reaching out

livinadream

Veteran Member

Joined : Apr 2008

Posts : 1382

Posted 5/2/2008 6:22 PM (GMT -6)

Are there many people involved in local or national support groups? If so please share the dynamics.

My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes 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

Veteran Member

Joined : Nov 2006

Posts : 883

Posted 5/2/2008 10:51 PM (GMT -6)

I just support on here.

kw

43 at Dx and Surgery

PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7

RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear.

Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006

First Post op PSA on Dec. 11, 2006 Undetectable 0.00.

ED workable and usable with Viagra.

Feb. 20th, 2007 - Feb. 4th, 2008 Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture to try to resolve ongoing incontinance (4-6 pads a day) All PSA's 0.00.

Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for surgical fix for incontinance.

Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.

March 27th, 2008 - Sling not working, Little or no improvement.

April 18, 2008 - Collagen injection. Back to using 4-6 full pads a day within a week.

May 15, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise. Will start making conusultation appiontments for AUS after we return.

Tony Crispino

Veteran Member

Joined : Dec 2006

Posts : 8128

Posted 5/2/2008 11:05 PM (GMT -6)

I have attended USTOO meetings and donated to the prostate cancer foundation. But the best outside support I have received came from right here. I like to think my best contributions were here as well. It certainly is great to have this place 24 hours a day.

Tony

Age 45 (44 when Dx)

Pre-op PSA was 19.8

Surgery on Feb 16, 2007 @ The City of Hope

Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)

HT began in May, '07 with Lupron and Casodex 50mg

IMRT radiation for 38 Treatments ending August 3, '07

Current PSA (1/08): <0.1

I will continue HT until May '09.

Years in Remission (3/23/07): 1

Visit my Journey at:

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

STAY POSITIVE!

Prostate Cancer Forum Moderator

lawink

Veteran Member

Joined : Oct 2006

Posts : 621

Posted 5/2/2008 11:14 PM (GMT -6)

Our best support is here. Bob also participates in a "Ride for Dad for Prostate Cancer" motorcycle ride each year.
;o) Linda & Bob

Bob (62) - Laproscopic Prostate Removal Sept 27, 2006 at age 60.

2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.

Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)

PSA UNDETECTABLE Nov 2006, Feb, May, Oct2007. ONE YEAR!!!! WHOOO HOOOO!

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.

Doting Daughter

Veteran Member

Joined : Aug 2007

Posts : 1064

Posted 5/3/2008 12:15 AM (GMT -6)

Hi Linda & Bob-

I am curious about your motorcycle ride. Is it a local or national event? What a great idea!!

Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation started March 03-April 22, 2008- 8 weeks 5x a week
8 weeks of radiation down!!!
Praying for a cured dad. First PSA 3 months!

lawink

Veteran Member

Joined : Oct 2006

Posts : 621

Posted 5/3/2008 7:55 AM (GMT -6)

Hi Doting .

We are in Canada. The ride originated in the east I believe. Last year it moved west . . Calgary had theirs and it was a great success with around 150 riders. . . Edmonton did their's next (on father's day) last year (our first one) and had over 400 riders. More are expected this year. Of course people sign pledges for donations first. I cannot remember the total donation amount, but it was a huge success.

If you google "edmonton ride for dad" you will find information and pictures. I'm sure this is done in other areas.

Side note . . . do you ride?? Bob got his first motor bike at age 60 (two years ago) when we all thought he was going through his second childhood. He loves it . . I'm terrified but suppportive but do not ride myself. . . . look funny on back of a bike with both feet planted firmly on the ground.

Take care!

;o) Linda

livinadream

Veteran Member

Joined : Apr 2008

Posts : 1382

Posted 5/4/2008 2:48 PM (GMT -6)

thanks to everyone for finding a means of reaching out that fits their needs. It is so important that patients and caregivers find an outlet to express those real human emotions. healing well provides that, as I am sure many local events do. When depression creeps in, please reach out, help is close.

peace and love
Dale

My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes 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

Gordy

Veteran Member

Joined : Jun 2005

Posts : 528

Posted 5/4/2008 3:10 PM (GMT -6)

Our Us Too meetings usually have a speaker and then the group breaks up into smaller groups broken up by the therapy/path one is interested in. There are groups for surgery, radiation, WW, etc. In each group there are experienced guys to answer the questions of the newbies and their wives.

The speakers have ranged from local docs, dietitians, mood therapists, social workers, etc to Dr. Peter Scardino. I think it's a good mix of professionals and peer to peer discussions (as we have here).

-Les

1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.

livinadream

Veteran Member

Joined : Apr 2008

Posts : 1382

Posted 5/4/2008 4:40 PM (GMT -6)

I think I will check into starting an Us Too chapter here in my hometown.

My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes 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

PianoMan

Regular Member

Joined : Feb 2007

Posts : 365

Posted 5/4/2008 8:26 PM (GMT -6)

Like TC-Las Vegas, I have been involved with the local Us Too group. The group meets once a month and each meeting features a speaker on a subject related to PCa. There are also opportunities to mingle and meet others with similar situations and concerns. Unfortunately, they meet on the third Thursday of each month, when, without fail, my wife is either at school (persuing her master's) or up in Utah on real estate business. So, I'm home in charge of the feeding, homework etc. with my 13-year-old. So I miss most of the meetings, but help them with publicizing the group's efforts.

I think the strongest aspect of our local US Too group is its founder and leader, Lew, who started it many years ago. When I was first diagnosed, the ACS gave me his number and from there forward he was always there to pick up the phone, open the door to his home, and help in any way possible. He's over 18 years out of surgery and doing fine. He's extremely knowledgeable about the latest local and regional resources for guys with PCa, in terms of diagnoses and/or treatments. And he continues to be an advocate for us guys -- working with the politicos, watching for potential legislation in our favor etc. He was a God-send for me.

BUT -- like TC-Vegas (Tony) said, this forum has been invaluable because of the range of PCa guys and spouses who come here with their questions, suggestions and encouragements. I never thought I'd find such a place on the Internet.

Best to ya,

Tom

D.O.B - 8/9/52

PSA: First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06. Both lobes involved. Six out of eight cores positive - from 100 percent to 90, to 60, to 50, two 20s and two zeros.

Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear. Volume of tumor much less than biopsy suggested. 12 percent overall.

First post-surgery PSA -- Undetectable, 2/20/07

Second post-surgery PSA -- Undetectable, 9/11/07

Third post-surgery PSA -- Undetactable, 2/15/08

Surgery for bilateral inguinal hernia repair, 4/4/08

Post Edited (PianoMan) : 5/4/2008 7:36:58 PM (GMT-6)

livinadream

Veteran Member

Joined : Apr 2008

Posts : 1382

Posted 5/4/2008 8:29 PM (GMT -6)

how did you find out about your local Us Too group? I sent them an email a couple of weeks ago and have not heard from them yet. They do sound like a good group.
I am working on starting an independent support group if all else fails.

My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes 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

PianoMan

Regular Member

Joined : Feb 2007

Posts : 365

Posted 5/4/2008 10:06 PM (GMT -6)

When I was diagnosed, I asked my former (repeat former) urologist if there were any support groups and got kind of a non-response. He said there were some resources out there, but he wouldn't endorse any of them because of some issues he'd had with them.

Next, I called my local chapter of the American Cancer Society and they gave me a name and contact.

Start there.

If you have a problem hooking up with someone from US Too, let me know and I'll talk to our local guy. I'm sure he can help.

D.O.B - 8/9/52

PSA: First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06. Both lobes involved. Six out of eight cores positive - from 100 percent to 90, to 60, to 50, two 20s and two zeros.

Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear. Volume of tumor much less than biopsy suggested. 12 percent overall.

First post-surgery PSA -- Undetectable, 2/20/07

Second post-surgery PSA -- Undetectable, 9/11/07

Third post-surgery PSA -- Undetactable, 2/15/08

Surgery for bilateral inguinal hernia repair, 4/4/08

Paul1959

Veteran Member

Joined : Nov 2007

Posts : 598

Posted 5/5/2008 8:22 AM (GMT -6)

I attend the UsToo chapter in Danbury, CT. It is called Ann's Place and is a great resource for ALL cancer patients. about 20 men meet the first Wednesday of the month. One neat aspect is that their partners/wives meet at the same time down the hall. As often happens, I find that what I get is not support for me, per se, but the fact that there are guys there in MUCH worse situations and I can help them - that is what makes all the difference for me. In helping them, I'm the one who is blessed. It reminds me of how fortunate I am and how grateful i should be for my health. I am doing just fine and don't need it for me anymore, but this perspective keeps me going.

This place still ranks tops for info and knowledge.

Paul

47 at Diagnosis.

Father died of Pca 4/07 at 86.

1/06 PSA 3.15

1/07 PSA 4.6 (Biopsy 3/07 just suspicious)

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

-totally contained to prostate,

-10% involvement in L & R Mid lobes

PSA 0 at six weeks

Pad free on March 14 - (10 weeks.)

ED - Take 100mg viagra every night.

Totally usable erections at 10 weeks.

livinadream

Veteran Member

Joined : Apr 2008

Posts : 1382

Posted 5/5/2008 5:27 PM (GMT -6)

That is my main goal for a support group, to help others, and in turn that helps me. I have been blessed that i have not gone thru the normal phases as of yet. No depression or denial. I know many that are suffering so if I can help them I am happy.

Thanks for all the info
Dale

My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes 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

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