Starting to lose some feeling

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Purgatory
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Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2011 9:10 PM (GMT -6)   
I am wondering if anyone else here is experiencing what is happening with me,  especially anyone  post SRT or post RT.
 
I am now coming up 19 months post SRT.  For about 2 months after SRT ended, I could still perform sexually as normal, but at the moment of climax, I could feel the contractions as normal  (well, normal for post-Surgery), but there was almost no "feel good" feeling.  Over the following months, that feeling came back, and it was as strong and pleasant as expected.
 
I have noticed in the past 2 months, and I was waiting to see if there was a pattern taking place, I have lost all the "good" feeling again.  No problems with errections  (been blessed that way from day one), but just like immediately post-SRT, everything seems to be working minus the "feeling" part.  The errections and contractions are just as strong as before.
 
I had read that sexual problems could develop way after RT or SRT ends, sometimes 2-3 years out.  Anyone else in the same boat, or perhaps someone that is several years out from radiation in any flavour?
 
Right now, it's not a life or death situation obviously, but just wondering if it is going to stay this way, or if this is the beginning of an ED problem that I haven't had to experience?
 
David in SC

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 6/16/2011 9:19 PM (GMT -6)   
i'm no expert and have no idea about radiation, but I do believe that "feeling" is a mental thing to a very large extent.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2011 9:31 PM (GMT -6)   
Really looking for someone(s) with first hand post RT or SRT experience. This is no mental thing, it's 100% physical.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

BillyMac
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Date Joined Feb 2008
Total Posts : 1858
   Posted 6/16/2011 9:49 PM (GMT -6)   
David,
After all your trials and tribulations I am astonished and full of admiration that you are still inclined to "throw the leg".
Bill

F8
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Date Joined Feb 2010
Total Posts : 3984
   Posted 6/16/2011 9:59 PM (GMT -6)   
David -- my feelings are a little different but still intense.  desire is slightly blunted by celexa (i think) but when i get back from vacation i'm going to slowly taper off the anti-depressant as well as lose weight.
 
ed
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl
6/8/11 PSA .2, T = 540 ng/dl!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2011 10:37 PM (GMT -6)   
Ed,

I remember my celexa/lexapro days, from what I remember, it mostly made me not interested, but certainly able, and it took more effort on my end to finish the job so to speak. With this current business, all works as normal, from thought to finish, but it's like the ending part is void of feeling, good or bad. Perhaps it will come back, perhaps not. Will mention on my long list of new questions to my oncologist next week. I have lost 8 lbs this past month without trying. I know the doctor is going to lecture me about my sugar consumption, which is back to my old days, its like herion to me, lol.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 6/16/2011 10:41 PM (GMT -6)   
>>and it took more effort on my end to finish the job so to speak.,,
 
exactly.  and finishing is more like an implosion, not an explosion cool .  i've only had my mojo back for a couple of months so were still early in the game.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl
6/8/11 PSA .2, T = 540 ng/dl!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/16/2011 10:47 PM (GMT -6)   
Ed,

All in all, I am not complaining. Despite my trials and tribulations for nearly 3 years now, My doctors and I are still amazed that the wee one has worked without complaint. Still makes no sense on one damage nerve bundle, but for whatever reasons, all systems are working. With our disease, we have to take what we get.

I am curious about post RT/SRT sexual problems developing. With surgery alone, if you are going to have ED problems, you generally get them on the front end, but according to the books, with radiation, that can come later. Though as my cancer further progresses, the whole subject may become mute with me.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 6/16/2011 10:53 PM (GMT -6)   
>>I am curious about post RT/SRT sexual problems developing<<
 
i think about that too.  if it happens 20 years from now i probably won't complain cool .  my brother had a rough time kicking lexapro but he did so rather abruptly.  i plan to cut back in 5mg increments and maybe even 2.5mg when i get into the single digits.  i have been taking 20mg of celexa for about 16 months.  what was your  experience with withdrawals?
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl
6/8/11 PSA .2, T = 540 ng/dl!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/17/2011 12:22 AM (GMT -6)   
I was on Celexa for about 2 years, and then switched to Lexapro for about 3 years. Lexapro is considered the "corrected" form of Celexa. Celexa, as you know, is generic now, so its cheap, where as Lexapro is still under patent. I quit the Lexapro cold turkey around 6 years ago. Just didn't feel like I needed it anymore, and haven't been on it since. I don't recall any withdrawal problems in doing so. On the other hand, my wife has been on Celexa for at least 10 years, and everytime she has tried to quit taking it, she becomes an emotional basket case within 24 to 48 hours. Her doctor has advised her to stay on it, and to be honest, it really helps even her moods out, especially being in the midst of menopause.

Some people have more problems with med withdrawals than others. When I have been off of Ambien for short periods of time, I had no ill effects. And more recently, I had the 2 month period post my last surgery, that I stopped taking Loratabs, and had no ill effects after being on it steady for 2 plus years. With the pain meds, all 3 of my doctors have said, that if the body is in pain and needs the meds, there is little risk of addiction. Just my take on the subject.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 6/17/2011 1:27 AM (GMT -6)   
David -- thank you.  ambien is the other drug that i have to kick, but that will be after celexa.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl
6/8/11 PSA .2, T = 540 ng/dl!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/17/2011 10:41 AM (GMT -6)   
Ed,

How long have you been on Ambien? I am on my 12th year, and there was only a single six month period that I wasn't on it. I was put on it when I went through RT the first time, and due to radiation burning, totally disrupted my sleep pattern. Even after all these years, its always as effective, I take it about 15 minutes before I am ready to go to sleep (never while I am up and about), and it knocks me out cold every single time. I have been on the 10 mg ones for about the past 6 years. There are Ambien withdrawal horror stories out there for sure, but my GP said its generally involves people that use it for recreational purposes or self dose over safe limits. Hard to believe there are fools that will grind up several Ambiens, then snort it, then drink 3-4 Double Shots (Starbucks) to counteract the sleeping effect, just so they can hallucinate off the Ambien. If you notice, most generic Ambiens come with a shiny coat, as the dr. said it makes it very hard to grind the pills down to dust.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 6/17/2011 11:46 AM (GMT -6)   
David -- i've been on a ambien for over a year....at least a year at 10mg.  like you it always helps me sleep but since i'm a recovering addict it's more of a dangerous luxury now that i'm getting better. psychologically i am hooked -- i anticipate my pill every night -- and that's a red flag for me.  i'll let you know how the detox goes.  i plan to do a 3-month detox off of celexa so it'll be a while yet before i deal with the ambien.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl
6/8/11 PSA .2, T = 540 ng/dl!

Ken S
Regular Member


Date Joined Nov 2006
Total Posts : 120
   Posted 6/17/2011 12:25 PM (GMT -6)   
David,

I've had no problems at all with the "good" feeling. That's the only thing that hasn't changed through this whole ordeal.

I can achieve about an 85% erection without any aids but it requires concentration and constant manipulation to maintain that. This is how it was after my RP and stayed that way after my IMRT. Absolutely no change in almost five years, that goes for my stress incontinence also - one slightly used pad a day (of course I mean to say the slightly used pad is at the end of the day not the beginning).

Ken
Age 54 (2006) PSA: 2005 - 3.2, 2006 - 3.7
Biopsy 8/06, Gleason 6 (3+3), T1c
RRP 11/3/06 Post-Op Biopsy, Gleason 6 (3+3), T2c, right apical margin positive
IMRT (37 Treatments) 4/23/07 - 6/14/07
PSA: 7/10 - 0.02

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/17/2011 1:48 PM (GMT -6)   
Ed,

As a recovering addict, I am sure that is a different set of problems to work through. Not one that I am familiar with. Wish you luck on both drugs if you withdraw from them. I would only try to rid myself with one at the time if I were you.
---------------------

Ken,

That's a good five you story there. Glad you are doing so well on both fronts. I am sure, like all things PC, there's just so much variation between patients, even with similar stats.


David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

wifeandmother
Regular Member


Date Joined Feb 2011
Total Posts : 45
   Posted 6/17/2011 2:39 PM (GMT -6)   
what am i doin here?
Purgatory, you are a good man and I've been reading alot, you have been through alot and you are on my mind and prayers. I cannot answer anything about your RT question, but I can tell you this and I hope somehow it helps you. My husband was walking down the street yesterday and he felt an erection coming on. He had the robotic 6 weeks ago. He quickly went into a bathroom to look at junior, it was as limp as a wet noodle.
When he told me this about this feeling, I only could answer that feelings come and feelings go sometimes for very great long periods of time, its positive and then its negative. You might have this feeling again, and you may not. Give this feeling some more time.

tedgard
Regular Member


Date Joined Feb 2008
Total Posts : 108
   Posted 6/17/2011 2:49 PM (GMT -6)   
David,
I completed my RT a few weeks ago. I have not yet experienced the “lack of feeling” issue you are discussing yet, and hope that does not develop later. Regardless, I thought I would provide these comments in the event that they may be useful for someone out there.
I also had one of the nerve bundles involved with my surgery. I was not as lucky as you, and ended up having ED issues. I ended up getting penile implant.
I will first say that if someone does not want to read real frank and literal comments about sexual activity, you may want to stop reading now. David, I know you said earlier that it is physical not mental, so you can disregard this post as well if you wish.
Not that your issue has anything to do with the mental aspects of achieving the feeling and/or having a climax, but for many men, there are some mental aspects of sex that can sometimes prevent them from receiving the same enjoyment as they use to. Therefore, maybe there is someone out there that could benefit from these comments.
For me, it used to take a lot of mental concentration away from the feeling and climax aspect just to try to get or maintaining an erection. In relation to my mental focus during sex, I have found that it did make a real difference after getting my implant that I now have no worry about being able to archive and/or maintain an erection. Therefore, I can focus far more on just the feeling and achieving the best climax possible. To this means, I have been able to retrain my wife in her participation by letting her know what makes me feel the best. I have found that some direct soft and slow ********** stimulation from her in conjunction with vaginal intercourse can bring a more intense enjoyment and climax then before with just vaginal intercourse.
My thoughts, for whatever they are worth,
Ted
Diagnosis Results – Oct 31, 2007;
•Age – 53 (turned 54 in Nov 2007)
•PSA is 3.83
•Gleason's Grade - 3+3=6, T1C

Surgery Dec 11, 2007;
•Cancer confirmed on Right mid and Left apex
•Both nerve bundles spared, some damage to the Left bundle.
•30 day PSA, .01
•90 day PSA, .00
•Latest PSA, .12
•ED treatments: Levitra, Cialis, Trimix, Erect Aid pump, Penile Implant on 3/12/2009
•Happy

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 6/17/2011 3:19 PM (GMT -6)   
the "pleasure" department is in the brain. It is also connected to the nerves down there. If someone has no issue geting erections it is assumed the nerves are not shot. The "good" feeling is also caused by release of endorphins.

Can radiation alter these facts?

Also, i read on some prostate forum, that if someone does it to often, solo or in company, the "good" feeling will diminish each time. The article likened it to when a teen would do it very often and find less ejaculation each time.

tedgard
Regular Member


Date Joined Feb 2008
Total Posts : 108
   Posted 6/17/2011 4:24 PM (GMT -6)   
You may want to research this a little more, but it is my understanding that the nerves that control erections are not the same nerves that result in the feeling and climax. Therefore, erections are not necessary for achieving sexual feeling, enjoyment, but there are nerves involved, even though from youth most of us have associated the two.
It is my understanding that the nerves that are on each side of the prostate control the erectile function, whereas the nerves that control the feeling and climax are located in the abdominal area and go along the penis to the glands.
I have thought of a few more comments regarding the mental aspects of sexual enjoyment that may be helpful to some. Again, if you are not comfortable with direct and frank comments regarding sexual context, please stop reading now.
From youth, many of us make mental associations to sexual enjoyment with erections and ejaculations. After PC surgery and other PC treatments, some of us do have to “re-think” these mental associations. An example is that after surgery, in my case, I had to make a conscious mental disconnection between my erections and ejaculations to the feeling and climax of sexual enjoyment. I am now able to achieve both the feeling and climax with or without an erection, even though I do enjoy it more with one. There have been some unexpected benefits in doing this, especially disassociating this to ejaculation. The best benefit is that I no longer find it necessary to “recuperate” between sexual events like before. What I am talking about is since there was an association with ejaculation and erection; I usually wanted to wait a day or more before trying again. Over the years since PC surgery, I have made enough progress in disassociating my sexual feeling and climax from erection and ejaculation, that I can now achieve multiple organisms without the recuperative time previously expected. Therefore, I believe that I am enjoying this aspect of sexual enjoyment far more like we (men) have associated to a woman. Someone mentioned that having a climax too often can diminish the feeling similar to a youth that experiences less semen if they ejaculate too often. I can certainly agree with the reduction in semen for ejaculation, but at least for me, this has not been the case in regard to the orgasmic part of sexual enjoyment.
Again, my comments, for whatever they are worth,
Ted.
Diagnosis Results – Oct 31, 2007;
•Age – 53 (turned 54 in Nov 2007)
•PSA is 3.83
•Gleason's Grade - 3+3=6, T1C

Surgery Dec 11, 2007;
•Cancer confirmed on Right mid and Left apex
•Both nerve bundles spared, some damage to the Left bundle.
•30 day PSA, .01
•90 day PSA, .00
•Latest PSA, .12
•ED treatments: Levitra, Cialis, Trimix, Erect Aid pump, Penile Implant on 3/12/2009
•Happy

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/17/2011 4:57 PM (GMT -6)   
wifeandmother, thank you for your input and kindness, hope your husbands recovers well in time in that area as well

ted, thanks for time and thoughtfulness of your two posts, i appreciate you helping me think through this.

it's important to remember, i am only talking about the orgamic pleasure part during the climax. i have no issues with "wood", have even regained the ability to think myself to "wood". this loss of the pleasurable feeling did occur for the first few months after SRT ended, but then returned in its full glory and had been fine, each and every time, until about 2 months ago. All systems work as good as gold, until those final last seconds during the contractions.

david, let me be polite and clean here, i don't do "solo" trips, i have no need of it personally, and its not a case of doing it too often. what i am talking about is a set pattern that is taking place over the last couple of months. i am hoping its temporary, and not perm. one of the points of having sex, is that it suppose to feel good.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
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