update on jeff & becky's journey, and need for caverject advice

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2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 6/19/2007 1:17 PM (GMT -6)   
Hey everyone -

I haven't been posting much, but keeping an eye on everyone. I've learned so much from you all, and read with interest the updates on how everyone was doing with injection therapy. After trying all of the pills with the only effect being migraines, and muse which didn't do too much but cause pain, Jeff's just been plugging along using the pump for therapy. We had sex using it once, but he had to use 2 rings and was in a lot of pain. Subsequently he had horrible pain during orgasm, so we cut out the pump entirely, and gradually the pain subsided. He started up again with the pump, for about a month now, no rings. But some pain has been returning so I'm not sure what that means.

So we've decided to go witht he injections. Part of our frustration is that although we have a yound dr., he's very minimalist in his approach to ed. When prescribing viagra and muse he'd give VERY low doses, saying that with how Jeff's surgery, healing and prior health were he wouldn't need more than that to get results. Then nothing would happen and we'd be so frustrated. He didn't really have a set plan for us to get things foing after surgery, and we've been the ones to request the muse, pump and injections - for the most part based on what I've learned from you all.

Then 2 weeks ago we found out that he is moving out of the area. I talked to my dr., and Jeff talked to his GP (in the same office) and they encouraged us to try a dr. they like who is very approachable, and proactive. We met with him today and we liked him a lot. He's only a few years younger than we are. When we asked him what kind of a program he sets up for his patience in relation to ed he said that 2 weeks after catheter removal he starts them on ed and the pump, and has good results. Boy were we bummed! He really likes the pump, but we just haven't had good luck with that, and explained to him what had been going on. He asked us if our previous dr. had had a rep come out and fit Jeff for the pump, and train him - we were like, huh? Apparently Osbon and another company have reps that will meet you at the dr.s office for free and go over everything with you, making usre you're doing everything effectively and properly, fitting it properly, etc. So maybe that's why his patience have good re****s in achieving erection on their own through using this therapy. We already have the osbon pump, so Jeff is meeting with them in a couple of weeks.

Then the dr. said the only thing left to try is injections, which we said we were ready to do. I told him what I had read about caverject causing pain in some of the men on this site, and he said that bi-mix and tri-mix have the same active ingredient, just different mixes and it can be mixed by a pharmacy but will be little more expensive than the predosed caverject. He had some samples, and is starting us at 5 mcg.s, I think? It's the lowest dose on this syringe. He also gave us a prescription to get it by the vile becasue it will end up being cheaper. I guess if it causes pain I will look up Tamu's post about what his dr. switched him to and show that to the dr.

The thing that threw me is that everything I've read here on the site the dr. administered the first dose. Our dr. gave us the samples, showed us how to use the syringe, and for Jeff to inject the side of his penis. I kept asking him specifically how far down, and he kind of pointed to the area. He didn't say anything about positioning or anything, and I remember from the posts here - I think TAmu's, that there's a certain way to do this, and that some docs even have you come back in to do it in their office. Of course Jeff needed to get back to work and we hadn't planned on doing this today, and he couldn't very well meet with his plumbing contrator with an erection, so he was more than happy to try it tonight on our own.

I went to the caverject site and got more info on the proper way to inject this, stretching the penis out, putting pressure on the site etc., but I'm very nervous about this. I'm afraid we'll try one more thing and have it go wrong and Jeff feel like crap again. Do any of you have any suggestions? Has anyone else's doc just sent them home with the stuff to do on their own for the first time? Maybe I'm paranoid, but sticking a needle in a penis doesn't look to be the easiest thing to do, and we don't want to screw it up.

thanks for your help,

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%

Post Edited (2busymom) : 6/19/2007 4:49:27 PM (GMT-6)


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 6/19/2007 10:36 PM (GMT -6)   
Hi Bec!
Our doctor DID the first injection for Bob; however we were then on our own . . with the instruction to go up only 5 increments at a time to a maximum of 50. The entire syringe would be only 1 CC. It wasn't the easiest thing to do for Bob and he had two tries without ever injecting but trying to get the courage to do so. I was beginning to wonder if he'd be false starting forever. It actually took about 3 weeks for him to get the courage to actually stick himself. After that first time he now thinks nothing of it. Just tell Jeff it WILL get easier and the first time is the hardest (pun pun)

Good luck to you both! It is truly worth it!
;o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 6/20/2007 4:11 AM (GMT -6)   

bec,

I am surprised by the new doc not wanting to show you how to do the injection.  I also am surprised that he said that Bimix has the same medication as Caverjet because that is absolutely not the case.  Trimix does have some of the same medication as Caverjet.  Despite all of that what you got off of the Caverjet web site as to how to do the injection is about what you would have gotten from your doc.  My experience is that as long as you inject on the side of the penis about halfway between the base and the head avoiding any visible veins that you will be okay.  Do not stab the needle just slowly insert it all the way in.  Once it is in then slowly push the plunger and then remove.  When I do it I feel the initial poke that is like a pin prick but I do not feel it as I continue to insert it.  I assume that you were given a 1 cc syringe with a 30 gauge needle.  After getting over that first self injection the others come easy.  You will want to try different doses to see what response you get.  I was told to only change doses in .05 cc increments.  I have probably now injected myself 12 to 15 times and only had one flub when I injected myself too close to the base.

While I had a problem with the Caverjet most men do not have any issues with it.  My urologist's PA said that their first recommendation is to use Caverjet because it tends to have a better response and less complications for priapism(an erection lasting more then four hours) and Peyronies( curvature of the penis).  The Bimax that I get cost $50 for a 5 ml vial which gives me about 18 to 20 injections and they throw in the syringes for that price. 

Getting rid of the pump was a blessing and I hope that you find it that way also.

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
No more pads as of 1/13/07
Began injections in April '07


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 6/20/2007 8:50 AM (GMT -6)   
Thanks so much for the responses - I'm sure it will be an encouragement to Jeff. So far nothing we've tried has really been worth the minimal results we've gotten, so I hope this does the trick. He said he's going to try tonight, so we'll know soon enough!

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 6/20/2007 9:27 AM (GMT -6)   
hi everyone, I'm so interested in what is happening with all of you. unless things drastically change in the next few months, I'm going to strongly encourage Jeff to go with injections. I will even print out all of your posts so he can see for himself what your experiences have been. thank you all for discussing this. good luck Bec and Jeff!! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 6/20/2007 10:01 AM (GMT -6)   
Thanks Kat -

It has helped so much for me to be able to share with Jeff the info I find on this site. He's not the research type - that's my job. He's a hard working , easy going type of guy who just kind of takes life as it is and keeps plugging along, thinking things will turn out okay, which they usually do. He's not real proactive, except when it comes to his business. It didn't help that although we liked our first dr. and felt confident with his surgical abilities, he put no emphasis on ed recovery. I'm not totally sure about this neww dr., but at least he seemed very committed to helping Jeff work on this aspect of his recovery. I wonder sometimes if they ever give dr.s classes in the psychological aspects of this disease. For a man to lose control over his sex life is very devastating. Jeff went in to this really focused on the cancer and not on the ed, and then it really hit him harder than he initially let on. If things work out with the injection it would really boost his morale.


bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 6/20/2007 4:12 PM (GMT -6)   

Bec - Jeff sounds so much like my Bob . . . I'm the researcher like you and the ED was the biggest devastation to him.

Remember, the first try may not be the one that's the correct doseage and you guys will have to experiement in increasing increments until you find the correct dose.  Bob's needle only holds 1 CC and he goes up in .05 increments.  We are currently at .25 which works just fine.

So, if the first isn't enough keep on trying. . . . .Here's a funny for you . . .for years Bob has threatened me with a "bean jar" to keep track of our encounters . . which never materialized.  NOW he's the proud owner of a plastic needle disposal which can double as a "bean" ummmmm needle jar.

Good luck you guys . . .keep us posted.

;o) Linda


Cade
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/21/2009 6:45 AM (GMT -6)   
Caverject is fabulous and I have in all cases I found it pleasant to use and have not had any trouble from after effects whatsoever. I always buy the 20ug or 1 Mill pack and after taking the injector from the sealed box I turn the white screw type plunger down which begins the mixing of the distilled water with the powder, after only about 1 minute the solution is ready for injection. Now this is where I use it quite differently than prescribed. I reverse the screw type plunger and jiggle it around until it breakes loose from the injector, in other words I break it away from the injector. After doing this I withdraw the needle from the end of the injector and being carefull as this is where the vial containg the mixture falls out of the injector if your not careful. Once in my hand I then use a diabetic needle to withdraw approx 15cc from the vial and then put the vial into a refrigerator for storage which lasts about 5 days at the most, for Gods sake do not freeze. The 15cc I have withdrawn is then placed under my armpit to warm up before using, about 5 to 10 minutes, this makes the substance warm to body temperature and reduces any pain to a minimum after injecting.
Now for the injection position, this is easy as the diabetic needle has a guage of 32 which is very very fine, now hold your penis by the head and twist it so that the you can feel the uretha easily, this is the tube that your urine flows through, now next to the uretha is a hardish firm area that runs the length of the penis and this is the point which is where the needle will be injected, place the needle on the penis skin away from any major veins and push it in as far as it will go and push the plunger down until empty. You usually know its in the tube as a slight pain can be felt as it goes through the spongy tissue.
The size of the needle is great and generally causes only very minimal pain which is well worth the result. I hold a good erection for about 2 hours and have used caverject for 2 years with no problems whatsoever my willy is a fine speciman and makes me feel like a 16 year old guy again, my wife has never complained and I can tell she love's it by the moans and groans she makes.
Guys, normally you can get three needles filled from the remainder in the vial. If you want or need more for your particular need just use more.
Now one thing that is important, the needle supplied is a thicker guage and can cause bleeding and pain, don't use it unless you really need to, always use the smaller diabetic needle of 32 guage, its so thin and is by far the better choice.

creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 4/21/2009 3:48 PM (GMT -6)   
Hi bec,
Good to hear from you - this is pretty unhelpful but this situation did happen to us too. It was probably the very reason my husband was put off injections completely. Despite the reading here, when he did enquire (at 3 & 1/2 months post op) he was given (without any discussion) a sample (pre-loaded syringe! - he did not even get past seeing how much of it was to be injected - it was huge) in a sterile bag, written instructions (which were very poorly set out), and a video! He never even watched the video. The doctor who he had consulted (supposely a specialist in post-prostate surgery ED assistance) completely put him off and never even showed him how to hold the needle. My husband wanted to do it himself if he did decide to go that path, and eventually his recovery happened anyway, but at the time, this sort of attitude put him off completely - we were very lucky that it did not in the end affect us, but thete was a lot of unnecessary anxiety at the time. Good luck with seeking out all the info you need now. cheers, Lana
Creed_three
Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery (< 0.1) specifically,  
June 2007: 0.01; Oct 2007: 0.02; April 2008: 0.02: Oct 2008: 0.03:
Nov, 2008: 0.02; April 2009: 0.03 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 4/21/2009 5:12 PM (GMT -6)   
Lana, if you are thinking to get a reply back from Bec, it MIGHT be a while, as this thread was dead in the water and 22 months old until Cade brought it back up... turn
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

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