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Thread: Update and ED Question

  1. #1
    Senior User
    Join Date
    Nov 2012
    Posts
    273

    Update and ED Question

    So here I am 6 years after Da-Vinci Robotic surgery. After the surgery things went well for a couple of years. I was using low dose Cialis and wasn't having to much of a problem with it and suddenly I got the pains that seems to go with it. I switched from low dose and tried 20mg just one time and that was enough. The pain was worse and lasted about 5 days. So switched to Viagra 50mg and that went a little better until about a year ago and now it is no longer tolerable. I get severe indigestion that lasts for 2 or 3 days and the plugged up sinuses that goes with Viagra. Now for what it is worth I have an appointment with my urologist in early April and will see what my next course of action will be.
    I guess my question is: What are some of the other meds you may be using and what are their side effects. Looking on the internet there are some new meds out there and there are also injections and suppositories. Some of them list the side effects and some don't, I'm just trying to learn what to expect in the future.
    Age: 65 / At surgery
    10/01/12 PSA 5.7 & climbing
    10/25/12 Transrectal biopsy / results T2 b/c Score of 3-4 & 4-3 / Gleason Score 7
    10/28/12 Consultation with Surgeon Dr. Vipul Patel (8,000+ surgeries) for Da-Vinci Radical Prostatectomy (my choice)
    01/11/13 Da-Vinci Prostatectomy, Florida Celebration Hosp. (above surgeon), Cancer confined within prostate capsule & none found in margins or lymph nodes.
    02/26/13 PSA test <.01
    06/11/13 PSA test <.01 and Testosterone 510
    09/09/13 PSA test <.01
    01/15/14 PSA test <.01
    07/21/14 PSA test <.01
    07/28/15 PSA test <.01
    02/02/16 Quadruple Bypass Heart Surgery
    06/28/16 PSA test <.01
    03/18/19 PSA tested yearly and to date still <.01

  2. #2
    Senior User
    Join Date
    Jan 2019
    Posts
    182
    There is Lavitra, but the side effects seem the same as the 2 you mentioned.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years )

    1/2/19 Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laproendoscopic Single Site Surgery) outpatient Cleveland Clinic, Dr Kaouk.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present.

    First PSA 3/27/19. .03

  3. #3
    Experienced User
    Join Date
    Jan 2018
    Posts
    72
    I'm 10 months out from surgery. Still full ED.

    I have generic Viagra (sildenafil) in 20mg tablets. It does nothing for me other than give me a stuffy head, and a headache and a general feeling of malaise for 6 or 8 hours. If I take 60 mg its not so bad, but 100mg usually is not fun at all...also it doesn't give me an erection. So my Dr had me try Cialis. The 20mg one made me more ill than Viagra and also didn't work. Half of a Cialis made me feel terrible too.

    Injections: They work great for me, maybe too good. I have been on a trial and error routine to find the right dosage with them for about 2 months. At first I had to increase the dosage to get it to work good, then it was too good -- like the erection was too hard and for too long. Then I backed off the dosage continually, where now I get good erections but still they last too long (3-4 hours)...so my Dr. thinks that I am healing and that is why I keep having to decrease my injection dosage. Giving yourself injections (of Trimix or Bimix) is not fun, but tolerable. The goal I think is to get a good usable erection that lasts around an hour. As for my experience so far, there aren't any side effects. There is some prep time: you have to store the Trimix or Bimix in the freezer or refrigerator. I store mine in the freezer. it only takes it about 15 minutes to thaw. Then you have to put it in the syringe and prep the area with an alcohol wipe and then give yourself the shot. Takes me about 10-15 minutes to get a full erection. So far I haven't had one that lasted under an hour. I'm telling you this because if the pills will give you an erection, then you probably don't need much dosage of the shots. The Drs don't recommend this, but I have seen on the franktalk message board that some people will mix them...a little Viagra and a small dosage of the shot. Whatever you do, if you decide on the shots, you must go to the pharmacy and buy psuedoephidrine (PE)-- the plain PE that comes in 30mg tablets -- NOT the extended release versions...PE acts as an antidote to the injections if your erection is going on past 2 hours.

    I know nothing about the suppositories.
    diagnosed at age 55
    PSA 4.5 (8-24-2017)
    Biopsy 12-18-2017
    7 of 12 malignant
    3+4=7 (70%) right apex
    3+4=7 (95%) right mid
    3+4=7 (20%) right base
    3+3=6 (20%) right lateral apex
    3+3=6 (30%) right later mid
    3+4=7 (90%) right later base
    3+3=6 (30%) left lateral mid
    RALP- May 14, 2018 - Johns Hopkins, Dr Pavlovich
    Post op pathology: Gleason 3+4=7, Grade Grp 2. 10% Pattern 4
    pT2
    Max tumor dimension 18mm: pretty much in ALL zones but organ confined
    Lymph Nodes (3 right and 8 left) negative.
    Seminal Vesicle invasion: none Margins: negative
    Prostate= 52g, 4.3cm x 4.5 x 4.3
    Catheter out 9 days later May 23, 2018
    6 week PSA = 0.00 (July 7, 2018
    5 month PSA = 0.00 (Oct 15, 2018
    7.5 month PSA- <0.014 (different lab this time - Jan 3, 2019) 9.5 month PSA <0.014 (Mar 7, 2019)
    10 month ED still present. Trimix works.

  4. #4
    Experienced User
    Join Date
    Jan 2016
    Posts
    98
    Jake XYZ- Thanks for the info on Trimix. I am going to ask my uro about trying it on my next visit. I have tried the pills and got nothing. I am a little nervous about some posters saying they started to develop peyronies when they were taking the shots. Have you had any trouble with that? Anyone else?
    DOB: 2/28/1963 Grandfather died of PC
    DRE: 10/15 Urologist exact words "Uh Oh, your prostate is as hard as a rock"
    Biopsy: 11/15 12 of 12 cores positive
    Gleason: 7 (4+3)
    RALP: 12/29/15
    Gleason upgraded to 9 (4+5)
    EPI (+) SVl (+) Margin (+) PNl (+)
    PT3b
    Continence=99%
    ED=present
    Finished 40 rounds of radiation 5/25/16
    PSA 12/29/15 3.5
    PSA 2/22/16 0.15
    PSA 4/4/16 0.12
    PSA 8/8/16 0.13
    PSA 12/9/16 0.07
    PSA 6/8/17 0.04
    PSA 1/11/18 0.01
    PSA 7/9/18 0.01
    PSA 2/4/19 0.01

  5. #5
    Top User
    Join Date
    Aug 2016
    Posts
    1,346
    I had a Peyronie's experience. After the first injection I noticed a slight depression in the area of the injection site. I should have stopped then. I gave myself 4 more shots over the course of 2 months. Each more painful than the last. I stopped, but have significant bottlenecking at the base at the site of the injections.

    I am now deformed, but still functional. In hindsight, I would have been more patient. I eventually recoverd my erections in full in a year and a half.

    For you, after six years I'd give it a try. It can work.

    I had Peyronie's, but didn't know it. The shape was normal. Imagine the chances of that. The injections exposed it. My doctor was unaware of injections causing Peyronie's.

    My doctor said erections or incontinence will not be improved with a successful surgery. They may return to pre surgery levels, but not better than.

    One suggestion is to work with a doctor who specializes in ED. My urologist was good at surgery, but not ED. My first injection and erection was in his office and under his supervision. When I pointed out the slight divot at the injection site he said may be Peyronie's yet he let me walk out with the script. I believe a more experienced doctor would have stopped it right there.

    As I understand it, the nerves damaged by the procedure are the nerves that shut the valves when the penis is engorged and hold the blood in the erect penis under pressure. You should be able to fill your penis with blood (standing helps). The problem is keeping it there for the time you need. The injections do work and while off putting you do get used to it.
    Last edited by Another; 03-23-2019 at 01:30 PM.

  6. #6
    Experienced User
    Join Date
    Jan 2018
    Posts
    72
    Quote Originally Posted by rmotacek1 View Post
    Jake XYZ- Thanks for the info on Trimix. I am going to ask my uro about trying it on my next visit. I have tried the pills and got nothing. I am a little nervous about some posters saying they started to develop peyronies when they were taking the shots. Have you had any trouble with that? Anyone else?
    Rmotacek,

    I have no signs of Peyronie’s yet. I have done 9 or 10 shots in 2 months. I had some real pain in my penis anytime I had any semblance of an erection ever since surgery. But in my case, it just felt like I needed to “stretch it out”. Every shot I have done, the resulting erection was less painful than the one before. So the last couple have been pretty good and successfully used. I’ve never had any bending or irregularities in my erection since doing the shots. Other than I think I lost a half inch at least. So, so far so good with my shots. I am not going to the same Dr who did my surgery. I’m going to a Uro who specializes in ED. And I have been talking to him weekly as I have been doing the shots and reporting the results and issues...so I’m not just winging it. So, in summary..so far the shots have worked well for me. And like I said in the above post, my biggest issue now is having erections last 2-4 hours. Which is not fun at all. You would think maybe 2 hours would be great but it’s really uncomfortable.
    diagnosed at age 55
    PSA 4.5 (8-24-2017)
    Biopsy 12-18-2017
    7 of 12 malignant
    3+4=7 (70%) right apex
    3+4=7 (95%) right mid
    3+4=7 (20%) right base
    3+3=6 (20%) right lateral apex
    3+3=6 (30%) right later mid
    3+4=7 (90%) right later base
    3+3=6 (30%) left lateral mid
    RALP- May 14, 2018 - Johns Hopkins, Dr Pavlovich
    Post op pathology: Gleason 3+4=7, Grade Grp 2. 10% Pattern 4
    pT2
    Max tumor dimension 18mm: pretty much in ALL zones but organ confined
    Lymph Nodes (3 right and 8 left) negative.
    Seminal Vesicle invasion: none Margins: negative
    Prostate= 52g, 4.3cm x 4.5 x 4.3
    Catheter out 9 days later May 23, 2018
    6 week PSA = 0.00 (July 7, 2018
    5 month PSA = 0.00 (Oct 15, 2018
    7.5 month PSA- <0.014 (different lab this time - Jan 3, 2019) 9.5 month PSA <0.014 (Mar 7, 2019)
    10 month ED still present. Trimix works.

  7. #7
    Senior User
    Join Date
    Nov 2012
    Posts
    273
    First let me thank those that have replied to my post. I haven't been to my urologist yet, but have an appt. the first part of May. It was April, but the doctor is going on vacation. I've continued researching across the web and from what I can find there isn't anything out there that doesn't have some sort of side effects. Some of the side effects are just not worth it in my opinion.
    Has anyone tried the Muse? I see it can be a suppository or injected, but it also lists some very serious (in my opinion) side effects.
    Age: 65 / At surgery
    10/01/12 PSA 5.7 & climbing
    10/25/12 Transrectal biopsy / results T2 b/c Score of 3-4 & 4-3 / Gleason Score 7
    10/28/12 Consultation with Surgeon Dr. Vipul Patel (8,000+ surgeries) for Da-Vinci Radical Prostatectomy (my choice)
    01/11/13 Da-Vinci Prostatectomy, Florida Celebration Hosp. (above surgeon), Cancer confined within prostate capsule & none found in margins or lymph nodes.
    02/26/13 PSA test <.01
    06/11/13 PSA test <.01 and Testosterone 510
    09/09/13 PSA test <.01
    01/15/14 PSA test <.01
    07/21/14 PSA test <.01
    07/28/15 PSA test <.01
    02/02/16 Quadruple Bypass Heart Surgery
    06/28/16 PSA test <.01
    03/18/19 PSA tested yearly and to date still <.01

 

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