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Author Topic: My Xiaflex Journey  (Read 4960 times)

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TDix

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Re: My Xiaflex Journey
« Reply #150 on: January 08, 2019, 12:40:00 PM »

So it now has been made clear my journey with Xiaflex has come to an end.  I am too calcified for further injections.  I hope my experience at the very least presents others with valuable information to not only make their own decisions with regards to Xiaflex, but also opens up a dialog that they can present to their prospective urologists that perform the procedure.  I wouldn't wish what happened to me on any of you, and I hope others truly benefit from the treatment.  Just was not in the cards for me.  I will be opening another thread in the surgery section, as I am going forward with that option in March.  You can follow my next chapter in this roller coaster ride over there.  Good luck to all of you!
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45 yrs old, 1.5 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision surgery March 12th with UCI Dr. Faysal Yafi

kingprof

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Re: My Xiaflex Journey
« Reply #151 on: January 08, 2019, 12:44:30 PM »

Thanks TDix, I'm sorry that you have had this difficulty. I hope all goes as well as possible with the surgery. Please do keep us informed.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Currently on 2nd round of xiaflex

tonyode

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Re: My Xiaflex Journey
« Reply #152 on: January 08, 2019, 01:18:48 PM »

King..in regards to your bruising, swelling, this was the one thing my Doc said is the main reason he and others wait a week for the second shots of the rounds. So that the swelling subsides so they don't have difficulty with the injection into the plaque. Not to mention how sore some people still are after the first shots of the rounds. I am schedule for round two in a few weeks. I still can't say if i had improvement or not after the first round. My plaque does seem smaller as well as more malleable. As I mentioned, the second shot of the first round hardly did much at all in terms of bruising and swelling. Probably just lucky.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

kingprof

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Re: My Xiaflex Journey
« Reply #153 on: January 08, 2019, 02:17:59 PM »

Hi Tonyode, I like your Dr.'s approach!  I will definitely ask mine on Thursday for a reprieve after I show him the current state of the equipment. As I said, I can't imagine going right back in at this point. I hope you continue to be lucky with respect to your discomfort, we can all use a little luck in this thing. My first round was not nearly as bad as this one is so far, then again if I get more out of the second round, I'm likely to conclude it was worth it.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Currently on 2nd round of xiaflex

TDix

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Re: My Xiaflex Journey
« Reply #154 on: January 08, 2019, 02:20:49 PM »

I too had my shots a week apart to allow for proper healing.  Of course that only lasted one round but if you feel your body needs a week by all means do it.  I honestly don’t see how they could accurately get in a good shot when you are still swollen
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45 yrs old, 1.5 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision surgery March 12th with UCI Dr. Faysal Yafi

Bubba dawg

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Re: My Xiaflex Journey
« Reply #155 on: January 08, 2019, 02:49:34 PM »

One time after an injection I had a stinging sensation all night. Right where the needle went in. You get several different types of reactions from the meds and injection. Usually well enough by the next injection. Even though it doesn't look or feel like it will. Bruising is a normal part of it
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50s
Peyrones
Plaque and calcium on top
Treated with 5 rounds xiaflex
80% back to normal

tonyode

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Re: My Xiaflex Journey
« Reply #156 on: January 10, 2019, 11:42:41 AM »

Kingprof...here is a real good video from Dr. Khera. Some solid studies and date about different treatments. Towards the second half of the vid, he talks about Xiaflex injections and the spacing of time for injections. The company basically made up the cycles and spacing for shots for each cycle (1-3 days). They had no data to back up why they recommend 1-3 days spacing for each round. Dr. Khera. He even goes as far as saying that doing 1 shot per month over 8 months would have similar results as doing the company cycles. Good video backed up with data.
https://www.youtube.com/watch?v=l8BLsd3QF9o&t=354s

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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

kingprof

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Re: My Xiaflex Journey
« Reply #157 on: January 10, 2019, 12:23:04 PM »

Thanks Tonyode, I'll definitely watch. I had my second shot today and with that 1-3 day spacing they are brutal.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Currently on 2nd round of xiaflex

Bubba dawg

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Re: My Xiaflex Journey
« Reply #158 on: January 11, 2019, 01:00:29 AM »

Whether it works the same or not I like to get  painful things over with asap. Waiting around a week for the 2nd shot would be more brutal for me. But we really dont have to speculate on what way is more effective. We all get the results soon enough. Results are all over the place even doing it 3 days according to post on this forum. Some had good results . Some bad. Some in between. My dick is still not perfectly straight. Still really pulls on my pelvic area during masturbation. I do well having sex in the missionary position only. I will take that until I can afford more injections or see how the calcification is effecting treatment. Just glad i can have sex again. In the beginning the doctor said this would straighten my penis out. I guess he didnt say how straight lol. So I will give him the benefit of a doubt. Still better than the alternative
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50s
Peyrones
Plaque and calcium on top
Treated with 5 rounds xiaflex
80% back to normal

kingprof

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Re: My Xiaflex Journey
« Reply #159 on: January 11, 2019, 11:41:17 AM »

Well guys, just finished round two of Xiaflex. The modeling session today was brutal after yesterday's injection. My uro said a few times that he thought we made real progress this time, we'll see. He may have just been saying that to quiet my yelping. Time to heal up.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Currently on 2nd round of xiaflex

tonyode

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Re: My Xiaflex Journey
« Reply #160 on: January 11, 2019, 02:48:45 PM »

Ice, Ice and Ice for 24-48hrs King. I think that really helped me. Did ur uro wrap up your penis as well? Mine does, fairly tight. He said keep it on at least 24hrs. I kept mine on 36hrs with both shots in first round. I had very little swelling and minimal bruising. I think the combo of ice/cold and the wrap helped with the bruising and swelling quite a bit. Anyway, I have about 3 weeks to round 2. I can't say for sure, but I think the first round helped. When I have an erection, I don't have near the indentation I had previously and it looks as though my curve is better.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

kingprof

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Re: My Xiaflex Journey
« Reply #161 on: January 11, 2019, 04:07:44 PM »

Hey tonyode, yes he wraps me up pretty tightly. Not after the final modeling session, but after both injections. Thanks for that video by the way, very informative.
Glad to hear the first round worked so well for you. I didn't see much improvement at all after round 1, but I'm hopeful this time. I mean, it's nice to see some incremental improvement for purely psychological reasons so that we can walk back in that door for another round, you know?
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Currently on 2nd round of xiaflex

Bubba dawg

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Re: My Xiaflex Journey
« Reply #162 on: January 11, 2019, 07:46:27 PM »

Ya those doctor modeling sessions can make you arch your back. That is when my hematoma happened. A little too much wrenching. I think things went backwards after that. I really think I was completely straight at one point. I should have quit while I was ahead
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50s
Peyrones
Plaque and calcium on top
Treated with 5 rounds xiaflex
80% back to normal
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