Brief Report from the Lab Rat.

My PSA is back up to 18, it was 12 about five weeks ago. This is on
Lupron and after the radiation to my spine.

The back pain continues to fade, my appetite and stomach are improving
but I'm taking Zantac-150 2X day.

The Wizard at JHU switched me to the pure Oxycodone 5 MG, script reads
4-6 hours as needed. I had a minor "issue" at the pharmacy over
that. They don't keep it in stock. 4 day delivery. They needed to
call the doc.

This even though the script paper wasn't from a regular pad. It was
fancy, multi-colored with security features like a $100 bill, was
imprinted "Valid ONLY for Narcotics", and had all kinds of JHU numbers
on it.

I had filled scripts for percocet 10/325 there. I realize that there
is a slightly greater risk for abuse for pure Oxycodone but come on.
I'm what you'd call an "advanced cancer patient with bone pain".

Anyway, I'm busting the 5 mg in half, taking a 2.5 in the morning and
another in the evening.

Here's the news. I spent yesterday at JHU, tubes in both arms. They
took blood just about every hour. I spoke with the Wizard briefly and
the Wizard's apprentice longer, also chatted it up with the "study
manager". All systems go.

The taxotere infusion took 1 hour. There were 2 blood draws during
the infusion. That's all done through a little reusable tube, zero
pain but then the 2.5 Oxcodone tends to buffer little nuisance pains.
I wish it could do something about certain idiots out there in the
business world.

Up in the infusion center, I saw some pretty sick guys. A quarter
were in wheel chairs. Many seemed barely able to walk. I'd put the
average age at 70-75.

At the end of the taxotere infusion I had a buzz or tickle in my
throat. This is one of the side effects. When I mentioned it, they
made me stay another 15 minutes until it cleared. Their fear is
anaphylactic shock. No-no, I'm fine, it's just a tickle.

Sit-stay!

The Wizard said the 80% of patients have a "good" response to
taxotere, most go off after a half dozen to a dozen infusions because
of "side effects". I think the record is about 17 infusions.

A "good" response is a PSA drop of 50% or better. This doesn't sound
great but I'll be a lab rat for taxotere plus the IL-6 antigen. I
might do better.

I spent the next 6 hours waiting around for my 1 hour blood draws.
The JHU blood techs are cool, hard working, smart. Next time, I'll
take a laptop with me, I might subject you all to a co-
contemporaneous, stream of consciousness, rambling.

Leaving Ball-More, I saw Diesel for $4.59.9 gallon, Regular was
running $3.55.9, what a bargain in comparison!

I had dinner at a pal's restaurant, Kaufman's Tavern about a half hour
south of Ball-More, a known good food, heavy serving place. Ordered a
14 ounce T-bone steak, ate half the steak, two servings of green
salad, a small loaf of appetizer bread, baked potato, half the green
beans, will finish the rest tonight. I'd say my appetite is
improving.

The steak was grilled, not fried. Oh my, was it good. It'll be great
tonight too.

-kh Doing better all around.

On Wed, 23 Apr 2008 05:10:25 -0700 (PDT), kh <tchtic@yahoo.com> wrote:

>-kh Doing better all around.


Good to hear - looking forward to the stream of consciousness...

Best of luck with all of this kh.

It is my understanding that responses to taxotere are variable.
Some people don't get too much benefit from it, but there are
others who really win the lottery.

In your next session, you might ask what the docs know about
revlimid. A friend of mine is on it and seems to have had a
good response. He's also hormone refractory.

Alan

On Wed, 23 Apr 2008 05:10:25 -0700 (PDT), kh <tchtic@yahoo.com> wrote:

>
>
>My PSA is back up to 18, it was 12 about five weeks ago. This is on
>Lupron and after the radiation to my spine.
>
>The back pain continues to fade, my appetite and stomach are improving
>but I'm taking Zantac-150 2X day.
>
>The Wizard at JHU switched me to the pure Oxycodone 5 MG, script reads
>4-6 hours as needed. I had a minor "issue" at the pharmacy over
>that. They don't keep it in stock. 4 day delivery. They needed to
>call the doc.
>
>This even though the script paper wasn't from a regular pad. It was
>fancy, multi-colored with security features like a $100 bill, was
>imprinted "Valid ONLY for Narcotics", and had all kinds of JHU numbers
>on it.
>
>I had filled scripts for percocet 10/325 there. I realize that there
>is a slightly greater risk for abuse for pure Oxycodone but come on.
>I'm what you'd call an "advanced cancer patient with bone pain".
>
>Anyway, I'm busting the 5 mg in half, taking a 2.5 in the morning and
>another in the evening.
>
>Here's the news. I spent yesterday at JHU, tubes in both arms. They
>took blood just about every hour. I spoke with the Wizard briefly and
>the Wizard's apprentice longer, also chatted it up with the "study
>manager". All systems go.
>
>The taxotere infusion took 1 hour. There were 2 blood draws during
>the infusion. That's all done through a little reusable tube, zero
>pain but then the 2.5 Oxcodone tends to buffer little nuisance pains.
>I wish it could do something about certain idiots out there in the
>business world.
>
>Up in the infusion center, I saw some pretty sick guys. A quarter
>were in wheel chairs. Many seemed barely able to walk. I'd put the
>average age at 70-75.
>
>At the end of the taxotere infusion I had a buzz or tickle in my
>throat. This is one of the side effects. When I mentioned it, they
>made me stay another 15 minutes until it cleared. Their fear is
>anaphylactic shock. No-no, I'm fine, it's just a tickle.
>
>Sit-stay!
>
>The Wizard said the 80% of patients have a "good" response to
>taxotere, most go off after a half dozen to a dozen infusions because
>of "side effects". I think the record is about 17 infusions.
>
>A "good" response is a PSA drop of 50% or better. This doesn't sound
>great but I'll be a lab rat for taxotere plus the IL-6 antigen. I
>might do better.
>
>I spent the next 6 hours waiting around for my 1 hour blood draws.
>The JHU blood techs are cool, hard working, smart. Next time, I'll
>take a laptop with me, I might subject you all to a co-
>contemporaneous, stream of consciousness, rambling.
>
>Leaving Ball-More, I saw Diesel for $4.59.9 gallon, Regular was
>running $3.55.9, what a bargain in comparison!
>
>I had dinner at a pal's restaurant, Kaufman's Tavern about a half hour
>south of Ball-More, a known good food, heavy serving place. Ordered a
>14 ounce T-bone steak, ate half the steak, two servings of green
>salad, a small loaf of appetizer bread, baked potato, half the green
>beans, will finish the rest tonight. I'd say my appetite is
>improving.
>
>The steak was grilled, not fried. Oh my, was it good. It'll be great
>tonight too.
>
>-kh Doing better all around.


Hi kh

Your first lot of stuf was a bit boring; you know, the back pain and
narcotics you're on now, tubes in your arms all day, however I kept
reading on to find your latest dietary advice. Imagine, then, the
great disappointment, indeed distress, you caused me - and I'm sure
all the posters and lurkers here - when I had to read right to the end
- and then found that there was no mention of the lashings of sauce
and juices with which you normally sluice down your epic and
mouth-watering meals. And Haagen-Daaz ice-cream - how many tubs? Not a
word. How can I write a best seller by stealing your menus and
publishing them as a proven diet for long-lived Pca survival against
all the odds, if you suddenly become such a mealy-mouthed reporter?
Besides, how am I to know what to have for supper tonight? For shame,
Sir.

I hesitate to give you some good news kh, but petrol here in Uk is now
the equivalent of $10 a gallon - so we rely more than ever on your
menus as we can't afford to drive to Fred's caff up the road, let
alone your magnificent sounding Kaufman's Tavern, half an hour south
of Ball-More. At a bargain rate of $3.55 (.9) I'd go just for the
exotic names.

It's as well kh that I know you're the most loved and wished for guy
on this NG, so I'll very reluctantly have to forgive you on this one
occasion.

Otherwise, my very kindest wishes - and I hope it really was "great
tonight".

Your devoted chronicler and sometimes pilferer.

MikeHi

kh wrote:

Snip, snip, and ... snip

Bottom line:
> -kh Doing better all around.

THAT pony makes the digging worthwhile.

I.P.

On Apr 23, 1:24 pm, Mik...@anon.co.uk wrote:

> I hesitate to give you some good news kh, but petrol here in Uk is now
> the equivalent of $10 a gallon - so we rely more than ever on your
> menus as we can't afford to drive to Fred's caff up the road, let
> alone your magnificent sounding Kaufman's Tavern, half an hour south
> of Ball-More. At a bargain rate of $3.55 (.9) I'd go just for the
> exotic names.

Here's the menu <http://www.kaufmannsrestaurant.com/menu.html>

I had the 14 ounce T-Bone steak but on Tuesday, it's on special
$19.95.

It's about halfway between Ball-More (as locals say Baltimore) and
Northern Virginia, it's a good place to grab an early meal on the way
back from JHU.

Decent food at a fair price. I didn't write more about food because my
lunch was at the hospital's dining hall. It was OK.

I'm at 36 hours post taxotere infusion now and so far, so good. I'm a
little jittery but that could be the steroids. I was tired this
afternoon but again, it might be the steroids. According to JHU, the
side effects frequently worsen as the treatment progresses. I'm just
starting this. We'll know more as the months pass.

Guys, I've had a tumor in my chest try to choke off my vena cava and
windpipe. The Lupron then Lupron w/ Casodex, hammered the PCa down.
It went hormone refractory and tried for my spine. Inova gave the
PCa 14 blasts from their Trilogy. It's going to take a lot of side
effects to make me give in to this S.O.B.

The other thing that's occurred to me is that we're men. I got this
from reading about I.P.'s gym and sports reports. What are a few hot
flashes, muscle aches, fatigue, whatever, compared to what we do for
fun?

I'm walking around and working. In fact, I was showing the
phlebotomists how I could Moon Walk. You get a little funny on 24 mg
of decadron, chased with Oxycodone. Moon walk? More than a little
funny.

-kh what next? Break dancing?

I'm jumping the gun on this report, it is not quite 7 days since the
chemo infusion.

I'm on pregnisone 5mg 2X day, this is a milder steriod than the
decadron. This is supposed to fight the side effects of the
taxotere. It has its own side effects and I still feel the bone mets,
the radiation, so I'm a blur of aches and pains and stomach upset.

Welcome to old age!!!

I'm working full days, my head is clear, and I have enough stamina to
walk a mile, climb a couple flights of stairs, and generally look and
feel normal.

I tire easily. A brisk walk followed by a couple flights of stairs
leaves me exhausted for a few minutes. I'm back to 9 or 10 hours of
sleep a day.

My weight is down. I'm seeing 174 lbs down from 197 a few years
ago.

Emotionally? -shrug-, life and business are progressing just fine.
Better than OK. I got a payment from an old client; this was for some
work I did last year. I might add an assortment of decent wines to my
wine cellar. I know almost nothing about wine but occasionally have
guests who enjoy finer beverages; it's always been a mild
embarrassment that I don't stock anything interesting for them.

I'm more the Gallo Hardy Burgundy, Two Buck Chuck type. Ya know,
splash cheap wine onto the grilling meat, take a sip, splash, sip,
when you feel good, the meat is ready.

I'm on the every 3 week taxotere infusion. This is a heavier dose
than the every week treatment. At one week, I'm able to walk, cook,
work, think about buying treats like wine; this suggests that I'm
tolerating the chemo. So far, that is.

The other metric is how my blood chemistries are responding. They do
a draw every week but I don't expect problems there for months.

My red count is low normal, as expected from the radiation. It was
plenty good enough to get into the trial.

As the chemo exerts itself, as the radiation fades, I'll let you know
how it goes. The bottom line is that this is the best I've felt in
months.

-kh

I'm a lab rat for a Taxotere boosted by an IL-6 antigen trial. I'm
late with the 2 week report but it's been a week.

The radiation 2 months ago still hasn't quite faded so I'm a mess of
mild symptoms, side effects, and I'm looking for signs of the PCa.

This week, week 2, my critical white blood count, the ANC, fell to
330, This is below acceptable for the trial. They want it to be 1000
or higher. They'll pull blood on Monday, the 12th and make a go/no go
decision.

My counts are low because the radiation to my spine also hit my hip
bones. These are major repositories of bone marrow and produce much
of the blood cells.

As the radiation fades, they expect my counts to bounce up.

While I feel fine, they cautioned me to avoid crowds, handwash, and
gave me 7 days of CIPRO, 2X a day. If that affects my GI tract, how
would I know? My stomach has not recovered from the radiation 100%.

I'm taking Pregnisone 5mg, 2X a day. A milder steriod than Decadron,
it still leaves me a little jittery which I've used to really get the
work out. It can cause sleep disorders, which have not been a
problem this week. JHU says that Pregnisone is part of the treatment
and has been shown to reduce PSA when used this way.

I'd call the side effects a wash, I am noticeably stronger this week,
head clearer, and on a performance rush.

Big change this week, the Taxotere made my hair get real thin. All of
a sudden, clumps fell out.

I got a short, marine-style hair cut and my quantity of hair looks
about the same. If more hair falls out, I'll have it cut even
shorter.

Gals have remarked, "sexy!" and "looking tough". If only my T wasn't
<20.....

Hopefully, I'll be able to get the next infusion. I'll let you guys
know how that goes.

-kh

"kh" <tchtic@yahoo.com> wrote in message
news:042d86f5-4738-4406-9c21-51aeaf60f256@b1g2000hsg.googlegroups.com...


> Big change this week, the Taxotere made my hair get real thin. All of
> a sudden, clumps fell out.
>
> I got a short, marine-style hair cut and my quantity of hair looks
> about the same. If more hair falls out, I'll have it cut even
> shorter.

I got that covered. I started cutting mine really short after I was
diagnosed.

--
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
Non Illegitimi Carborundum

On 2008-05-10 16:32:55 -0500, kh <tchtic@yahoo.com> said:

>
> I'm a lab rat for a Taxotere boosted by an IL-6 antigen trial. I'm
> late with the 2 week report but it's been a week.
>
KH, again, it is great getting your blow by blow battle updates.
Thanks. The more input I see from guys like you, the easier it seems
to be to fight my own battles and come to terms with all of it. I hope
your educational ramblings continue for a long long time. And that we
are all here to read them!!!

I have not cut my hair short yet, like Steve, and I am just happy to
have someplace where it still grows!!! The combo of Lupron and
Casodex sure take their toll on body hair!!! If one of the next
battle plans in my future results in the head hair going too, I wonder
if the beard will fall out too?? The last time I shaved my beard off I
came very close to being dog bit by my own dog when I came out of the
bathroom clean shaven. If I had not been able to speak up quickly, it
would not have been pretty.

Thanks again. Keep a fighting, the battle lines have been drawn and
we can still win some battles here and there, no winner has been
announced yet. If we can win enough battles, maybe we can hang around
long enough to win the war too.

"Bob C" <bob@bob.org> wrote in message
news:2008051310352816807-bob@boborg...
> On 2008-05-10 16:32:55 -0500, kh <tchtic@yahoo.com> said:

> I have not cut my hair short yet, like Steve, and I am just happy to have
> someplace where it still grows!!! The combo of Lupron and Casodex sure
> take their toll on body hair!!! If one of the next battle plans in my
> future results in the head hair going too, I wonder if the beard will fall
> out too??

My biggest fear! I have had a mustache, except for one week, since I was
17½ years old. I'd really hate to lose it.

But, alas, the hair has fallen from my chest, arms, pits, and legs and I
suspect I'll lose it from my head, brows, and crotch before it's all over.

On May 13, 11:35 am, Bob C <b...@bob.org> wrote:

> I hope
> your educational ramblings continue for a long long time. And that we
> are all here to read them!!!

I expect everyone will be here for a long time.

Today... I walked in to JHU cranked on decadron. They want you to
take 24 mg before the Taxotere infusion. 24 mg is a big bang, it's a
RAVE bang. I believe the theory is that the decadron protects you
from the side effects of the infusion, which can include anaphylactic
shock. The infusion techs ask about itchiness, respiratory changes.

I also snuck in 2.5 mg of oxycodone, just to buffer the pain. So
yeah, I was ready for a RAVE.

I had some coffee and a peanut butter sandwich (my budget is still
tight) and headed over to JHU.

My 330 ANC blood count had risen to over 4,000. I was cleared for
the taxotere and IL-6 Antigen. The study nurse explained that one
reason that the infusions are on a 3 week cycle is that most guy's ANC
bounces back in the 3rd week. They know that from past trials (where
brave men took it on 1 week, 2 week, 3 week, 4 week cycle to determine
the "right" spacing for those of us who come follow.)

Thank those lab rats.

They did the heavy lifting for us. I have it easy.

Let me tell you about today's ordeal. They pulled blood at 7:45 and
I went up to the Infusion center to wait around for my meds. I got in
about 10:00. Then it was 3 hours on an infusion bed. I had cable TV
with CNN and 4 movie channels.

They brought around drinks, cookies, other snacks. I had a banana, a
fruit bar, and graham crackers. They took orders for lunch, $7.50
for a roast beef sub, crisps, and a Coke.

I finished watching Spiderman 3, the last of my roast beef, and it was
time for the last blood pull. The infusion was done.

I then had 4 hours to kill until the last infusion. I went down to my
car, changed the wiper blades, air filter, and checked the oil. The
level is OK but I'll get it changed this Friday, also the fuel pump.

I stood around outside for while, tried to get some sun on my head
which has pale skin on the side where the hair was thick and fell
out. The top, which always had thin hair, is tan. I want a more
even look.

I brought a book with me, the author is dealing with his Mom's
cancer. He said that the prednisone helps keep appetites up so there
is less of the chemo-walking skeleton look. He also said, get out and
walk as much as possible.

I had my laptop with me so I wrote this report, no WiFi I can get to
there so I'm uploading the text from home.

So far, this has been easy, minimal "new" side effects.

The good news, my PSA had risen to 18 a month ago; one infusion of the
taxotere drove it down to 11. Let's see that taxotere and the IL-6
antigen can do.

Oh, and I found out I have an invite to go crabbing on that Restaurant
owner's boat.

Really get my tan evened out.

-kh "Take that!"

On Tue, 13 May 2008 17:03:53 -0700 (PDT), kh <tchtic@yahoo.com> wrote:


>Today... I walked in to JHU cranked on decadron. They want you to
>take 24 mg before the Taxotere infusion. 24 mg is a big bang, it's a
>RAVE bang. ......
>
>......I also snuck in 2.5 mg of oxycodone, just to buffer the pain. So
>yeah, I was ready for a RAVE.
>
>I had some coffee and a peanut butter sandwich (my budget is still
>tight) and headed over to JHU.........
>...Let me tell you about today's ordeal. They pulled blood at 7:45 and
>I went up to the Infusion center to wait around for my meds. I got in
>about 10:00. Then it was 3 hours on an infusion bed.

Hi kh

According to Mayo and Webmd definitions my lymph node involvement
means that I'm now T4. I've had three easy years with HIFU painlessly
(mostly) and S/E's negligibly knocking out the primary sources but
soon have to decide on the tough stuff for metastases.

So tell me kh. What can I take that you took, that will end me up with
treatment as follows:

> I had cable TV with CNN and 4 movie channels.
>
>They brought around drinks, cookies, other snacks. I had a banana, a
>fruit bar, and graham crackers. They took orders for lunch, $7.50
>for a roast beef sub, crisps, and a Coke.

Blimey that's only about three quid English and I believe USA doesn't
serve beef unless it covers the plate...anyway...going on....
>
>I finished watching Spiderman 3, the last of my roast beef, and it was
>time for the last blood pull. The infusion was done.

You were so souped up by the menu -not to speak of earlier coffee and
a succulent peanut butter sandwich - (Thanks. I'd forgotten about
those. Used to love 'em)
>
>I then had 4 hours to kill until the last infusion.

And feeling absolutely great ... so....

>I went down to my car, changed the wiper blades, air filter, and checked the oil. The
>level is OK but I'll get it changed this Friday, also the fuel pump.


>I stood around outside for while, tried to get some sun on my head
>which has pale skin on the side where the hair was thick and fell
>out. The top, which always had thin hair, is tan. I want a more
>even look.

H'm kh, the anti-testosterone stuff doesn't seem to have workd on
you....(good luck with the even tan)
.......You were then bored with nothing to do, but....
>
>I had my laptop with me so I wrote this report, no WiFi I can get to
>there so I'm uploading the text from home.
>
>So far, this has been easy, minimal "new" side effects.
>
>The good news, my PSA had risen to 18 a month ago; one infusion of the
>taxotere drove it down to 11. Let's see that taxotere and the IL-6
>antigen can do.

It will,absolutely no doubt, with the kh electric energies and menus
pushing it hard..
>
>Oh, and I found out I have an invite to go crabbing on that Restaurant
>owner's boat.
>
>Really get my tan evened out.

-YES! I want that as part of my treatment too! What do i have to do??
(Advice might be urgently needed, so don't lie down on the job now
I've just learned of a rather cataclysmic leap in my PSA which might
calll for crash measures - which I won't accept without your menus,
yacht cruises and suntans...)
>
>-kh "Take that!"

I will kh, I will!

Kindest regards and keep kicking the bastard hard, especially when
it's down, I don't reckon it's got a chance!

MikeHi

On May 13, 8:03 pm, kh <tch...@yahoo.com> wrote:
>
> So far, this has been easy, minimal "new" side effects.
>
> The good news, my PSA had risen to 18 a month ago; one infusion of the
> taxotere drove it down to 11. Let's see that taxotere and the IL-6
> antigen can do.
>

>
> Really get my tan evened out.
>
> -kh "Take that!"

Great news kh
- taxotere is doing it's job - and with minimal side effects -
Wishing you to breeze through to zero PSA.

Lud

On May 13, 6:59 pm, "Steve Kramer"
>
> My biggest fear! I have had a mustache, except for one week, since I was
> 17½ years old. I'd really hate to lose it.
>
> But, alas, the hair has fallen from my chest, arms, pits, and legs and I
> suspect I'll lose it from my head, brows, and crotch before it's all over.

Steve, I have the same problem except for mustache and head - I am on
Avodart and the seems to be the key to keeping hair on the top (I
tried stopping and started losing hair). Taxotere took all my hair
off, - after stopping, hair grew back even denser especially on top.

My major problem is crotch hair - ringworm then ADT and radiation took
it all away - chafes like hell - have to use baby powder every
morning.

Are you on Avodart?
Lud

Are you on Avodart?


Nope. Just Casodex and Lupron right now. I'm fretting over possibilities a
year or two down the road (I hope).

On May 14, 4:24 pm, Lud <Ludwi...@gmail.com> wrote:

> - taxotere is doing it's job - and with minimal side effects -
> Wishing you to breeze through to zero PSA.

Thanks.

The radiation's side effects are fading into the past. My back is
much better and except for one 2.5 dose of oxycodone, I've been off
pain-killers for 5 days.

Three months ago, I was hitting the percocet hard and could barely get
out of bed. Now I can walk briskly, bend over, each week, I've
gotten stronger.

No way to tell how long I can stay on Taxotere plus the IL-6 antigen.
Supposedly the side effects will intensify.

So far, I noticed an itchy throat once; it cleared up in a few
minutes. At night, my legs feel jittery. Don't know if that's the
Taxotere or the Prednisone. Either way, I simply notice it and go
back to sleep.

I have a little heartburn, Taxotere might be the cause but I had
serious heartburn from the radiation. I'm eating ice cream because,
it feels cool going down. The Zantac-150 seems to handle whatever the
cause.

I'm hanging in there. Did some good work today. If anyone here goes
to JHU for cancer treatment and has "study" blood drawn, I took in
some tools and fixed their four blood-draw chairs.

-kh Patient and roving handi-man.

On May 14, 9:34 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:
> Are you on Avodart?
>
> Nope. Just Casodex and Lupron right now. I'm fretting over possibilities a
> year or two down the road (I hope).

What fretting? HRPC gets more difficult.
Lud

On May 15, 12:04 am, kh <tch...@yahoo.com> wrote:
> On May 14, 4:24 pm, Lud <Ludwi...@gmail.com> wrote:
>
> > - taxotere is doing it's job - and with minimal side effects -
> > Wishing you to breeze through to zero PSA.
>
> Thanks.
>
> The radiation's side effects are fading into the past. My back is
> much better and except for one 2.5 dose of oxycodone, I've been off
> pain-killers for 5 days.
>
> Three months ago, I was hitting the percocet hard and could barely get
> out of bed. Now I can walk briskly, bend over, each week, I've
> gotten stronger.
>
> No way to tell how long I can stay on Taxotere plus the IL-6 antigen.
> Supposedly the side effects will intensify.
>
> So far, I noticed an itchy throat once; it cleared up in a few
> minutes. At night, my legs feel jittery. Don't know if that's the
> Taxotere or the Prednisone. Either way, I simply notice it and go
> back to sleep.
>
> I have a little heartburn, Taxotere might be the cause but I had
> serious heartburn from the radiation. I'm eating ice cream because,
> it feels cool going down. The Zantac-150 seems to handle whatever the
> cause.
>
> I'm hanging in there. Did some good work today. If anyone here goes
> to JHU for cancer treatment and has "study" blood drawn, I took in
> some tools and fixed their four blood-draw chairs.
>
> -kh Patient and roving handi-man.

Sounds like you are doing amazing - I could go more than 3 cycles with
only taxotere.

Prednisone can cause jitteries, insomnia and fluid retention - notice
swelling in the ankles at the end of the day. Sour stomach seems a
common occurrence with all the drugs - next step up is Prevacid and
Nexium - also need to keep up vitamin D and calcium intake. Pill
schedules are a pain in the butt.

What else is there to complain about!
Lud

At 5 weeks, ANC dropped to 100. From memory it's been:

wk - ANC - comments

0 - ??? - Infusion taxotere, PSA 18
1 - 900 -
2 - 330 - hair falling out, got a buzz cut.
3 - 4000 - Infusion taxotere and CNTO (328), PSA 11
4 - 600 - tired all the time, sour stomach.
5 - 100 - tiredness fading - can stroll for an hour, back on Cipro

I'm hoping the ANC will jump back up by next week. It takes 1,000 or
better to get an infusion.

I feel really, really "up", almost pumped. That might be the
prednisone talking.

My appetite is coming back but JHU has directed no salads, no fresh
fruits, or raw vegetables with that low an ANC. Hospital style
handwashing, alcohol sanitizers.

I can't hit the fresh fruit but I can chug the green tea, blueberry,
pomegranate cocktail. I've added orange juice to it. Bring it to a
rolling boil, cool, enjoy.

My back feels a lot better but there's still something going on. Now
2 1/2 months post radiation.

The JHU doc said I'm getting close to being able to "exercise". He
wanted me to cool it until my bones strengthened post bone-mets, post-
radiation. He says, he'll tell me when. Soon, but not yet.

-kh

"kh" <tchtic@yahoo.com> wrote in message
news:7b9585a7-c2e3-4736-bfa2-a0a529065da6@f63g2000hsf.googlegroups.com...
>
> At 5 weeks, ANC dropped to 100. From memory it's been:
>
> wk - ANC - comments

New term.... What's ANC?

"Steve Kramer" <skramer@cinci.rr.com> wrote in message
news:483d532f$0$4099$4c368faf@roadrunner.com...
> "kh" <tchtic@yahoo.com> wrote in message
> news:7b9585a7-c2e3-4736-bfa2-a0a529065da6@f63g2000hsf.googlegroups.com...
>>
>> At 5 weeks, ANC dropped to 100. From memory it's been:
>>
>> wk - ANC - comments
>
> New term.... What's ANC?

Disregard. Wikipedia explained to me about ANC, PMNs, and WBCs.

On May 28, 7:58 am, kh <tch...@yahoo.com> wrote:
> At 5 weeks, ANC dropped to 100. From memory it's been:
>
> wk - ANC - comments
>
> 0 - ??? - Infusion taxotere, PSA 18
> 1 - 900 -
> 2 - 330 - hair falling out, got a buzz cut.
> 3 - 4000 - Infusion taxotere and CNTO (328), PSA 11
> 4 - 600 - tired all the time, sour stomach.
> 5 - 100 - tiredness fading - can stroll for an hour, back on Cipro
>
> I'm hoping the ANC will jump back up by next week. It takes 1,000 or
> better to get an infusion.
>
> I feel really, really "up", almost pumped. That might be the
> prednisone talking.
>
> My appetite is coming back but JHU has directed no salads, no fresh
> fruits, or raw vegetables with that low an ANC. Hospital style
> handwashing, alcohol sanitizers.
>
> I can't hit the fresh fruit but I can chug the green tea, blueberry,
> pomegranate cocktail. I've added orange juice to it. Bring it to a
> rolling boil, cool, enjoy.
>
> My back feels a lot better but there's still something going on. Now
> 2 1/2 months post radiation.
>
> The JHU doc said I'm getting close to being able to "exercise". He
> wanted me to cool it until my bones strengthened post bone-mets, post-
> radiation. He says, he'll tell me when. Soon, but not yet.
>
> -kh

Kh

From my experiences -

white blood cells really drop at 7 to 10 days post infusion and should
bounce back up after another 7 to 10 days. Mine were so bad after the
first infusion I was hospitalized for 6 days on ABX- IV. For the next
cycle, I asked for Neulasta which kept my white cells up - expensive
but a lot better than staying in hospital.

Next to go down were the hemoglobin - so on the 3rd cycle, they added
Aranesp to get the red blood cells up.

Diet that helped me was getting high protein and keeping carbs low
(mostly vegetable).

Hope this helps.
Lud

>On May 28, 7:58 am, kh <tch...@yahoo.com> wrote:
>> At 5 weeks, ANC dropped to 100. From memory it's been:
>>
>> wk - ANC - comments
>>
>> 0 - ??? - Infusion taxotere, PSA 18
>> 1 - 900 -
>> 2 - 330 - hair falling out, got a buzz cut.
>> 3 - 4000 - Infusion taxotere and CNTO (328), PSA 11
>> 4 - 600 - tired all the time, sour stomach.
>> 5 - 100 - tiredness fading - can stroll for an hour, back on Cipro
>>
>> I'm hoping the ANC will jump back up by next week. It takes 1,000 or
>> better to get an infusion.
>>
>> I feel really, really "up", almost pumped. That might be the
>> prednisone talking.?
/Big snip
>>

Hi kh
No, it's you talking. Always "up", always pumped - whatever they pump
into you. I saw my consultant yesterday who said at this stage ít's
about attitude as much as anything else. I thought of you, and know
he's right.

My very best wishes
MikeHi
"Exponential lightspeed". Def: The discovery of the cure for Pca at a
speed which defies Einstein.

On May 29, 12:09 pm, Lud <Ludwi...@gmail.com> wrote:

> From my experiences -
>
> white blood cells really drop at 7 to 10 days post infusion and should
> bounce back up after another 7 to 10 days.
....
> Hope this helps.

Absolutely!

I did a 4 point graph using the data that I have (I wish I had more
data points). The graph shows that my ANC nadirs on the 12th day.

It does suggest that the protocol is wrong. They pull blood on the
0th, 7th, 14th, and 21st, notice that on the 14th, that my ANC is low
and tell me, "start taking the Cipro". By the 14th, I think my ANC
is trending back up.

If so, I should start the Cipro on the 10th or 11th day after
infusion, this is from my 4 point graph. Keep taking it until about
the 14th or 15th. By then, the graph "suggests" that my ANC is
trending up past 1,000.

Of course, I could be completely wrong.

-kh

I go for the pre-treatment bloodwork today. If my ANC is high
enough, tomorrow (Tuesday) will be the 3rd infusion of Taxotere,
counting the "run in". It'll be the second "trial dose", which is
Taxotere and the CNTO(328) trial dose.

So far, so good. My weight is holding between 175 and 180. Some
days I'm eating everything in sight, some days I don't feel like
eating much.

The grocery store had pork chops on sale, $1.79/pound. I fried them
in garlic butter. Had them with a side of fresh asparagus and
dill.

Side effects to date? I slap side effects with the back of my
hand.

Don't misunderstand, I've felt them all but so far, these have been
tolerable.

Hair loss - It's been falling out. I cut my hair really short and
look like fashionable, 10 years younger almost military. My balls
and armpits are getting smoo-ooth but you probably didn't need to hear
that before breakfast.

Nervous legs - A known side effect. I take the twice daily steroid
early so by 10 PM, the worst of it is over. If it happens during the
day, I just walk around for a while.

Stomach issues - I'm 3 months post Radiation for spine and hip mets.
The gastro-intestinal colon churning and blasting is not as bad as it
was 3 months ago. Even then, it was about like the day after a beer
and chili festival combined with some stomach flu. Tolerable then.
Not too bad now. I'm still taking the Zantac-150.

Fingernail issues - One thumbnail is very slightly dark at the quick.
Some guys have their nails turn black, some lose them.

Tear-duct issues - Another known side effect. Maybe. No complaints.

You know about my ANC dropping to 330 and 100.

Various sleep issues, feeling tired, head fog, muscle weakness.
Those just say, push back harder. I think about I.P. and his
athletics. Push back. Take a machete out to the yard and have at
some weeds. Push back.

-kh

"kh" <tchtic@yahoo.com> wrote in message
news:b89172ac-3d79-46a8-b6cb-c019da184910@k13g2000hse.googlegroups.com...

> Taxotere and the CNTO(328) trial dose.
>
> So far, so good. My weight is holding between 175 and 180. Some
> days I'm eating everything in sight, some days I don't feel like
> eating much.

> Hair loss - It's been falling out.
>
> Nervous legs - A known side effect. I take the twice daily steroid
> early so by 10 PM, the worst of it is over.

> The gastro-intestinal colon churning and blasting is not as bad as it
> was 3 months ago.

> Fingernail issues - One thumbnail is very slightly dark at the quick.
>
> Tear-duct issues - Another known side effect. Maybe. No complaints.
>
> You know about my ANC dropping to 330 and 100.
>
> Various sleep issues, feeling tired, head fog, muscle weakness.
> Those just say, push back harder.

Only on a forum like this would you see this response....

This is GREAT reading!!! I cannot tell you how much I appreciate your prose
and preparation for what I can, no doubt, expect in the next coupld of
years.

Thanks!!

--
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
Non Illegitimi Carborundum

On Jun 2, 3:16 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:

Update, Just got the email from JHU. It's about what my spreadsheet
projections showed. I'll take the graph in, might be something that
they can use with other patients.


>>> 06/02/08 5:43 PM >>>

I got the blood pulled at 3:30. Let me know if my ANC is adequate. I
expect it is.

See you Tues AM.


>>> 06/02/08 9:00 PM >>>

I don't know how it is possible, but yes, it is more than adequate. It
was over 2000.

On Jun 2, 10:58 pm, nancyhoyt.k...@gmail.com wrote:
> On Jun 2, 3:16 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:
>
> Update, Just got the email from JHU. It's about what my spreadsheet
> projections showed. I'll take the graph in, might be something that
> they can use with other patients.
>
> >>> 06/02/08 5:43 PM >>>
>
> I got the blood pulled at 3:30. Let me know if my ANC is adequate. I
> expect it is.
>
> See you Tues AM.
>
> >>> 06/02/08 9:00 PM >>>
>
> I don't know how it is possible, but yes, it is more than adequate. It
> was over 2000.

it's me, KH w/ a borrowed account.

Back on my account. I'm at Johns Hopkins out patient cancer center.
I have my laptop with me. I thought I'd take some notes and enjoy my
"vacation day".

When I fired my laptop up, it said, "Connecting to JHGuestnet", whoo-
hoo, here I am, IV's in my arms and surfing the web. The signal is
not very strong but it's running fast and I've already sent email to
my boss and some co-workers.

I haven't gotten the 3 week PSA yet but my "over 2000" ANC came in at
2400. I could mud wrestle in a hog pen and fight off infections with
an ANC like that.

That's a whole lot better than the 100 a week ago.

I'm also juiced heavy on the Decadron, that's on top of the
Prednisone. My BP and pulse are up slightly but not dangerously so.

My stomach and back feel almost normal but that might be the steroids
talking.

Here's the summary. This is my 3rd infusion of Taxotere and the 2nd
which included the trial drug, CNTO (328) which has something to do
with mice.

The Taxotere alone dropped my PSA. I've had many side effects but so
far these have been tolerable. The docs say that some side effects,
the fatigue, will get worse. I hope not.

I don't have much in the way of physical reserves. I'm sleeping 10
hours a day and tired most afternoons.

However, this is a lot better than I was doing 18 months ago when the
prostate cancer tumor near my lungs was choking the life out of me.

I am not going back to that. Even though I have little stamina, I
push myself to walk a little further each day. I also do the best I
can to stand up straight and walk briskly, push past the pain and move
ahead.

I refuse to be old, sick, and weak.

I refuse to be broke too. That's why I'm still working, learning,
doing what I can to advance my career and business.

When people notice my hair, I tell them that it's my summer cut or if
I'm in a joking mood, I tell them I'm joining the skin-heads. They
always laugh

I had 5 hours sleep last night, decadron will do that. I expect I'll
get a little more fitful sleep tonight, maybe dream about blonds
having their way with me, then blaze through a full day of work
tomorrow, crash Wednesday night.

-kh

You ready?

5.6

Just before the Taxotere - 18
3 weeks pass, just before the Taxotere and CNTO(328) - 11
Another 3 weeks, just before the 2nd Taxotere and CNTO(328) - 5.6

Recall that I have an "aggressive" PCa. Sometimes, these"respond
well" to chemo.


posted to a.s.c.p while waiting for the final blood draw.

-kh

FANTASTIC!!

You are truly an inspiration to all, due to the amazing way you are
handling all of this. Keep on truckin', "kh".....and I will keep saying
a few words for you!!

XX Heather