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Thread: What I Need to Know About ED

  1. #221
    Regular User
    Join Date
    Jan 2019
    Posts
    16
    Quote Originally Posted by Jake XYZ View Post
    I suggest going to a forum called Franktalk...www.franktalk.org ...its dedicated to ED and every aspect of ED is talked about much more than on here (not everyone there is a prostate surgery person). There is a forum thread just on injections.

    .
    thank you for your post, I did try the other board and they had some good info. I too have done the trip to the ER only to return home. I have a love hate with the injections as they are very stressful and I always inject with 'what will the er be like in 4 hours'
    DOB:7/68
    8/15: 5.73 PSA
    1/18: 6.22 PSA
    2/18:6.85 PSA
    7/18:biopsy: left apex 3+3=6 Grade Group 1, 5% 1 of 2 cores, rest negative
    11/18: RALP at Northwestern Chicago
    gleason 7 (3+4) 30% gleason 4 component, tumor volume 10%; Pt2, Nodes pN0
    12/18: PSA 0.00
    4/19: PSA 0.00

  2. #222
    Regular User
    Join Date
    Jan 2019
    Posts
    16
    how do you know when erections are coming back? I can get a good semi but it's not useful for, you know. It doesn't seem to be getting better, it's about the same as it was 3 months ago

    when did folks notice a return and how long did that take? is it a slow progression?
    DOB:7/68
    8/15: 5.73 PSA
    1/18: 6.22 PSA
    2/18:6.85 PSA
    7/18:biopsy: left apex 3+3=6 Grade Group 1, 5% 1 of 2 cores, rest negative
    11/18: RALP at Northwestern Chicago
    gleason 7 (3+4) 30% gleason 4 component, tumor volume 10%; Pt2, Nodes pN0
    12/18: PSA 0.00
    4/19: PSA 0.00

  3. #223
    Quote Originally Posted by Longpig View Post
    how do you know when erections are coming back? I can get a good semi but it's not useful for, you know. It doesn't seem to be getting better, it's about the same as it was 3 months ago

    when did folks notice a return and how long did that take? is it a slow progression?
    Have you tried medication like sildenafil (Viagra)?

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day retest)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  4. #224
    Top User
    Join Date
    Aug 2016
    Posts
    1,926
    Semi is good. It means all is not lost and it's on the mend. It took a year for me and it is still improving three years later. Be patience. Use it often.

    Nerve tissue takes much longer to heal than other soft tissues. It is the nerves that control the valves holding the blood in the engorged penis that are traumatized. Standing allows gravity to help.
    Last edited by Another; 04-12-2019 at 04:21 PM.

  5. #225
    Senior User
    Join Date
    Feb 2019
    Posts
    290
    Be blessed with time, patience and semi. There are those like myself whose conditions required losing all the nerves in surgery.
    Last edited by Trex Dino; 04-17-2019 at 02:39 PM.
    Age DX 63 dob 1955
    8/11/16 CT scan (blood/sand in urine). Prostate norm w/cent calcification.
    11/6/18 GP freq urine/retro ejact. PSA 7.1 (RX Proscar/Flomax)
    12/18 PSA 4.1 14.8% Free Proscar? MRI Lesion 1.6cm. Lymph nodes sim to 2016 CT, prostate norm size. Stage 3. PIRADS 4
    1/19 Biopsy 2/5/19 DX
    2/19 Bone/CT scans: No evid met chest/abd/pelvis
    3/2019 RALP Cath out/post-op path rpt week later:
    G9 (4+5) (65-70% + 15-20%)
    Dominant tumor: 4.3 cm apex to base, bilat.
    LNI+ (4 of 12 on R, largest 4mm, 1 of 8 on L, 9 mm)
    EPE+ (right lat., post. and L lat. aspects apex to base and at ant. mid aspect)
    Intaraductal component+, BNI-, SVI+, LVI+
    SM+ (carcinoma unifocally extends to ant. mid margin area of EPE (2mm)
    Prostate fat: neg. pT3b pN1
    5/2019 Casodex 2-weeks. uPSA 0.11
    5/24 uPSA 0.11 Lupron injection
    6/19 uPSA .02
    8/7 began 39 sessions RT 70.2 Gy (last session 10/1)
    8/23 uPSA .01 Lupron injection
    9/27 uPSA <0.01
    10/22 uPSA <0.01

  6. #226
    3 months after RP I was frustrated with the progress on the ED. With either sildenafil or cialis at max dose I could not quite get one good enough to use. I was faced with either trying the muse or injections. I had gotten a good quality pump, and like many here tried it and didnt like it, I almost threw it away.

    Faced with resorting to injections, and based off advice I read on the net, I decided to try the pump some more. After some more practice with it, and trying using 2 bands at the same time, I am having some good success. Is it awkward going off to the bathroom to pump up, yes. But it works for us right now, the wife and I have figured out a routine that makes that works.

    I noticed here in the 4th month some improvement without the pump, so am hopefull for the future of not needing it.
    Age 54
    no previous PSA data. PSA in Feb 6.1, 2nd PSA April 5.6, biopsy 5/17/18
    2 of 12 cores Gleason 6, left side
    1 core Gleason 7 (3+4), confirmed by Dr Epstiens lab.
    RALP on 11/28/18
    Post surgical pathology Gleason 7 (3+4)

  7. #227
    Just an update on sildenafil prices at one mail-order place. I've been using mailmyprescriptions.com

    Their prices change, so check at their website if interested. I was taking 5 x 20 mg (100 mg) as a dose (150 tablets per order), but I just placed an order for 30 of the 100 mg (generic Viagra) tablets, which works out cheaper. Today's prices:

    Generic Viagra:

    100 mg = $1.08 per tablet
    50 mg = $1.08 per tablet
    25 mg = $1.08 per tablet

    Today the "true" generic sildenafil is:

    20 mg = $.043 per tablet (was cheaper last time I ordered, around $0.36).

    Crazy, isn't it? The generic Viagra is what is called a "brand generic", the generic sildenafil (generic Revatio) is a true generic. Hence the (big) difference between the 25 mg and the 20 mg. (The original, Revatio, is a heart medication that was found to have other benefits, has been generic for a while, and comes only as 20 mg.)

    You can have your doc send a refillable Rx (or they can contact you doc); however the max they will dispense at a time is a 30-day supply: your doc has to specify the # pills a month or the dose per time (day). So I was getting 150 tablets per order, and now there will be 30 tablets of the higher strength. (Docs and pharmacies assume sex once a day Nice that there are optimists in the world.)

    (At my last checkup, my uro mentioned the availability of 100-mg generic Viagra, but other online pharmacies seemed to be about $2 per 100-mg tablets few months ago.)

    They carry the usual ED medications, if you use a different one. Bottom line is that you may save if you shop around. BTW, you can buy a pill splitter.

    ____________
    Note: Although my uro wrote for the 100 mg tablets "One tablet a day as needed" they will send a max of 30 pills per 90 days (not 30).

    Djin
    Last edited by DjinTonic; 10-04-2019 at 05:45 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day retest)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  8. #228
    I have been around this forum through a lot over the past decade or so. It has been a huge help and I have always felt the responsibility to give back.

    I went from phenomenal erectile ability to zero ability immediately after "nerve-sparing surgery" at Memorial Sloan Kettering Cancer Center. It was a huge psychological and emotional battle that I was not willing to surrender to. Although I gained some ability back after many therapies and effort I still had significant ED. After almost 15 years of pills, injections, Vacuum Erection Devices, rings, and supplements. Upon hearing about penile implants I had a dozen misconceptions and reservations. Finally, I thoroughly researched 3 piece inflatable penile implants and had out-patient surgery to receive an implant. It is the best decision I made since the day of my diagnosis of Prostate Cancer. It has been like turning the clock back to my youth.

    In brief, nothing is removed. I have every cell of tissue and nerves I had prior to surgery. The sensation is the same to me and my wife. I have zero traces of any scar. No examination of my erect penis by vision or touch reveals any hint of an implant. It is essentially like being bionic and has many advantages over my penis even at 18 years old.

    The cost to me with Medicare and insurance was ZERO $. My entire lengthy journal can be found at http://www.peyroniesforum.net/index....ic,9938.0.html
    History: age 53 It took 3 biopsies (34 cores) to find 2 cores 4+4 Gleason 8
    Lap RP at MSKCC Apr 2004, age 54 All neg margins, nodes & structures. (T2a).
    Post RP PSA: <.1 until Feb, 08 (46 mos) PSA 0.1 - I then got sensitive tests -> 2008: Feb 0.06,
    May-08 0.09 - Jun-08 0.10, - Aug-08 0.10, - Nov-08 0.15
    SRT Dec-2008 ---Post SRT PSA 2009, Feb-09 0.10, May-09 0.09, Aug-09 0.06, Dec-09 .04, - 2010 Mar-09 0.04, 2011 .02, 2012 .02,
    STARTED UP Feb 2014-0.06, Jul-2015 0.10, Oct-2015 0.10, Feb-2016 0.15, Jun-2016 0.17, Dec-2016 0.25, Jan-2019 0.74, Jun -2019 0.72
    Aug 2018 Auximin scan - nothing
    Had an inflatable penile implant 2018 for ED. Best decision ever https://www.peyroniesforum.net/index...oard,56.0.html

  9. #229
    Quote Originally Posted by Hawk View Post
    ... Finally, I thoroughly researched 3 piece inflatable penile implants and had out-patient surgery to receive an implant. It is the best decision I made since the day of my diagnosis of Prostate Cancer. It has been like turning the clock back to my youth.
    ...

    The cost to me with Medicare and insurance was ZERO $. My entire lengthy journal can be found at http://www.peyroniesforum.net/index....ic,9938.0.html
    Thanks for sharing your story, Hawk!

  10. #230
    I founded and administer the largest male sexual health site on the internet for ED and Peyronies Disease for the last 15 years. It all began with my own Laparoscopic RP. In that time I have tried everything out there with maybe one exception. I was the patient of male sexual health specialist in Manhattan 4 hours away from where I live. Between my own battle and 15 years of following many thousands of other men in their struggle, I have learned a few things. I think I will write up an ED survival guide post specifically for PCa patients. Hopefully, I can post it somewhere here on the forum where it will not get buried or maybe I can post it prominently on our patient ED forum and link to it. I am not sure which is best at this point.

    In direct response to your concerns, I will say that the penis needs oxygen which comes from erections to maintain healthy tissue. That is why males routinely have night-time erections (NTE's). With an absence of blood flow, it sets up conditions for plaque or fibrosis that if present will cause a loss in size and/or deformity in the way of dents and bends. At times such deformity can become severe.

    The goal has to be to restore erections as quickly as possible with any method that is not itself damaging to the penis. I would recommend starting with the following:
    Daily low-dose Cialis which is designed to get men erections on demand rather than taking a pill only for intimacy.
    I would add to this over the counter L-Arginine 1,000 - 5,000 mg a day. L-Arginine is a vasodilator that can help by itself but works synergistically with PDE% Inhibitors like Cialis, Levitra, etc.
    I would strongly consider adding 1/2 of a 50 Mg Trazadone with a light snack before bedtime. Trazadone is an old antidepressant. When prescribed for depression it is dosed as high as 600 mg daily - Trazadone has a side-effect of causing NTE's. In fact in healthy men at high doses, it can cause priapism, a condition of a prolonged erection that needs urgent attention. It is dirt cheap costing pennies a tablet which you cut in half. If you have a good Dr. you can tell him you want it for the side-effect of NTE's as you heal and try to regain functioning. If you have an uncooperative Dr. sugguest you need it for sleep since it is often prescribed at those low doses for sleep. More is NOT better. if it is going to work it will work a 1/2 of a 50 mg tablet with a snack. And NO, it does not do much for daytime usable erections. If has been established that NTE's use different nerve pathways.
    I would also get a good Vacuum Erection Device to induce erections twice a day to preserve day-time blood flow and maintain size. Do not use the constriction band unless you are planning to have sex.

    That is a brief overview to get you started. Remember, Use it or lose it! Nothing good happens by waiting for functionality to return. Be pro-active.
    Last edited by Hawk; 07-19-2019 at 04:05 PM.
    History: age 53 It took 3 biopsies (34 cores) to find 2 cores 4+4 Gleason 8
    Lap RP at MSKCC Apr 2004, age 54 All neg margins, nodes & structures. (T2a).
    Post RP PSA: <.1 until Feb, 08 (46 mos) PSA 0.1 - I then got sensitive tests -> 2008: Feb 0.06,
    May-08 0.09 - Jun-08 0.10, - Aug-08 0.10, - Nov-08 0.15
    SRT Dec-2008 ---Post SRT PSA 2009, Feb-09 0.10, May-09 0.09, Aug-09 0.06, Dec-09 .04, - 2010 Mar-09 0.04, 2011 .02, 2012 .02,
    STARTED UP Feb 2014-0.06, Jul-2015 0.10, Oct-2015 0.10, Feb-2016 0.15, Jun-2016 0.17, Dec-2016 0.25, Jan-2019 0.74, Jun -2019 0.72
    Aug 2018 Auximin scan - nothing
    Had an inflatable penile implant 2018 for ED. Best decision ever https://www.peyroniesforum.net/index...oard,56.0.html

 

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