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From: MikeHi on 20 Jul 2008 08:03


I wrote: 'My PSA is skyrocketing'. (PSA with nearly 2 point jump in
last month, appended).

Kh replied:

>I didn't realize your PSA was skyrocketing. No-no. I had a PSADT of
>less than 30 days ... on Lupron.

After gazing in stupefied wonderment at kh's PSADT I humbly amend my
post. It should have read: " My PSA is describing a gentle upward arc
of doubling in five months, and trebling in eleven." I write it with a
big grin, 'cos if kh can PSADT in 30 days and still be gobbling up his
daily ice-cream, chocolate covered, (yum, yum, yes) and fancy chicken
(so good his nurses want to pinch it) - then I know I can sleep easy.
All I need, it seems, is a good dose of kh's food supplement,
taxotere. I might even agree to take it now if it's suggested! (Latest
month's PSA and the rest appended below).

kh's PSA doubling was 'While on Lupron'! What was the point of it
then? - ah, of course, the side-effects are awful, so it must be doing
us good. kh was told it was for "suppressing Pca".

Steve Kramer wrote:
> I don't get that. Taxotere targets quickly replicating cells.
>Why would they not allow all your cancer cells to quickly replicate and thus get targeted?

So I agree with Steve twice over. Your Wizard better have a real good
answer. Otherwise tell him to get his wand serviced and cease
forthwith jabbing the stuff in your bottom.

While I'm here, here's a report about where I am at the moment. 25th
June I recorded my experience of Sonablate 500 HIFU. Very briefly
again. Prostate and primary ablated by HIFU 1. Seminal vesicle not
quite ablated, HIFU 2. In three years, no toxic effects, no cuts, no
blood, no post-op pain, no hospital stays (couple of days). Worst side
effects were several months after HIFU 1 due to scarring at the
bladder neck when I had painful self-cathetering. Ongoing side
effects - some occasional small leaks. Lots of fatigue, mental and
physical, but age (81 this year) and big stress factor of my wife
could account for some of that. With G9, crafty microscopic blighters
that were inevitably lurking from beginning sure enough have now
created two nodules in lymph node and 'suspicious' stuff near sem.ves.
I've also got a complication. I get sharp stabbing pains. Headaches.
At any distance I have double vision. I get quite a lot of nausea. So
I'm now being independently examined in parallel to the Pca (by a
neurologist) who believes I have either paraneoplastic syndrome or
myasthenia gravis. I understand they're caused by antibodies fighting
cancer cells; they become mercenaries and start attacking the immune
system instead. Can't trust anybody these days.

Anybody else been diagnosed with this stuff? I *think* the myasthenia
stuff has been counted out by a blood test I had. (Won't see that
specialist again until August). The paraneo.. etc.. etc is apparently
incurable but I don't believe that either - not this day and
exponential research age. Anyway I may well have neither. Biggest
problem I have with whatever it is is not knowing which pain comes
from what! Anyway the pain to date is a nuisance, but quite bearable.
Kh wouldn't even notice it.

Now, for those of you bored already, here's this weeks' cryptic clue -
(and honest, it isn't entirely irrelevant).

Question: When is a scuttling rodent like a pig worth twenty-one (old)
shillings?

Give up? (No - the Brits have already got it.)

Answer: When one is a lab-rat and the other's a guinea-pig.

Kh wrote of some of his experiences:
> I guess that makes me a good labrat.

Well, as I have past posted, I was a guinea-pig for HIFU. At the time
I started there were trials only up to G7 patients; and well below my
age. Relevance of that is that I may not be typical. Certainly the
bladder neck block, I know from other patients was untypical.

The other relevance is that I'm hoping - intending indeed - to
continue. Who knows, I might end up on taxotere -and now I won't need
to be pushed kicking and screaming into it knowing the food is good
too. But I'm quite convinced toxic solutions are well on the way out.
So I'm hoping to delay my advance by hopefully finding non-toxic
trials. Mark Emberton my HIFU surgeon, who's done a great job for me
over three years has handed me on to a medical oncologist (Steve) at
the UCH specialist oncology clinic.

UCH is a focal centre for cancer studies. And Steve (if he will
excuse the familiarity - haven't even met him yet) has been asked,
following my talks with Mark, if he could look at recruiting me into
new studies. (But hey -I don't want the placebo!) Maybe into something
too, I will ask, that only mice have had the benefit of and I will be
willing to jump trial. Maybe a big dose of a few billion of my white
cells could knock off the Pca and ambush the renegade anti-bodies
causing the other problems at the same time? Now *that* would be worth
a bit of guinea-pigging -or even lab-ratting, methinks!

I've got an appointment with Steve real quick- in only ten days time.
And my condition must be a lot more serious! To see my (totally
overburdened -three hours my last wait) surgeon in the hospital, for
comfort we were offered a seat. If there wasn't one, we either sat on
each other's laps or stood against the wall (mostly the latter). The
other comfort was a cold water dispenser. The leaflet with my new
appointment tells me - hot drinks are free! And: '..take a seat in the
waiting room'. So there must be one! This is the NHS still. Can't
compete with kh's individual TV, and Lorna Doon or any other cookies;
but it ain't half bad.

Will let readers know what happens next after it happens.

Kh also wrote:
> I'm doing the grocery store thing, tofu (made from soybeans), green
>tea, blueberries, ginger, etc. Anything cheap that is rumored to give
>an edge, sure, why not. I even made a tofu burger the other week.
>That sounds weird but vegans eat stuff like that all the time.

Could be a few guys here like me. I'm on my home at home. My wife
away. Often feeling knocked out. So I also do the grocery store thing.
And I want to be able to make food really quickly, not too worried
about 'an edge' - but i do like a bit of mouth-watering. Here's a
small contribution. None of it shatteringly new. But I like it :

Tin of sweetcorn, and tin of tuna. Mix tuna in bowl with goodly
helping mayonnaise. Tagliatelle pasta which cooks in 3 or 4 minutes.
Add spoonful olive oil. (Pasta always with lots water). Drain pasta
leaving tiny drop in bottom. Back into hot pan. Stir in the tuna
mayonnaise mix. Essential tip here. Turn off elec or gas cooker. But
keep pan on hot plate while stirring on bottom just enough time to
make sure it's all piping hot before coming out of pan. (Otherwise
it'll be cold on your plate in minutes).

Same treatment , substitute red salmon - or even better, salmon
trimmings packet from store.

Substitute rice which cooks in 2 minutes (e.g Uncle Ben's - lots of
different flavours I go mostly for Pilau, which good, neutral flavour)
for pasta.

If any of this stuff left over in fridge, before later putting it a
minute or so in the microwave, stir in some cr�me fraiche to brighten
it up.

Cold stuff. Waitrose Deli sandwich fillers - prawn mayonnaise (best of
the supermarket dittos) and coronation chicken. Either one thrown in
with Moroccan couscous and coleslaw - 'ruby' coleslaw from Waitrose
especially nice.

My best straight-out-of the packet cold dish. Tesco honey and mustard
chicken.

Best one-person ready meals for microwaving: Marks and Sparks. (Minced
Beef Hotpot; Lamb casserole). Two minutes. With any of:..

�handful from big bags of frozen carrots, or petits pois, Brussels.
5 minutes.

Quick, cheap chocolate dessert: Cadbury's Flake (in a pot). Tip the
flake into the choc sauce. I gluttonously always add a dash of ice
cream.

Gotta go and eat now.

Before I do. Kh you also let slip in the middle of your post:

>I feel the treatment taking my strength away. It's hard to climb
>stairs, walk more than a few blocks. I catch myself doing the "push
>on the knees to get out of a chair". I'm not letting this beast
>beat me. I climb my stairs, walk, stand up straight even if there is
>an occasional jab in my back.

It's only temporary kh. I for one am relying on you as the pathfinder
lighting the way here. Scores more too. Whatever treatment we get.
It's attitude attitude attitude.

You go on: .
> I'm not letting this beast beat me. I climb my stairs,
>walk, stand up straight even if there is an occasional jab in my back.

You won't let it beat you kh. Nor will we.

My kindest regards

My best wishes to all


MikeHi
"Exponential lightspeed". Def: The discovery of the cure for Pca at a
speed which defies Einstein.
From: Alan Meyer on 20 Jul 2008 15:00
....
> UCH is a focal centre for cancer studies. And Steve (if he will
> excuse the familiarity - haven't even met him yet) has been asked,
> following my talks with Mark, if he could look at recruiting me into
> new studies. (But hey -I don't want the placebo!)
....

Mike,

Getting the placebo isn't always as bad as it sounds.

First of all, it might work! :^)

But seriously, in some trials the arrangement is that
if the drug works, the patients who got the placebo are
allowed to get the real drug, long before the drug is
generally approved for everyone.

Ask the oncologist about this.

Alan
From: Steve Kramer on 20 Jul 2008 15:22

<MikeHi(a)anon.com> wrote in message
news:8e96841otcoeljeghfalsq99c7v38kamiu(a)4ax.com...

> At any distance I have double vision. I get quite a lot of nausea. So
> I'm now being independently examined in parallel to the Pca (by a
> neurologist) who believes I have either paraneoplastic syndrome or
> myasthenia gravis. I understand they're caused by antibodies fighting
> cancer cells; they become mercenaries and start attacking the immune
> system instead. Can't trust anybody these days.
>
> Anybody else been diagnosed with this stuff?

My daughter has one of them. No cancer or medication that I know of. I
think it occurred naturally. But, she was pregnant and wouldn't take meds
for it so is now, for all intents and purposes, blind in her left eye. But,
that cures double vision.


--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Illegitimati non carborundum




From: ronju99 on 20 Jul 2008 16:34
On Jul 20, 3:22 pm, "Steve Kramer" <skra...(a)cinci.rr.com> wrote:
> <Mik...(a)anon.com> wrote in message
>
> news:8e96841otcoeljeghfalsq99c7v38kamiu(a)4ax.com...
>
> > At any distance I have double vision. I get quite a lot of nausea. So
> > I'm now being independently examined in parallel to the Pca (by a
> > neurologist) who believes I have either paraneoplastic syndrome or
> > myasthenia gravis. I understand they're caused by antibodies fighting
> > cancer cells; they become mercenaries and start attacking the immune
> > system instead. Can't trust anybody these days.
>
> > Anybody else been diagnosed with this stuff?
>
> My daughter has one of them. No cancer or medication that I know of. I
> think it occurred naturally. But, she was pregnant and wouldn't take meds
> for it so is now, for all intents and purposes, blind in her left eye. But,
> that cures double vision.
>
> --
> PSA 16 10/17/2000 @ 46
> Biopsy 11/01/2000 G7 (3+4), T2c
> RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
> PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
> EBRT 05-07/2002 @ 47
> PSA .34 .22 .15 .21 .32 PSAD .056 years
> Lupron 07/03 (1 mo) 8/03 and every 4 months there after
> PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
> Casodex added daily 07/06
> PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
> Illegitimati non carborundum

Hi Mike,

I also have a neurological problem that raised its ugly head the year
before I was diagnosed with prostate cancer. Two of my antibodies are
eight times higher level than normal. I've been diagnosed as having
Multifocal motor neuropathy, (MMN). It statred with muscle wasting in
my left index finger and thumb. After my lengthy surgery I also
developed a left foot drop. I've had many blood test, spinal tap,
cervical MRI's and about seven EMG's and NCS plus second and third
opinions. All test came back normal except my auto-antibody test.

I don't believe the antibodies attack the immune system as they are
part of the immune system. What they usually attack most of the time
is parts of the central nervous system. In my case they attack the
nerves outer layer and also the axons of the motor nerves. By chipping
away at these it will eventually leave one with loss of function in
the affected limb or body part that is affected.

I've often felt that some toxin enters the body over time and mutates
healthy cell causing the immune system to respond. It seems the immune
system probably has a tough time distinguishing between healthy cells
and unhealthy cells and eventually attacks both. No one seems to
really know much about the process but the central nervous system is
often the target of these auto-antibodies.

My father lived to 96 and all my relatives live into there 90s so I
don't have any family history.

Ron S.
From: Alan Meyer on 20 Jul 2008 18:13
ronju99 wrote:
> ...
> I don't believe the antibodies attack the immune system as they are
> part of the immune system. What they usually attack most of the time
> is parts of the central nervous system. In my case they attack the
> nerves outer layer and also the axons of the motor nerves.
....

Ron,

That sounds like what multiple-sclerosis does.

I have no idea if it's related or not, but you might be
interested in this article reporting a trial at Johns
Hopkins that had more success with MS than in previous
treatments:

http://www.sciencedaily.com/releases/2008/06/080609162053.htm

Hopkins does a lot with MS and has other materials on their
website.

While it looks promising, on the other hand, I don't know
if people who have cancer ought to be suppressing their
immune systems.

You might ask your doctor about this stuff the next time
you see him. Unfortunately however, this is all cutting
edge science and medicine and I doubt if there are many
docs who have much understanding of it.

Best of luck.

Alan
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