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James C.
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Date Joined Aug 2007
Total Posts : 4463
   Posted 5/16/2010 7:38 AM (GMT -6)   
In another thread, she said:

I read with interest all your postings on what you all have gone through and are still going through. My husband had a steady increase in PSA over 4 years at first opting for wait and see, then choosing surgery as lots of promises made by surgeon,WHY DO WE TrUST SO< I can answer myself ,because we have to.Things are slow in recovery,as much as we try "things dont work like it used to and at a young 55 this is frustrating depressing etc etc.Tablets dont work Cavaject next.GP says dont expect me to show you how to use it. WHY DO WE TRUST because we must.


Sorry you have to be here. If your GP is refusing to demonstrate how to use injections, there are several learn as you go sites on the net. It isn't that difficult to do. The first time is the worse, just getting up the nerve, but it does gets easier fast. If you or he neds to consult or learn the process from anyone here that knows how, just ask.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


Sephie
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Date Joined Jun 2008
Total Posts : 1804
   Posted 5/16/2010 8:20 AM (GMT -6)   
Notae2, I too am sorry that you have to be here and sorry that your GP won't help your husband with the injections. 55 is young to be dealing with ED but many guys (my husband included and he's just a couple of weeks shy of turning 60) is copying with it as best he can.

How was your husband's surgical pathology report - and how long ago was the surgery? ED recovery can take quite a while (but not all men experience ED or incontinence after surgery).

Let us know how you're making out ... we're here for you and your husband.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/16/2010 9:29 AM (GMT -6)   
notae2,

welcome to HW Prostate Cancer, glad you found our small corner of the world. Sorry your husband has PC, and went through surgery. There are so many variable with and and after surgery, there's no way of knowing ahead of time what you will really be dealing. I know about the slow recovery, my own journey is still ongoing and is very frustrating at times. Some men deal endlessly with incontinence, others with ED, some with both, or other issues.

you and your husband are most welcome here, and I hope you stick around and keep joining in. ask all the questions you want, no such thing as a dumb question.

david in sc

________________________

James: When you extract a new person like this, why don't you extract those that already posted to the new person from the original thread? I replied the second I saw the new poster, but my reply was left behind in the other thread.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/16/2010 11:57 AM (GMT -6)   
David asks:

James: When you extract a new person like this, why don't you extract those that already posted to the new person from the original thread? I replied the second I saw the new poster, but my reply was left behind in the other thread.

Ha, David, I can do that, if there's a great need and I have the time. It would be a simple to complex cut and paste, depending on how much time I have for it. In this case, the poster had a good question, seperate from the original subject of the thread she posted in and I wanted to seperate it out. Sorry I missed your and others replies to her, I was rushed this morning when skimming thru the Forum.

Of course, you can always copy and paste your reply from one to the other and delete your post there , if you wish... smilewinkgrin devil wink
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/16/2010 12:01 PM (GMT -6)   
In the other thread, Purgatory answered:

notae2,

welcome to HW Prostate Cancer, glad you found our small corner of the world. Sorry your husband has PC, and went through surgery. There are so many variable with and and after surgery, there's no way of knowing ahead of time what you will really be dealing. I know about the slow recovery, my own journey is still ongoing and is very frustrating at times. Some men deal endlessly with incontinence, others with ED, some with both, or other issues.

you and your husband are most welcome here, and I hope you stick around and keep joining in. ask all the questions you want, no such thing as a dumb question.

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, no problem post SRT
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: July
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 same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/16/2010 12:01 PM (GMT -6)   
In another thread, BillyMac answered:

notae,
Welcome to the forum ........ you'll find great information here and many members anxious to help. Don't worry about the occasional little dust up......it helps clear the air every now and again.
Many surgeons will gloss over some of the effects of surgery. I think many of them truly believe surgery is the best option so don't want to put a prospective patient off treatment. If your husband is not long past surgery recovery from ED and some incontinence can vary. There are many stories here of recovering from after effects up to 2 years post surgery. Many members here with detailed knowledge on how overcome the effects of surgery, including the use of injections. I wouldn't press your GP too much with help for the ED.........their knowledge is usually not detailed. It would be well worthwhile seeing a doctor who specializes in this area..........most of these really know their stuff. Caverjet can be an expensive way of overcoming ED. Caverjet is basically an automated injection system for what is known as trimix. It can be purchased much cheaper by buying as an injectable solution from a compounding pharmacist. It is usually injected using diabetic needles. Trimix has been known to cause some discomfort in some members though. In this case one of the ingredients can be left out (now it's known as bi-mix) which usually proves to be just as effective. The trick is in working out your best dosage which means starting from a low level and building up till it's just right. Any questions ----don't be bashful-----you'll be swamped with answers and tips.
Bill


Biopsy
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment: [/color]
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct '07 <0.1 undetectable
PSA Jan '08 <0.1 undetectable
PSA April '08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August '08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September '08 <0.01 (new lab)
PSA February 09 <0.01
PSA August '09 (2 year mark), <0.01
PSA December '09 <0.01 PSA May '10 <0.01


www.yananow.net/Mentors/BillM2.htm


Never underestimate old people ............ you don't get to be old by being stupid.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/16/2010 12:48 PM (GMT -6)   
notae2, here's some more info that address you concerns about ED and injections.

Here's a post I made sometime back, sorta an overview of the whole injection process. Maybe some of it will pertain to your problems.

Injection drugs are obtained by a doctors prescription and must be filled by a specialized pharmacy- an compounding pharmacy- which mixes the drugs to be used. There are 3 types of drugs- Caverject (alprostadil), Bimix and Trimix. Alprostadil is a a single drug, bimix is a mixture of papaverine and phentolamine, usually in the strengths of 30mg papaverine/1mg phentolamine when written on the prescription. Trimix is the same as bimix, with the addition of alprostadil to it, and usually written as 30mg/1mg/20mcg, the 20mcg being the alprostadil. In listing strengths, the alprostadil is the strongest and seems to obtain the most effective result. It is also the most expensive and lots of guys have problems with both aching, pains and piraprisms (SP)- erections of longer than 4 hours. Trimix is the next strongest and results in very good erections, with much less chance of the aching/pain and the 4 hour hour erections. Bimix is the llowest strength of the 3 , but seldom gives the aching/pain or the 4 hour erections. Dosing sizes of Trimix is usually much less than Bimix, so it takes much less to get the same result, however it does seem to have a chance of giving more troubles with aching/pain and the problem erections.

Most doctors will begin the injection treatment with Caverject (alprostadil) injected in the office to get a baseline of what is needed and to teach the man how to inject. Some men have a bad experience with this, as the alprostadil is usually injected at a much higher dose than needed, which creates the aching/pain and the over 4 hours erections which we hear about once in a while. It seems doctors have a set formula of what they are taught to inject and that isn't always the best. If it works in the office, he will usually send the patient home with a prescription for alprostadil and further instruction on how to use it. It seems that most doctors don't begin with Trimix or Bimix, unless they are dealing with an educated patient who can ask for, explain why, and can advocate for themselves trying something different. I am fortunate to have a doc who will deal with me on an equal basis and is willing to try what I suggest with different ratios of strengths to dial it in for me. I feel that a man who is starting injection therapy should begin with either Trimix or Bimix, rather than alprostadil, as the chances of a ache/pain free experience will have him much more willing to continue. The physical act of injecting is simply pain free for me now, but it took quite a bit of repetition and experimenting to reach this state. Once a guy begins injecting, he needs to keep at it, experimenting and dialing in what he needs to get the best results with the least amount of drug or trouble.

As far as technique, its simple, actually. Use the least diameter needle, usually a 5/16" 31 ga. insulin syringe, and inject into the penis midway between the head of the penis and the body, at the 9 or 3 o'clock position. A little milking motion of the penis will help open the cavernous cavities a little, so the drug cane be deposited into the space. A little massage and the erection should begin, usually within 5 to 10 minutes, and if enough drug is injected and adsorbed, results in a penis erect for an hour or so. That's the idea goal. It can vary. Done right, with practice, the injection can and will be painless for most guys. There's no reason to think you would be any different. I don't combine by injections with other items such as pills or pump, but some here do. I, and several other guys, use what I call a pre-plump method to ensure successful injections. It begins with a penis pump, if you have one, and a penis ring. You can accomplish nearly the same thing using a milking motion to fill the penis with blood, and a regular rubber band. Using the pump, obtain a partial- maybe 30%- erection and apply the ring. This engorges the penis with blood, opening the cavernous cavities and filling them with blood. Then inject into this expanded cavity. Imagine injecting into an uninflated balloon, and putting the drug into the inside, versus injecting into a partially inflated one. That's what is being accomplished with this method. When injecting, you can easily tell when the needle point enters the cavity, as the resistance will drop and the needle will feel like it has 'fallen' into it. Inject and very lightly massage the penis, the purpose is to spread the drug around and ensure optimium adsorption of the drug. Keeping the ring on for 3 or 4 minutes holds the blood (and drug) inside and lets it have the best chance of being adsorbed. Continue to gently massage the penis and the drug around for 3 to 4 minutes, then remove the ring- the blood will most likely run back out of the penis, until the erection begins. You should get the drug induced erection in 5 minutes or so. Most of us who use this method find we can use much less drug, we can control results more consistently from one time to the next and reduce the chance of priaprisms.

Yes, once in a while we will have guys here have a bad experience, resulting in a 4 hour erection and a trip to the hospital or doctors office. It's traumatic, of course, but frankly still part of the risk of using injections. The draining of the penis blood was sorta overkill, IMO, usually the penis is injected with epenephrine(SP) or such, which counteracts the penile injection drug. I have only had one over 4 hour erection, I relieved it with Sufafed, rathert than a hospital visit. That was the first time I self-injected, it was alprostadil and it was the doctors recommended dose, which was 3 times more than I found I needed.

There's several excellent websites with great instructions on the process, and we can look at them later, when you are ready to start the injections.

This is a general overview of the process, stressing they general or average, or normal process and results by the majority of the guys here, to give you a general look at the normal experience and answers to your questions.

Here's a few links to a posts that will contain some research info for you to continue your study:
www.healingwell.com/community/default.aspx?f=35&m=1347869&p=1
www.healingwell.com/community/default.aspx?f=35&m=897291
www.healingwell.com/community/default.aspx?f=35&m=1062508
www.healingwell.com/community/default.aspx?f=35&m=1115024
www.healingwell.com/community/default.aspx?f=35&m=1022627&p=1&ord=d
www.healingwell.com/community/default.aspx?f=35&m=1069182
www.healingwell.com/community/default.aspx?f=35&m=1110785
www.healingwell.com/community/default.aspx?f=35&m=992063
www.healingwell.com/community/default.aspx?f=35&m=1285932
www.healingwell.com/community/default.aspx?f=35&m=1072323
www.healingwell.com/community/default.aspx?f=35&m=1274734&p=1&ord=a
www.healingwell.com/community/default.aspx?f=35&m=106647[
www.healingwell.com/community/default.aspx?f=35&m=767571
www.healingwell.com/community/default.aspx?f=35&m=1012934&p=1&ord=d
www.healingwell.com/community/default.aspx?f=35&m=897291
www.infertility-male.com/erectdys/injxn1.htm
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 5/16/2010 6:15 PM (GMT -6)   
All,
After reading the above post from JamesC I think we can all agree he deserves a round of applause!

Notae2,

Sorry things are not working out as the rule book says. I think docs overstate the good success rates so the men will get into the car and drive to the hospital. If I had known I'd be leaking and have ED I might not have gone! I'd be writing this from Tahiti. ;-)

If you need help figuring out where and how to do the injections there are some good sites that show the nitty-gritty. Franktalk.org has collected some videos. I must admit they are a little tough to watch - for all sorts of reasons. (Watching an injection is tough, but looking at where it is going really gave me the willies.) It is informative though - and the injections work.

Stick around and feel free to lurk. Both of you will learn a lot. I know I did.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 9 months? Mtg 5/22.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 5/17/2010 2:41 AM (GMT -6)   
Welcome Notae 2

Good luck, sorry I can't offer any help on the injection front as I haven't had to use any needles etc.


(And well done James)

James:
To save you all the 'cut & paste' you've just done when you separate out these new folk this way and write "in another thread xxx said..." why not just paste the link to that other thread.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/17/2010 9:30 AM (GMT -6)   
Alf, mainly because using a link only spreads an already involved thread, in this case, a controversial one. If I have to do it, I think I prefer the copy/paste, as it doesn't spread the sometimes 'bad' part of the original thread with it, thus infecting 2 or more threads. Do I make any sense at all? tongue
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 5/17/2010 9:51 AM (GMT -6)   
James: you make sense
Alf
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