E-Mail Addresses for members

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Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/29/2009 9:47 PM (GMT -6)   
Guys It would help if you guys would put and e-mail address in your profile.  You cam make one on Yahoo or Hot Mail and make it just for this sight correspondence.  I have mine active and I do not get spam from listing my address on my profile.  Just thought you my want to do this.
 
Jeff T
Cajun country


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
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/29/2009 10:07 PM (GMT -6)   
Good call, Jeff,
In fact, everyone should know there is free Email right here at HealingWell. If everyone can set theirs up, it definitely well help with private member to member communications, while still keeping your privacy. You don't need to use your personal Email addresses.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 10/29/2009 10:26 PM (GMT -6)   
I can attest to the value of using the private conversation path of email. I have received a few emails that provided me with information or asked questions that may not have been appropriate for the board.

I did not know that we have the email capability on HW. I used my private email and so far have had no problems, however I am open to change if I can figure it out.

Thanks guys,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/30/2009 6:56 AM (GMT -6)   
Good idea, never had any spam problem from my main e-mail addy being here, over the past year, only trouble I had was some e-mail abuse from a couple of members here, but that was easy enough to solve by blocking their addresses.

I have also have some great letters from some of the folks here.

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 sessions/72 gys.


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 662
   Posted 10/30/2009 12:27 PM (GMT -6)   
I’m very new at all this, not having surgery until this upcoming Monday, but I’d be happy to exchange any and all email correspondence. I have an email posted on my profile that comes directly to my Blackberry. My family uses it at all the time to get my attention. Because I have spent hours and hours of reading post from this site I believe I have been given an advantage. I went from the pity party stage to realizing quickly from you all that I’m going to be in good hands regardless of what direction this thing goes. So if I can be of any help or companionship please mail me.

jnm
Age: 51 years,
Overall Health: Excellent
PSA: 08/31/2009   6.8
DRE: 09/10/2009 "nothing really" ????
BXY: Scheduled at 08:30 on 09/24/2009
GLEASON 3+3=6
Cores 10 of 12 positive
SURG: da Vinci Scheduled for November 2 2009 
 


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 10/30/2009 1:19 PM (GMT -6)   

If you email someone be sure and say something like:

Hi, this is Jeff aka corvetteman3 from healingwell. Meaning state your screen name from here in the mail turn


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/30/2009 1:52 PM (GMT -6)   
I set up:

sheldonprostate@yahoo.com awhile ago.  I've added it at the bottom of my profile. 

Glad to hear from any HWers anytime.

Cheers, Sheldon
 
P.S.  ---  or I thought I did.  It doesn't seem to be showing up.  Hmmmm? 


Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    

Post Edited (Sleepless09) : 10/30/2009 1:57:52 PM (GMT-6)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 10/30/2009 2:41 PM (GMT -6)   
Sheldon and others...You should NOT post your email address in public like you did.
 
There are "bots" that crawl through site like this to harvest email address to be used for spam and GOD only knows what else...
 
<<<Don't Feed the Trolls>>>
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Mbshine
Regular Member


Date Joined Aug 2008
Total Posts : 67
   Posted 10/30/2009 2:49 PM (GMT -6)   
jnm


Good luck and be of positive mind...Got my catheter out yesterday...9 days after robby the robot...and used only 2 pads the first day and little pain and no pain pills for 2+ days....not a nice experience but easier than I feared and sure beats the consequences.

AGE 62 ANGEL FIRE, NM
DX 7/08
EMAIL: MScheinbaum@LF-Financial.com pls put “Healing Well” in subject
psa HAD GONE FROM 1.7 TO 4.3 IN THREE YEARS...DIGITAL AND ULTRA SOUND EXAM SHOWED NO ENLARGEMENT.
BIOPSY SHOWED 2 OF 12 CORES POSITIVE.
TWO TUMORS SHOWED GLEASON 4+3 AND 3+4
NO INDICATION OF ESCAPE FROM CAPSULE OR METASTASIS
STARTED CONSULTATIONS AT SLOAN KETTERING 8/09
DR GUILLONNEAU SAID NO SURGERY UNLESS MASSIVE WEIGHT LOSS.
AT DX 333 LBS, SLEEP APNEA, AND HIGH BP
BARIATRIC SURGERY RECOMMENDED.
LAP BAND SURGERY IN EL PASO, TX 1/23/09
10/1/09 276 LBS, TRIGLYC AND CHOL NORMAL, NO SIGNS OF SLEEP APNEA, ONE BP RX REMOVED AND OTHERS CUT DOSAGE IN HALF;

STARTED QUARTERLY ZOLODEX BY TAOS,NM UROLOGIST, WHO TRAINED AT MSKCC, INJECTIONS AND CASODEX 50MG DAILY 9/08

DAVINCI done 10/19/09 Dr. Bertrand Guillonneau
NYC Memorial Sloan Kettering Cancer Center
Jackson pratt drain removed surgery plus 1 day.
Catheter out 9th day
One heavy duty pad first day without catheter.

PATH REPORT 10/29/09 MSKCC DR VICTOR REUTER
GLEASONS CAN NOT BE DETERMINED, HORMONES DRIED PROSTATE
NO SIGN OF ANY CANCER ESCAPING PROSTATE, OR AT MARGIN
NO SIGN OF ANY CANCER IN ONE LYMPH NODE REMOVED

PROGNOSIS EXCELLENT. PSA IN ONE MONTH
THEN SIX MONTHS
THEN ONCE A YEAR OR MORE
ONE VISIT PER YEAR FOR LIFE.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/30/2009 3:01 PM (GMT -6)   
I to agree that email is a great means of communication. I have had some wonderful discussions with HW members via email.

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
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

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

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%


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/31/2009 5:42 AM (GMT -6)   
Looks like some are jumping on board. Steve said and I agree.

If you email someone be sure and say something like:

Hi, this is Jeff aka corvetteman3 from healingwell. Meaning state your screen name from here in the mail

Best wishes my friends
Jeff T
Cajun Country
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
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 10/31/2009 7:51 AM (GMT -6)   
I was gun shy of giving out my email address at first. For my own personal reasons I did not want anyone to know about my condition. I still have not told even close friends or the people I work with. (Strangely I don't have a problem telling you guys.)
I would not put any personal info on this site directly. You do not want someone Googling you and finding your screen name and your posts. You might be looking for a job or a even a date some day and that might not be info you want to leak out.
Even when we had the get together here, I did not post anything directly. I recently googled GFMPH and found the discussions we were having about the event.

I use an email address that does not include my name and set it up to forward to my regular email. I have never received any spam. (Even though I could use Viagra, Cialis, enlargement and all those other things the spammers advertise.)

Finally, if you check the rules and policies of this site:

"16. Do not post offline personal contact information (ie. your home address, phone numbers etc.) and do not ask for personal information from others. Modify your member profile in the Control Panel (VIEW IMAGE) at the top left corner of the forum to set privacy settings for your account. Use of full names (your first and last name) is allowed but strongly discouraged. This is to protect your security and identity."

Use common sense. Once your info is out there it's out there. There's no "Do over" on the internet.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 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
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/05 10 weeks, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/5 10 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.

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