Xiaflex and Doctors

Some of the big questions that come up often about Xiaflex are, "Who should I contact about Xiaflex?" and "What doctors have experience with administering it?"

I suggest you contact Auxilium Pharmaceutical Inc, the manufacturer of Xiaflex and the sponsor of its recent clinical investigations.  For more information,  call the Auxilium Drug Information Center at 1-877-663-0412.

They should be able to refer you to a urologist in your area who participated in the clinical trials and is experienced in its use.  The clinical trials took place at 54  sites in the United States and 10 sites in Australia.

December is when Xiaflex is scheduled to be released.  There was a 3 month delay announced last month by the FDA.  

If you are wondering how severe your Peyronie's disease is there is a questionaire you can fill out at:
 http://www.auxilium.com/PDFs/PDQ%20from%20Protocol%201.25.pdf

Check Out This Site: "Penis Implant Surgery after Peyronies" - A Personal Experience

I receive a lot of emails from men, and sometimes their wives or partners.  Most are asking questions about details of what I did in my own treatment of Peyronies.  Some share their heartbreaks, and terrible situations.  When I reply and tell someone that I will remember them in my prayers, I do that, I pray for them.  My desire is that anyone trapped in this situation would find recovery and healing.  Many men thank me for the website and tell me how much it means to them.  That always feels so great and validates, what I am doing here.

Anyway, my wife and I were working with a video crew on a still secret public awareness project, that we are not yet free to elaborate on.   

That's kind of an oxymoron - secret/public awareness, almost sounds like the government.  Anyway, I digress, from that video project another man contacted me through email, and told me that he had gone through all of the turmoil, fear and anguish that Peyronie's causes in our lives.  After interminable suffering and treatment, he was unsuccessful.  He was left with irreparable E.D. and deformity.  His life was shattered.

Sounds bleak doesn't it?  Well he moved on and had penis implant surgery.  It was not only spectacularly successful, but he went public with it and posted a blog. 

Here is an excerpt from Jack's blog: 
My recovery has been a great gift from God. It restored the pleasure of marital sex that God intended for us to have. I fully believe that marital intercourse is a gift of pleasure from God. 

It would be great if all of you reading this, would go check out his story and how he is ministering to men and couples that have lost hope.  His blog is inspirational and I am happy to share this with you.

Read Jack's story here: http://jackp-penileimplant.blogspot.com/ 

Alzheimers/Dementia Information and Treatment Updates

As we get older, all of us are affected by a family member or friend that develops Cognitive Impairment.  The most common term we hear is Alzheimer's or Dementia.  Age related Dementia is a fear that dwells in the back of our minds somewhere.  We all try to keep it in the shadows, but it can rear its' ugly head every time you set down that screwdriver or pencil and then can't remember where you put it.


That actually happens to everybody, even kids.  When a family member though, is struck with Alzheimer's, it hits home.  Alzheimer's is described by family members as, "The Living Death!"  It is heartbreaking to watch loved ones lose everything in their mind, the things that makes them who they are, and the people that we Love.  They just slowly disappear, and it devastates family and friends.

I'm working on a newer section of the site in the pages/tab bar labeled; 
Index for Medical Conditions 

When I receive or find valuable information about medical conditions that affect us as we age, I will build new pages and add them to the index.  Recently Alzheimer's has been a real hot button in our family's life.  My wife is caring for her Mother, and it is really just overwhelming.  It is all consuming and very frustrating to care for someone that remembers most of the past, but can't remember a conversation that happened 15 minutes ago.  Every day is like the movie, "Groundhog Day.

Please go to this link to read the report:
http://www.sexuallyhealthyman.com/2010/10/alzheimers-disease.html

There is an amazing video posted near the end of the article that was produced by the 700 Club.  It received 5 million online views the first month it came out.
 
 


What would I do if I was diagnosed with Peyronie's Disease Today?

There are a lot of changes happening recently in the treatment of Peyronie's disease.  A big new development in pharmaceutical treatment protocols is about to be approved with Auxilium Pharmaceuticals new drug, Xiaflex. (pronounced Zi-a-flex) 

You may be wondering how effective Xiaflex is and how it is administered so here is a quick overview of the clinical test results:

  • Patients average angle was 50.2 degrees, so some were less and some were more.
  • 8 out of the 9 patients achieved 25% or more reduction in angle 9 months after the 1st injections. 1 has 24% reduction.
  • Based on global assessments 67% of subjects were very much improved.
  • Xiaflex is injected intralesionally into the affected area in an in-office procedure with the intent to soften the scar tissue and reduce the curvature of the penis. Study Website - Click Here

If diagnosed today, what would I do?  Well, knowing what I do now, upon approval of Xiaflex  (Sept. 6th, 2013 is the tentative date)  

  • I would ask my Urologist to prescribe and administer a series of injections using Xiaflex, if I met the criteria and it was covered by my medical insurance.
  • I would purchase a traction device to help decrease my percentage of curvature,  rather than just using the medication alone.
  • I would also take the enzyme supplements (Serrapeptase, Nattokinase and Acetyl L Carnitine)  These ingredients promote healthy blood flow and scavenge fibrin.  Since Xiaflex softens the plaque, I would want the increased blood flow to carry away the softened plaque material.
  • It has come to my attention that CoQ10 is being used to help cardiac and erectile dysfunction disorders.  Men over 45 produce less CoQ10, and it has too many benefits to list here.
  • I would hold off with applying the topical gel while under the doctor's care with Xiaflex.  Hot compresses would more than likely be beneficial, as they increase blood flow, and heat softens hardened collagen.  Hot compresses would need to be done a couple of days after receiving injections to allow healing of the injection site.
  • If I was not taking Xiaflex, I would purchase the Size Genetics new Peyronie's system and use it as my treatment program.

Auxilium Pharmaceuticals and Xiaflex

    A new medication for Peyronie's is close to being approved and available.  Xiaflex is already approved for treating Duypentren's Contracture and will soon be approved for Peyronie's.  Phase III results are very promising.

    Xiaflex is administered by local injection (ouch!) with a small needle.  But, you know what they say,  "No Pain, No Gain!"  

     There are those that think this a hard sell, but you men out there, that are suffering with this condition, know it is much worse to avoid sex, suffer the embarrassment and lowered self esteem that accompany Peyronie's.

     Check out the links in the article above and be pro-active in your treatment.  I would definitely have added this to my treatment program if I was going through this today.

Here is one more link to check out:   http://askaboutthecurve.com/

Best Wishes for Your Successful Treatment - John Parks


    

Lost Emails

During the Construction and Move, my computer was moved and shut down for a few days.  I later realized that I lost a lot of emails during April.  If you contacted me during April and did not get a response.  Your email was probably lost.  I apologize for this and hope you will re-contact me with your questions or requests.

A few emails I read previously, were no longer there when I turned the computer back on, and me being an internet caveman, I never could figure out how to recover them.   Please accept my apology, it is important to me to hear from you and I always try to promptly reply.   Thanks - John
menssexualhealth@hotmail.com

I'm Back

Sorry about my long absence,

I moved to the Idaho panhandle in Mid August and did not have internet access for quite a while, due to my remote location and construction project.  We really needed a roof over our heads, before the snows hit.


I'm finally back and am working on answering your questions and comments.   Between hanging sheetrock and plowing snow.  Some of the comments cannot be published as they contain too much personal information, or inappropriate content.  

Here is my policy for publishing comments:

No explicit sexual content:  Please don't describe things that would embarrass readers.  Details of an accident or general sexual info. is OK, but keep it no more than R rated. 

No personally identifiable content:  Use anonymous or your first name when leaving comments.  I don't want readers to know who you are.  If you have questions that would compromise your identity, you can ask them in an email to me.  menssexualhealth@hotmail.com
I will try and reply as soon as I'm able.

No Minors:  The content on this site is for adults and it is an adult related problem for the most part.  If you are under 18 years old and have questions, talk to your parents or personal physician.  This is not the forum, and it would be unethical for me to discuss such a personal problem with you.

No Profanity:  I sometimes receive comments with profanity, I do not edit any comment, so misspelled words and poor grammar are printed, but I do not print comments with profanity spelled out.  It's not necessary anyway.  

No Spammers:  Readers want to read real questions, and most men with these medical conditions want content they can identify with.  Please don't post comments that are just promoting your website.  Keep it relevant it's OK to put your website address in the comment, but I won't post irrelevant questions.

OK! Whew! the harsh part is out of the way. 

NEWS FLASH!!
I've written an e-book with loads of info.  It isn't quite ready to go out yet, but if you need the info. now - I know, Peyronie's is a desperate condition and you want to know what to do now, Email me:
menssexualhealth@hotmail.com
and ask for a free copy, I'll send it in an email as an attachment.  

You can download it or print it and use the info now.  It is still in the editing process and I found a couple things that need to be added, but it is available in it's almost complete form now.  Feel free to share it with your doctor and get his input.  My doctor has shared the book with patients as an alternative approach to surgery.  I'm sure all doctors will not be as open minded, but I'm not a doctor and your own doctor should know what you are doing to treat your condition.

Thanks everybody for your input and it's good to be back.