READY FOR BETTY

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mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 2/15/2010 8:15 PM (GMT -6)   
The 2 year mark is coming up, but junior is still asleep. Pills and pump NG. I have been using AndroGel once a week or so just to keep the boys in the ball game, but I don't think the one nerve bundle left is going to re-connect.

An implant is absolutely out, I'd rather retire. The plumbing works, but who knew it would with a flat tire?

I'm thinking tri mix, but my Doc is an implant freak and I'm not sure he would know the proper mixture. Can I just suggest one to him, or do I have to go through trial and error and end up with a 5 hour headache?

Hello to all the gang, I'm still here, just watching a little quieter.

My best to all,

Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR ANDRO GEL
PSA 6/15 O.01 UND. TESTOSTERONE 217
PSA 9/15 O.O1 UND. TESTOSTERONE 144


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/15/2010 8:37 PM (GMT -6)   
Billy, My Uro is also an implant freak. He kind of went nuts when I asked about Tri-Mix. I went looking of a new Uro. The one I found uses Caverject...All I can say is Yahoo for the new Dr.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 2/15/2010 8:45 PM (GMT -6)   
My doc won't freak, but I'm not sure he knows the different mixes. Isn't Caveject a specific mix?
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR ANDRO GEL
PSA 6/15 O.01 UND. TESTOSTERONE 217
PSA 9/15 O.O1 UND. TESTOSTERONE 144


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/15/2010 10:37 PM (GMT -6)   

mlbsm, Caverject is just alprostadil.  That is one of the drugs in Tri-Mix.  Some guys have what is called Alprosiadil ache. I am one of the lucky ones that It does not do that to. 

Good luck.  If you have specific questions you can e-mail me.

Jeff T

Cajun Country


Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/15/2010 11:04 PM (GMT -6)   
Billy,

Nice to hear from you. Your long line of zero's is getting pretty impressive. Sorry you are still having the ED issue, but looks like there are still posibilities to you, i.e. Jeff's advice above. Hope you find an answer for that too.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/16/2010 11:02 AM (GMT -6)   
Quick primer on injection drugs:

Caverject (Alprostadil) is a one drug injection drug. It is usually prescribed in either 20mcg. or 40mcg strengths. This is usually 20 or 40mcg of the drug in 1 ml of sterile water. Most of the time, it will come in powder form and you have to add the sterile water to each vial to mix it. Not a big problem. Jeff and I are both proficient at that. Most patients begin with a 31 guage insulin syringe, 5/16 inch needle, and using .05ml or 5 insulin units measurement on the syringe of the Caverject. From there, it will probably take some adding or subtracting to the dose to find an ideal tradeoff between firm erection and less than 4 hours erection. Note that the 40mcg Caverject is twice as strong as the 20mcg, hence it will take half as much as the 20mcg for the same effect--usually. It's better to start low and work up, and you can expect failures at times along the way. All part of the process. Most guys here report they are unable to tolerate the aching and pain of the drug, and move on to Trimix or Bimix.

Trimix is a 3 drug combination of papaverine, phentolamine and alprostadil, usually written as 30/1/20 or 30mg papaverine/1mg phentolamine/20mcg alprostadil. That's the information as it is written for the prescription. As with the Caverject this 3 drug combo is mixed with 1ml of sterile water, but the difference is it has to be bought from a Compounding Pharmacy with a doctors prescription. Cost is around $100 per 5ml vial, give or take ten bucks or so. Doseage usually begins at .10ml or 10 insulin units on the syringe for most first time trials. At 10 units per shot, you will get 50 shots from the 5ml. vial. So the cost is $2 per dose. From there, you add or subtract, again looking for the happy medium. There is a chance of a much reduced ache or pain from this mix, and it doesn't give as immediate and/or or strong erection in some cases, but it's advantage is the slight kick of the aplrostadil with the reduced ache. Refrigerated shelf life varies from 3 months to a year or more, depending on who you are listening to.

Bimix is a 2 drug combo, consisting of 30mg papaverine/1mg phentolamine per 1 ml of sterile water, again mixed by a Compounding Pharmacy. Cost is around $50 for a 5ml vial of it. The usual starting dosage is .10ml or 10 insulin units, and probably working up from that. The advantage of Bimix is the absence of Alprostadil, the tradeoff is it is less effective in a lot of cases, hence it takes more drug to produce the same results. I'd estimate most guys end up using on average a .2ml dose, as opposed to probably an average .05ml dose of Trimix. Like everything else, there's exceptions in both directions. I have to have .30ml/30 units of Bimix or .10ml/10units of Trimix for an equivilant response. Shelf life is the same 3 months to a year.

Injecting and the various techniques for best results is material for a post by itself, so if and when you ned to get further into it, let us know. Summerizing, Caverject is the strongest drug, with the best chance of successful erections, but with the cost of about $10 to 20 per injection, increased chance of pain and aching enough to make you swear off it forever, and a chance for priaprisms lasting over 4 hours. Trimix is still strong, but you do have a chance of the same pain and aching, but probably at a reduced elvel, tolerable for most guys, considering they are geting a strong erection from it. Bimix is the least likely to produce pain, aching or priprisms, but it will probably take more and the erections may not be as firm as from the other 2. Again, it varies from man to man. In any of the 3 drugs, the first injections is made in the doctors office for instruction, usually after that you do them by yourself at home.

If you decide to push your doc for a prescription, I've given you the info that is needed for the first prescription , so he can write it,

Again it would be either 20mcg or 40mcg Alprostadil for CAverject per 1ml vial, common quantity is 5ml. Trimix would be 30mg Papaverine/1mg Phentlamine/20mcg Alprostadil per 1ml, quantity dispensed being 5ml. Bimix would be 30mg Papaverine/1mg Phentolamine, per 1 ml, dispensed in 5ml quantity. Some guys have different ratios of the drugs, but these are the 'standard' ratios that are recommended by most ed doctors. Hope this primer is helpful...
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

Post Edited (James C.) : 2/16/2010 10:08:28 AM (GMT-7)


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 2/17/2010 10:11 PM (GMT -6)   
Thanks to all, and especially James for the pharmacy stuff.

My doctor is not a fan of healing well, he seems annoyed anytime I make a suggestion that comes from here.

Then again, he tell's me he saved my right bundle, but how would I know if he really did.

He automatically told me he was taking the left bundle up front, and that I did not understand. How could he know he couldn't save it before he saw it?

I'm not looking forward to the needle being the chicken I am, but fortunately, ML is an RN and is eager to start sticking.

I'm going to ask for the tri mix based on all the discussions I've read on this board and now backed up by James.

Again, many thanks people, all is well here, and hello to Frank, James, Tony, Purgatory and all the
seniors.

My best,

Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR ANDRO GEL
PSA 6/15 O.01 UND. TESTOSTERONE 217
PSA 9/15 O.O1 UND. TESTOSTERONE 144


LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 2/18/2010 9:17 AM (GMT -6)   
Does medical insurance pay for Caverject?
Len
Age: 65
DX: 7/10/09
Gleason: 7
Biopsey: 2 chips with some cancer cells out of 30.
Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09 <0.1
2nd post op PSA:  1/25/10 <0.1
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2010 9:49 AM (GMT -6)   
Mine- BC/BS of TN did, but wouldn't pay for Tri or Bimix ,,,go figure
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2010 10:01 AM (GMT -6)   
Billy, first, congrats on getting this far in your recovery.

Second, I think I would consider a little heart to heart with MY urologist if he displayed irriitation, annoyance or any other emotion other than support and understanding to me. My health and recovery must take center stage, not his sense of being in charge and resisiting change and being the only outlet for info. for you. But that's just me.

Third, if you have a GP or Family Practioner, they can write that same prescription. Or another urologist, or even a ED specialist, if one is in your area. Uro's aren't necessarily the best source of ED recovery help and info. I know I have had to guide and educate mine as we have gone along. He has been practicing 30 plus years and it is amazing just how little he knows about ED, beyond the routine get 'em a pump, give 'em Caverject. I have had to advocate for myself in geting trimix and bimix, in various strengths, while searching for the right mix for me. Fortunately, my uro is interested and willing to learn and adapt his routine care to new ideas. He now understand there are other things to try, various type pumps, the different injection drugs available now. Hopefully, the guys who follow me with him will profit from his new learnings.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/18/2010 10:54 AM (GMT -6)   
Len I have BC/BS and it did not cover caverject. They call it recreational drug.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 2/19/2010 10:36 AM (GMT -6)   
Yeah, we all became eunuchs so we could go out and buy toys to play with.

James,

I have a GP who pretends we're all a-sexual. He's a great guy, but mention sex and he immediately changes the subject.

I leave Juniors problems to the Uro, and have to pretty much tell him what I want. He's into sticking a hydrolic jack in there, and that just isn't going to happen.
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR ANDRO GEL
PSA 6/15 O.01 UND. TESTOSTERONE 217
PSA 9/15 O.O1 UND. TESTOSTERONE 144


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/19/2010 3:13 PM (GMT -6)   
Well, personally, given the choice between a little prick and a sliced and stuffed penis, you can bet the prick pain, such as it is, is what I am gonna do Those long term recovery from penile implants really give me the willy's. Then again, the thoughts of the prick did the same, before I got desperate enough to try them... shocked So, I better not leave any options out, I suppose. cool
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

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