4 months later now trying to get the equipment working again

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Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/28/2010 9:31 AM (GMT -6)   
Back in november I had prostate surgery they used the Davinci robot out of the hospital in three days.
Most everything is normal now no leaking, good control. Last night I tried cialis for the first time did it work No! nothing nada all I got for my trouble was a headache and a runny nose. The headache while mild still exist a day later.  I do want to get things working again but if the aftermath is going to be a headache from the pills, then I am thinking there has to be a better way. Do all these ED pills cause this or is it just the cialis.
 
Scott

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 1/28/2010 9:39 AM (GMT -6)   
Cialis and Viragra both gave me nasty litte headaches...Doc said-> STOP taking them...Then tried Trimix injection that work well for me.
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/28/2010 9:56 AM (GMT -6)   
OK I am new to all this that operation was the first time I have ever been in the hospital in my life.
"Trimix injection" ummm just where is this injected and how much does it cost a wag would be close enough.
 
Scott

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 1/28/2010 10:18 AM (GMT -6)   
Hey Sco ....

Maybe you can add some more info. What was the dose for Cialis ?? 5? 10? 20? Add some info in your signature if you can.

That is too bad about the long duration headache with Cialis since that is the workhorse med to use. I have no aches from any of the ED meds -- but no erections either. Time for Viagra or Levitra? Don't forget MUSE or TRIMIX GEL if you want to play with other options (before Injections).

And a pump ... don't forget the pump. I like the Encore (yeah as advertised on late-night TV) but i use the OSBON ergo rings. They say the Encore is even covered by insurance now -- but are pretty inexpensive anyways. Do some searches on this site for more info.

Keep on, keepin on ...
Age 58, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 01/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09 MUSE@1000mcg +pump&plump - (80-90%) (alpro ache).
09/09 MUSE@500mcg +pump&plump + 2 advil - (80-90%) - (less Alpro ache).
10/09 TrimixGel@(500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% --
12/09 MUSE@500mcg+Cialis@20 working well (>90%) and useful erection.
01/2010 TrimixGel@1000/300/100mcg ordered for one more try:


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/28/2010 10:29 AM (GMT -6)   
Consider ibuprofin, as recommended by my doctor. Check with your doctor.

What I started out doing was proactively taking 2 ibuprofin tabs within an hour before taking Cialis, or at the same time. I would take another couple of tabs several hours later, or the next morning. This took care of any headaches for me. Over time, my body has apparently adapted because more recently I have been forgetting the ibuprofin and have been experiencing much less headache (without ibuprofin) than initially experienced. If I remember, I still do take the ibuprofin proactively.

Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/28/2010 10:30 AM (GMT -6)   
The dose was 2 10 mg tablets
 
Personal info not real big on this type of info just know the basics
Age 61 last PSA 0.1

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 1/28/2010 10:45 AM (GMT -6)   
Scojen
You are not that far off from surgery so maybe with time the meds will be more helpful. I broke a 20mg Cialis in half this last weekend and for the first time I didnt have a horrible headache on any kind of ED med. No full erection yet, so will just keep trying as often as possible. I have to stay hopeful and enjoy what I can do in the romance dept.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 1/28/2010 1:32 PM (GMT -6)   

Scojen,

The purpose of the ed pills is because it has been shown that you get better recovery by employing the 3 "P"s as I heard it referred to me. Pills, pump, pricks - as in injections.They prescribe cialis at a half dose because it has a longer effect - as in a day and a half and you don't need the full blast for therapy. I started with that and also use others such as levitra, viagra etc, which are 4 hour gigs. I'm not really bothered by side effects, but I have found one from overseas is Eregra. It is a viagra generic and it doesn't have the side effects as well as being way cheaper. I was taking it before surgery as I have plaque (atherosclerosis) from high cholesterol.

Don't expect results immediatly. I am 3 months out and don't have a reaction from ed pills or a nominal reaction. The purpose is blood flow into your region to prevent atrophy to your chambers that cause an erection. You may want to also entertain a vacuum pump, and then injections. All of the stats point towards better results with agressive therapy. I do all three.

I hate saying this as I have none, but you have to be patient. Half my nerve bundles were taken so that reduces the probable outcome, but it won't be for lack of effort or putting the best odds in my favor.

This forum should have tons of info on the subject for you. As I have found out, and with great resources like this one, there is no one way, and each guy's recovery is different.

Keep the faith.


PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable
Continance: Night and morning fine; mid day onward still not there yet.
Trying Trimix


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/28/2010 4:35 PM (GMT -6)   
Welcome to HW. Here's a link to tell and show you what Trimix injections are- where, how, etc. Enjoy... smilewinkgrin

www.infertility-male.com/erectdys/injxn1.htm
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
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/29/2010 9:01 AM (GMT -6)   
Thanks for the information about the Trimix injections while it is probably no big deal the thought of an injection down there causes some apprehension on my part. The problem I am dealing with now is waiting for the Cialis to wear off. I have had a headache for the last 36 hours and the usual meds for a headache have done little or nothing to alleviate the nagging headache I have. It has to be the Cialis causing the problem. The runny nose stopped yesterday but this mild headache is ruining my concentration. As someone who sits in front of a computer all day doing computer aided design and computer aided machining its making things a real chore and a really long day. Oh well it has to wear off soon.
 
Scott  

zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 1/29/2010 9:09 AM (GMT -6)   
I'm at 11 months post surgery. The pills did nothing for me but headaches, but there was just a bit of improvement daily. After a round of 'just in case' radiation in months 6 through 7 I was back to square one. My doc insists on tyring the least invasive route first. Now it'll be a VED and MUSE (which does give hope), either together or separate. I wish I'd have started the VED 6 months ago.

Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/29/2010 9:16 AM (GMT -6)   
Zampilot,
 
Abbrevations ? "VED and MUSE" mean absolutely nothing to me can you elaborate.
 
Scott 

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 1/29/2010 9:30 AM (GMT -6)   
Sco,
 
Whenever you can't fathom an abbreviation just look in the 'Abbreviations'  topic up at the top of this forum ...  or just plunk the abbreviation into  the SEARCH tab for this website ...  or even just Google it ....    (and why do we need such a big word to describe Abbreviations  anyways ???)
 
Have at it and report back!
 
 
Age 58, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 01/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09 MUSE@1000mcg +pump&plump - (80-90%) (alpro ache).
09/09 MUSE@500mcg +pump&plump + 2 advil - (80-90%) - (less Alpro ache).
10/09 TrimixGel@(500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% --
12/09 MUSE@500mcg+Cialis@20 working well (>90%) and useful erection.
01/2010 TrimixGel@1000/300/100mcg ordered for one more try:


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/29/2010 9:46 AM (GMT -6)   
VED= vacuum erection device- penis pump
MUSE- brand name of a type of erection drug that is inserted into the urethea to produce an erection. (see Alprostadil)
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
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 1/29/2010 1:17 PM (GMT -6)   
Scojen,

You must be way sensitive to cialis. Switch to another such as viagra or levikra or you can order a generic as I did Eregra, which is made in India. It has far less side effects and is about $4 per pill as opposed to 12$ and up for levitra. You want to get action going per the pump or injections generally after 2/3 months from surgery as it gets things going. I am staying with it per all three and will remain hopeful. What helps too is at least you are doing something to accelerate any potential progress. It is as good for the mind as it is for the hydraulics. A friend of mine had robotics and after 4 months still nothing, but he hadn't done much as his doctor was not in tune to discussing it. He too couldn't stand the headaches. He established his own program and is doing well. Now he uses caverject and like it for the most part.
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable
Continance: Night and morning fine; mid day onward still not there yet.
Trying Trimix


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/29/2010 2:11 PM (GMT -6)   
First, each of the three main ED drugs can be different with respect to side effects as well as having different effectiveness in any particular person -- so it is probably worth trying them all.

As people have been telling you, nerves heal very slowly and so three months doesn't necessarily represent as good as it will get. A common approach to penile rehabilitation is daily (or almost daily) low doses of an ED drug combined with the use of a pump. The point is not to expect to get hard enough for penetration but to keep the circulation going down there. There are a lot of posts abut this topic on this board. On the other hand, some docs say just wait and see.

As far as injections are concerned there is also a lot of advice here. The first time you hear about it it sounds very frightening as in -- you want me to push a needle in where? Some guys want to get back in action as soon as possible and start at about where you are now, others think of it as a last resort and wait much longer. I am nine months out and still no erections but not quite ready to take the plunge with the plunger.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 1/29/2010 2:20 PM (GMT -6)   
Keep in mind that Viagra, Levitra and Cialis have no generics and won't for about 10 years. However there are copycat rippoffs of unknown chemistry avail outside the USA.

Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 1/30/2010 8:09 AM (GMT -6)   
To Zampilot:

Sorry Zam, IMHO you are factually inaccurate about generics for the three ED's. I use one called Eregra and it has has far less side effects than the others and prior to pc works great. It costs about a 3rd less. The scare tactics you hear are simply to discourage you from buying as effective or cheaper brands. Put it this way...so the rest of the guys on the planet...namely how many billion of them with ed issues, are only going to use ed's made in the US. There are dozens of countries whose pharmaceutical capabilities easily match the US. Take India for example.
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable
Continance: Night and morning fine; mid day onward still not there yet.
Trying Trimix


zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 1/30/2010 9:23 AM (GMT -6)   
There are no generics, but there are different recipes!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/30/2010 9:38 AM (GMT -6)   
More correctly, there are no generics sold in the USA. Viagra is sildenafil citrate, Cialis is tadalafil, Levetra is vardenafil. These are the generic chemical name of the brand names. All three are sold all over the world, as unbranded, generic brands, seperate from the USA brand names of Viagra, Cialis and Levetra. The largest manufacturor of the unbranded ones is in India, where they are manufactured to international drug safety standards. We tend to forget that the rest of the world manages to live in safety and health daily by using non-USA brands of drugs. So yes, there are generics for the big 3, and yes, they are not sold in the US, due to drug patents. But they available for purchase and shipment to the US, if one wishes to risk confiscation and wandering into grey areas of international and US law. It's an individual choice each must make.
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
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/30/2010 11:46 AM (GMT -6)   
James C. said...
More correctly, there are no generics sold in the USA. Viagra is sildenafil citrate, Cialis is tadalafil, Levetra is vardenafil. These are the generic chemical name of the brand names. All three are sold all over the world, as unbranded, generic brands, seperate from the USA brand names of Viagra, Cialis and Levetra. The largest manufacturor of the unbranded ones is in India, where they are manufactured to international drug safety standards. We tend to forget that the rest of the world manages to live in safety and health daily by using non-USA brands of drugs. So yes, there are generics for the big 3, and yes, they are not sold in the US, due to drug patents. But they available for purchase and shipment to the US, if one wishes to risk confiscation and wandering into grey areas of international and US law. It's an individual choice each must make.
I have to admit, as a businessman the idea of buying illegal generic formulations of erection drugs causes me a frisson of ethical discomfort. I think US companies deserve the patent protections afforded them by US law.

On the other hand, as a family man, with limited income, I can probably overcome those frissons.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 "panty liner"/day, with minor leakage when I get up from long seated position
ED pretty complete: some erection possible but current non-functional


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 1/30/2010 10:19 PM (GMT -6)   
Not to split hairs on this, but obviously as with levitra and V and cialis, there are variations on getting things accomplished. Same with overseas and it isn't a patent infringement more than it is blatant protectionism. I have never had a problem ordering from overseas and don't foresee one. Frankly it is no different than buying camera equipment in Hing Kong, where you can buy it for a lot less. IMHO. Enough said, but there are alternatives to the big three, and they work equally and/or better frankly.
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable
Continance: Night and morning fine; mid day onward still not there yet.
Trying Trimix


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/30/2010 10:57 PM (GMT -6)   
For Viagara, Cialais, and Levitra, there are large profits for the poor drug companies. $12.00 for Viagara pill , come on !

For every thing else there is Mastercard. India, here I come.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10


zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 1/31/2010 6:54 AM (GMT -6)   
Protectionism? No, it's called Patent Law. And the cost depends on your insurance company and how they rate ED drugs (recreational or therapy?).
Maybe it's getting their R+D money back on THEIR PATENTED product. If you don't care about that, maybe the drug companies shouldnt have bothered with ED drugs, knowing they wouldnt see a return, in that case the non-USA chemists wouldnt have had anything to copy in the first place. Pay your money and take your chances.
Scojen, get a sample pack of each from your Doc. If you have side effects, go with the pump and/or MUSE, they work.

Scojen
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 3/1/2010 2:44 PM (GMT -6)   
A short update, Got a pump some rings etc. it hurts to use the pump I do get expansion but it feels as if it is sucking my insides out just short of having a hernia (I had that operation about two years ago). Rings forget those extremely painful just to put on one tried the biggest in the pack same conclusion. Dare I say it tried ********** got the sensation but no enlargement. The sides of my penis at the base are still sore for whatever reason. Thinking of taking up hunting again but there is no open season on Doctors who won't talk for five minutes next appointment will be different taking baseball bat.
 
Frustrated,
 
Scott  
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