, if you don't want me here, and are not interested in my contributions, that's fine. If that's the case, I'll leave you all to your bickering. So you can just go ahead and delete this to, then I'll know to delete my account and move on.

Thanks.  

[james1947]

jnbarizona

I just checked your profile and find you have posted 7 posts.
I didn't see any links in your posts or profile so I don't understand how it happened.
It is very unusual that a moderator or administrator will remove a post. Even posts with commercial links we are just deleting the link.
I am checking now the subject to understand how it happened.
Please be kind and write down your post again.
Personally, I am very interested in your results as stem cells treatment for Peyronies is available here where I am living.

James

[Norm]

Jnb,
We don't normally remove posts unless they are spam. Looking at your posts, I do find one over under the Surgery board named "Re: Graft Surgery Procedure" where you talk about having Xiaflex prior to stem cell. Is that perhaps the post you think was deleted?
Norm

[jnbarizona]

@Norm... Yes, that was the post. However, I don't think it belongs in the Surgery section. I'm going to re-post it here again, per another members request. I guess if it's that much of a problem they can move it again. Thank you. I've decided to stick with the forum, I just got a little ticked off about it I guess. I'm trying hard to find a fix for this problem that's ruining my life.

@James... I had my stem cell injection 10 weeks ago, so far no improvement. The doctor said usually 3-6 months to see if it works, but he said no results are guaranteed. I didn't have a significant bend, but since the stem cell therapy my bend is worse now. The doctor did shock wave therapy on Monday... lipo from my back, shock wave again, and stem cell injection on Wednesday... and finished with shock wave again on Friday, so it was a week long thing. He noted when he was injecting that he was using the needle to break up the plaque. There was a lot of blood, and I was bruised for over a week, plus swollen for several weeks. It still feels sore all around the target area, and I have a small lump at the injection site not. I'll update of any changes. I wish you good luck if you decide to give it a try. I just wish I had better news to report about it so far.

My condensed previous post... What if I did the Xiaflex injections to break down the plaque(yes, I am aware of the risks of Xiaflex), then completed the treatment with my stem cells. Anyone have thoughts on that idea?  

[Norm]

No one moved it in the first place. We cannot move posts no way, no how without a trail showing that it was moved and why. That is where you posted it. We can, however, move it if you would like for us to. That is easier than having you re type it. Just say the word.
Norm

[anonpdacct]

Hi everyone,

JNB asked below: 'what if I did Xiaflex injections to break down the plaque... then completed with stems cells...'

Here's a patent application that talks about exactly this.  The author was at AMS at the time.

TREATMENT OF PEYRONIES DISEASE - Patent application

I would love to hear folks comment.

JNB - I'm sorry your treatment hasn't delivered the results we are all hoping for.

best,

Anon

[emasculated]

Ordinary Xiaflex alone carries the risk of rupture of corpus Cavernosum. "A high pressure injection device" doesn't sound very safe.

[jnbarizona]

@Norm... I swear I posted it here, then it moved, that's weird. Anyways, thank you and I apologize for the confusion.

@emasculated... I already mentioned in my post that I am aware of the risk involved. Thank you for your comment.

@anonpdacct... Thank you! I'm going to read through that tomorrow.  

[Knight]

@anonpdacct - Thank you for posting that link! I CAN'T BELIEVE IT BUT I LIVE RIGHT DOWN THE ROAD FROM THIS NATELIE ANN BORGOS! You can bet your bottom dollar I'm looking her up!

[james1947]

I try to read (and to understand) the patent but I don't understand to much.
Is this an available treatment?
Can contact Natalie Ann Borgos and get the treatment?

James

[Knight]

Weird....after a few quick searches I'm not sure she even exists? You'd think this person would have a medical profession and would be easy to find with the internet but so far no luck. It looks like her and her husband have applied for several patents but haven't received any. I'll keep looking....

[anonpdacct]

I think if this treatment regimen were being practiced today by real doctors, we'd know about it.  The application merely presents theory and arguments for why this protocol could work.  I'm trying to find out whatever else I can, but not very optimistic about getting information more useful than what's there.

Anon

[jnbarizona]

@Knight... please let me know if you find her, I'd be interested to hear what she has to say. I'm going to speak with some other doctors in the near future about this method as well.

@James... it's unnecessary to read through the whole thing. The 'Abstract' paragraph at the beginning sums it up. I agree with Anon that it's mostly a proposal. I'd be mostly concerned with at what point the stem cells are being injected. I would think you'd do the X treatments first, then follow up with stem cells a short time after.  

[e2219e]

emasculated - Sorry it has taken me this long to respond.  I have yet to get in touch with the physicians.  I will keep you posted.  Graft placement and plaque removal would require surgery.  I need to sit down with a thoughtful surgeon and walk through the surgery with them.  I believe the invasiveness of the procedure will be dependent on the amount of plaque and the area it covers.  I have not been in the OR for a penile procedure, so I am not sure what the options for entering the site are.  De-gloving, while it sounds awful, may be the best option, as the scar can be hidden, and you are creating less trauma near the injury (plaque).  And, as the plaque often encircles the effected area, it gives the surgeon better access to the site.  If the plaque could be removed percutaneously while using a small camera or fluoroscopy, you'd still have to be able to place the graft securely. It could be possible to put the graft material in through a very small incision (say where the camera or debridement tool was inserted, and then unroll it and place it over the area where the plaque was.  This is where it would get even trickier.  You would need to secure it into place, which is easily accomplished in a de-gloved situation, but much more complicated percutaneously.  Fibrin glue works great with the graft material I'm thinking of in other areas of the body, but I don't know if the delicate tissues in the penis would react poorly to a material that can be rather hard, and even sharp, upon setting.  Sorry to ramble on.  It may be possible, but that doesn't mean better.  

[op]

Some news:
p.s. 75$mil was invested for tissues regeneration research including Genital area.

Genital Injuries - Wake Forest School of Medicine

[james1947]

An other interesting article regarding Stem Cells.
Not for Peyronies, but encouraging.
First stem cell study of bipolar disorder offers hope for better treatments | Fox News

James