Sharing info by email

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 11/15/2009 6:47 AM (GMT -6)   
In the past week or so, I have noticed a lot of threads where guys tell others to email them for follow up info or questions, maybe with the idea they are helping to keep the forum unclutttered. Taking conversations offline certainly has it's place, but it also can deprive others of information gained and shared. I understand there are times when you would wish to have a private talk, but in those other times when sharing information with each other, could we ask that you post it on the forum instead/also? The sharing of information is a criticval part of this place and it would be a loss to us all if valuable tips, tidbits, and teachings weren't shared for all. Remember that old Mongolian saying:
" one asks, several answers, all learn"

Thanks
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/15/2009 9:27 AM (GMT -6)   
James, I hear what you are saying. If everyone had a listed e-mail address under their name, then people who need privacy at times or for whatever personal reasons could still e-mail as needed, without advertising it to the group. We are a very open minded group and talk about things in a very blunt way, so I couldn't imagine anyone coming up with something too weird or gross for the group.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4108
   Posted 11/15/2009 9:41 AM (GMT -6)   
James, I am one of the people that has requested members to make a HW e-mail address. I agree with David, sometimes members have some very private info that is requested (probably not of interest on the full board). I have shared info and requested info on the board and will continue to do so.

Please don't think we are trying to make this board less effective.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 11/15/2009 1:46 PM (GMT -6)   

I use email with a member of HW. It definitely is not to be selfish with advise. It is just another level of friendship. We may never meet each other in person or even talk on the phone, but it kind of humanizes what I’m going through. Sometimes communication of the small mundane stuff off line is as important as the on topic stuff that we need here at HW.

Have a great Sunday afternoon all.

Hero


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 11/15/2009 4:49 PM (GMT -6)   
Those of us who choose to be completely anonymous here can do so. And I so choose :-) I discuss topics here that I certainly don't discuss with personal friends, but it may be different I had such a friend with PCa.

In order to comply with forum rules, the subject of ED does have limits. So I see the need for private email or other forums if we need to discuss the finer points of ED. But for everything else, I am entirely happy to post out here "in public".
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 11/15/2009 5:28 PM (GMT -6)   
And just a reminder, if ED talk needs to get really graphic, there is always www.franktalk.org.
I really don't advertise this on here, but there is certainly blunt and frank conversation there that is very helpful.

It's nice to have the email to develop friendships which is entirely natural. But thank Jim, for the reminder that tips, ideas, experiences help us all and there is a curious feeling when you start to wonder just what is being withheld! LOL. Of course curiosity did kill the cat... Hmmmm...wish my cats were more curious.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.

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