ljm2246: 13 months, no ED recovery, now got injection drug with no instructions- help

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/25/2009 2:00 PM (GMT -6)   
In another thread, ljm2246 posts about her SO who's doctor just dumped prostaglandin injection drug on him without any instructions or an initial office try. I'm moving her post here and giving her her own thread, as this will probably tun into a long one, and won't hijack the other thread. tongue

Here's what she posted:

Hi everyone ... first, I don't want to freak any of you out by acknowleging that I'm a 'female' and 44... but I can absolutely talk the language of prostate cancer - da vinci machine surgery - and post-prostate removal activities and frustrations.

My 54 yr. old, musician, and significant other of 6 years had to have his prostate removed 1/8/08. We did a LOT of research as you likely all can concur this decision is NOT an easy one. We decided that the da vinci was the best route to go as we were assured it was the least invasive of the surgeries for total removal of the prostate. Prior to his surgery we noticed his frequent urination, and declining erection control. This is what led him to seek answers to why he was having these symptoms. Before all of that we had a fantastic and healthy sex life.

We were assured that though we could expect a period of anywhere between 3-8 months before bladder control and sexual function would be potentially fully intact ... it could actually be up to 2 years post surgery before sexual function would be back.

It's now been 13 months since surgery. His bladder control came back completely just 5 weeks post-surgery (so we're thinking YEAH sexual recovery should be just around the corner!). Not so. Immediately post surgery - while still in the hospital ... he was put on Cialis. He took that faithfully for a year since. In late Jan. 09, he met with his urologist to discuss the fact that 'nothing' was happening in the erection department. He has done the penis pump faithfully as well, tried the rings, etc.. Urologist gave him an abundance of Cialas, Viagra and Levitra and said 'experiment and see if something works'.

Aside from the horror of reaching the point in which a specialist simply hands out meds and says basically 'hey, i have no idea, try these ...' .... it was an emotionally and mentally draining experience as well - as this is the point where it became evident that we likely are no longer on a 'progressive' recovery ... but rather ... potentially ... a permanent pitfall.

Which brings us to today ... none of the combinations or experiementations of those three pills made any difference. He suffered side effects from the Viagra that we both agreed were definitely not worth taking them again.

He spoke with his urologist two days ago, said he was ready to try the last resort of 'injections'. He received those meds today. To my astonishment ... he was not told to come in to the dr. office to be injected the first time to learn what dosage is appropriate for him to begin, much less given a 'hands on' instruction on how to overcome the mental discomfort of injecting his own dick with a needle.

So, the meds came ... no instruction, no indication of dosage amount whatsoever. Calls the dr. they're out for the day.

Now, this may seem a testimony that most don't want to hear ... but I feel it should be said. This is a real scenario. It's an emotional and mental upheaval to say the least. I feel his urologist is very neglegent with the medication - Prostaglandin -E1 20 MCG/ML - but now that it appears we're at this level of 'not' being able to have a normal or even any sexual life again ... it's horrible.

All that stated ... he is able to achieve orgasm and was able to achieve that (sans the fluid as removal of the prostate disallows the seminal fluid you used to have) - at about the 6 week mark, though no erection.

Thanks to any of you who read this whole thing .. I appreciate just being able to discuss it.

Post Edited (James C.) : 2/25/2009 12:06:46 PM (GMT-7)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/25/2009 2:02 PM (GMT -6)   
ljm, Welcome to HW. Pardon me for being a little confused. You have the med. for injection Prostaglandin 20mcg strength. This I understand. I can't tell if you have tried it yet or not? If you haven't tried it yet, we/I can give some pointers for the initial attempts, if that is what you are asking? The fact that your doctor has dumped this in his lap without any education or support ir bad and not anything that a patient could or would expect. He definitly is wrong on this. That being the case, it is something you/he will have to take up. In the meantime, we can help you with education and tips for using the injection drugs and try to get you two off on the right foot using it. It's a mater of trial and error beginnning, and you will still have some failures along the way, but there's a ton of sources, data, and experience here if and when you two are ready to try it. It may be that this drug will not be the one to work, but finding the right one can be managed. If you wish to investigate the ed injections in detail, I got lots of links for you to read and learn, or just ask what you need from us. There's a couple dozen here that has been down that same road and should be more than willing to help as we can.

As an aside, I have been in the same situation as far as failure of ed recovery as he has, just 4 months longer. Been thru the pumps, pills, and the injections, I have had no recovery of function using the pump or pills, but do get good results with the Trimix. I personally am not giving up hope until the 2 or 2 1/2 years mark. Lets us know how we can help.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 2/25/2009 3:42 PM (GMT -6)   

ljm,

As you can see from my signature it has been two plus years since my surgery.  One thing that I have noticed on this forum is a lot of PCa victims are given unreasonable assurances of the return of erections.  In my case my surgeon gave me an 80% chance of returning to erections within two years.  That has not happened.  While there has been some improvement in the last few months there has been little improvement.  I use injections and let me assure you that your SO and you can have a sex life back with injections.  The quality loss is no spontaneity.  One of the other forum members has offered to provide links on how to use injections if you so desire.  I would suggest you take him up on it.  You will hear drugs mention called Caverjet (brand name), Bimix and Trimix.  Alprostatdil is the generic Caverjet.  Many men, including me, could not use Caverjet due to discomfort from aching.  Bimix does not have Alprostatdil in it and I can use it without any pain.  Getting past the fear of injection is the key.  I use a 30 gauge needle which is real small.  It is a half inch long and I barely feel it.  Getting to the dosage level that is right takes a few tries.  The key is to start on the low side which your doctor should have suggested.  Too much and the erection will last a long time (hours) and could require emergency room treatment.  In my case my erection last two to three hours depending on how you define it.  I take an antihistamine after sex which helps to counter the erection.  Once you educate yourself from the links I urge you to give it a try.  If aching occurs then try Bimix.  This is a compounded medication so you have to get it from a compounding lab.  If your doctor does not recommend one then let the forum know and we can offer up choices.  Also, Bimix and Trimix are a lot less cost then Caverjet.  Some insurances will cover Caverjet but few will cover compounded medications.  Finally, after trying injections for a while if the two of you are not satisfied with the loss of spontaneity then penile implants are an option.  You need to study this option a lot before choosing.  In my research there are just as many bad stories with penile implants as good ones.  I am still considering the implants but am concerned about them.  Failure of the implant procedure due to infection or some other reason eliminates any chance of having erections again. 

keep studying and researching and have hope as it can be better then it is now.

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/25/2009 3:48 PM (GMT -6)   
ljm, from the other thread, here's my copy and paste. smilewinkgrin

Do you have the necessary syringes? What size are they? I recommend insulin syringes, 5/16"long needle, 30 or 31 ga., .5cc capacity size. Do you have the alcohol swabs to clean the penis site and the drug vial top to draw the drug up? Do you understand how to draw up the liquid and how to sterilize everything while doing it? There's a technique to doing it right- as with just about everything- so make sure you guys study up on it to make the first attempt as comfortable as possible for him. I also suggest you get some of the real Sudafed with psuedoenephrine in case the erection lingers and doesn't go down in 4 hours. 2 or 4 of them will help it go away. The drug you have is known to cause aching and/or pain in the penis with use. about 2/3 or more men have some reaction to it, with aching or pain. It is also the strongest of the available drugs and will give the best results, if it is going to work. I suggest you begin with the first dose of .1cc (that's the 10 mark on an insulin syringe). Start with a low dose and see what happens. After injecting, very gently massage the penis for about 5 minutes to spread the drug through the penile tissue and the cavernous cavities. Don't squeeze the penis, as this will probably push the drug out of the penis. Results should start being seen in 10 or 15 minutes. Most men find that the erection will get stronger with stimulation, will abate somewhat with rest, and can come back erect again with a litle more stimulation, until the drug wears off. It should work for at least a good hour, maybe 2. If less time or not erect enough to get penetration, then the next time, increase the dose to .15c (15) and slowly increase each event until you find the dose that will give a good erection for an hour or so. Good luck and any question, just ask.. :smilewinkgrin smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 2/25/2009 5:45 PM (GMT -6)   
To those wanting to learn injection therapy,

Google the subject on penile injection directions. I can't recall exactly where but, there is a really great tutorial on how to give shots. location is as important as dose is so please...Google and search before taking a risk. The alternative can lead to unecessary scarring.

Swim
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/25/2009 5:46 PM (GMT -6)   
ms swim, here's the best I've found:
www.phoenix5.org/sexaids/injections/injectionsmenu.html
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 2/25/2009 11:00 PM (GMT -6)   

ljm,

   James C the moderator has a lot of good advice on this. I have done the bimix/trimix injections for 5 months now and here are my "helpful hints" or suggestions: I find that grasping the head of my penis and pulling it straight out is the easiest way to get the skin out of the way and makes injecting into the cavernosa easier. A couple of times I didn't pull it out far enough and I ended up injecting into the skin (I guess) because I got no erection and just a big red sore area near the injection site.

   Make sure and alternate injection site from one side to other side of penis to minimize scarring. Think of looking at the cross-section of the penis as the face of a sundial with the top being 1200 and the bottom being 600. You want to avoid injecting at 1200 and 600. Although most uro sites recommend the 900 and 300 positions as the best for injecting I personally found I have better luck at the 1000 and 200 positions with better erections. Make sure and move your injection site up and down the penis along these positions to try and not keep injecting at the same place to minimize scarring.

    When you have drawn up your syringe of medicine, make sure and roll the syringe back and forth between your hands to warm up the medicine before injecting (I didn't do that the first time, talk about a cold shock)

   When you first inject I find it less painful to make an intial jab to pierce the skin rather than slowing pushing into the skin. Then make sure the needle is placed all the way in on the surface especially if using short needles. When he is through the skin and he starts pushing on the plunger if there is a lot of resistance it means that the needle is in the wrong place and he needs to remove the needle and try again. This can be very frustrating at times but it is worth doing right to get good needle placement. You know the needle is in the right place if you press on the plunger and you feel very little resistance. Again there should be very little resistance as you inject into the cavernosa. Push the medicine in slowly over 10 seconds, there should be very little pain doing this.

   I don't roll the penis around like James C does after injecting but that sounds like a good idea. I do hold pressure with my thumb or finger over the injection site and opposite side of the penis for a count of 60, 5 times in a row (ie 5 min) before releasing pressure.

    I've never used the medicine they gave your SO, I started out with trimix and then bimix. Trimix gives stronger erections than bimix but is more painful than bimix. Mostly I'm used to a lower level of trimix now so I mostly do trimix.

     As someone else said on this thread the worst thing about these injections is the lack of spontaneity of sex now. You have to sort of plan everything. Still my wife and I feel this is better than no sex at all and so far the prostate ca has not returned. I am hoping someday to get by with just the little blue pill. Until then my wife and I do have an intimate relationship again...


my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/08, 2/12 cores positive for Prostate Cancer on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 3+3=6 both cores,
Clinical Stage T1C
 
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery,
No signs of spread, organ contained,
First post-op PSA=.01 on 10/15/08,
Second post-op PSA <.01 on 01/15/09,
Incontinence gone in early December '08,
ED remains, using daily Viagra and 2x/wk bimix/trimix injections for penile rehab


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/4/2009 9:41 AM (GMT -6)   
ljm, well it's been a week or so. How did the injection go the first time? Can't help but be curious about the experience and results? smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 3/4/2009 11:51 AM (GMT -6)   
ljm:
FYI, there's another alternative you might want to explore that's not quite so intimidating as injections. It uses the same drugs, but is applied using a 1" long plastic applicator which is simply inserted into the end of the penis, then the drug is released. The name of the product is MUSE. Look it up on the web if you're interested.
58-year old attorney, no family history of PCa
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Post-OP:Actual involvement 15%, one lobe only; PCa fully contained in prostate-no involvement with other tissues and margins clear
Catheter out on 3/2/2008; fully continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED: 20MG Levitra every other day; Vacuum pump almost daily; some improvement, but not there yet. Started using MUSE with some success, 11/1/2008
2d undectable PSA on 7/21/2008
3d undectable PSA on 10/30/2008


Bigdawgsprtctnsrv
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 3/4/2009 10:45 PM (GMT -6)   
Just thought I'd share a short note on the injection issue - so today I am celebrating my 18 mo. followup from surgery - PSA was great!!! however am still having "leaking issues" not terrible but annoying. So anywho.. for the last year I've tried a variety of the oral meds.. stuck w/ Viagra with little results - had to be carefull of what I ate etc.... never acheived a usable erection.. so today was D-Day .. my first injection - my Dr. prescribed Edex which is Carvajet - I found the setup of the medication easy - after some walk thru practical techniques with one of his staffers it came time for the real deal. Once I got past the mental issue of sticking myself I found the actual injection to be quick and easy - thats not to say I didnt feel some pain and discomfort !!!! - but not as bad as I had imagined !! it felt like a quick prick then a slight burning sensation upon injection but subsided within minutes.. the reaction was unbelievable!! it certainly cured my hydraulics issue -
overall the medication had lasting effects for about 90-120 minutes. Now I cant wait to resume an active sex life.. I'm sure I'll probably go thru the same nervousness at home but gonna try again this weekend - gonna plan a romantic weekend with my lovely bride of 23 years - she's been awful supportive and I dont know what I'd of done w/o her by side thru all this!!! Now if I could cure this leaking issue .....


--------------------------------------------------------------------------------
47 yo male
Routine exam 7/07 showed PSA more than doubled in 1 year - 2.9%
DRE w/ biopsy - Gleason Score 3+3=6
Positive 2 of 12 @10% confined to lower left lobe
Divinci surgery 9/11/07 nerve bundles saved
Post surgery 18 mos. still less than detetecable P.S.A. !!!!
Still problems w/ stress incontience
1 pad per day - 1 per night
ED - lots of desire - excellent sensation - but no lead in pencil!! until today 3/4/09 !!!!
46 yo male
Routine exam 7/07 showed PSA more than doubled in 1 year - 2.9%
DRE w/ biopsy - Gleason Score 3+3=6
Positive 2 of 12 @10% confined to lower left lobe
Divinci surgery 9/11/07
Post surgery undetectable <0.01
10/08, 1/08,4/08 all < 0.01
6 mos - still problems w/ incontience(stress-laughing,coughing etc..)
1 pad per day - 1 per night
ED - lots of desire - excellent sensation - but no lead in pencil!! 
 
 
 
 
 


jimmyd51
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 7/8/2010 12:35 PM (GMT -6)   
my uro just set me up to use Edex.  but i hear there is a lot of pain with the erections.  anyone wish to comment on that for me?  i am over a year out from robotic surgery and have not had any luck with viagra or anything else so this is my last hope. 
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 4:56 PM (GMT -6)
There are a total of 3,005,223 posts in 329,204 threads.
View Active Threads


Who's Online
This forum has 161763 registered members. Please welcome our newest member, Dnoey.
321 Guest(s), 11 Registered Member(s) are currently online.  Details
SoMuchFun, bobmars, 81GyGuy, mattamx, Kent M., spottydog10, stepbystep, Michael_T, Bohemond, Girlie, Shayanv