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Author Topic: One Knight's Xiaflex journey  (Read 12410 times)

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Knight

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One Knight's Xiaflex journey
« on: October 28, 2014, 09:07:43 PM »

Well in less than 2 days I will receive my first Xiaflex injection at The Mayo Clinic in Rochester, MN. I will receive round 1 Thursday 10/30 and round 2 on Friday 10/31. Talk about a frightening Halloween! I was convinced by Dr. Landon Trost to try the injections before opting for grafting surgery. His reasoning is there are less risks involved with Xiaflex and surgery is always still an option should the injection results be unsatisfactory. But the thing that really convinced me to try this first is all the wonderful reports I've read on this forum about how well the treatment is going for others. Thankfully my insurance should cover all but approximately $5000.00 of the cost involved. 5k is still a hefty investment but if this is successful it will seem like pocket change.

I also ordered a X4labs Starter Edition tonight per the advice of a trusted brother on this forum. It should be here by Monday so I'll be ready when it's time to do traction. I think I dread that idea as much, or more than the shots themselves. I already have a VED if needed, but every time I've tried to use that in the past it has created more inflammation.

I'm planning on driving about 100 miles alone after each session so I hope I'm tough enough to handle it. I'm also planning on working both days. It's primarily office work so if I can sit or stand I should be able to function.

Wish me luck guys!

I'll keep a log on the process and results for others to hopefully learn from.

May we all beat this awful affliction!
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NeoV

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Re: One Knight's Xiaflex journey
« Reply #1 on: October 28, 2014, 10:14:48 PM »

Good luck Knight! I think Xiaflex has been slowly gaining a more positive face on these forums and looks like it can really help. Keep us closely updated. I remember the long drive home with a swollen penis from the PRP shot, how odd that was. Actually my mother was driving, even more strange of an experience!

james1947

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Re: One Knight's Xiaflex journey
« Reply #2 on: October 29, 2014, 12:40:25 AM »

Good luck Knight.
Wish you very good outcome.
As NeoV wrote, it helped many on the forum, I am sure also many others that are not here.

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

selftreat

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Re: One Knight's Xiaflex journey
« Reply #3 on: October 29, 2014, 12:17:43 PM »

Good luck to you Knight, hope it works.
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UrsusMinor

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Re: One Knight's Xiaflex journey
« Reply #4 on: October 30, 2014, 03:50:20 PM »

I think you and your doctor have it absolutely right--trying the Xiaflex first doesn't rule out surgery.

Some of the side effects pictures I saw initially frightened me away from Xiaflex, but the reports of forum members so far have made me see things in a very different light. The most interesting thing is that the results forum members are reporting seem to be far better on average than the results from the clinical trials!

Best of luck, and keep us posted!
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james1947

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Re: One Knight's Xiaflex journey
« Reply #5 on: October 30, 2014, 06:32:59 PM »

I will say again, I was maybe the most skeptical person on the forum regarding Xiaflex.
But as Ursus has said, the forum reports are far better than the trials, so I completely changed my mind.
I am thinking now that the bad results shown by some during the trial were from doctors that didn't understand how to inject and stretch.

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

Knight

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Re: One Knight's Xiaflex journey
« Reply #6 on: October 30, 2014, 11:23:07 PM »

I appreciate all the well wishes and support guys!

My wait in the waiting room was over an hour. What I didn't realize at the time was the pharmacy waits until you arrive before mixing the compounds and loading the syringe. I suppose it's so expensive that only makes sense but I didn't realize the compounds had to mixed per dose right before being administered. Once I was called into the exam room I asked a few simple questions and we talked over the process and future options should Xiaflex not produce satisfactory results. Dr. Trost seems confident that Xiaflex stands a good chance of reducing my twist and curvatures but he doesn't believe it will dissolve anything that has already calcified. But my thoughts at this point are who knows what's calcified plaque and what's uncalcified plaque anyway? All we know is there is a scar in there and some it feels quite hard.

Dr. Trost had me lay on my back and then he demonstrated the stretches  I am to do  every day using my penis as the model. I was a little surprised on how aggressive the stretch should be but it was pretty much what I expected. I then laid my head back so I didn't have to see what he was doing and he injected me splitting the dose into 2 locations, one at the tip of my hardest plaque and one further back towards the base of my penis. I could actually feel him trying to penetrate the plaque and as horrific as that sounds the pain was very tolerable. I hate needles and I did fine with this. If I can handle it I suspect most anyone could. Like I said, needles typically turn me into a weak-kneed-wimp and I can barley stand giving up blood for a blood test.

But he did promise that tomorrow's shots would provide a bigger BANG in the discomfort realms.

Post injection we talked a few minutes and said goodbye until tomorrow. Before I left I asked him when I should start stretching and traction and he said immediately. Apparently the medicine is done doing what it's going to do in about 30 minutes. One thing he stressed was my homework and physical therapy as a patient will play a huge role in the overall success of the treatment. Stretching and traction are what he recommends. I won't have my x4labs Starter Edition until Monday so I won't be able to do traction until then. He did say I'm going to be sore and won't want to do these things but it was very important that I do them anyway. He wants me to gain a notch on the traction device every week if possible. Since I don't have the device yet I don't even know what a notch is but I would imagine there has to be limit to how many notches anyone can ultimately gain. His point was to stretch it!

The 2 hour drive  home was no problem. I stopped to use the restroom about 45 minutes down the road and noted some swelling and bruising. By the time I got home and looked again it was probably 3 hours post injection and I had a large blister on my shaft right below the point of my plaque where I have a large dent while erect. 6 hours later and I am even more swollen and bruised. The pain is tolerable, it just looks really bad. Biggest blister I've ever seen in my life!  I'm hoping this means the Xiaflex got in there waging all out war destroying all the plaque it came into contact with. I have to think positive, it looks nasty.

Pain/discomfort level on a scale of 1 to 10 = 2.5

Visually horrific on a scale of 1 to 10 = 8

No sex for at least 2 weeks per the manufacture (and he personally recommends a full month) were my only other noted limitations.

Tomorrow promises to be a long repeat of today so that is all for now.

I'll update my status tomorrow night!

Peace my brothers!

Knight
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james1947

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Re: One Knight's Xiaflex journey
« Reply #7 on: October 31, 2014, 01:54:38 AM »

Knight

A very detailed day, it makes me to understand whats going on.
Wish you a good sleep and rest.

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

Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #8 on: October 31, 2014, 08:26:31 AM »

Knight -

Glad to hear the first injection went well, and good luck today. A few things:

1) As your doctor noted, yes the second injection feels a little sharper because you are already sore from the first - but the pain is brief and tolerable.

2) I recommend bandaging your penis after the injection.My doc does this, and I experienced almost no swelling after my injections, except one time when the bandage fell off after a few hours  - then my penis starting swelling like I hear people describe. Ask your doctor about it today. He can probably give you a roll or two of self-adhesive bandaging. The first 24 hours is most critical.

3) The modeling is very important. Be purposeful and stretch yourself firmly - slowly, but with very firm tension. Try it at angles away from your curve, a few times a day. Sometimes my arm shakes from holding the pull for 30 seconds. That's how I know I'm doing it right ;)

4) Xiaflex has a short half-life, but it's active for at least a few days - and you'll be sore for about a week after the shots. This is the most important time to do traction and modeling, but also continue it over the next 6 weeks. Regarding adding "a notch a week" to the traction, I don't know if that's possible, but vary up the metal shaft lengtheners as you progress. You'll see once you get the hang of it.

Mending the Bend
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Knight

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Re: One Knight's Xiaflex journey
« Reply #9 on: October 31, 2014, 09:23:13 PM »

Mending the Bend -

Your advice is spot on with the instructions I have received from Dr. Trost. Thank you for being so active on the board and for all the detailed accounts of your experience. Your written testimony played a huge role in helping me make my decision to go through with this.

I wish I would have seen Mending's post earlier but it is too late, I had the second shot about 4 hours ago. Last night went well. I was a little uncomfortable but it was much more visually alarming than it was painful. I felt fine but the night was short because I had to get to work extremely earlier to try to keep up with my demanding customers while zigging and zagging back and forth from Minneapolis to The Mayo Clinic. I was able to physically do whatever I needed to do and although still quite discolored, swollen and bruised the swelling had gone down considerably over night. Work went fine and the road trip to Rochester was uneventful except for trying to stay awake while driving. The wait in the waiting room was over an hour again and then they brought me back to the same table I had laid on 24 hours earlier.

Yesterday it was Dr. Trust who did the injections but today his assistant Josh was there to do it. This concerned me a little, but Josh was the same guy who had done my ultra sound so he wasn't a complete stranger and he was quite familiar with me and my shape. I suppose yesterday's injection sites were documented and it wasn't hard to see them but it seemed to me that the same doctor would know what he did yesterday, have a plan for today and would want to perform the second injection. Maybe I over think things. I suppose it's a big hospital and I'm not that important. I'm sure Josh did a fine job with the second injection.

The shot today all went into one single location as far as I could tell where as yesterday Dr. Trost split the dose into 2 locations. I think Josh moved the needle around a bit, but never pulled out and hit a new site. Keep in mind I never saw any of this, I just felt what they were doing both times. Josh did go in at almost the exact same location as the 1st shot yesterday and as promised and mentioned by Mending it was considerably more painful than yesterday. It hurt but I got through it. If I can get through it anyone can get through it.

Josh said that he has seen some guys get good enough results after one series of shots that guys call it good and go no further. He also said that those with the worst curves are those that seem to see the most dramatic results. Josh said no intercourse for 4 weeks and set me up for series two of the Xiaflex journey six weeks from today. If I feel my situation improves enough that I am happy I can cancel that visit. With the amount of plaque I am dealing with I'm sure I'll be back.

I am considerably more uncomfortable tonight than last night. It's a crawling, burning sensation and the walk from the truck into the house and up the stairs made me feel old. As long as I'm reclining it's not too bad and I'm sure it will be better tomorrow. It's quite swollen and bruised at the moment.

Another note is my x4labs Starter Edition arrived today in lieu of Monday so I guess I can strap it on as soon as tonight. We'll see, I'm a little tender and even my wife remarked that "that thing looks like a torture device".

Happy Halloween!
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Knight

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Re: One Knight's Xiaflex journey
« Reply #10 on: November 01, 2014, 11:04:17 AM »

I slept well, no issues. This morning I have significant bruising on both sides of my penis which both delights and confuses me. I never felt a needle stick on the right side so I'm not sure how the Xiaflex got there but I do have plaque on that side as well so I was happy to see it taking a chemical beating.

Pain and discomfort is minimal after a good night of rest. Much less discomfort than I expected. It looks worse than it feels. I'm not sure what I will try to do today but I suspect I could do about anything I want excluding having sex of course.

I can't get this x4labs device on and I'm afraid of pulling too hard right now so i'm not going to force it. I'm so shrunk up it won't reach and the thought of inducing semi to get strapped in does not appeal to me in my current condition. I'm still trying to figure out the next step for that regime. It is frustrating.

I am doing moderate stretching but being cautious with that as well. Like I said, it looks so bad I'm afraid of doing something wrong at the moment.

I will update later today.
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Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #11 on: November 01, 2014, 07:29:52 PM »

Knight -

It's ok, and probably advisable, to hold off using the traction device until your swelling has subsided a bit. They're tricky to learn how to use in the best of times. You can still do manual stretching/modeling, though. Be sure to put some decent tension on the scar now, while it's undergoing assault by the collagenase. The point is that we want to remodel the plaque, lengthening it to reduce its constriction which deforms and curves the erection.

You may need to play around with swapping for shorter extension rods in the traction device to get your technique down, then slowly increase length. Remember that once you are strapped in, you can rotate the bottom section of the rods (near the springs) to make them about 1/2" longer for more tension.


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Knight

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Re: One Knight's Xiaflex journey
« Reply #12 on: November 01, 2014, 10:20:50 PM »

Thanks for the confirmation Mending, I just really don't see how traction would be wise at this point. I have considerable bruising all the way from my head into my scrotum and a good deal of swelling inside my body in the pelvic region. I'm doing some moderate stretching through the day but my unit is not very cooperative at the moment. It was easier yesterday, I am a bit sore today.

Perhaps tomorrow will be more productive, I'm confident it will be.

The only thing I regret at this moment is having Peyronies Disease, I do not regret the Xiaflex shots at this point even though it does look to be a long, challenging commitment with no guarantees. But I haven't seen my bill yet either!  ;D


It's a roller coaster but I'm going to remain positive and fight on.

Thanks for being here. It's good to know i am not alone in what feels like somewhat of an experimental medical treatment. We are all learning together and you've got a good program going. Your advice and testimony are priceless!
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Knight

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Re: One Knight's Xiaflex journey
« Reply #13 on: November 03, 2014, 08:44:31 AM »

Yesterday was uneventful. I was able to do about anything I wanted although I was still quite sore. I still have significant bruising and some swelling but it is getting better. The bruising has moved and seems to be drawing way from the injection sites. I am quite tender, swollen and bruised in the pelvic area which doesn't totally surprise me because I know my plaque runs up inside my body. I am trying to do stretches but I know I'm not doing enough. It just feels counter productive right now, a little painful. I'm doing what I can do but I might need another day to heal before I can really start pulling on my tool.

I have experienced nocturnal erections so I know it still works. It's still leaning left but I'm not all that concerned about that at this point.

In order to use my new x4 Labs traction device I'm going to have to buy some additional accessories. I'm so shrunk up I can't get the thing on. They want like $50.00 for a small piece of plastic for guys in my situation which is ridiculous but it doesn't look like I have any choice but to pay them. I need to talk to them and get this resolved and the part(s) quick shipped today because I am losing precious time here post injection.

Off to work now!
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UrsusMinor

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Re: One Knight's Xiaflex journey
« Reply #14 on: November 04, 2014, 12:18:33 AM »

Hey, Knight--

Sounds like things are going reasonably well. One of the things I have learned from reading your experince is that if you do Xiaflex, it's a good idea to take along a book (who knew there was a big delay while they mixed up the medicine?)

I'm a little surprised that there seems to be so much difference in the bandage/no bandage practice between different docs...
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Knight

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Re: One Knight's Xiaflex journey
« Reply #15 on: November 04, 2014, 07:54:47 AM »

You are correct UrusMinor, I am getting quite familiar with the waiting room. They haven't used a bandage on me yet but per Mending's advice I really like the idea and may suggest it on the next series. Another confusing fact is the timing between the series of shots. They want me back in 6 weeks and I thought most guys went 8 weeks between shots. I'm planning on pushing my next series back at least a couple weeks anyway because they currently have me scheduled for 12/18/2014 and I want to move this back to after the 1st of the year for insurance deductible reasons. I don't want to max out my deductible twice, I probably should have waited until after the 1st to even start but what is done is done.

X4 Labs charged me $65.00 for the mini support piece I need to begin traction. With quick shipping the total was $90.00 for what is nothing more than a piece of plastic that they probably manufacture for pennies. I bought my Starter Edition on EBay so I missed the option to purchase this piece for $30.00 as long as I checked the box while buying the Starter Edition. But the fact is I would have never known that I needed this piece at the time anyway so it would have been the same scenario. Be careful if you are purchasing a traction device and make sure you know exactally what you need before closing the sale. In my opinion these companies are sleazy in the first place and $90.00 for a piece of plastic?

I understand making a profit but this is thievery in my opinion. Shame on you x4 Labs.

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UrsusMinor

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Re: One Knight's Xiaflex journey
« Reply #16 on: November 04, 2014, 09:35:26 PM »

Good tip to everybody on the issue of the deductible. Never even occurred to me!
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Knight

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Re: One Knight's Xiaflex journey
« Reply #17 on: November 04, 2014, 11:13:41 PM »

Yeah, at $28,000.00 just for the medicine I'm probably going to max out my deductible twice due to my unfortunate timing. Funny, go get a prescription and I pay a simple, reasonable co-pay. Somehow I don't think that's going to be the case with Xiaflex.
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Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #18 on: November 05, 2014, 08:47:28 AM »

Knight -

Contact Auxilium Advantage at 800‑743‑2382 about their copay assistance plan. You can get $4000 back ($1000/round) in reimbursements.

Also, if your insurance has prescription copay or coinsurance, they should be covering a large amount of the Xiaflex bill. Mine covers 75%, which leaves me owing a little over $1000 per round. But with the rebate from Auxilium, it ends up costing me only about $300 per shot between the doctor, hospital and drug. Very reasonable, if you ask me. Of course, I already maxed out my $2500 deductible for the year.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #19 on: November 05, 2014, 03:03:44 PM »

That is extremely reasonable all things considered. They told me at the Mayo Clinic that Auxillium Advantage would be sending me forms to fill out in regards to the rebate. I am pretty excited about that, every little bit helps! If I don't see anything within a couple of weeks I will make this call. Thank you very much for the contact information!

Today has been my best day yet post injections. I was able to tear it up in the gym last night so I feel much better about myself today. Still bruised and a little sore in spots but on the mend for sure. My scrotum has been giving me itchy fits off and on today which could be related to my recovery or just the Peyronies up to it's evil side effects again. I think my plaque has been affected some nerves the last couple of years giving me phantom sensations from time to time so it's hard to judge what is really going on but it feels like healing so I'm going with that for now.

I should have everything I need to begin traction therapy tonight and I feel good enough to give it a good try.

I definitely still have a bend to the left but it's hard to tell if it has improved because I haven't experienced much for erections since I got the shots. It's still alive, no question about that, but I'm not really in the mood and it has been apparent in the state of my semi-erections. I haven't encouraged anything in that department up to this point.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #20 on: November 07, 2014, 02:25:54 AM »

Day 6 post injections. Swelling is almost completely gone. I still have 2 deep bruises on either side of the base of my penis up on my body in the pelvic region and my sac is still a faded purple. I feel much better, not so sore anymore.

Tonight was my very first night of traction as I am just now finishing up hour #1. The $90.00 plastic part arrived today and now I discover I don't need it. I was having problems trying to put the device on while so bruised, swollen and beat up. Now that I'm feeling better and my penis is on the mend the traction device wasn't that hard to get on. If I would have been patient and just waited everything would have worked out and I'd be $100.00 richer. I just got nervous because the doctors stressed the importance of me doing my homework for this to be successful and I couldn't even get the thing on because my junk was shrunk up like a frightened turtle. It's all good now, and this isn't so bad. It's going to be a huge commitment, but I'd do almost anything if it promises to be somewhat successful.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #21 on: November 11, 2014, 08:53:34 PM »

11 days after the first series and I still have slight bruising but it is fading away. Looking at things now make it hard to imagined what it looked like even a week ago. I think I've finally got the stretching and traction figured out. It's hard to judge how much is enough and what is too much while doing traction. Judging from what they told me at The Mayo Clinic I'm putting as much pull on it as I can. Traction is  actually going much better than I expected it could.

Sadly, I don't think I see any improvement in curvature at this time. Maybe slightly, but not much. My plaque is still there and still very hard. My Peyroines pain is still present as well.

It's still early. I keep telling myself there is still time and will continue to stretch and do traction. But it will be very depressing to go through this expense and discomfort without results and end up in surgery anyway.

I was hoping to avoid the whole regime of shots but it looks like this is going to continue to be a battle. We fight on.
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NeoV

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Re: One Knight's Xiaflex journey
« Reply #22 on: November 11, 2014, 10:43:34 PM »

Hey Knight thank you so much for giving us these details. The healing process must be a really long and cause a lot of distress, will you be going back in to check in with the guy who gave it to you? I don't really know how quickly Xiaflex works but that does seem odd that the plaque is still hard. Be persistent, maybe more injections is the only way to go? Wish I knew more about it. My thoughts are with you man keep us updated.

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Re: One Knight's Xiaflex journey
« Reply #23 on: November 11, 2014, 10:52:17 PM »

Hang in there buddy.  Shots seem to be the lesser of two evils.  Do you have confidence in Josh's abilities or concern Dr Trost  isn't there to supervise the shots?  Did they inject directly into the plaques and not around them for all shots?  When I was there in the spring Josh did my ultrasound but was very thorough in his approach.  He was the first person to find plaques as the previous 7 doctors seemed worthless.  What I like with Dr Trost is that all his personnel seem to be trained in by him.  Dr Levine had his ultrasound done in a different building by people who didn't know what they were looking for.  I know Dr Trost also mentioned Josh getting trained back in the spring when I saw him and he is also certified on the xiaflex website.  I still want to get the shots but personal stuff has made recent things difficult.  The recent cold here should keep the swelling down or if all else fails pack your pants with snow.  Your detailed descriptions have been valuable.  Hope things improve for you.
Jesse
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Knight

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Re: One Knight's Xiaflex journey
« Reply #24 on: November 14, 2014, 12:28:21 AM »

Yes, I do realize hope is not lost. It was just disappointing to feel that old familiar plaque and the discomforts they bring me once the swelling went completely down. While I was swollen I couldn't find them, or they felt soft. Obviously even Xiaflex isn't a silver bullet when it comes to Peyronies Disease.

I specifically asked Dr. Trost if he was going to inject directly into the plaque and he assured me with no hesitation that he was. I did not watch what was going on but it certainly felt like he drove the needle directly into the plaque a couple of times. I did not specifically ask Josh the same question for the injection on day 2 but I assume him and Dr. Trost must have a protocol for my case and they must have discussed and agreed on a game plan. But in 100% fair disclosure I did read in my patient portal that they had injected the Xiaflex "adjacent too" and not "directly into" the plaque. Now I have no idea who writes up the patient portal but I assume it was a nurse, not Dr. Trost or Josh, so who knows if she just used inaccurate wording or if it's true and that was the procedure. For all I know they did both, directly into and adjacent too. I will ask more questions when I go back for round 2 but I think I just have to assume these guys know what they are doing at some point. This is so new that I'm sure everyone is still learning. I try to remind myself that any doctor working at Mayo Clinic has to be pretty good or they wouldn't be there in the first place.

The one thing Dr. Trost STRESSED was my homework of stretching and traction were very critical for optimum results. I think I may have been a bit too aggressive with traction last night as I am a little sore today. I can feel it across the head where it gets strapped in and right next to my most prominent plaque in 2 locations where it feels like i probably stretched it right to it's very limit and then a bit beyond so I'm going a little easier tonight. Just a gentle pull this evening. Getting this routine dialed in is going to be a process.
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NeoV

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Re: One Knight's Xiaflex journey
« Reply #25 on: November 14, 2014, 01:09:59 AM »

Funny how traction and manual stretching exercises are stressed to the max and included in the training manual so long as it's a part of a $28,000 drug. Why not just teach this stuff before hand?

I don't mean to bring any negativity to your thread, just interesting, and I do understand that Xiaflex and traction/stretching should be synergistic. I really hope you can break apart some of the plaque still. Are you going back in for some kind of check-up and re-evaluation?

Knight

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Re: One Knight's Xiaflex journey
« Reply #26 on: November 15, 2014, 01:51:50 AM »

I agree NeoV. But the theory behind the practice does seem logical. It makes sense to use these physical forces to help break down the plaque while the proteins the plaque consists of are hopefully being dissolved by the Xiaflex. In theory it sounds good and appears to be successful for many. I hope it will be for me as well.

Don't worry about negativity, our entire condition IS a pretty negative situation no matter how you look at it. It's just a part of our reality these days.

I did try the VED several times before going this route but always had issues with it. I've not tried traction before this but I can already tell this could cause similar issues I faced with the VED. Whenever I put a "pull" or "stress" on my plaques the tissues adjacent to the plaque become very irritated, almost like they are tearing. It's hard to judge if I'm breaking down plaque or hurting myself worse. Like I was just mentioning to Old Man, we don't have a manual for this condition. After thousands of years we are still looking for the perfect treatment and everything is very hit or miss depending on the individual. I'm betting 5 years from now, assuming Xiaflex continues to show promise, that the entire protocol and treatment plan will look much different than it does today. We will probably look back and wonder what we were thinking when we were doing whatever it is we are doing.

I hope too figure out something so I can be part of the solution for the next guy.

We talked about re-evaluating after all the series were complete but I don't know if I will go through with it or not. I'm not fond of injections, especially in the penis so if I can avoid it I think I will. My goal is to improve my shape as much as possible but more importantly rid myself of the pain I live with 24/7. I guess I would like to see the numbers when it's all over with but being pain free and functionality are my main concerns.
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NeoV

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Re: One Knight's Xiaflex journey
« Reply #27 on: November 15, 2014, 04:46:30 AM »

Agree with you on all fronts there. Though damn Peyronies is really a hard thing to "cure" as is diabetes and other more difficult conditions. Be careful with the traction but keep it up. I imagine healing from the shot and enzyme activity is gonna take a long time.

Have you tried ALC or ALA for the pain? Both seem to be helpful in that regard. I have constant discomfort and hoping high dosage of ALC will help. I really hope things improve.

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Re: One Knight's Xiaflex journey
« Reply #28 on: November 15, 2014, 03:49:02 PM »

I just received my first invoice from Mayo Clinic for the 1st round of Xiaflex injections.

$14,737.36

I almost fell over.

$404.48 for the physical act of performing each injection (x2) at $6,964.20 a syringe full (x2). I knew this was going to be stupid expensive but this is like twice as much as I expected to pay. Everything I read said that for the complete series the total cost of the Xiaflex would be $28,000.00. At the current rate of what Mayo is charging me the cost will be almost $60,000.00.

I haven't heard from my insurance carrier yet but I hope they can make a stand against this. I don't know what I'm going to do about scheduling the second round. I need to think this over but it seems Mayo is really out of line with their pricing here. This seems like preying on a patient (or victim). What could be done about this? Am I being unreasonable?
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Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #29 on: November 16, 2014, 08:16:27 PM »

The procedure price should be covered at whatever your copay rate is (60-80% is typical), once you've run through the deductible. The $6,964 drug price will be reduced by the allowable insurance amount, then covered at a similar rate (assuming you have decent prescription coverage). I got the same kind of bills, and it ends up costing me roughly $1750 per round of two shots, for a total of ~$7k. The Auxilium advantage program should cover 4 x $1k of that, for $4k, leaving me with an outlay of about $3k for 8 shots. All things considered, I think that's pretty reasonable.

Mending
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Knight

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Re: One Knight's Xiaflex journey
« Reply #30 on: November 17, 2014, 01:08:35 AM »

Mending,

You are always there to talk me off my ledge and get me back on my square. Thank you! When I opened the envelope, saw the numbers and started doing the math my emotions started racing. I have settled down since then and I realize i have to wait for this to run through the system to get the finale figures. The games these institutions and insurance carriers play is baffling to me. I guess I will never be smart enough to understand why they just can't call a spade a spade when it comes to realistic, logical pricing. I'm not saying it can't or shouldn't be expensive but I think it should be more consistent from case to case or location to location. And don't even get me started on "In Network" and "Out of Network" provider rates...drives me crazy.

Health care costs on the back side of 50 have really become an issue in our family as I'm sure it must be for many others. My max out of pocket for a year is $6000.00 In Network or $9000.00 a year Out of Network for the family. $9000.00 per year works out to be about $750.00 per month. That's a good chunk of money. Other than Peyronies I'm in excellent shape and have never needed a doctor but 10 years ago my wife began struggling with migraines, Fibromyaliga and seizures. It has been emotional, life changing, exhausting, frustrating and EXPENSIVE. So I'm a little sensitive when it comes to medical expenses.
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UrsusMinor

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Re: One Knight's Xiaflex journey
« Reply #31 on: November 23, 2014, 03:59:32 AM »

We need a private health care system in America! Well, until people get old and costly. Then the taxpayers should pick up the tab...

I had a friend on Kaiser who developed prostate cancer. When he enquired about proton-beam therapy, Kaiser informed him that they wouldn;t pay for it becasue it was still "experimental."

Experimental, though Medicare has been paying for it for decades.

It all has to do with age. If you are young, then the health insurance industry defends their rights to make a profit off you.

If you're old, however, they'd like to transfer you to the government.

Hmm. I wonder who set up this system...?
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Knight

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Re: One Knight's Xiaflex journey
« Reply #32 on: December 03, 2014, 08:36:24 PM »

Mending, you were right again, in fact you nailed it. For the first round (2 shots) I owe exactally $1752.08. If I can get hooked up with The Auxillum Advantage program I should be about $3k out of pocket on the 4 series of shots. I thought Mayo Clinic said that Auxillum would contact me but since I haven't heard anything I should probably reach out to them. I know you left the phone number earlier in this thread.

Since the cost will be reasonable, considering what it could be, I will most likely continue for another round or more.  I don't think I have seen any positive benefit from round 1, and in fact I could actually be a little worse than when I started. My Peyronies does NOT seem to respond well to traction or the VED. Both seem to cause inflammation which in my mind could be leading to more scaring.

In all fairness and full disclosure I haven't used either the VED or traction in the last week due to a death of someone close in my family. There just hasn't been the required privacy available and it didn't even seem like that major of a priority with the loss we have been dealing with. So my physical therapy hasn't been consistent, but I don't think it would have mattered. I just don't think Xiaflex did anything for me in round 1 but since my coverage is good I'm willing to keep trying.
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Litani

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Re: One Knight's Xiaflex journey
« Reply #33 on: December 11, 2014, 11:18:00 AM »

Hi knight,

I just received my approval for xiaflex.  Similar to you I have calcified plaque so I have been following this post.  Do you think you have seen no improvements due to calcification?  So far, I have not found posts with xiaflex improvements on a calcified plaque
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Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

Knight

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Re: One Knight's Xiaflex journey
« Reply #34 on: December 14, 2014, 04:22:49 PM »

I will receive round two, injections 3 & 4, this coming Thursday and Friday. I have not noticed any improvement after the first round. I had lots of bruising which lingered a couple of weeks but for whatever reason I saw little change in my curve(s).  I remain hopefully and positive that round two will begin the correction!

I have been very deciplined with the stretching but traction has been an off and on learning experience for me. I don't know if the calcification is the issue or not but I'm sure it plays a role. Others with calcification have experienced positive results so I don't believe it means guys like us don't have a chance.

Best of luck.

Please keep us posted on your experience.
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james1947

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Re: One Knight's Xiaflex journey
« Reply #35 on: December 14, 2014, 05:50:57 PM »

Thanks for the update Knight.
Wish you second round with good results.

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

Caesar

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Re: One Knight's Xiaflex journey
« Reply #36 on: December 15, 2014, 06:31:06 AM »

Hi Knight, I just wanted to send you all my support and good luck wishes from here.
Reading you gives me courage to confront this disease and keep fighting.

I'll think of you next thursday mate.
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Age: 37
First onset: January 2014 (lasted 16 months) | Treatment: Q10 (ubiquinol) + Acetyl-L-Carnitine | Result: 15º curvature to right and narrowing at the base.
Second onset: January 2020.

dfurman

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Re: One Knight's Xiaflex journey
« Reply #37 on: December 15, 2014, 01:56:13 PM »

 Knight,

Hang in there buddy I just completed my 2nd round last Saturday.

I am pretty sure you will see good results eventually.

I am trying to go about my daily life with positive attitude and not focus on this issue too much.
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Successful plication surgery by Dr Peter Stahl Dec 2018. Peyronies since Feb 2007. Tried Pentox, Propolis, L-Arginine, Xiaflex (10 shots), PRP Shot, VED & Traction with no significant improvement.

user of no names

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Re: One Knight's Xiaflex journey
« Reply #38 on: December 16, 2014, 12:14:26 AM »

Glad to see you are continuing with the injections.  If anything peyronies is a practice in patience.  There are no quick fixes and xiaflex seems to be the best option now.  I would ask Dr Trost or his assistant to make sure they inject the scar and not the surrounding site as this can make a big difference.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #39 on: December 17, 2014, 11:39:08 PM »

Indeed user of no names. Dr. Trost, his assistant and I will have more detailed conversations again tomorrow. But in the end they are very confident doctors and when the back of my head hits that pillow I have no option but to trust they are aiming for and hitting the target correctly. The instructions from Auxillum for correctly injecting Xiaflex are clearly posted on the internet so it's not a secret. It does however sound like it would take great skill to hit and administer the chemical correctly.

Thank you for the support gentlemen!

I will report back with all the details.
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user of no names

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Re: One Knight's Xiaflex journey
« Reply #40 on: December 18, 2014, 12:31:05 AM »

I believe he is a good dr but don't agree on how he explained xiaflex was used.  He said it acts as a chemical knife.  The injections are done above and below the plaque in healthy tissue but not in it.  This allows the tissue around it to expand where the plaque cannot.  He said if you injected into the plaque then something has to replace it like what is done in excision and grafting surgery.  I told him about the dr manual I found online but he said as a member of the clinical trials they didn't inject directly into it.  He also said the chance of peyronies getting worse or penile fracture happening are higher than what was told from the trials.  This was part of my hesitation in going through with it.  Dr Trost is a very sincere and straight forward talker but this technique concerns me.  I hope everything works out.
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yyy

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Re: One Knight's Xiaflex journey
« Reply #41 on: December 18, 2014, 01:31:46 AM »

From my knowledge everyone injects into the plaque, that is the part to be dissolved. I agree he has a strange approach
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Knight

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Re: One Knight's Xiaflex journey
« Reply #42 on: December 18, 2014, 03:57:31 PM »

User of no names,

With all due respect we have already had this conversation. I specifically asked Dr. Trost if he was injecting directly into the plaque and he told me he definitely was. Please be careful of what you are posting because he never said anything like that to me and I did specifically ask him after you raised these concerns. I will talk to him again today, I'm in the waiting room now.

Knight
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yyy

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Re: One Knight's Xiaflex journey
« Reply #43 on: December 18, 2014, 06:03:54 PM »

The things said don't make any sense at all. He obviously has to inject inside the plaque, and injecting outside can lead to issues as well as no improvements
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Knight

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Re: One Knight's Xiaflex journey
« Reply #44 on: December 19, 2014, 12:24:12 AM »

Again, my wait in the waiting room was almost exactly 1 hour as the Xiaflex was mixed. Dr. Trost and I had a nice, long conversation about how things were going for me and what was new on the Xiaflex front. I told him that as far as I could tell I had no improvement after round 1 and I joked that he was going to end up cutting me and fitting me with bionic parts before this was all over to which he confidently assured me that wasn't going to happen. He asked specific questions about my physical therapy of stretching and traction homework and I told him that I felt i had gone above and beyond on the stretching but that traction had been a challenge with the learning curve and finding a spot in an already too busy life schedule to fit in consistently. I also explained that I had so much bruising and swelling after round 1 that traction seemed all but impossible for at least a week. Dr. Trost again strongly stressed the importance of traction especially the first few days but even longer. Mayo Clinic is now 3rd in the USA for numbers treated, they have now treated 180 men with Xiaflex to this point in time.

Dr. Trost then gave me another physical examination to locate my plaque and feel what was going on. He said that my plaque was very large, considerably larger than most and again noted it was a very calcified state. It's hard as bone. Everyone is still learning about how Xiaflex reacts to calcified plaque because guys like myself were excluded from the testing cycles. He said from what he has personally seen Xiaflex didn't work as well on calcified plaque but that in some cases for unknown specific reasons it had been somewhat successful. He also said that in the beginning they quit treatments if the first round or two were completely unsuccessful but now that theory is changing. He told me of a patient who experienced no improvement through the first 3 rounds and then saw an 80% improvement in the 4th round.

Dr. Trost said he has been experimenting with breaking the calcified plaque up with a needle as much as possible right before injecting the target with Xiaflex. It sounded about as scary as anything I could possibly imagine but I could easily understand the concept and see were theoretically it just might work. I asked about the possibility of this procedure creating more scar tissue and he admitted it was a possibility but from his experience the results had been more positive than negative to this point. I figured I have nothing to lose and agreed to give it a try.

He proceeded to numb me up and literally tenderize the base of my penis with a large, hard needle. He had that plague between his thumb and index finger with one hand while jabbing, stabbing and picking at it with the large hard needle in his other hand. He seemed very thrilled at how he was able to break it apart and I could hear it clicking and clacking as he busted up the clump. I don't know how many times he stabbed it but the procedure lasting for a good 10 minutes. I was so numb I hardly felt anything but the sound was enough to make feel like whimpering. I held it together quite nicely but I did tell him there was going to be a puddle of sweat on the table once I got up off from it. Once he was confident that he had broken up my plaque thoroughly and cleaned up the blood he injected the Xiaflex directly into the the now softened plague. Again, he injected the Xiaflex directly into the plaque. There was no question about it. He couldn't have hit the plaque anymore dead center. No worries user of no names!

Due to all the penile torture he did wrap me this time. He actually wrapped it quite tight and as Mending has previously stated this works tremendously to keep swelling and bruising down. It is remarkable! I am firmly a fan of this move and will request it from here to the end. I had a 2 hour drive home and had to immediately leave again for a rehearsal (I am a musician). Dr. Trost said it wouldn't be much of a problem and he was right, I got through it rather easily all things considered. Now that I am home I have removed the dressing and I currently doing traction as I type. I went through a lot more physical trauma today than I did in round 1 but the physical appearance of my penis now 6 or 7 hours post tenderising and Xiaflex injection is completely different than round 1. Whereas I bruised severely after round 1 so far I have almost no bruising tonight. I can tell he hit me pretty good with that needle but the massive bruising is nowhere to be found.

Hopefully I'm in this good of shape in the morning. Tomorrow will be another early start and long day. Tomorrow afternoon I will receive injection #4.

Good night!
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james1947

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Re: One Knight's Xiaflex journey
« Reply #45 on: December 19, 2014, 12:37:12 AM »

Again thanks for the update.
What you are describing with the needle reminds me the Leriche technique of breaking up the plaque.
Wish you good results, many of us are waiting to see how things are going with Xiaflex and calcified or very calcified plaques. :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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yyy

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Re: One Knight's Xiaflex journey
« Reply #46 on: December 19, 2014, 03:23:09 AM »

Can you all tell when a patient should start with modeling? The day after is too soon? And when can you start traction? Thanks
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Mending the Bend

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Re: One Knight's Xiaflex journey
« Reply #47 on: December 20, 2014, 09:35:12 AM »

You should start with modeling either later the same day or the next day, and do it a few times each day. If swelling or bruising is severe, then traction may have to wait until you're able to secure the device.
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Knight

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Re: One Knight's Xiaflex journey
« Reply #48 on: December 20, 2014, 03:28:49 PM »

Correct! And I am not taking any chances with this round. Last night I did about 2 more hours of traction and another 45 minutes this morning. I am obsessed with stretching and giving it a good 30 second pull every chance I get. I pull straight out for awhile and then down and the opposite direction of my most prominent bend. I pull so hard I have a hard time keeping the head of my penis in my hand as it wants to slip between my thumb and my first finger. I sometimes worry more about how hard I am squeezing it to hang than the stretch itself. Point is these are good strong stretches. I remember Mending telling me he knows he is doing it right when his arm is shaking. Same with traction. Sometimes I have to back off for a second for some relieve but then give the screws a few more turns to stretch it back out. I never allow myself to feel pain but welcome some reasonable discomfort. I think I'm getting this part of the system figured out and I'm all in and hitting it hard. My doctor really stressed that the first few days were critical. Reform that plaque while the Xiaflex has it in a broken down state. That's how I understand it. Studies shows those who were disciplined with their stretching were more likely to achieve greater correction. Obviously common sense must be applied.

My fourth injection was just as painful as my 2nd injection. It only makes sense that a shot 24 hours after the first shot would hurt more but the difference in my case both times has been significant. None the less if I can get through it anyone can get through it because as I have stated I am not typically good with needles. My bruising after round 2 is 1/10 what it was after round 1. The bruising this time stayed in the shaft of the penis and did spread through my entire scrotum and into my body above the penis like it did last time. And remember i went through a lot more trauma this round than the first round. I attribute this to the wrapping. Dr. Trost agreed to wrap me again as long as I promised to not let this interfere with immediate and consistent stretching. He said his worry was that guys would leave the dressing on and avoid the stretching. I assured him I would take care of business and I have.

I'm a little swollen today but the bruising hasn't gotten any worse. I cannot stress enough what a difference the wrap seems to have made. I was able to drive 2 hours and return to work for another 5 hours after the shot last night. I did get uncomfortable at times but my point is this hasn't been a crippling experience for me. I am able to continue a very busy life while going through the treatments. I am hopeful that this round will yield some positive results.

Stay strong my friends. Do not let Peyronies control your lives.

Get up, keep living, keep fighting!

Peace!
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Knight

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Re: One Knight's Xiaflex journey
« Reply #49 on: December 21, 2014, 01:12:41 AM »

What you are describing with the needle reminds me the Leriche technique of breaking up the plaque.

James

I think you nailed it James, that's exactally what he did. It is exciting to see what the results will be using this method on the calcified plaque together with Xiaflex. I think we are pretty much in more uncharted waters here.
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