ED Survey Preliminary results

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geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/16/2009 2:07 PM (GMT -6)   
Here is a link to my first report on the ED questionnaire based on the responses of 55 members.

129.25.64.85/snew002.pdf

This just reports the raw numbers for each question -- I will work on a comparative report that compares answers to different questions.

By the way, the survey is still active and you can still take it at

129.25.64.85/new002.htm
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/16/2009 2:23 PM (GMT -6)   
This is consistent with doctors who say that 80% are restored to sexual activity, and advocacy groups saying yes but to what degree? By that I mean advocacy groups advertise that sexual function does return but many with aids and many not to the same level of performance. But the majority are doing quite well..

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2009 2:28 PM (GMT -6)   
geezer, one thing that surprises me, i thought there were way more robotics than open surgeries here ,but based on the raw numbers, not the case, perhaps I just hear about more. Good raw numbers thought, I appreciate all your effort on this.

David in sC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/16/2009 2:36 PM (GMT -6)   
It surprised me too, on the other hand, 20% or the respondents were more than 88 weeks post surgery
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/16/2009 3:16 PM (GMT -6)   
Surgery for PCa is about 50/50 open versus robotic. Many areas don't have a nearby DaVinci system. Until two years ago Las Vegas had one system in town and three doctors using it. We now have 5 systems but still in Las Vegas you are more likely to have an open procedure if you have it locally. I went to SoCal for mine...

Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 8/16/2009 8:12:58 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2009 3:37 PM (GMT -6)   
Last November, only 15 Prostate Surgeries had been done in the greater Greenville area, by one of the partners of my own surgeon, even he suggested that more practice was needed. I agreed in a heart beat. Didn't wish to be the learning curve. Now all 4 major hospital systems in my region do them on a regular basis.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 677
   Posted 8/16/2009 7:10 PM (GMT -6)   

Thanks for gathering this information.  One thing that was not clear to me was the relationship between pills, pumps, shots and the actual sexual performance.  As an example, I am Not able to get any erection with or without pills, but I always get a full erection with a bi-mix shot.  So I answered that I was ready to go everytime.   Without the shot I get NO erection at all. 

I am not entirely sure how my doctor scores that one, but to me it is 100% failure.  The only way I reverse that failure is with shots.  I don't think your survey related that information correctly.  Maybe you should have first asked if an erection was possible without shots, pills or pump.  That would be my definition of success.  What do you think?


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/17/2009 10:22 AM (GMT -6)   
From what I have read, doctors score it as a success if you can get it done with pills while if you have to use shots you are still in the ED category. Of course there are always those who inflate their statistics by ignoring how their patients get "inflated"

I'll try some more analysis about what is used. One thing that I missed was not asking about the use of pills etc before treatment. I suspect that there is some bias in the medical community that by the time you are old enough to be treated for PC you are also old enough to be having ED issues before treatment
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


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 677
   Posted 8/17/2009 10:52 AM (GMT -6)   
geezer99 said...
From what I have read, doctors score it as a success if you can get it done with pills while if you have to use shots you are still in the ED category. Of course there are always those who inflate their statistics by ignoring how their patients get "inflated"

I'll try some more analysis about what is used. One thing that I missed was not asking about the use of pills etc before treatment. I suspect that there is some bias in the medical community that by the time you are old enough to be treated for PC you are also old enough to be having ED issues before treatment

I think you are right that many urologists assume that ED existed before surgery.  However your raw results seem to indicate that (at least with this group) it is not the case.  In fact it seems a majority of your responders indicated no erectile problems before surgery. They also seemed to indicate that their post surgery success was due to pills and shots.  Another thing that might help understand what is happening is to relate the age at surgery to the erectile success.
 
As I pointed out, it is also important to know the number of patients who had complete erectile success without pills or shots or pumps.   That is my definition of success.
thanks...
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/17/2009 12:37 PM (GMT -6)   
This is such good data. So much can be learned. I'm still on the short end of recovery and don't know if I am a member of the ED team. In general, how many weeks after surgery does it take before you know where you stand (or not)? One partial nerve sparing. One gone.
Plotting and correlating these data (open vs. robot) and vs. time will really help future guys make decisions. Thanks for your efforts.
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/17/2009 4:37 PM (GMT -6)   
I found the information useful but it would have been good to see a correlation between say.
 
1) one side spared + levitra+ erection %+ penetration= success rate %
 
2) one side spared + muse + erection % + penetration = success rate %
 
3)  one side spared + injection + erection % + penetration = success rate %
 
That type of thing.  I do have a question?  Do any of you guys with one side spared have a good erection taking levitra or one of the other pills consistently?
 
PSA 4.7 August 2008
PSA 4.7 September 2008 retest
Biopsy late September 2008 6 of 12 positive and gleason 8
DiVinci radical laposcopy surgery November 3, 2008
Nerve spariing surgery.  left side not touched and right side partly disturbed
results of pathology report, cancer contained in capsule in one area
gleason reduced to 7
seminal vessicles and lymph nodes clear
regained full control of bladder with no leakage in about April 09
erections coming back in April 09 and improving
PSA January 09 <.1
PSA April 09 <.1
PSA July 09 <.1
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/17/2009 5:56 PM (GMT -6)   
romeo, i have one side spared, and have had natural errections from day one. an extreme rarity
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 677
   Posted 8/17/2009 6:45 PM (GMT -6)   
Purgatory said...
romeo, i have one side spared, and have had natural errections from day one. an extreme rarity

That is the point I'm trying to make.  You are a success because post surgery (or seeds) you do not require pills or shots to get an erectiion.  Anyone who requires pills or shots to get an erection should be chalked up as a failure by the surgeon unless they had pre surgery problems.  Anyone who can't get and erection even with pills or shots should get a refund.
 
I don't mean to sound harsh, I am glad that shots work for me.  However, I think the post surgery statistics from doctors regarding erections are totally inaccurate.

Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 8/17/2009 8:34 PM (GMT -6)   
David I think that I am the same as you only had one side spared (not sure which side) I am now getting good strong erections which should be plenty good enough for penetration (cannot try yet only 3 weeks after operation) and had open surgery like you
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/17/2009 8:47 PM (GMT -6)   
Colin - don't dare try anything this soon, know you won't, there's a lot of delicate suturing and stiching inside you, resist the temptation at all costs. My own surgeon and my new Radiation Oncologist are equally amazed that I have had no ED, never even used a pump. They both agree that it makes no medical sense, but if I work, I work.

lifegud - I fully understand your anger and frustration on the subject, it effects most men after surgery, and I agree, I think all the overly positive stats on post surgery ED is grossly overstated at the least. When you read in detail, the nuances of our operations, its a miracle than anybody ever has an errection on their own. RP is considered one of the more complex surgeries out there. And like I tell others, its not like the surgeon is following dotted lines or little lights showing the cancer cells or the intracies of the nerve bundles.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 8/17/2009 9:02 PM (GMT -6)   
Thanks for the concern but I will not try anything to soon (how long after should I wait) if you remember when I was choosing my doctor the ED side did not concern me I was more worried about the continence side so I can be patient and any joy I get will be a bonus Good luck for today
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/17/2009 9:10 PM (GMT -6)   
Colin, your thinking is in the right and normal order for us surgery guys. It's get the cancer first, then work on the incontinence if any, then see where you stand ED. Just follow your doctors instructions on the healing part and the healing schedule, and you should continue to do fine.
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 8/17/2009 9:33 PM (GMT -6)   
Thanks David but I think the doctor attitude in Thailand is different I have been given no advice about incontinence or ED I even had to ask how long before I could pick up baby I do not have an appointment to see the doctor till 3 months time for a PSA test so I have had no instructions about how long to wait before having sex (maybe he did not think that I was going to be able to have sex)
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/18/2009 10:35 AM (GMT -6)   
So when the doctors as discussing their success rate they are listing the rate of success with no drugs or injections and after what period of time....2 years?  Or are they listing the rate of success utilizing anytype of means necessary.  Pills, injections, muse etc. at the end of the 2 year period?  Just listening to everyone it seems the injections work 100% or close to it but as in my case come with side effects or potential side effects like a 6 hour erection.  It is interesting in a way when you think about how things change in importance.  First your big concern is living and once you work through that initial issue you just want to make it through the day dry and then after that you want to be secretariat again!  Well I guess that is part of life and what we should strive for.
 
PSA 4.7 August 2008
PSA 4.7 September 2008 retest
Biopsy late September 2008 6 of 12 positive and gleason 8
DiVinci radical laposcopy surgery November 3, 2008
Nerve spariing surgery.  left side not touched and right side partly disturbed
results of pathology report, cancer contained in capsule in one area
gleason reduced to 7
seminal vessicles and lymph nodes clear
regained full control of bladder with no leakage in about April 09
erections coming back in April 09 and improving
PSA January 09 <.1
PSA April 09 <.1
PSA July 09 <.1
 
 


steph_beer_me
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 8/18/2009 6:16 PM (GMT -6)   
We're probably veering slightly OT here, but this is a very interesting thread. My own personal experience is nerves spared on both sides BUT my surgeon went on to indicate percentage of each nerve spared (> 50% each side, he couldn't/wouldn't specify further). Prior to surgery I never considered percentage of nerve spared, just a binary saved or not saved. I'm not sure what to make of this regarding my potential to achieve penetrable erections. Right now (2.5 months post surgery) I can achieve only about 50% of previous excellent function - unfortunately not enough for penetration. This is with or without ED Meds. I've tried VED and neither I or my wife like the erection quality at all (feels artifical, like wearing 3 condoms and I can't wait to get the ring off).

Personally, I would consider success to be useable erections with ED meds. The ED meds still allow the spontaneity that I (we) desire and are only a minor inconvenience, imo. Regarding the expense, I use All Day Chemist which is a very reasonable alternative, as discussed periodically on this forum.

Has anyone else had their docs indicate percentage of nerves spared and whether we should consider anything greater than a certain percentage to be the binary 1, "nerve spared".
Age 40
Diagnosed at age 40 (March 2009) as a result of routine physical
Family history - Father diagnosed and treated at 64, one of his brothers at 70, maternal uncle at 60
PSA 19.14 (first PSA), pre-op PSA 3.93 (second PSA)
1st DRE - abnormal - 1cm nodule -  2 subsequent DREs by 2 different surgeons showed some firmness on right side, no nodule
14 biopsy cores - 1/4 positive on left, < 5% malignant, 3/7 positive on right, 10% malignant, 3 cores of nodule showed no malignancy
Gleason 3 + 3 = 6
Cat Scan - negative, believed to be prostate confined
Bone Scan - negative, no distant metastasis
Davinci RP performed 6/1 by Dr. Jean Joseph at Strong Hospital in Rochester
great wife and 3 young children (ages 4, 6, 8)


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/18/2009 7:50 PM (GMT -6)   

Steph,

 

my doctor just told me the left side was not touched and the right side was cut into so he called is disturbed one time and then then next time told me that "well let's just say you had one side spared". So I am not sure but can tell you that I am getting better but not sure how good it will get but then again I am not 9 months into this thing yet so I am hopeful.


 
PSA 4.7 August 2008
PSA 4.7 September 2008 retest
Biopsy late September 2008 6 of 12 positive and gleason 8
DiVinci radical laposcopy surgery November 3, 2008
Nerve spariing surgery.  left side not touched and right side partly disturbed
results of pathology report, cancer contained in capsule in one area
gleason reduced to 7
seminal vessicles and lymph nodes clear
regained full control of bladder with no leakage in about April 09
erections coming back in April 09 and improving
PSA January 09 <.1
PSA April 09 <.1
PSA July 09 <.1
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 10/4/2009 5:47 AM (GMT -6)   
This is the kind of survey I'd like to see published with each Uro.
And one for incontinence too.
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