Latest Appt. with Urologist

Anything goes when it comes to ED.
rglassva
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Joined: Wed Apr 28, 2010 9:00 am
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Latest Appt. with Urologist

Postby rglassva » Wed Dec 11, 2013 9:09 am

So my issues are. . . severe venous leakage, bottleneck peyronies (around the base of the shaft), low testosterone, and of course, e.d. Saw doc this a.m. and after 3 months of using androgel 1.62% (one pump per shoulder) my T- level has gone from 188 (YIKES) to 275 - still quite low - increasing to two pumps per shoulder until March. Xiaflex just approved by FDA last week for treatment for peyronies - he thinks this will help a lot and maybe even give me an extra millimeter or two in length - who wouldn't want that! I am now in the queue to see if/when Anthem will cover cost - fingers crossed I can start that soon (doc does three or four rounds of injections into the plaque itself - spaced six-weeks apart). There is also a new pill that should become available first of the year (Stendra) that, according to doc, works 4 times better than Viagra with fewer side effects! So I'm in line for some samples of that if/when they become available. No other breakthroughs - will continue to pump almost daily and use trimix when the occasion calls for it although I only get mediocre results with it. Still thinking implant will be the ultimate "cure" but trying every other avenue first. Glad to be able to 'vent' here on FT - any comments welcomed. Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

dtwarren1942
Posts: 1905
Joined: Wed Oct 27, 2010 7:58 pm
Location: Jersey Shore

Re: Latest Appt. with Urologist

Postby dtwarren1942 » Wed Dec 11, 2013 5:30 pm

Hey rglassva!

I read the article reporting the FDA approval of Xiaflax. The article mentioned that the cost is about $3,200 a shot!! Hope you get coverage.
Age 81
Diabetic
Pumping
Started Trimix injections 8/'11

Flavio
Posts: 889
Joined: Wed May 19, 2010 4:56 am

Re: Latest Appt. with Urologist

Postby Flavio » Thu Dec 12, 2013 9:48 am

I never heard of Xiaflax. How does it work exactly?

My penis bends a little to the left but I believe it's not PD - it's not painful and doesn't prevent me from having intercourse.
Age 40. Psychogenic ED for over 20 years. Current regimen: Udenafil 200 mg, oral phentolamine mesylate 40 mg, Seredyn.

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
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Re: Latest Appt. with Urologist

Postby rglassva » Thu Dec 12, 2013 2:04 pm

Flavio - doc injects xiaflex directly into the plaque wherever it is in the shaft. . . . supposed to 'dissolve' it over time - I think there are three rounds of injections spaced 6 weeks apart. Not sure what the qualifications are for getting it but check with your uro. Good luck - I'll keep everyone updated if it actually happens.

Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
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Re: Latest Appt. with Urologist - Xiaflex

Postby rglassva » Fri Jan 31, 2014 11:09 am

got a letter in the mail yesterday from my uro's office - form I need to fill out to check on Xiaflex and whether insurance will cover. . . said I should know in two weeks - fingers crossed!
Xiaflex is the latest drug approved by FDA for the treatment of peyronies disease. Doc injects into the plaque with the goal being that it will dissolve it, minimizing or eliminating blockage and curvature. Will keep you updated as I am.
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
Contact:

Xiaflex update

Postby rglassva » Fri Apr 25, 2014 12:20 pm

So turns out my insurance will cover part of the treatment - according to doc it costs like $40,000!!!!! Insurance will cover all but $3000. Hefty price to pay to get rid of some plaque in the little guy - checking with doc to see how much it will really help to go through the 8 rounds (I think) of injections. Anyone else looking into the procedure to get rid of peyronies?
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
Contact:

Xiaflex Update

Postby rglassva » Fri Jul 25, 2014 1:40 pm

Went for my first round (of 4) of Xiaflex injections two weeks ago - supposed to help "dissolve" some of the plaque causing the bottleneck peyronies - hoping that getting rid of the plaque will also get rid of some venous leakage. Went Monday and Tuesday - quick injections - about same as trimix - only a little bruising - now have to stretch the little guy at least three times a day for 30 seconds each time. No sexual activity for two weeks after injections - now that that is over I can 'have at it' - and although I'm trying not to get my hopes up, I do believe there might be a tiny bit of improvement, I injected trimix after the two weeks and first of all, the needle went in much more easily in an area that had been hard to get through (plaque, I'm guessing) and although I've never gotten a nice firm erection with trimix, I do think the results were a little better. Six weeks between rounds of injections - hoping for even more/better results after round two - until then, more stretching. Will keep everyone posted on the progress. Rick
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty

rglassva
Posts: 199
Joined: Wed Apr 28, 2010 9:00 am
Contact:

Xiaflex - Round 2

Postby rglassva » Thu Aug 21, 2014 1:09 pm

Went for round two Monday/Tuesday of this week. . . .a little sorer and a lot more bruising this time. Start the 3x daily stretching tomorrow and still "hands off" for two weeks. I asked doc what I should expect/notice from an erection standpoint after these two rounds - I think I heard the words "fuller" and maybe even "longer" - from his mouth to my penis - well, sorta. :lol:
rhabdomyosarcoma - 1975
chemo/radiation
e.d. since puberty


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