still leaky

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Dave - 27 May 2004 11:01 GMT

I'm 11 weeks post-op and still having similar problems to a lot of
posters. I'm not sure about the wisdom of using a clamp, I don't think
it's for me but I sure as hell would like to not have to worry about
"accidents". I'm using 2-3 pads a day and one overnight. I'm seeing a
physio about the exercises and she keeps advising to increase the
frequency, repetitions and "hold time" etc as well as variations (like
holding tight then jumping without leaking) but am beginning to wonder
about the efficacy of them.

I have an appointment with the surgeon tomorrow for a follow-up.

It has been suggested to me that maybe accupuncture is worth a try,
comments? Also, I intend asking about supplements (vitamins etc) to
take from now on. I believe the stats say that I have a 64% chance of
being cancer-free in 5 years, I wonder if there is any way to increase
the odds. I'm reluctant to take anything with saw palmetto as I believe
that is a bit like removing the lamp from the alarm panel, but maybe a
multi with Vits A, C, E, Ginko Baloba, anti-oxidants etc.

Dave
Dec 03 PSA 10.8
Jan 04 Dx PCa T2a Gleason 5
Mar 04 RRP, post op path good, all contained
May 04 cystoscopy & BNI now pi**ing like racehorse

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Steve Kramer - 27 May 2004 11:38 GMT

Add E, Green Tea, and Sellenium

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA .07 .05
Lupron 7/03, 8/03, 12/03, 4/04

> I'm 11 weeks post-op and still having similar problems to a lot of
> posters. I'm not sure about the wisdom of using a clamp, I don't think
[quoted text clipped - 20 lines]
> Mar 04 RRP, post op path good, all contained
> May 04 cystoscopy & BNI now pi**ing like racehorse

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John Loomis - 27 May 2004 14:53 GMT

Hi Dave,

I am sorry that I have no magic answer to the problems you have other that
it takes time.

Walking is a great form of exersise.
I was leak free somewhat the day the cath was removed. It got dry after
time. I did kiegels...
Good wishes.
John Loomis

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Don Coon - 27 May 2004 15:02 GMT

Hi Dave,

According to a John Hopkins study plublished in Walsh's book, "almost" 50%
of men were continent after three months. So you have a better than even
chance that you'll still be leaking at 13 weeks. I don't have access to the
book right now so I don't know what the stats are are 6, 9 or 12 months.

Hanging in there with you : )

Don

RRP on 3/29/04

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David S. - 28 May 2004 02:06 GMT

Dave:
At 11 weeks I was using 4-5 pads per day. When the catheter came out in
the first couple weeks I was using 5-6. At nine months I am using 1-2, so
to me if you are using only 2-3 at this point that is very good.
I did the kegel exercises until I returned to work, 5 weeks post op.
Then it is not that I decided to stop, rather things got busy and I just
forgot. I am thinking about starting them up again to see if it helps me
any. My advice is to do them, but do not overdo it. It probably will
increase your odds of being dry faster. In my non-medical opinion this is a
nerve thing, and the circumstances are different for all of us. Kegels or
no kegels, if the nerves are not functioning yet you will not be continent.
Just my opinion.
Best of luck to you.
Thank you.
David S.

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jk - 28 May 2004 03:23 GMT

> I'm 11 weeks post-op and still having similar problems to a lot of
> posters. I'm not sure about the wisdom of using a clamp, I don't think
[quoted text clipped - 10 lines]
> comments? Also, I intend asking about supplements (vitamins etc) to
> take from now on. I believe the stats say that I have a 64% chance of

Hang in there.....it took me 5 months to be really dry. Some are blessed
with being dry right away, others take longer.

Signature

JK Sinrod
Sinrod Stained Glass Studios
www.sinrodstudios.com
Coney Island Memories
www.sinrodstudios.com/coneymemories

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Danny McCarty - 29 May 2004 19:36 GMT

>Subject: Re: still leaky
>From: "jk" jksinrod@aol.com
[quoted text clipped - 18 lines]
> Hang in there.....it took me 5 months to be really dry. Some are blessed
>with being dry right away, others take longer.

Today, three and a half years after diagnosis, my incontinence is much worse
than it was a month after surgery. That chemotherapy really messed me up. So
count your blessings.

Jan. 5, 2001, PSA 5.2
Jan 10, 2001, PSA 10.4 (different lab).
Feb 20, 2001, cancer in 6 of 8 cores, Gleason 4 + 3 = 7
Apr. 25, 2001, a few PCa cells in seminal vesical, none in lymph nodes, margins
clear. Gleason 8 (9?).
Jul 9, 2001, PSA 10.5, began Casodex & Proscar.
Oct 10 to Dec 25, 2001, external beam radiation.
Jan 5, 2002, PSA 1.1
Jun 10, 2002, PSA 10.7, began Leukine injections.
Dec 12, 2002, PSA 12.5, added thalidomide tablets.
Aug 15, 2003, PSA 34.5, first Lupron injection.
Oct 17, 2003, began 24 week chemotherapy regime.
Dec 6, 2003, PSA 23.2
Feb 3, 2004, PSA 34.5, bone scan improved.
Feb 14, 2004, PSA 10.5
Feb 29, 2004, PSA 32.1
Mar 13, 2004, PSA 11.2, bone scan better than 3 Feb.
May 5 PSA 12.0, doc likes it.
June 17, will have bone scan.

Median survival after diagnosis is five years- I haven't experienced any direct
symptoms of PCa even now, at 3.5 years, so I expect to beat that!

Danny

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