Wednesday, 27 February 2013

Reconstructive Surgery for Peyronie's Disease

Surgery for peyronie's disease is a treatment option that benefits many men. While there can be down sides such as potential ED issues, shortening of the penis, and changes in the condition further down the line (though changes can of course happen with or without surgery) it's often a viable option for men with stable peyronie's. This is especially true when the extent of the penile curvature rules out options such as VED / traction in combination with oral treatments. These latter options are designed to soften and stretch the plaque - it's a more conservative approach.

While there are several posts and studies covering surgical solutions on the site, as well as valuable input from medical professional such as the comment underneath this surgery post it could be said that coverage of PD surgery here is not as complete as it could be. An area especially lacking is penile implant surgery, a type of procedure often carried out when the patient can no longer achieve a functional erection, on account of erectile dysfunction.

With this in mind, I was pleased to be sent a truly thorough document on penile reconstructive surgery for peyronie's disease called 'Atlas of Reconstructive Penile Surgery'. It can be downloaded here . This 40+ page document, brought to us by a renowned Italian urologist, includes a very detailed guide to prosthetic implants, including the type of implants available (non inflatable, inflatable etc) and lists the advantages and disadvantages of each. It also touches on the more functional types of penile surgery such as various grafting methods, nesbit procedure and so on. There are mentions of Dr Lue and David Ralph along the way, surgeons noted for their exertise. It's a very complete look at surgical approaches, with an emphasis on implants.

Note: The .pdf features graphic colour images of penile surgery. If you don't wish to see such images, you may want to give this a miss. You can always view non graphic peyronie's disease bend pictures here instead.






Wednesday, 20 February 2013

Xiaflex Experience and Analysis Article


Just a quick post to say that the Cure Peyronie's website has been updated to feature a lengthy write-up on the state of play and possible pros and cons of Xiaflex injections. It's very thorough, examining the clinical trial results, and even the author's own experience of taking part in the recent Xiaflex study (he was initially given a placebo, then later the real deal - read about how that went on the site).

It can all be read here . To navigate the article use the black arrow at the bottom of each page.

Tuesday, 19 February 2013

Xiaflex Phase III Study

Abstract 

Purpose

The Investigation for Maximal Peyronie’s Reduction Efficacy and Safety Studies (IMPRESS) I and II examined the clinical efficacy and safety of collagenase clostridium histolyticum (CCH) intralesional injections in subjects with Peyronie’s disease (PD). Co-primary outcomes in these identical phase 3 randomized, double-blind, placebo-controlled studies included percent change in penile curvature deformity and change in Peyronie’s Disease Questionnaire PD symptom bother score from baseline to 52 weeks.

Materials and Methods

The IMPRESS I (N=417) and II (N=415) studies examined CCH intralesional injections through a maximum of 4 treatment cycles, each separated by 6 weeks. Subjects received up to 8 injections of 0.58 mg CCH, 2 injections per cycle separated by approximately 24-72 hours, with the second injection in each followed 24-72 hours later by penile plaque modeling. Subjects were stratified by degree of penile curvature at baseline (30-60° versus 61-90°) and randomized to CCH or placebo (2:1 in favor of CCH).

Results

From a post-hoc meta-analysis of IMPRESS I and II data, CCH-treated subjects showed a mean 34% improvement in penile curvature deformity, a mean -17.0±14.8° change per subject, compared with a mean 18.2% improvement in placebo-treated subjects, a mean -9.3±13.6° change per subject. Mean change in PD symptom bother score was significantly improved in CCH-treated (-2.8±3.8) versus placebo (-1.8±3.5, p=0.0037) subjects. Three corporal rupture serious adverse events occurred and were all surgically repaired.

Conclusions

The IMPRESS I and II studies support the clinical efficacy and safety of CCH treatment for both the physical and psychological aspects of PD.

http://www.jurology.com/article/S0022-5347%2813%2900227-9/abstract

-Thoughts-

These results, while not astonishing are worth taking note of. Men who received Xiaflex injections as part of the Phase III study had a mean improvement of  34% vs 18% for those in the placebo group. This compares to a mean improvement of 29.7% in penile curvature and 11% for placebo in the Phase IIB study. This suggests to me that both the structure of the program and skill of the doctor injecting are meaningful factors when we're talking about outcomes.

The positive results for the placebo treated patients is, as it has been in previous Xiaflex studies, somewhat perplexing. It may be that the tendency to experience spontaneous improvement is greater than thought, though more likely is that the penile 'modelling procedure' (traction therapy) which forms part of the regimen, is responsible for the improvement . I'll keep an open mind about it. In either case, the take home from this is that Xiaflex isn't a miracle drug but certainly can help to reduce curvature of the penis. Side effects can be an issue with some men though, so it's all about what's right for the individual. These results are set to be published in the Journal or Urology mid way through the year.


An Email

Dear Peyronies-disease.co.uk,

I had an appointment with (name removed) who is the specialist surgeon at university hospital. The night before I went for the appointment I discovered my fourth plaque so I explained to him my desire to follow all courses of action available to me in order to prevent further advances in my disease. I asked him about traction treatments, colganese injections and vacuum treatment all of which he had the standard NHS answer for which is there are no proven clinic trials to support them. He also said that surgery would not be an option for me. By this point in time my frustrations
which have been building up for the last two years of less than wonderful treatment I feel I have had boiled over and  I explained to him how I felt that following some course of action which would at least give me hope of this not getting worse was better than doing sod all. He then explained that in his opinion I would never have the penis I did before the onset of the disease but he could see my point of view.

Fortunately he gave me a prescription for the pentoxifylline so I have been on that for three months now with no further plaques. He also arranged an appointment for a vacuum clinic which I attended and I have been following his prescribed morning and evening half hour sessions.  I have noticed a slight improvement in straightness over the last three months possibly only to the tune of 5 degrees but that is better than nothing. The wasted section has stayed as before. I also feel less discomfort when erect which is comforting. Could I possibly ask a couple of questions?

1) With regards the ved treatment they say to not over pump which I assume means to only pump to a comfortable stretch?
2) as it looks like I am not going to be one of the lucky ones where it clears to a certain extent by itself, can I expect more plaques over time if I dont stay on the pentoxifylline?
3) Will the plaques' soften over time or is their effect likely to be permanent?

thanks for your help and support.
------------------

Reply:

I don't think it's accurate for (name removed) to say that there are no clinical trials to support traction and injection therapy (or ved for the matter). I would agree that surgery wouldn't be suitable where there is current plaque development. Typically surgery is carried out after several months - often a year - of 'no change' in the condition. The problem is that urologists are trained to treat medical conditions, and often not with regard to mental health. As such they can sometimes appear to be cold and dispassionate about your plight, which is the exact opposite of what someone struggling with peyronie's disease needs emotionally. My belief is that there should be a two tiered approach, where you get to see a urologist  for surgical - or conservative - treatments, but also a counsellor to deal with the emotional issues that this horrible condition brings about. There's a culture of sweeping men's sexual health issues under the carpet, and of not treating them with the seriousness they deserve.

I'm really glad, however, that he prescribed pentoxifylline. It's no miracle drug, but it's potentially very useful and good to have that going for you. I'm glad you've benefitted from the ved too. It may only be a 5 degree improvement, but who is to say what would've happened without this regimen, in the negative sense? I'd certainly say that overpumping can be a problem. It sounds like you've already got a steady and sensible approach though, so I'd keep doing what you're doing. Some men do go into gung-ho mode and before you know it they have to take breaks of weeks or months from the ved. On rare occasions they may even do permanent damage. It's best to get a sense of what is safe and sensible and stick with that.

As for plaques, it's notoriously hard to predict what will happen, though the general consensus appears to be that when sticking with a mechanical regimen (ved, traction etc) and proven oral treatments like pentoxifylline (possibly CoQ10 too) that you're doing just about all that you can to exercise the penis, deter further scarring and make improvements from the position you find yourself at. Scars can certainly soften over time and pentox helps that. They can calcify too unfortuanately (which can make surgery a problem), but pentox is very good at reversing calcification, so I would think that if you're on it already that won't even be an issue.

Thanks,

Peyornies-disease.co.uk

(Posted with permission. Identifying information removed.)

Thoughts On Peyronie's and Sexuality

I remember seeing a PD forum post many moon ago that sparked a bit of a debate. A gay man posted that he wanted to speak with other gay peyronie's disease sufferers. The reaction from some was "why can't you speak to the group at large about it?", though others had a more nuanced view. The former is a perfectly valid point, but with the challenges that peyronie's disease brings I think it's important to try to put ourselves in everyone's shoes to create the optimal environment with regard to treatment and mental health. Just as a woman's perspective will be different from a man's (hence why there are some women orientated boards) a gay man's viewpoint could be slightly different to a straight man's depending on his individual circumstances.

Of course with regard to general treatment options it wouldn't be, that would be the same across the board. There are finer points to consider though. Some gay men may feel more comfortable discussing sexual matters together than part of a wider group. That's likely true of heterosexual men too. There may be a tendancy to want to try to avoid conflict with other's world views and so forth. Typically this may be something that could be thrashed out in public, but we have to bear in mind that often men seeking help for peyronie's disease are at a very low ebb as it is, and so are looking for an environment where they do not have to validate themselves on additional levels.

Another aspect to consider is that two gay men with peyronie's disease could potentially form a relationship together. As with any peyronie's sufferer the extent of their curvature and pain would dictate how sexually active they could be, but still it's a point worth raising. Where two people in a relationship have exactly the same health problem it's clearly a somewhat different situation to where one has a problem that the partner appreciates, but can't truly understand, or at the very least is not physically attached to. Also, what is sexually activity to one person, may be different to another. Sexual roles for instance. I certainly feel that it would be unlikely for gay men to openly discuss such matters on public forums without there being some kind of negative reaction on occasion.

It ranges from difficult to impossible to put a number on how many men actually suffer from peyronie's disease. It's very possible that there may not even be a demand for a gay specific peyronie's forum, but maybe a sub board on an existing board, who knows? Having peyronie's disease isn't exactly something that people advertise far and wide (try looking up 'peyronie's disease' on billion + member facebook, and see how very few men are 'out' about their PD) and so it would appear that if any of these concerns are to be met, it's unlikely that would happen outside of a PD community environment.

This whole post may come across as a bit 'niche within a niche', but realistically peyronie's disease is an adopted minority status in some sense. One that brings with it a whole host of unique and challenging problems - let's not forget that gay men were specifically excluded from certain Xiaflex clinical trials. If we appreciate that, it's also important for us to realise that all men dealing with this issue, gay and straight, deserve to be able to make the very best of a bad situation without additional hurdles along the way.

Thursday, 14 February 2013

Peyronie's Disease Plication Comment

It's always nice when site visitors take the time to comment on updates, so I thought I'd highlight one received earlier in the month which I feel really adds something to the post it pertains to. It's a comment from a urologist named JB, under this peyronie's disease surgery post from August 2009. He clearly took quite some time to make the comment and it's very thorough in relation to plication surgery and what to expect from it. He also touches on other types of surgical procedures as well as non surgical approaches to PD. Check it out.