My urologist, who was one of the doctors who conducted the clinical studies of Xiaflex, believes it won't work for me because I have calcified plaque as shown by xrays. Has anyone heard anything similar (or contrary)?
Shlomo
If you will read more about the Xiaflex trial, calcified plaques were excluded.
The reason is they wanted the best possible results. I am not saying that it will not help calcified plaques, but the exclusion is pointing in this direction.
James
I had a follow up visit today. My uro did ultrasound an said I have calcification too. He said Xiaflex won't work for me because of that. He said he has to be able to push the needle though the plaque.
This could be the explanation for excluding calcifieds from the clinical studies. Other posts here have suggested it was merely to boost the success rate.
With all the problem injecting to the right place in calcified plaques, I am sure a good doctor can do that.
Same like some not so good doctors were not able to do it correct during the trial.
How Xiaflex will work on calcified plaques, we don't know. Maybe less, but it may still work.
I am just expressing my private opinion and I will say again, a good doctor will find the way to inject correct into the plaque even if it is calcified.
James
He told me just the drug is $3,000 per shot. This does not include his share. He said he would start with 2 shots and see the results. He said it might require 2 more. He told me all this before the ultrasound.
I was also told by a surgeon who has conducted trial injections in the UK Xiaflex is a no no for calcified plaque.
It is not the Xiaflex, but the needles which are too thin for calcified plaque.
Or not the thin needles, just the doctor eagerness to cut is the problem?
To cut, this is where the big money is laying 8)
James
Noticed today upon reviewing the paperwork from my initial and only appointment, hand written at the bottom of page 1, "Ziaflex". I don't know who wrote it, my doctor or his assistant, but I couldn't help thinking, inject it?....you can't even spell it! :o
Good times.
An honest mistake, could happen to anyone. But all the same, I would be very careful of who I allowed anywhere near my bits with a needle.
Quote from: james1947 on January 13, 2014, 05:03:13 PM
Or not the thin needles, just the doctor eagerness to cut is the problem?
To cut, this is where the big money is laying 8)
James
To be fair James that is not the attitude of the specialist I see.
He is very anti surgery but that might be because he and his unit have conducted many of the Xiaflex trials in the UK and they are probably favoured by Auxilium. They do conduct a lot of surgical operations for Peyronies though! Whatever, he told me directly that the needles were not strong enough to pierce through calcified plaque and there was a real danger of the them breaking during the process!
Ive
Wish you good luck with your specialist. :)
I was very unlucky with my specialists. :(
James
The below training guide for doctors administering Xiaflex injections says nothing about the plaque composition. There is no reason the recommended 27-gauge needle could not be replaced with a larger needle at the doctor's discretion.
http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-(5)-(1).pdf
jnstrawn
Your link does not work.
The requested URL /downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies was not found on this server.
James
I don't know why the link is not working; I have cut and pasted the URL directly from the pdf. Try it again.
http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-(5)-(1).pdf
Don't know why the link persists in not working. It can be made to work however. When you click on the below link and it doesn't work, you need to then adjust the url in the address bar. Where the URL ends in Peyronies, replace Peyronies by typing Peyronies Disease-(5)-(1).pdf and it should work.
http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-(5)-(1).pdf
Some administrator on this site is rewriting my posts. This site can therefore kiss my ass.
jnstrawn
Your post bellow is not our style of talking.
So yes, you don't fit here, in any case your contribution to the forum with your 7 posts is not too much.
James
jnstrawn,
As the founder and administrator of this site no one is authorized to rewrite anyone's post and to my knowledge it has never been done to any of the tens of thousands of posts on this forum and if Such activity ever were to occur it would be easy to track with the administrator logs.
We abide by the rules and promises as posted under the "Read This First" board
Quote from: Hawk on August 12, 2005, 11:08:40 AM
...Patients on this forum have the right to free speech within the framework of "A Few Simple Rules" posted above. That free speech will not be restricted...
We think of it as a sacred trust, that members of a forum have a right to know they are reading the actual comments of others and not reading censored or modified remarks. If violations occur, usually the entire post will be removed until it is resolved (this has only occurred twice). Minor changes such as repairing a posted link, or deleting accidental double posts, or removing repetitious quotes, will be done prior to notification. The forum also has automatic word substitution on some words such as abbreviations that may not be understood by new members and a few profanity substitutions. The body of every post will remain unaltered by administrators or moderators.
It speaks not only to our policies but to our community that out of tens of thousands of posts, to date, we have never edited a single word of any member's post. Unlike some forum software, SMF forum software shows all edits by the poster or moderators at the bottom of each post. Since our inception, not counting obvious SPAMMERS, we have banned only 4 members and deleted their posts.
If you have a specific complaint then I encourage you to be civil and either address it here in a post or send me a PM if you prefer.
Respectfully
Hawk
Yeah, it won't work on calcified plaque. I have diffused scarring throughout and a few patches with defined plaque. I was relieved when I was told it wasn't calcified, but was prepared for surgery if need be. I wonder if Xiaflex won't be effective on calcified plaque or if it just hasn't been studied to establish the efficacy. What a pain.
James1947 Exactly how do you know my post is of no value if the URL central to my posting appears in an unreadable form? And when I try and hand write instructions to the URL that appears, those hand written instructions appear in an altered form and unusable in correcting the URL.
The URL is to the REMS Training Guide for doctors administering Xiaflex.
Not Found
The requested URL /downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies was not found on this server.
Apache/2.2.22 (Ubuntu) Server at www.xiaflexrems.com Port 80
James
Dr. Gelbard confirmed the same regarding Xiaflex not working if having calcified plaque. My ultrasound revealed none 6 months ago.