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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Getting Xiaflex on the 12th of August.  (Read 1885 times)

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Perceptible Curve

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Getting Xiaflex on the 12th of August.
« on: August 02, 2018, 09:53:37 PM »

Finally after more than two month wait Xiaflex medication sent to my Urologist. Now need to get  pre-op Blood work, chest X-rays and twelve lead EKG next week She will start the procedure. Very exited to have my curve corrected.

43 degree upward left curve.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #1 on: August 03, 2018, 02:10:37 AM »

Welcome to the club.  Hope everything goes smooth.  I'm close to my second injection on Monday.
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #2 on: August 03, 2018, 03:10:54 AM »

Thanks Trav. How many degrees did your go down if any?
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #3 on: August 03, 2018, 03:17:43 AM »

Never mind, stupid question. I was thinking second cycle not second shot from first cycle. Also why can't I delete my own reply's?
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #4 on: August 03, 2018, 03:46:08 AM »

Haha no worries.  Not sure why you can't delete.  I'm in the "bruised and sore" phase at the moment
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TonySa

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Re: Getting Xiaflex on the 12th of August.
« Reply #5 on: August 03, 2018, 02:43:46 PM »

I think you can modify and just indicate “deleted” or something else.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #6 on: August 03, 2018, 06:00:31 PM »

Thanks Sanchez.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

lmn25

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Re: Getting Xiaflex on the 12th of August.
« Reply #7 on: August 13, 2018, 09:06:44 PM »

How did your first injection go?
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Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #8 on: August 14, 2018, 05:45:43 AM »

The injection date was moved up to today (8-14) at 1300. I will report back after. And thanks for asking.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #9 on: August 14, 2018, 08:15:08 PM »

After seven hours in hospital, Xiaflex is done. About an hour or more in Operating Room alone. As she promised I was sedated. Here is the kicker, received BOTH SHOTS at once and your scar was molded under anesthesia, sites of injection has glue placed on the skin.Taken verbatim from hospital visit summary.  Yes I am aware that this is not the usual protocol. I gathered she done shots before, guess I should have asked point blank and not read into it. No pain still after~5 hours, hurt after coming out of sedation but they gave more pain killer shots. At this point I understand this was not done as directed from Xiaflex makers. But on other hand it might work better, will give it some time and I will give benefit of the doubt barring anything negative  happens.  I have pics but need to be sure they will be posted within the proper part of the forum.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #10 on: August 14, 2018, 08:51:15 PM »

Pics will follow when I learn to make them smaller in data to upload on this forum.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #11 on: August 15, 2018, 01:00:42 AM »

wow, both shots at once!  No wonder you were in the hospital.  That's intense!
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

JohnR

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Re: Getting Xiaflex on the 12th of August.
« Reply #12 on: August 15, 2018, 06:22:35 PM »

https://www.xiaflexrems.com/XiaflexUI/rems/videos/training/training.html

You might want to watch this. The actual protocol for Xiaflex.
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50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...Erectile Dysfunction issues, major anxiety issues now.

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #13 on: August 15, 2018, 06:50:20 PM »

I know this going in and doctor gave no indication of doing it this way. And I could do nothing while sedated on OR table. At this time whats done is done. Now I will take a wait and see approach this might work better who knows. I will be  on this forum with updates as they happen.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TonySa

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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #15 on: August 16, 2018, 04:38:33 AM »

Whoa bro that is distressing to say the least.  I sincerely hope it rectifies itself and you get back to "normal".  Keep us updated man.  I am here for you
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #16 on: August 18, 2018, 06:49:34 PM »

Thanks Trav, I too am hoping for a good outcome. And  I hope yours improves as well.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #17 on: August 25, 2018, 01:00:07 PM »

How are you doing?  I'm curious how sore you are after two injections at the same time
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

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Re: Getting Xiaflex on the 12th of August.
« Reply #18 on: August 25, 2018, 01:05:14 PM »

Never mind I clicked on the thread.  Sorry to hear about the numbness.  I'm glad to hear you got a second opinion.  I would've had a heart attack knowing I was returning to the first dr
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Perceptible Curve

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Re: Getting Xiaflex on the 12th of August.
« Reply #19 on: August 26, 2018, 02:49:40 AM »

Thanks Trav. Healing up but have a few issues, thanks for asking.
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Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.
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