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Posted 4/9/2012 7:41 PM (GMT 0)
Oh, this sounds too good to not inquire about....what is GMPH? What...like a camp? omg...lol
And Water Guy wants to bring injectables to camp?
And Raddad, I am so glad I could bring inspiration to you today...who knew?
Had a feeling something needed clarification. HaHa
Kathy
Posted 4/9/2012 7:55 PM (GMT 0)
Good For Mens Prostate Health

Yes it is a camp where a number of people (guys and wives) get together and discuss really serious things. As you can tell by Water Guys post.:) Cajun Jeff is our host, its in Baton Rouge LA. Jeff has a number of things planned, to include some of his special cajun cooking, swamp boat ride where we plan on using Water Guy as bait, his wife is taking the wives on some tours.

Last count there are over 22 people attending.

I've not attended one yet, If I keep this up they may ban me:)

Bud
Posted 4/9/2012 8:11 PM (GMT 0)
Hi Kathy- I have also had ED issues just like most on this Forum until I made the push to use Trimix, what a wonderful drug !!!! For us guy's, Trimix does a couple of things very well for us. It will give us the ability to really be intimate with our partner the way we use to know it :-), infact our staying power is amazing and usually the wife will even end up with a bigger smile than the guy when it is all over in an hour or two !!!

The other thing is that as soon as a guy knows he can get a nice woody again then mentally things really change and improvement is just around the corner :-)

Hang in there, keep sharing, ask questions and there is truly hope for a changed future.

Curt
Posted 4/9/2012 8:59 PM (GMT 0)
Raddad, I apologize, kinda stuck my foot in my mouth about the camp...it is a good idea...too bad it is so far away or we might have considered it.

Trimix, Curt thanks for your post regarding your success with it. "When it is all over in an hour or two!!" Good Lord...will not even go there. lol

Kathy
Posted 4/9/2012 9:24 PM (GMT 0)
Kathy, here's some info links for you when you have the time to view them. My\aybe they will give you a start in understanding some of what we are discussing, in case we aren't clear.

A very good video of an expert Doc at Sloan-Kettering Hospital, talking about ED and recovery:

www.mskcc.org/multimedia/penile-rehabilitation-after-treatment

Some detailed info about injections, more a primer for those already using them.

www.healingwell.com/community/default.aspx?f=35&p=1&m=1827385

Some more info for those who are struggling with ED and starting to look for help with injections:

www.ustoo.org/PDFs/Injection.pdf

Info. on basic options:

www.ustoo.org/post_treatment_issues.asp

If you read these site, you will have a general understand of what is available. First option is the use of a pump and rings to hold the erection. If that didn't work out, it appears that in your case, considering the HT, the injections or even a penile implant would make the most sense. There's several different pumps available, the one I recommend and several of the guys here bought is in the link below. You don't need spend $500 plus for what can do the same thing for around $100 and is as medically safe. Some men can't use the pump, not being able to overcome the hinge effect (the penile tissue behind the ring doesn't become erect, resulting in an erection just from the penis ring forward.

www.vitalitymedical.com/encore-deluxe-battery-and-manual-vacuum-erection-penis-pump-otc.html
Posted 4/9/2012 9:43 PM (GMT 0)
Kathy

Nothing at all to apologize about! It is kinda sorta a camp, what is it - a bunch of HW folks and spouses getting together for a few days. Could anything be better?

Take a look at this and add yourselves :)

Where are people from?

www.healingwell.com/community/default.aspx?f=35&m=2237708

Bud
Posted 4/9/2012 10:16 PM (GMT 0)
We are from Ohio. Ian just left for his meeting, took a pen and wrote Trimix on a piece of paper! How can someone so low this morning, land in this website, have so many wonderful people tell their experiences, learn valuable information and laugh countless times. You should charge. lol

Many thanks to those of you who shared your selves with me today.
Kathy
Posted 4/9/2012 10:35 PM (GMT 0)
Kathy,

Our GFMPH gatherings started 3 years ago as a  weekend get together of 6 members of this forum held out side of Rochester New York in September. Last April Corevetteman (Cajun Jeff) held the first GFMPH Southern Style at his home near Baton Rouge. We meet now in April (BR) and September (NY) and have from 16 to 22 attendees and some wives and significant others. We have no formal agenda other than having a weekend where  a bunch of us can come together bound by the same beast and forget that beast for 4 days. We do have a special program held Saturday of discussions about PC and subjects related to the same like continence and ED. I attended the one held last September in NY just 3 months after my RALP surgery and I had one of the best weekends of my life and because of that meeting I now have close friends from all over the US and Canada.  Keep watching this forum this summer as we discuss our September gathering as Ohio is within driving distance to NY.

Terry The Water Guy

Posted 4/9/2012 10:39 PM (GMT 0)
Kathy & Ian,

I lam sure we all love a good senese of humor too............so I can't resist from your comment, remember the saying "be careful what you wish for, as it may come true" You know, now with your HWHLO comment (which may well desreve to be added to the abbreveation page) quite possibly with whats been happening here today with you and Ian, there just maybe a whole lot of pouncing going on somewhere in Ohio in the days ahead. We sure hope so. It has been great to share your despair and for our forum to help brightened both of your days!!!! It's an all round great feeling. Keep smiling and especially keep those twinkles in your eyes!!!!!!!!!!!!!!!!

TJ
Posted 4/9/2012 11:18 PM (GMT 0)
I feel a group hug coming on !!!!!! :-) This thread has been great and really shows that there are people out there (strangers) that want to help each other in their time of need.

This thread put a big smile on my face today !!!!

Curt
Posted 4/9/2012 11:56 PM (GMT 0)
I feel exactly the same way. Kathy you hit on a sensitive part of all of our brothers and sisters PCa journey here today. You can tell by the number of reviews and replies. The compassion here to help one another is an incredible force like I have never expereinced.

So that said, smiles are beautiful, hugs all round are great and cookies are a bonus.

TJ
Posted 4/10/2012 12:31 AM (GMT 0)
I can only hope every victim of cancer has this kind of compassion and support within their reach. For those of us that love these people, it is a prayer answered. There is so much strength here, I felt it all day. The words Raddad posted from Cajun about "we will carry you if you fall," certainly applies to this group. Today has been an amazing eye opening day for me. How did I get so lucky? Kathy
Posted 4/10/2012 4:37 AM (GMT 0)
KJ63,

I developed ED Post Prostatectomy in February, 2004. I was 65 and had never had a prior history of ED. I studied the literature  and attended ED Seminars for several years and finally got to speak with two men who had the Coloplast Titan Penile Implant procedure done.

This convinced me to move forward and I had my Titan Penile Implant Procedure done three weeks later. In retrospect, this proved to be one of the best decisions I have made. It truly "gave me my life back", just as the two men I spoke with had said it would and, also restored emotional intimacy with my wife.

My wife of almost 50 years and I have been enjoying my implant for

the past 4+ years and counting.

As other HW members have stated, PDE5 Inhibitors (Viagra, etc.),

VEDs, MUSE are also possibilities, although, none of these worked

to my satisfaction.

Best of luck to you and your husband.

Bob   

Posted 4/10/2012 5:48 AM (GMT 0)

This really is a wonderful thread.  From despair to hope to anticipation. 

Kathy & Ian we’re all looking forward to seeing the post HWHLO!  yeah

 

While I was reading through the posts, I kept thinking about the many times I’ve read in other treads about someone struggling with ED who ends up saying something like, “I don’t know why I waited so long to try injections.”  I believe it is the thought of doing the injection that puts people off … stick a needle THERE?!?!?!   smhair   … but once they finally do it they realize that’s it’s really not a big deal. 

Guys – if you’re on the fence – just go for it; what have you got to loose – it is sooo worth it!!!

 

Best to all with their recovery!

Posted 4/10/2012 12:32 PM (GMT 0)
Good Morning,
Ian came home last evening from the group meeting with some mixed results. He liked the other men in this group and thinks they will become tight...no one knew anything about Trimix...most had never even heard of it, he said. The group leader said something about testosterone levels...the real threat in Ian's particular circumstance. He has an appointment next Wednesday with his oncologist, needs another injection for low bone density and plans to ask him about our discussion, maybe I will go along on this visit. His urologist seems to me to be the guy to ask as well, very switched on doctor, and very proud of the success with Ian so far. So my friends, we will continue to be cautiously optimistic.

If you think you stand us for a few days, we would like to come to the NY shebang in September.
Kathy
Posted 4/10/2012 12:54 PM (GMT 0)
I had not heard of Trimix until my URO suggested it as part of my post RALP therapy for blood flow to my penis. It was my research on Trimix that brought me to this HW forum last July. Trimix is made to order with three drugs which can only be done at special Compounding Pharmacies with a doctor's prescription. Larger metropolitan areas may only have one or two compounding pharmacies, we have only two here in the whole state of Alabama and one is close to my home. From what others have said in this forum not all URO's will prescribe Trimix or any injections so if your URO has no knowledge about this you may have to hunt around until you find one. I do not know for sure but most of the guys in here like me who use Trimix had surgery and are not on HT when using injections, so your husband being on HT may be an issue because of the side effects of HT. RP's can destroy or damage the nerves that control natural erections making the use of ED oral drugs like Viagra useless. Trimix does not require the nerves to achieve erections which is why for us surgery guys it works so well, but there are some who it still does not work, unfortunately.

The first injection along with instructions should be done under the supervision of a doctor in their office.  The only bad side effect is that if you use too much and have an erection more than 4 hours which can result in an emergency visit to the ER.

Terry

 

Posted 4/10/2012 1:04 PM (GMT 0)
Kathy

I use the VA Hospital in DC, so far the care I get there is really first rate.

What I did find is the Oncologist team takes care of the cancer stuff and the Urologist would take care of things like Viagra and Cialis, Maybe thats what y'all are running into.

Hugs!

Bud
Posted 4/10/2012 2:04 PM (GMT 0)
Kathy, ask your husband to print this or write it down for his visit next week, in case the doc isn't up to speed on injections.

Trimix consists of:
30mg. Papaverine
1mg. Phentolamine
either 10mcg. or 20mcg. of Alprostadil (higher is stronger)

This is the 'common' dose of most guys here. the 30/1/10 is a good starting point, in my opinion.

Bimix is the above, without the Alprostadil.

It is usually injected using a 1/2 inch, 30ga. or 5/16 inch long, 31 ga. insulin needle. Available at a pharmacy or online. Local may require a prescription for needles, depending on the state.

He can used these strengths to discuss with his doctor. We have a list of places that he can order the prescription, if there isn't a local Compounding Pharmacy nearby. Good luck.
Posted 4/10/2012 2:48 PM (GMT 0)
Thanks so much for the information James, I will print this out for him. I have been busy looking over the different categories available here. Thanks Raddad for sending out an SOS to the women members for me. Aimzee was thoughtful with her post and I appreciated what she said. Water guy...I have since tried to find out as much as I can about Trimix...but am cautious in getting my hopes built up too much. Ian has become friends with our pharmacist...he plays poker here weekly now and could also be a valuable asset for him. I forgot to mention, the men at the group meeting last night were keen to have this website info...will pass it along to them. I am just so delighted Ian is searching out other men to chat with...he has become a solitary survivor. He will no doubt be joining the members here shortly. Look out...he is a Brit with strange humor. lol
Best Wishes...
Posted 4/10/2012 3:21 PM (GMT 0)
Kathy -there is a forum for ladies only here that you can share your experience and fears with.The ladies are eager to offer help and you may give help and suggestions back to them as well.My wife joined it and got me interested in trying MUSE because I have ED.We had our first love making yesterday-it worked and I felt human again.We missed each other so much.You shared so many feeling that she felt.So check on here for the ladies only forum.I wish you guys the best and yes waiting for HWHLO!
Posted 4/10/2012 3:41 PM (GMT 0)
Ian,

Bring on your sense of British humor, we welcome and encourage it. A good sense of humor has no boundaries. We witnessesed what it did for Kathy and others at this post yesterday. It was good for all, readers and posters alike. We look forward to getting to know you and to help you both further, however we can.

TJ
Posted 4/10/2012 6:54 PM (GMT 0)
Hey Kathy and Ian,

GFMPH in Baton Rouge at Cajun Jeff's place is coming up next week If that is too soon for you, mark your calendar for the one here in Rochester NY on Sept 28, 29, 30.

It really is a lot of fun. They guys will tell you.
We'll fill you in later with the details. I just wanted to give you a heads up so you can start planning.

I guarantee both of you will leave with smiles on your faces.

Jeff (In NY)
Posted 4/10/2012 7:01 PM (GMT 0)
Worried Guy also can cook a pretty good pot of squirrel stew at his GFMPH, I know as I was there last year.  Hope to see you guys this year.

Terry

Posted 4/10/2012 7:29 PM (GMT 0)
Kathy & Ian -- Regarding the 3 drugs contained in Trimix: Just so you know, Alprostadil is a variant of prostaglandin (PGE1), and I could be wrong, but I am under the impression that Trimix usually contains prostaglandin as opposed to Alprostadil. So the mix is papaverine, phentolamine, and prostaglandin.
Posted 4/10/2012 7:38 PM (GMT 0)
Hi..believe it or not, we have been without power since noon. James and Nick..I am now a member of the women's forum. Nick...so very happy for you and your wife...hope we will have the same news sometime.
Water Guy and Worried Guy...thanks, we will be coming to NY...squirrel stew, uh, gee, I am allergic to squirrel, too bad. lol Energized Again...his lordship is becoming a member as we speak. Just don't hold it against me, okay?
Kathy
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