Which Ideas Helped Me the most

RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
invasion (4); PSA since <0.007

Two things, which were of the biggest help:
1. A cancer patient advised keeping a detailed journal beginning with
the first doctor visit. I bought a hardbound journal. My wife went to
see doctors with me and wrote in it while they talked. It went with us
to the hospital and my family kept notes in it: every visit from a
doctor, nurse or anyone else was recorded in detail. I have kept it
going since and it has been of immense help to look back on for
information, which would have been lost and forgotten otherwise.
2. I took a cane with me to the hospital. I was in the hospital for a
week. It was great for walking at the hospital. It was great for
leaving the hospital and during the 4-hour car trip home - and for
recuperating at home. Really helped when getting out of a chair or off
the couch.

"H F" <pete@gtek.biz> wrote in message
news:1e32d553-b8b2-4d81-9244-0b6bc83c4f20@34g2000hsh.googlegroups.com...
> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
> invasion (4); PSA since <0.007

Interesting about the cane, but that doesn't touch the rest! T3, lymph
involvement, G9, and now after an RP you're at 0.007? That's fantastic!

On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer"
<skramer@cinci.rr.com> wrote:

>"H F" <pete@gtek.biz> wrote in message
>news:1e32d553-b8b2-4d81-9244-0b6bc83c4f20@34g2000hsh.googlegroups.com...
>> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
>> invasion (4); PSA since <0.007
>
>Interesting about the cane, but that doesn't touch the rest! T3, lymph
>involvement, G9, and now after an RP you're at 0.007? That's fantastic!
>

Pete
I agree with Steve. Great stuff. What treatment did you receive after
the RP - any? Thanks.

MikeHi

On May 16, 6:24*am, mik...@anon.com wrote:
> On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer"
>
> <skra...@cinci.rr.com> wrote:
> >"H F" <p...@gtek.biz> wrote in message
> >news:1e32d553-b8b2-4d81-9244-0b6bc83c4f20@34g2000hsh.googlegroups.com...
> >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
> >> invasion (4); PSA since <0.007
>
> >Interesting about the cane, but that doesn't touch the rest! *T3, lymph
> >involvement, G9, and now after an RP you're at 0.007? *That's fantastic!
>
> Pete
> I agree with Steve. Great stuff. What treatment did you receive after
> the RP - any? *Thanks.
>
> MikeHi

Mike - I received no other treatment after the RP! I attribute the
success so far to my surgical team. My doctors were truly amazed. They
have enrolled me in a Clinical Trial. I have been randomized to a
defered treatment group. When PSA reaches 0.4 I am to receive a
combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
if I ought to proceed with this "doubly whammy" at that point - or
not...............

H F wrote:
> I received no other treatment after the RP! ...
> When PSA reaches 0.4 I am to receive a
> combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
> if I ought to proceed with this "doubly whammy" at that point - or
> not...............

I am making no such decisions until the time comes, as the PC treatment
world is changing rapidly due to very high levels of attention and many
ongoing trials. When my PSA reaches some magical point, I'll resume my
research and move in with my oncs. Only then will we decide whether to
treat then according to the newest information or wait until I get
symptoms. If the latter, we'll all go back to observation mode and
reassess options when symptoms appear (or PSA goes ballistic). At
present, I'd have to say I'm not leaning towards further treatment until
it will *improve* my QOL, and I'm probably many years from that point.

So far, 42 months post-op, my PSA is still just bouncing up and down at
random between 0.006 and 0.033 in the supersensitive zone. The normal
PSA tests would still just show "undetectable". If my PC wants me to
make sacrifices for it, it's going to have to sit up and beg more loudly
than that.

I.P.

On Fri, 16 May 2008 04:56:51 -0700 (PDT), H F <pete@gtek.biz> wrote:

>> >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
>> >> invasion (4); PSA since <0.007

On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer" wrote:
>>
>> >Interesting about the cane, but that doesn't touch the rest! *T3, lymph
>> >involvement, G9, and now after an RP you're at 0.007? *That's fantastic!

On May 16, 6:24*am, MikeHi wrote:
>> I agree with Steve. Great stuff. What treatment did you receive after
>> the RP - any? *Thanks.

HF replied:
>Mike - I received no other treatment after the RP! I attribute the
>success so far to my surgical team. My doctors were truly amazed. They
>have enrolled me in a Clinical Trial. I have been randomized to a
>defered treatment group. When PSA reaches 0.4 I am to receive a
>combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
>if I ought to proceed with this "doubly whammy" at that point - or
>not...............

MikeHi writes:

HF..Thanks for info. I've had similar diagnosis + seminal vesicle
involvement. All knocked off with minimal side effects by HIFU. But
now my PSA is whipping up. I haven't been suprised by the jump -
because of the G9. I had always anticipated metastasis ever since the
score was established, whatever was done to the primary. So that's why
I agree with Steve you've done marvellously well - great to learn.

May we also know please what was your PSA pre-op - and any side
effects at all in the 14 months? I'm a poor student compared to many
on this ng but I can't quite understand why you're going on ADT AND
chemo when you haven't had (it would appear from the low present
figure) a PSA relapse?

I would add that IPF's views about going on to ADT (the post after
mine) tend to coincide with the way I'm feeling at the moment.. But as
I say I'll record what's what soon.

Kind regards HF
Best wishes to all
MikeHi

mikehi@anon.com wrote:
>
> I would add that IPF's views about going on to ADT (the post after
> mine) tend to coincide with the way I'm feeling at the moment.

Although I stand behind those views in general, keep in mind that I have
extra incentives to avoid premature ADT which tip my scales.

I.P.

On May 16, 11:10 am, "I.P. Freely" <fuhgheddabou...@noway.nohow>
wrote:
> H F wrote:
> > I received no other treatment after the RP! ...
>
> > When PSA reaches 0.4 I am to receive a
>
> > combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
> > if I ought to proceed with this "doubly whammy" at that point - or
> > not...............
>
> I am making no such decisions until the time comes, as the PC treatment
> world is changing rapidly due to very high levels of attention and many
> ongoing trials. When my PSA reaches some magical point, I'll resume my
> research and move in with my oncs. Only then will we decide whether to
> treat then according to the newest information or wait until I get
> symptoms. If the latter, we'll all go back to observation mode and
> reassess options when symptoms appear (or PSA goes ballistic). At
> present, I'd have to say I'm not leaning towards further treatment until
> it will *improve* my QOL, and I'm probably many years from that point.
>
> So far, 42 months post-op, my PSA is still just bouncing up and down at
> random between 0.006 and 0.033 in the supersensitive zone. The normal
> PSA tests would still just show "undetectable". If my PC wants me to
> make sacrifices for it, it's going to have to sit up and beg more loudly
> than that.
>
> I.P.

Lucky guy! - enjoy it and hope it stays there!
Lud

On Sat, 17 May 2008 13:38:34 -0700, "I.P. Freely"
<fuhgheddaboutit@noway.nohow> wrote:

>mikehi@anon.com wrote:
>>
>> I would add that IPF's views about going on to ADT (the post after
>> mine) tend to coincide with the way I'm feeling at the moment.

I.P. replied

>Although I stand behind those views in general, keep in mind that I have
>extra incentives to avoid premature ADT which tip my scales.
>
>I.P.

Hi IP

Thanks for your note. But I'm not copying you - everybody on this ng
has all sorts of different parameters deciding their treatment. I read
as much as I can of their experiences. I listen a lot to the combative
experts on the Prostate Cancer Update pods I've pointed to previously.
I read you - and the guys here who have quite different views. It's
why the ng is so valuable. Be lost without it.

I haven't made any decisions but I'll probably be asked to in the next
few weeks. It just happens that at this moment for my own reasons I'
'tend towards' the views you hold on accepting ADT. Also at this
moment I don't know quite what I'll be offered - or what my answer
will be.

Best wishes to all
MikeHi

On May 17, 3:11*pm, mik...@anon.com wrote:
> On Fri, 16 May 2008 04:56:51 -0700 (PDT), H F <p...@gtek.biz> wrote:
> >> >> RP 14 months ago; T3a, nerve invasion, Gleason = 9, lymph node
> >> >> invasion (4); PSA since <0.007
> On Thu, 15 May 2008 17:33:20 -0400, "Steve Kramer" wrote:
>
> >> >Interesting about the cane, but that doesn't touch the rest! *T3, lymph
> >> >involvement, G9, and now after an RP you're at 0.007? *That's fantastic!
>
> On May 16, 6:24*am, MikeHi wrote:
>
> >> I agree with Steve. Great stuff. What treatment did you receive after
> >> the RP - any? *Thanks.
>
> HF replied:
>
> >Mike - I received no other treatment after the RP! I attribute the
> >success so far to my surgical team. My doctors were truly amazed. They
> >have enrolled me in a Clinical Trial. I have been randomized to a
> >defered treatment group. When PSA reaches 0.4 I am to receive a
> >combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
> >if I ought to proceed with this "doubly whammy" at that point - or
> >not...............
> MikeHi writes:
>
> HF..Thanks for info. I've had similar diagnosis + seminal vesicle
> involvement. All knocked off with minimal side effects by HIFU. But
> now my PSA is whipping up. *I haven't been suprised by the jump -
> because of the G9. *I had always anticipated metastasis ever since the
> score was established, whatever was done to the primary. So that's why
> I agree with Steve you've done marvellously well - great to learn.
>
> May we also know please what was your PSA pre-op - and any side
> effects at all in the 14 months? I'm a poor student compared to many
> on this ng but I can't quite understand why you're going on ADT AND
> chemo when you haven't had (it would appear from the low present
> figure) *a PSA relapse?
>
> *I would add that IPF's views about going on to ADT (the post after
> mine) tend to coincide with the way I'm feeling at the moment.. But as
> I say I'll record what's what *soon.
>
> Kind regards HF
> Best wishes to all
> MikeHi

Mike: PSA pre op:
7/21/2006 6.000
1/16/2007 10.240
3/6/2007 12.400
3/12/2007 13.100
Side effects: tiredness, depression, incontinence (now 3 pads/24hrs),
ED, spent last night in ER with lots of blood in urine - they say
bladder infection - can't tell whether it is a side effect or not -
Urologist appointment in next few days.

I will not start the treatment until I have PSA relapse. The stack of
papers I have read seem to suggest that hitting the PCa early may be a
better option. One paper, also, is very intriguing (though it is only
a small sample) in suggesting that chemotherapy PRECEEDING hormone
therapy or coincidental with hormonal therapy is superior.
"Conceivably, patients in whom the primary tumor sites are surgically
removed initially (via RP) might be more amenable to disease control
at the time of recurrence with systemically directed salvage
treatments (such as chemotherapy plus hormonal
treatment).............five men have NED 11 to 37.4 months after PAB.
These results could be skewed because of the limited numbers of
patients enrolled............" ( http://jco.ascopubs.org/cgi/content/full/23/12/2789
)

Of course, by the time I have progression there may be more attractive
options. My doctor is involved in bringing a vaccine therapy trial
online which I am anxious to look at.

Best wishes to everyone. My prayer going into RP was "Lord: help my
docotors know more today than the knew yesterday."

By the way - I am starting to come out of the depression a bit - which
has - in a way - been the toughest part of the entire ordeal for me.

H F

HF wrote: /Big snip)

> When PSA reaches 0.4 I am to receive a
>> >combination ADT (Eligard) and Chemo (Taxotere). I have been wondering
>> >if I ought to proceed with this "doubly whammy" at that point - or
>> >not...............

MikeHi wroteMore snips)...:

>> May we also know please what was your PSA pre-op - and any side
>> effects at all in the 14 months? I'm a poor student compared to many
>> on this ng but I can't quite understand why you're going on ADT AND
>> chemo when you haven't had (it would appear from the low present
>> figure) *a PSA relapse?
>>
HF replied: - with my comments:
>Mike: PSA pre op:
>7/21/2006 6.000
>1/16/2007 10.240
>3/6/2007 12.400
>3/12/2007 13.100

>Side effects: tiredness, depression, incontinence (now 3 pads/24hrs),
>ED, spent last night in ER with lots of blood in urine - they say
>bladder infection - can't tell whether it is a side effect or not -
>Urologist appointment in next few days.

Best of luck sorting those HF.
>
>I will not start the treatment until I have PSA relapse.

I've got it - but still waiting.Will explain later.

>The stack of
>papers I have read seem to suggest that hitting the PCa early may be a
>better option. One paper, also, is very intriguing (though it is only
>a small sample) in suggesting that chemotherapy PRECEEDING hormone
>therapy or coincidental with hormonal therapy is superior.

HF at this stage especially in your thinking (and for that matter
anybody in the ng) have a listen to the pods at :
http://www.researchtopractice.net/podcast/feed/PCU.xml
I have found them remarkable in being a patient listening to leading
specialists discussing in great depth how we could be treated.
'Treatment of PSA-Only' disease dated 26/11-07 I think is relevant to
you -and me - and the paper you quote. I often get lost in these
expert - and often fiercely disputed - discussions but something
useful I'm sure sinks in to my sub-conscious for further
consideration.

>/snip snip....
>Of course, by the time I have progression there may be more attractive
>options. My doctor is involved in bringing a vaccine therapy trial
>online which I am anxious to look at.

I'm keeping beady eyes in that direction too. Lipitor + Celebrex as
good as ADT?? At present only the mice know, but...I hold the rate of
research -genes and all - is exponential. Five years time totally
diferent discussions. Seven years silver bullet? Ten years for sure.
You can quote me, (well, some might say, MikeWho?)
>
>Best wishes to everyone. My prayer going into RP was "Lord: help my
>docotors know more today than the knew yesterday."

They do HF. So my prayer would be: "Let them all agree for once, so
that we know." Five years.
>
>By the way - I am starting to come out of the depression a bit - which
>has - in a way - been the toughest part of the entire ordeal for me.

You've got lots of good friends here HF all pulling for you and I'm
sure you're at an age where with your current PSA readings you'll one
day find you're sailing in much calmer seas. Stay undepressed, all
will be well.

Kind regards
Best wishes to al
MikeHi