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Author Topic: Status after X rounds of XiaFlex  (Read 7282 times)

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PMRT

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Status after X rounds of XiaFlex
« on: June 02, 2014, 06:18:21 PM »

I am never sure where I post the previous time so I am posting a new subject.  First, for those who have been reading my posts a recap from round two:  I developed a egg-like swelling after the 2nd of round two shots that did not go away as did previous swelling. I rushed back to my doctor after a week who said it was perfectly normal and it would go down over the coming 6 weeks, which it did.  At that time he also told me was possible some of the swelling would remain when we started round three which again was true.  I  started my third round today with a swollen area about the size of half a marble off towards one side.  The second shot this Thursday will probably result in swelling similar to round two.

However in the last couple weeks I found areas of the shaft that feel perfectly normal where previously there was hard scar tissue.  Full curvature occurs only with full erection which was not the case earlier.  Also, a fully curved shaft is now easier to bend straight.  I therefore conclude the Xia Flex has reduced the size and firmness of the Peyronies Disease scar.  On the other hand the scar is not melting symmetrically so I now have a "jog" to the right.  I am a bit less concerned with this because A) there is much more scar melting to do and B) relations would be possible with it.    I will likely post again next week, a few days after this Friday's modeling. Overall my doctor says my progress is where he would expect it to be at this time in treatment.

I mentioned using cold packs to reduce swelling.  My doctor discussed this during a seminar and there was a difference of opinion about whether it was harmful or helpful.  The short story is I am not using cold packs this time, just in case.  Last observation for today.  The tight wrap was extremely painful today even though he wrapped it the most comfortable way used in the past (including the head).  I could only stand to have the wrap on 2 hrs, 10 min.  Every minute was excruciating.  I wonder if they have a longer lasting anesthetic?   
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james1947

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Re: 3rd round of Xiaflex started today
« Reply #1 on: June 02, 2014, 07:16:43 PM »

PMRT

Quote
I am never sure where I post the previous time....
Go to your profile and click on "Show posts".
You will see all your posts and where they are. Your previous posts are here:
Thread for Guys in Xiaflex Trial - Currently or Previously - Peyronies Society Forums
From what you are writing I understand you have improvements. Wish you to continue to improve and continue updating us.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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PMRT

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Re: 3rd round of Xiaflex started today
« Reply #2 on: June 08, 2014, 09:58:32 AM »

OK, it is Sunday, two days after modeling following my third round of shots.  I did not experience nearly the swelling and bruising this time around as I did in rounds 1 and 2 even though I did not use any cold packs this time or even leave the wraps on as long as in the past.  I did, however, get off my feet for the day after both shots. 

Modeling on Friday was done at 4pm so it was easy to relax after getting home at 6 that day (lots of traffic in the afternoon).  An interesting observation about the wraps:  I get wrapped tightly after each shot. It is not comfortable as reported in the past and wrapping the head definitely helps.  However after both shots last week even thought the doctor wrapped as I requested it because excruciating and I could not keep the wrap on the entire suggested 3 hours.  I had to remove it after 2 hours 10 minutes after the first shot and after 1.5 hours after the second shot.  I reported this to the doctor on Friday who said wrapping was actually not mandatory.  It helps with swelling and bruising but as long as one doesn't mind it the wraps can be dispensed with. 

What swelling I had from last week is going down rather quickly.  The doctor says the amount of swelling after each set of shots is a bit haphazard so just because I had less this time I should not necessary expect even less next time.   I opt for the pain block prior to modeling.  The doctor says he has more than 40 men getting Xia Flex now and over 50% opt for the pain block.  Even though I had the block modeling was still very painful.  I can't imagine the pain I would have experienced without the block.  Rigorous modeling is needed so for those of you considering Xia Flex, ask for the pain block prior to modeling and save yourself some of the worst (agreed to) pain you will ever experience in your life.

Like most or all of you I get night erections.  I do not turn on the light in the middle of the night to examine myself but from just feel I am tentatively going to report curvature continues to improve a bit.  Don't read too much into this.  I am still somewhat swollen so curvature can be masked.  I will post prior to round 4 and let you know what I experience at that time.  I suppose the only other thing I can mention is this:  In the hands of an experience doctor Xia Flex appears well tolerated, and the penis shows a remarkable ability to repair itself after such trauma.  Clearly there are exceptions but at the moment I am comfortable with it.  Hopefully I will not be proven wrong later. 

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james1947

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Re: 3rd round of Xiaflex started today
« Reply #3 on: June 08, 2014, 06:06:30 PM »

PMRT

Thanks for the update.
How you were rating the modelling pain on the scale of 10?
Continue to update your results.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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PMRT

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Re: 3rd round of Xiaflex started today
« Reply #4 on: June 14, 2014, 10:33:56 AM »

Hi James:  I only allowed the modeling without the pain block once.  On a scale of one to ten with ten being the worst, I would put it at a ten.  As mentioned I am a cancer survivor and I have experienced some pretty nasty pain both in the throws of the disease and the treatments (like bone biopsies) and this was worse than all of that.  With the block I felt nothing during the second round of modeling.  Also with the block I put the pain at about a 2-3 during the third round of modeling.  The pain block shots are easily tolerated. Why put yourself through that pain?
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PMRT

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Re: 3rd round of Xiaflex started today
« Reply #5 on: June 14, 2014, 10:50:12 AM »

I felt it was worth updating all of you again even though it has only been 8 days since my 3rd round.  Probably 75% of the swelling and bruising has subsided.  This is far faster than in round one or two.  My scar is reduced considerably.  Until all the swelling is gone it is hard to say how much but it is probably approaching 50%.  I think (not sure) it continues to get consumed by the body after the swelling subsides but I am not sure about that. The doctor says Xia Flex acts like "taking a forest down one tree at a time".  I take that to mean it dismantles the scar structure over time.

Here's what you all want to know:  I can say with confidence my curvature is improved from what was ABOUT 65 degrees (with some erections it seemed worse) to less than 45 degrees.......perhaps even 40 degrees.  I am not using a protractor so all these numbers are estimates but I doubt I am off by much.  Clearly this is a big improvement and I am nothing short of thrilled.  I had assumed I would see no improvement until the very end but that is not the case.   Also, the shaft bends straight with far less effort (I think I mentioned this last time).  I won't make you read between the lines:  I think I could manage relations even with no further improvement but I still have one round to go. I am hoping for even more improvement and more shrinkage of the scar.  Still, something tells me the scar will not be entirely be gone by the time I finish treatments.  You can email me at [email protected] if you want a faster, personal reply.
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james1947

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Re: 3rd round of Xiaflex started today
« Reply #6 on: June 14, 2014, 05:50:05 PM »

PMRT

Encouraging update.
And you are right. Why suffer pain if can be avoided by by a pain blocker?

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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PMRT

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Re: 3rd round of Xiaflex started today
« Reply #7 on: July 12, 2014, 09:08:42 AM »

OK, well I start round 4 next Monday.  Again, I thought a post was on order.  At this point virtually all the swelling from previous injections has subsided except for one localized spot, and what remains is very insignificant.  This means I can get a good idea of the remaining scar tissue.  I started with a scar that can best be described as the size of a large grape.  It now has a total mass size probably about the size of a small almond.  For those of you unfamiliar almonds, go get one......a small one. It is very irregularly shaped, however, with one sharp point which causes a pull to right at that precise location.  Note:  I always had a pull to the right at that spot.  I plan to tell the doctor this although I think he already knows:  I want this next shot concentrated in that area.  The scar is small enough, however that I need to palpate the shaft significantly to feel it.  Before starting the shots it was quite evident with almost no pressure so there is no question the majority of the scar is gone.  Curvature remains the same as my last post but again, this is to be expected.  Again, I am hoping to bring 40-45 degrees down to at least 30 degrees and with round 5 perhaps even more (see below about a 5th round).

Three more points of significance:  1) The normal, everyday feeling of one's penis has largely returned.  This is an odd statement, but you know what I mean.  I mean I don't notice it anymore.  The weird sensations are gone.  I wore men's white briefs my whole life because my father did. These hold the penis close to the body.  I changed to boxer shorts when I got Peyronies Disease and remain with them.  Boxers give more room and the penis hangs and moves around more than with briefs and I feel that difference but that's it. Erections when sustained are fuller and less "necking" occurs at the site of the scar which probably leads to the next point:  2) My outlook is improved a lot.....so much so that I actually felt like initiating relations again for the first time in 18 months.  Mechanical details are not important. What is most important point is the vast improvement in my outlook, attitude and interest in intimacy again.  3) The doctor says I can have a 5th round if I continue to show improvement with round four.  I confirmed this with the drug maker.  It is unlikely insurance will pay for it because the FDA only "approved" four rounds so I will have to pay for it myself.  Personally,  I couldn't care less about having the money in the bank if my penis is still bent and spending it will help straighten it.  Of course, clearly one has to have the money to begin with.

About costs:  I don't read other posts but early this year I read a few and there were differences in what people reported for the cost of Xia Flex treatments.  Of course no one knew for sure but I can now tell you exactly:  Each, individual shot costs $3995.00.  That's $8000 per week or $32,000 for the full course.  Doctor's office visits and pain blocks add about another $750.00 to $1000.00 per week and if you need additional visits for whatever reason (I had one) those costs will add to the total.  Auxillium (the drug maker) offers a $700 discount for every 2-shot treatment, or $2800 total.  Be sure to ask about this and follow up with both your doctor's office and the drug maker.  My first discount fell through a paperwork crack.  I had to pay it in my co-insurance portion of my first round and am now waiting for a reimbursement check from the drug maker that takes 6-8 weeks to get.  The customer service people at Auxillium are very helpful.  Get the name of the person with whom you speak.  You can talk to the same person each time which is nice....you don't have to explain your situation each time you call.   

I will post again at the end of next week after the completion of round 4.  If you have questions you can email me at [email protected]         
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james1947

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Re: 3rd round of Xiaflex started today
« Reply #8 on: July 12, 2014, 05:18:24 PM »

PMRT

Thanks for the very detailed report and the information.
Wish you to improve to the point that you forget you ever had Peyronies.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

PMRT

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Re: 3rd round of Xiaflex started today
« Reply #9 on: July 18, 2014, 03:31:50 PM »

I am posting under threads for guys in xia flex trial since most seem to read that one.
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PMRT

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Status after X rounds of XiaFlex
« Reply #10 on: October 31, 2014, 10:14:41 PM »

Well, I have had 6 rounds (12 shots).  I am three weeks out from modeling as of today.  My doctor and I are trying something new.  Instead of just one modeling session on Friday (the day after the second shot) we decided to have three sessions: Friday, the next Monday, and then a week from that Monday.  Friday was typical.  He felt additional break up.  Monday he said it felt like sponge....he wasn't sure much as was happening.  However a week later (the 3rd modeling session.......now 10 days after shot #2) he kept saying: "wow" and "this is very interesting" repeatedly.  At the conclusion of this modeling he said the plaque was breaking up like he never felt it before with me or with other patients.  I have to add that as soon as the swelling subsided I could tell the plaque was DEFINTELY smaller.  Today (about another ten days after the 3rd modeling) I conclude I made a lot more progress with this last round of Xia flex due to the three modeling sessions.  I would also say the pull to the right is almost gone and curvature is probably less than 30 degrees.   

Because of the breakup he felt at 3 rounds of modeling my doctor wanted to perform modeling again a week later but he had planned a vacation.  By the time he is back, I will be Asia for two weeks on business.  By the time I am back it will only be a week from round 7.  Yes, I am definitely going for round 7 so I can have modeling every week for at least 4-5 weeks afterwards.  I am hoping to really make serious progress with this strategy.  I will let you know how it goes, but I want to say again that additional modeling seems to have helped a lot. Talk to your doctor about having multiple modeling sessions.   For those who are doing their own modeling I cannot see how you can possibly put the pressure on the scar that a doctor can, standing beside you.  My doctor feels the same way.   
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skunkworks

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Re: Status after 6 rounds of XiaFlex
« Reply #11 on: November 01, 2014, 12:26:14 AM »

Thanks very much for the update, sounds like things are going really well!

Is the modelling still as painful now as it was at the start?
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PMRT

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completed round 7 of Xia flex two weeks ago today
« Reply #12 on: December 19, 2014, 07:47:21 AM »

First, I have posted in several areas under the Xia Flex main heading so if you want the entire story from round one I suppose you will have to sort by my post name. 

I completed round 7 two weeks ago today.  Pretty similar side affects as previous rounds.  Some swelling and bruising but nothing unusual.  Since I am paying for shots now I asked the doctor if I could direct where the shots would be concentrated and he agreed.  I wanted to reduce a "point" or "protrusion" on the right side of my single, dorsal plaque which I believe was (still) causing a few degrees of bend to the right (along with my approx. 30 degree bend up.....now down from about 65 degrees at the start for those who have not read my previous posts yet).  The left side of the plaque was smooth and rounded and expanded more uniformly during erections.   I was trying to gain some symmetry in this respect. 

This last round appears to have accomplished that goal in as much as the protrusion is largely (not completely) gone.  I think the pull is just about eliminated.  Until all swelling is gone it is hard to know exactly.  I am also having modeling done every Friday for 5 weeks as opposed to one, single modeling session after shots as in the past. Today will be the third Friday of modeling since my 7th round of shots.  My doctor is wailing on this plaque like there is no tomorrow during my modeling sessions and therefore I never fail to have the pain block first. The most uncomfortable part of all this is the soreness at the base of the penis in the groin area due to the repeated shots, but it is just that....soreness.....and can be tolerated. For example, I still go to the gym and work out vigorously even during the week of shots.  I also think a few more degrees of curvature have been erased but again, it is difficult to tell for certain as I am not in the mood for many full erections at the moment.

My doctor said during last week's 2nd round of modeling he felt some continued "breaking up" of the plaque, so that's a good thing.   I am pretty much of the mind to go for round 8 of Xia Flex shots plus repeated modeling (assuming this modeling experiment proves to be more effective than just one).  After that I suspect I am going to need to take a break and let all the swelling and soreness go away, then re-assess at that point.  That may be the end for me but who knows.

As you might imagine I have had a lot of time to learn some fun facts (if you consider this fun) about this industry. There are about 140 urologists nationwide now administering Xia Flex out of about 10,000 licensed urologists in the country. The average doctor has about 10 patients (but I assume that is increasing).  Dr. Connors (my doctor) says he has over 200 so he is way above the average.  For example, in my last round of shots he had 11 men coming in during that one Thursday for Xia Flex shots.  To my knowledge I am the only patient nationwide to have gone 7 rounds.  Again, I always wanted to be famous but certainly not for this.    If you are anywhere near the Boston area I recommend Dr. Connors, Men's Health Boston (in Brookline, MA).
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james1947

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Re: completed round 7 of Xia flex two weeks ago today
« Reply #13 on: December 19, 2014, 03:51:47 PM »

PMRT

Thanks for the detailed report.
I added your recommendation to our doctors list.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
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PMRT

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after eight rounds of Xia-Flex
« Reply #14 on: January 17, 2015, 10:06:37 AM »

First: When I asked him, my doctor says I am not nuts.  He told me of one patient that went 40 rounds of verapamil (who achieved rod-straight results from it).  My dorsal scar has been diminishing at the rate of 1-2mm per round of Xia-Flex shots (verapamil was not effective for me two years ago). Based on the sized of my scare I am therefore resigned to the notion that I am going to have a very expensive penis.

Swelling during this eighth round was different than in past rounds.  It was very uniform and contained within the scar for the most part.  It is hard to explain but to me it seemed like perhaps the scar was finally "dissolving" and the Xia-Flex was flowing more uniformly throughout it.  I mentioned my observation to the doctor who agreed with the visuals but would not conclude anything from it (his scientific training I suppose).  So I said to him: "Doc, one of these rounds this thing is going to reduce in size below critical mass and finally just break up in your fingers during modeling".  He agreed that was a reasonable hypothesis.  Well, this round was it....or the beginning of it.  During modeling yesterday the scar "gave away" so much Dr. Connors recommended I say there, wait 30 minutes and have another round of modeling....which I did........which also included another shot of pain block. (side issue: I think it is safe to say one never gets used to those pain block injections.  Dr. Connors now injects some block and then hold still for about 30 seconds to give it a chance to work, making the rest of the shot more comfortable. Mention this method to your doctor.  The point is the scar gave a lot during the second round as well. 

By last night to say I was swollen and bruised is an understatement but so what?  I am not in any pain.   I am going for modeling again next Tuesday and then again next Friday.  Since we discussed verapamil earlier I then suggested perhaps we switch back to it and see what happens (verapamil is covered by insurance no matter how many shots are administered).  He thought that was a great idea and wholeheartedly endorsed it.  Therefore, 4 weeks from yesterday I will begin a set of six verapamil shots every two weeks.  Its an experiment to be sure but aside from more straightness I also want this scar reduced to an insignificant size for the long term. 

For those who have not read my previous posts I am down from about 65 degrees to about 30 degrees.  The right-hand "jog" (curve to the right but then straighten-out) is just about gone completely.  And when I am not swollen from the effects of shots and modeling the scar is now far smaller than it's original size.  As we all know it feels different at different times but as an estimate from the largest it has ever felt to the smallest I would say it is down 75%.  My theory is as it gets smaller it will reduce in size at a faster rate with continued shots.           
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nemo

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Re: after eight rounds of Xia-Flex
« Reply #15 on: January 17, 2015, 10:22:35 AM »

That's exciting stuff, PMRT - in a field that is not noted for exciting developments!  Great job thoroughly documenting your experience.  Thanks, and best of luck.  We'll stay tuned.

Nemo
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james1947

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Re: Status after X rounds of XiaFlex
« Reply #16 on: January 17, 2015, 05:19:50 PM »

Merged your topics otherwise no one, including yourself will not be able to follow what happening.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Rjljr

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Re: Status after X rounds of XiaFlex
« Reply #17 on: January 18, 2015, 09:48:37 PM »

I'm seeing Dr Connors, also. First cycle went very well. However, the modeling of the second cycle has left me sore into the sixth week. Not sure if third cycle should stay as scheduled.

First cycle had no negative effects on erections and sex was fine after the two week period of abstinence.

Modeling of the second cycle left a lot of pain and a good size hematoma under the head of the penis. It cleared after three weeks. Sex is uncomfortable and painful in some positions. Erections are happening easily.they aren't as firm as prior to second cycle.

Any issues with the comfort of your erections?

Ps. I hate those pain numbing injections, too. I have two each visit.


Jr




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hope4all

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Re: Status after X rounds of XiaFlex
« Reply #18 on: January 19, 2015, 12:20:20 AM »

My doc uses no pain numbing injections before the xiaflex shots and I prefer it that way, the less needles in my penis the better.   He also doesn't do the modeling, but I will be doing traction immediately after each injection after my 2nd round. My traction device will arrive this week.

I read posts from a few members who've said that their doctors believe the shot is in it's most active phase within 30-45 minutes after injection.  It keeps the plaque more pliable for several weeks after the shot but within the first hour the enzyme is the most powerful. I tend to believe that because after the very first shot, I could feel a burning sensation within the cord itself for about an hour or two after the shot.

The more I read these boards the more I'm convinced that as different as the disease is from person to person, the treatment of Peyronies seems to be different from doctor to doctor even with Xiaflex.

Such is the treatment for a disorder that nobody has a firm grasp on, pun intended.

6 years in and doing pretty well considering the hell this has put me through.  I haven't stopped laughing, thank God.
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Knight

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Re: Status after X rounds of XiaFlex
« Reply #19 on: January 19, 2015, 06:09:35 PM »

This is a very interesting thread. My doctor does not do the in office modeling either but strongly insists his patients do the stretching exercises and traction immediately after receiving the injections. Borrowing an idea for another member I am bringing my traction device with me for round 3 and might just put it on right in his office immediately after receiving the next injections.
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LWillisjr

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Re: Status after X rounds of XiaFlex
« Reply #20 on: January 20, 2015, 12:34:25 PM »

I cannot comprehend getting the injections without the numbing first. I had 6 Verapamil injections and can't imagine they would have been like without.
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hope4all

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Re: Status after X rounds of XiaFlex
« Reply #21 on: January 28, 2015, 05:54:25 PM »

Knight - I'd bring the traction device with me to the doctor too but I can't see myself getting into a taxi with that thing on.  I live 10 minutes away from the doctor's office so I'll be rushing home to put it on.

LWillisjr- In my case, the technique used in the Verapamil shots was much different than Xiaflex.  The doctor who injected me with Verapamil put the needle in and punched holes in the plaque while injecting the liquid, to create the swiss cheese effect. For me, it felt way more forceful than Xiaflex has been so far.  With Xiaflex I don't think the needle is suppose to pierce through the opposite wall of the plaque when transversely injected...so the medication can stay within the plaque and not seep out as much.  At least that's how I understand the literature.
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