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Author Topic: Started my first cycle of Xiaflex on 7/8/2019  (Read 1180 times)

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Junior

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Started my first cycle of Xiaflex on 7/8/2019
« on: July 13, 2019, 04:59:30 PM »

Hey Everyone,

I am 66 years old with low free testosterone, Erectile Dysfunction, Peyronies Disease & discovered that I had Prostate Cancer on 2/15/2019. On a search to find a cure for Peyronies Disease, I found out I had prostate cancer & low free T. I am going Men's Health Boston and my experience there has been great so far.

I had my prostate removed on 4/1/2019 & now my PSA is <.03. My doctor  is an expert in this field concerning cancer & testosterone. He feels a combination of TRT & Xiaflex will treat my Peyronies Disease

I did my 1st cycle with Xiaflex this week, 1st shot on Monday 7/8,2nd shot on 7/10, & finally modeling on the 7/11. The shot was not that bad  when inserted into my penis & then a little discomfort when giving is into the plaque. On 7/10 is was about the same a little discomfort, but again for a short amount of time. The next day they  did modeling. The days of the shots I left there with my penis wrapped with gauge & I was told to remove the gauge after an hour. I have had no swelling & bruising so far.  The day of the modeling seem to consist of stretching various ways & pressing on the lump.

I was told to stretch my penis 3 times a day & no sex or mastubation for 4 weeks after the 2nd shot.

Forgot to mention that my Peyronies Disease was around 40 degrees las October 2018 & in June 2019 I was at 70 degrees.


I'll keep you posted Thanks!

Junior

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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

Fernapal

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #1 on: July 18, 2019, 06:42:09 PM »

Good luck I had my fourth shot today. Black and blue..
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59 years old, onset of Peyronies’s two years ago, 20 degrees of curvature to the left, second round of Xiaflex.

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #2 on: July 19, 2019, 04:21:54 PM »

Thanks, I hope to get some improvement. Junior No swelling or black & blue yet
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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #3 on: August 29, 2019, 05:06:19 PM »

Today I finished my 2nd cycle of Xiaflex. Monday the PA gave me my 1st shot in one area & Wednesday he gave me the second shot into another area of plaque. This time some bruising mostly from the 2nd shot. The shots were bearable.

Today was the modeling, that was definitely more intense than last time, I almost told him to stop. He told me that I don’t have to be mucho, it was definitely not what I expected compared to what he did the 1st cycle.

I asked about RestoreX, so today I ordered the device.

I’m also being treated with testosterone, bloodwork showed my total T was 560, I haven’t got my free T yet.


I’ll Keep you all posted!

Junior

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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

samsung

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #4 on: August 29, 2019, 05:39:09 PM »

Good luck Junior. I am in process of getting going with Xiaflex myself. Probably about a month from now is my guess. Lots of paperwork first for insurance.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #5 on: August 29, 2019, 07:37:15 PM »

Hey Samsung,

The first doctor originally told me that it wasn't covered by Medicare & that it was going to cost me around $24K; come to find out his practice did not want to participate in the buy & bill program. This all means he didn't want to buy it & get stuck if Medicare decided not to pay.

MHB processed all the paperwork, I think through Endo & Medicare to it get approved for 4 cycles.

1st cycle 1st shot
MHB charged $6,014
Medicare-approved amount $4,364.65
Medicare paid $3,421.88
You may be billed $872.93 paid by my supplement

1st cycle 2nd shot
MHB charged $6,014
Medicare-approved amount $4,364.65
Medicare paid $3,421.88
You may be billed $872.93 paid by my supplement

This was all approved in January or February 2019 before I found out I had prostate cancer.

Good luck to you & be an advocate for yourself!

Junior
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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

Hawk

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #6 on: September 10, 2019, 09:02:24 AM »

Junior,

I am very confused as to why you would be going through Xiaflex.  Your signature line says that you have had a prostatectomy.  This pretty much establishes the likelihood that you are over 50, that you are going to have ongoing Erectile Dysfunction issues and you need something that will both assure a deformity correction and solve your certain Erectile Dysfunction issues.  The only thing that fits all of that is an implant.  It seems brutal to go through the commitment in time, money, and discomfort for something that will not address Erectile Dysfunction and that has only a slight to a very modest chance of giving you a straight penis.  Am I missing something?
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #7 on: September 16, 2019, 01:53:53 PM »

Hi hawk, beginning to think the Xiaflex is not doing anything. I was hoping that my testosterone therapy was going to help with my Erectile Dysfunction, I take 140mg weekly.

I did put a call into Dr. Eid last week waiting to hear back.  I also started using the RestoreX traction on 9/5.

Lastly i’m Dragging my feet, I think about going to Boston, Dr Munarriz, but he is excellent, but heard no bedside manner & doesn’t like to be questioned.

At MHB the head dr only does 2 or 3 per month & only does AMS Ambicor no reservoir.

I’ll keep you posted!

Thanks

junior
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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

peypey21

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #8 on: September 16, 2019, 02:07:10 PM »

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Hawk

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #9 on: September 17, 2019, 09:35:59 AM »

Junior,

If you are considering a consultation with Dr. Eid (either in person or video or phone conference) you should post in the implant section.  It is very rare for Xiaflex to help with Erectile Dysfunction.  Do you have a significant bend or deformity?

Also, if you had a prostatectomy and have significant Erectile Dysfunction, testosterone is not going to help and it feeds any residual prostate cancer in your body.  Your solutions do not seem to fit your medical profile in the least.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #10 on: September 17, 2019, 08:42:19 PM »

In June my Peyronies Disease  measured 70 degrees, my RALP made it worse from 40 degrees in Oct 2018.

Pertaining to my testosterone level it is his opinion that men who get Peyronies Disease probably have low-T or have had pelvic surgery (RALP).

Dr Morgentaler has written books & studies pertaining to testosterone & cancer. He has stated that there is no correlation that cancer will not worsen TRT therapy.

https://andrologysociety.org/getattachment/1bd9292d-121b-4d12-89fd-76dccc22dc1c/Chapter-41.aspx

videos
https://www.bing.com/videos/search?q=prostate+cancer+testosterone+replacement+morgentaler&qpvt=prostate+cancer+testosterone+replacement+morgentaler&FORM=VDRE
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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle

Hawk

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #11 on: September 18, 2019, 09:58:01 AM »

Junior, Is Dr. Morgantaler your doctor or do you go to another doctor who subscribes to his views on T /PCa ?
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Junior

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Re: Started my first cycle of Xiaflex on 7/8/2019
« Reply #12 on: September 18, 2019, 06:23:09 PM »

I go to Dr. Morgentaler at Men’s Health Boston. He is the Dr. that did my biopsy & found my cancer. He then had me go to Beth Israel Deaconess Medical Center to do the Ralp.

See implants!

Junior
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Erectile Dysfunction - born 1952   /Peyronies Disease Onset 7/2018 at 65 / Prostatectomy 4/1/2019 / Low - T testosterone therapy June 2019 / June 2019 Peyronies Disease at 70 degrees - July 2019 started Xiaflex 1st cycle
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