after lupron...when does libido return?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/14/2010 8:49 PM (GMT -6)   
anywhere from six to 12 months after the last 3-month shot according to two of my doctors.  so i do understand the theory but i'm looking for firsthand experience.  and i'm not talking about the ability to get an erection but rather when did you become interested in sex again?
 
i ask because i got my third and last shot of lupron today, 3-month variety, which marks the end of my primary treatment.  i also had a PSA of 0 which is good news but expected.
 
thanx for your help!
 
F8 (ed)
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Post Edited (F8) : 9/14/2010 7:55:24 PM (GMT-6)


Don K.
Regular Member


Date Joined Jan 2010
Total Posts : 72
   Posted 9/15/2010 12:12 AM (GMT -6)   
F8:
 
My last Lupron shot was finished (theoretically) in March.
 
Almost 6 months later, I am just starting to get stirrings of libido again.
 
This dang Lupron is effective, but EVIL!
 
Don K.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/15/2010 12:34 AM (GMT -6)   

thanks Don -- i think i can work with some stirrings devil .  Don have you been able to lose any weight yet...assuming you packed on some pounds?

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Don K.
Regular Member


Date Joined Jan 2010
Total Posts : 72
   Posted 9/15/2010 2:21 AM (GMT -6)   
Hi F8:
 
Gaining weight was one of the side effects I did not have.
 
Worse one was the loss of libido.  Man, what a disaster! Could still get erections by direct stimulation for what that's worth but no desire to have sex. Weird feeling.
 
Plenty of hot flashes. Just an aggravation really.
 
Now I know why the kings of old castrated their guys who ran the harem.
 
The Lupron brought my PSA down from 38.0 to 0.53 in ten months and I am now on Casodex only hoping that I can continue my vacation from Lupron for a long time.
 
I have not seen it reported anywhere else, but when the Lupron was over I noticed that my testicles were about the size of jelly beans. I guess due to taking a break from producing testosterone. I have heard that athletes on stearoids experience this also.
 
Almost forgot - Don't worry about turning into a female. You will NOT be tempted to go out and buy some high heels!
 
Don K.

Don K.
Regular Member


Date Joined Jan 2010
Total Posts : 72
   Posted 9/15/2010 2:25 AM (GMT -6)   
Sorry. I just reread your original post and noted that you are already on Lupron. So you already know all the stuff I mentioned.
 
Good luck with losing weight. I could stand to lose a little even before HT but it is hard to get it off. Luckily I dodn't put on any after starting HT.
 
A little less food and a little more excercise sounds like the key for both of us.
 
Don K.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3139
   Posted 9/15/2010 6:51 AM (GMT -6)   
There are some longer term useage patients using such, that claim never returned from e.d. issues, and libido perhaps those same people just didn't mention it on other forums I saw in the past, wouldn't surprize me if it went too. Of course the turning of the big head to look and see the forest, we are hard wired perhaps for that. (LOL) The monk factor also takes virtue and will power and maybe higher powers to walk the walk.

Don- I have been in that kind of psa land where you are, because you did not reach 'non-detectable levels'(I didn't either), I would caution you to watch this closely and if you see a rising psa on casodex, perhaps get tested again real soon and monitor velocity..some patients while on casodex in even partial hrpca state find the casodex might feed PCa and psa rises get worse and worse. Your doc had better be watching this closely with you, other scenarios by doctors have the patients drop the casodex (asap) and go to other protocol drugs. Depending upon the open mindedness of your doc, you may have alot of choices to proceed or like we see in some patients herein, you are offered few or 1-2 choices and that is all. You should have a say in how you proceed, but you don't have to is another decision. Hope you don't have to visit this twilight zone area in PCa. Makes primary treatments look simplistic in comparison.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/15/2010 9:11 AM (GMT -6)   

zufus -- i know the theories and of course the worst case stories are the easiest to find on the internet. i will be on lupron nine months....i know there are guys who have sex again after lupron or at least regain the desire.  i have a beautiful, patient, young wife and all we really want is the desire to return ... for now.  baby steps cool .

so help me out HT guys!

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/15/2010 9:15 AM (GMT -6)   
thanx Don.  i'm not really worried about the weight gain...that i can deal with. i've never quit working out tho i've had to modify my workouts, and of course i have modified my eating habits  tongue    how long were you on lupron?
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 346
   Posted 9/15/2010 9:33 AM (GMT -6)   
ed:
The answer to your question is complex. Age is one factor, as older men recover more slowly, as they do from every insult to the body. Younger men recuperate faster, as expected. The testosterone level reached under treatment is also relevant. Men whose T goes to 10 or so will take longer than those whose T lingered at 40-50. Time on treatment is also relevant as the longer the testes are out of commission the longer it takes for them to waken (if ever). Libido may recover before actual erections return, if that was part of your question. I am currently off treatment of 15 months, T=7 at nadir, age 63, and it has taken four months for T to recover to 200, libido has returned and nighttime spontaneous erections have begun, occasionally, though erections at will still have not begun, even with vitamin V and others.
At inititiation of treatment I noticed a small bump on one testicle. Diagnosis was a benign cyst, likely there for a long time though unnoticed until testicles shrank thanks to Zolodex.
Your age, and time on treatment argue for a return on the shorter end of the continuum.
With radiation some men have a delayed reaction and sexual performance diminishes due to this cell destruction over time. So recovery may be halted and reversed by radiation induced cell death at a later period, sometimes years.
You chose the right treatment in my opinion.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/15/2010 9:55 AM (GMT -6)   

thanx tarhoosier -- your post was very helpful. i was a little confused by:

"I am currently off treatment of 15 months, T=7 at nadir, age 63, and it has taken four months for T to recover to 200..."

so how long after your last shot was your T level @ 200?

my doc doesn't check T level but i'm going to request it i think.  thanx again.

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Post Edited (F8) : 9/15/2010 9:10:52 AM (GMT-6)


tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 346
   Posted 9/15/2010 10:02 AM (GMT -6)   
Four months after the expiration of the 84 day injection was when the tested T level was at 200 and I could already feel the returning "fullness of life", so to speak.

See here:

http://preview.tinyurl.com/2w7gsds

or

http://askdrmyers.wordpress.com/

As Charles Myers, Prostate oncologist has just posted about return of sexual potency after radiation on his weekly webcast.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 9/15/2010 10:14 AM (GMT -6)   

tarhoosier -- thanx again.  very encouraging and informative!

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Don K.
Regular Member


Date Joined Jan 2010
Total Posts : 72
   Posted 9/15/2010 1:46 PM (GMT -6)   
Zufus:
 
Thanks for the words of warning. You don't know how much I appreciate that.
 
I wish I knew about the "openmindedness" of my docs. I am being treated by the prostate team at Denver University hospital. They really wanted to get me in their new Tomo external beam machine but I demurred and requested this HT route.
 
I don't know what my testosterone level was prior to treatment, but the 10 months of Lupron brought it down to 20. So I am starting back from castrate level.
 
My next PSA is in three weeks along with a "T" level. So I'll just have to sweat it out for a little longer.
 
And F8 - Sorry for the thread drift but perhaps some of the above info will be of help to you too.
 
Don K.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/15/2010 8:52 PM (GMT -6)   
It took me about 9 months to return however when it did it really did. Now unfortunately I think I am going to be back on the crap soon. Oh well could be worse.

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

Don K.
Regular Member


Date Joined Jan 2010
Total Posts : 72
   Posted 9/15/2010 10:16 PM (GMT -6)   
Livinadream:
 
Thanks for that info. It gives me some hope  that things will finally return to normal.
 
I'll bet that was a great day for you when stuff suddenly resolved itself.
 
It scared the heck out of me when I discovered the big time shrinkage of my testicles
 
The docs never told me that this would happen. But then, they skipped over the long term effects of Lupron such as bone density loss and cardio problems too.
 
Sorry to hear that you may have to end your vacation. My day of truth will come in two more weeks when the next PSA and "T" is performed.
 
I'm on Casodex only right now.
 
Enjoy yourself while you can!
 
Don K.

JB71
Regular Member


Date Joined Nov 2009
Total Posts : 202
   Posted 9/16/2010 10:18 AM (GMT -6)   
My last Lupron 90 day shot was end February, one month
after open surgery. Finished radiation on June 24th. and
not only do I still have hot flashes. (wakes me up several
times during the night, just in time to go pee) I still need
to wear a pad daily, my last testosterone reading was
UN-DETECTABLE and my libito is the same.

Could not care less about sex although my 16 year younger
wife seems to understand and is still very supportive. Held
our latest grand daughter for the first time yesterday.
What a cuty at only 5 lbs.

Maybe this is what my life is really all about now.
Age, only 71.
July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 15)
 
First PSA test since surgery on March 18th.
with the results of <0.03 !!!
 
Started a Facebook page for bikers with prostate issues at:
 
IMRT to started on May 10. Going to get 33 units.
 
.

FoxRun
Veteran Member


Date Joined Aug 2011
Total Posts : 612
   Posted 6/9/2012 2:00 PM (GMT -6)   
My 3 month term(12 month total) was up on May 7 and I'm having a harder time with hot flushes and insomnia then I had during my whole 12 month sentence. I'm also finding my eyes very sensitive to light as well. On the positive side, my golf game has improved....lol
Age 52, Stage T2c, Gleason grade 8-10
PSA level of 10.6 no symptoms whatsoever.
Ct scan and Bone scan negative
my diagnosis is considered a high risk disease and my treatment EBR + Brachy Seed Implants + HT
50mg of Bicalutamide tablets per day first 30 days
22.5 mg Lupron for 12 months
PSA value: 5.5 May 2011, 0.03 Nov 2011, undectable Feb 2012
T levels 1.66 Nov 2011, 1.?? Feb 2012.

don826
Veteran Member


Date Joined May 2008
Total Posts : 763
   Posted 6/9/2012 6:46 PM (GMT -6)   
Seems like the desire returned for me about eight months after my last shot on the first round. Unfortunately the radiation had done some damage and I was only able to get a rather useless erection that did not last long. I am now on my second round of lupron with my PSA rising and my libido non existant.
 
Good luck to you Ed.
Don

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3250
   Posted 6/9/2012 8:55 PM (GMT -6)   
Good luck to you Ed.
 
i started that thread almost two years ago and i'm happy to report that my libido is back in full force and i am fully functioning though i do take 10mg of cialis every other day cool .

in my signature you can see when my testosterone returned.  i have about 2.5 months till my next PSA test and i'm going to be very anxious about this one.
 
ed
 
 
age: 57
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
8/19/11 PSA .3, T = 487 ng/dl
10/5/11 PSA .2, T = 530 ng/dl
3/1/12 PSA .3

FoxRun
Veteran Member


Date Joined Aug 2011
Total Posts : 612
   Posted 6/10/2012 7:50 AM (GMT -6)   
F8 said...
Good luck to you Ed.
i started that thread almost two years ago and i'm happy to report that my libido is back in full force and i am fully functioning though i do take 10mg of cialis every other day [img]/community/emoticons/cool.gif[/img] .

in my signature you can see when my testosterone returned. i have about 2.5 months till my next PSA test and i'm going to be very anxious about this one.

ed


My bad Ed.....I try to avoid repetitive threads so I usually search for one pertaining to my subject at hand......thanks for the update though and good luck!
Age 52, Stage T2c, Gleason grade 8-10
PSA level of 10.6 no symptoms whatsoever.
Ct scan and Bone scan negative
my diagnosis is considered a high risk disease and my treatment EBR + Brachy Seed Implants + HT
50mg of Bicalutamide tablets per day first 30 days
22.5 mg Lupron for 12 months
PSA value: 5.5 May 2011, 0.03 Nov 2011, undectable Feb 2012
T levels 1.66 Nov 2011, 1.?? Feb 2012.

woodycreek
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/4/2012 3:17 PM (GMT -6)   
I just figured out that the presence of PNI on my biopsy is a really bad fact - sending me from highly confident with my treatment plan and prognosis to very worried. I've now read all of the studies - the takeaway is that, if you have PNI, you do not have Gleason 6. Moreover, you are high risk, by definition. I asked my radiation oncologists about this, and they concurred I should start a course of Lupron for 6 months. They had assumed, previously, that I would not accept this course of action (!?) One says I would be her first Gleason 6 patient to accept, much less request, Lupron. Is it that bad? If you accept the premise that PNI portends an even worse outcome than the highest of high risk PCa (and some people do not), then the mortality figures are clear - it would seem to be foolhardy not to do it. I would be starting about halfway through a course of proton therapy. Not sure how that might affect things. Does anyone have any experience with RT, PNI and low grade PCa?

rr

---------------------------------------------------------------------------------------------------------
Age 64, Stage T1c, Gleason 6 with PNI
PSA level at treatment start of 3.9 no symptoms
CT scan and Bone scan negative 18 months ago w/w since then
currently finished 17 of 45 proton therapy sessions
two biopsies, each 3 of 12, low %, but completely different areas from 1st biopsy to second

sequoiaranger
Regular Member


Date Joined Sep 2011
Total Posts : 236
   Posted 7/5/2012 10:14 AM (GMT -6)   
My prostatectomy scooped out a "wide margin" that did NOT spare the "boner nerve". I was put on a leuprolide (Lupron is a brand name of a type of leuprolide) called "Eligard" that supposedly lasts six months. It certainly crashed my testosterone for several months (hot flashes and all, and T<20 readings at first). After a few months, however, I began having "stirrings" (no erection possible on my own, but DESIRE was there!) and the next PSA/testosterone test revealed my testosterone was back up in the 300's. The Eligard had worn off prematurely, but it did NOT take long for the T-level and libido to surge back up. Sadly, I have been on Lupron/Casodex for five years now, and libido is null and void. I have become "refractory" (where the pc no longer responds to having its testosterone limited), so I am hoping I can go off HT sometime soon.
Gleason 9, RPP 2/2007. PSA rising, neither Lupron nor Provenge working anymore. Got Radiation. Now on Taxotere, PSA dropping----crossing my fingers!
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, October 24, 2014 10:26 PM (GMT -6)
There are a total of 2,250,785 posts in 250,373 threads.
View Active Threads


Who's Online
This forum has 157536 registered members. Please welcome our newest member, fightDiabetes26.
336 Guest(s), 12 Registered Member(s) are currently online.  Details
Katebirch, Worried daughter2, Paddicake77, MaxMilian, Captain Slow, jrjenn5, deannakay, Redwing57, platinumpixie, Abilene, Momtogigiandquinn, Hopeful13


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer