Cytoxan Chemo - Week 0 (kh)
kh
cycloPHOSPHAMIDE - generic for Cytoxan 100 mg. Cytoxan can be given as
an Oral or IV chemo. I'm taking 100 mg daily as a pill. That sure
beats taking a day off to drive up to the infusion center and having
needles and tubes stuck in me.
The Wizard of Johns Hopkins is treating me with a combination of
Cytoxan and Decamethasone, generic for Decadron .75 mg. That's point
seven five mg.
Low dose Cytoxan and Decadron, daily against my 30 day doubling time
on Lupron. I have mets in the spine and shoulder blades.
I've been slumping, my back aches, I have no strength or stamina,
almost felt like giving up last week.
I took my first Cytoxan this morning and I'm already much better.
It's more than psychological, I prepped for it last night with 5 mg of
Oxycodone for the back pain, which is not as bad as a year ago but had
me walking bent over. I also took a Decadron. Even .75 mg made a
huge difference.
Guys, no whitewashing this, I am sick and have run out of the easy
options but it ain't time for hospice. My last PSA was 45.1 and my
projections put it at 60+ today. I've lost almost 40 pounds and have
the cancer patient, walking skeleton look.
The Wizard says that the Cytoxan "should" slam the PCa. Good. Hammer
it. I ain't ready to go.
Some of this is the drugs talking. Some of it is having hope. Some
is relief from the pain.
I've started back on my hobbies. I've been working on my finances.
I'm doing extra work on my job. I'm pee'ing better and the diarrhea
is almost gone.
I had my rathat on yesterday at the Johns Hopkins Comprehensive Cancer
Center. I got some smiles and laughs. Sometimes I play it
seriously, most times I goof around, make squeeking noises, do a rat
dance, gotta keep them entertained.
I searched the newsgroup for Cytoxan and only found one reference, it
was the 2007 thread about going to Germany for an alternative
treatment combined with conventional chemo.
I am doing the natural stuff. I drink green tea, add pomegranate and
blueberry juice. Broccoli, soy, peppers, not exactly hard duty. Tofu-
broccoli Schezuan style? I love that stuff.
I will let you know how I do, good or bad, PSA, side effects, tumor
response. JHU has a baseline CAT-scan and bone scan, so I have a good
baseline.
My goal for the next month is to get my weight over 170. I'm doing
arm curls with my girllie weights.
-kh still squeeking.
Steve Kramer
news:f63397c3-9cb6-479f...@g19g2000vbi.googlegroups.com...
: Started a new treatment 5/26/2009, so I'm starting a new thread.
:
: cycloPHOSPHAMIDE - generic for Cytoxan 100 mg. Cytoxan can be given as
: an Oral or IV chemo. I'm taking 100 mg daily as a pill. That sure
: beats taking a day off to drive up to the infusion center and having
: needles and tubes stuck in me.
Glad your wizard had another trick in his bag.
: Sometimes I play it
: seriously, most times I goof around, make squeeking noises, do a rat
: dance, gotta keep them entertained.
Never saw a rat dance. I suspect you'd have to juice a rat up with some
sort of speed to even see it dance. Better check to see what's in those new
meds. ;-)
--
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 undetectable since, < 0.04 on 10/09/08
Illegitimati non carborundum
fran...@gmail.com
Ironically, I was thinking of listing a post called "What exactly is
"fighting back?"
It's used all the time here but our enemy is invisible, so how do we
fight it?
Thanks, kh, I've got my answer.
You're an inspiration.
I.P. Freely
> kh wrote:
>> I've been slumping, my back aches, I have no strength or stamina,
>> almost felt like giving up last week.
>> I am doing the natural stuff. I drink green tea, add pomegranate and
>> blueberry juice. �Broccoli, soy, peppers, not exactly hard duty. �Tofu-
>> broccoli Schezuan style? �I love that stuff.
> kh ... You're an inspiration.
I'll second that, plus ... I'd add all the pizza and ice cream and ribs
I could eat. It ain't gonna hurt you at this point if your digestive
tract can handle it.
I.P.
Alan Meyer
news:f63397c3-9cb6-479f...@g19g2000vbi.googlegroups.com...
> ... still squeeking.
kh,
I find your postings to be among the most inspiring I have ever
read on this newsgroup. If and when I face the kinds of
challenges that you are facing, I will be proud of myself if I
can face them with even half of the courage, grace and humanity
that you have shown.
Squeak on kh. We're all standing up out of our chairs, rooting
and cheering for you.
Alan
tarhoosier7
Squeak on, brother. And know you have a rousing cheering section here.
GIMME a K! ...K! Gimme an H! ...H!
kh
This is your 1 week update - so far so good.
The back pain was climbing fast, I had resorted to my cache of pain
meds. The wizard put me on "up to 2 Oxycodone 5 mg, up to 3 times a
day". I'm taking 1 in the morning and 1 at night. The pain is
gone. I have some discomfort and a mild back ache but I can walk,
work, sleep.
I can't detect any side effects from the Cytoxan (oral chemo). The
0.75 mg of Decadron 3X day might be giving me some energy but I can't
detect it either, other than some talky episodes where I'm blathering
about, "dagnabbit Government Motors", "ding dong giveaways", and
"layabouts on the dole." No wait, at age 62, that's normal.
My stomach is much better, I ate an 8 ounce filet mignon for Sunday
dinner with a baked potato and a green salad. I sliced the meat
carefully and ate it slow, enjoying every bite. A month ago, I would
have not been able to finish the steak. I had some ice cream for
dessert, not a lot, a couple ounces. I'll spare you the emissive
details but the rat droppings look normal for the first time in a
year.
Going into the weekend, my weight was 157, I am cancer patient
gaunt. My job is to get my weight up and build muscle. I saw 160 on
the scale yesterday. My goal is 170, if I have to eat steak, fried
chicken, chocolate cake, well, I guess I'll have to make that
sacrifice. I had tofu with black mushrooms over noodles, fried
cabbage and bean sprouts yesterday.
The other side effects of the Tax have just about faded. The ripples
on my fingernails have grown out. The darkening of my toe-claws are
only on the tips. My head fur has gown back, it's softer but looks
about like it left. I barely have to shave; I could almost name the
whiskers there are so few. I have loose, wrinkled skin but that's
because I lost 40 pounds last year.
I did more playing with my hobby and have started tidying up my life.
I worked on my computers, tossed out some trash, clocked a full,
productive 10 hour work day. I don't know if it is the Cytoxan
slamming the cancer, the Decadron juicing me, or the Oxycodone
blanking the pain but I am on the upswing.
That's compared to recent months where I could barely move and was
almost ready to give up.
If I just sit still, I feel normal. No pain, no discomfort, the hot
flashes are rare.
Today, my sense is, come-on, you took your shot, now it's my turn.
Every day, I read a little about experimental treatments. I'm looking
for new arrows. This labrat will come out of his lair, snarling and
biting, my claws are sharp and my fur has grown back in thick. So
thick, I have to go to the barber... for a grooming.
-kh labrat on the loose, sniffing for the cheese.
rosbif
Prized for its pungent odour, here's a cheese that would probably
sniff you out first.
Anyway, good!! An upbeat post from you and a sigh of relief here.
So your gastronomy has been relieved of all constraint? Nice!!!. It
reminds me, when I was a kid, we were told that after you'd had your
tonsils out, you were only allowed to eat ice-cream and lemonade. It
might have been propaganda, I just don't know because I never had mine
removed, but I was sorely tempted.
best to you, kh
Lud
Dear labrat - you are flying higher and dancing - WOW - much more
than I can even with a PSA of 5.
So good to hear that you do have a Wizard that is trying different
combinations as no one knows what potion will work for an individual.
I had to really push hard to get Keto - it gave 2 good years and
continuing, even better than Taxotere.
Keep flying high dear labrat. Thanks for the informative descriptions
of your treatments - I'm filing them for my future battles.
Lud
Steve Kramer
news:fcd24482-4cff-44dc...@z19g2000vbz.googlegroups.com...
Dear labrat - you are flying higher and dancing - WOW - much more
than I can even with a PSA of 5.
==> Ouch! Did I read this right, Lud? Did you go from a 3.0 to a 5.0 in a
month?
Lud
> "Lud" <Ludwi...@gmail.com> wrote in message
That is over about 2 months - without any treatment - I am now on IDK
so we'll see next month. Doubling time is usually 3 months - damn
delinquent cells just don't give up.
Steve Kramer
That is over about 2 months - without any treatment - I am now on IDK
so we'll see next month. Doubling time is usually 3 months - damn
delinquent cells just don't give up.
==> Well, considering your Dx 5 years ago, you have sure given them a run
for the money. You'd think they would be plumb wore out!
kh
This is your 2 week update, albeit a couple days early - so far so
good.
Starting with the downside - I can't make the Vulcan Love Sign with my
left paw. I can make the American I-want-make-love-to-you sign just
fine. The Tax damaged the nerves to little and ring finger. This is
"peripheral neuropathy" and seems slightly worse. Maybe the low dose
oral Cytoxan is to blame. I can type but fumble a little with the
Caps Lock and "A" key.
I am still coughing and wheezing, hacking up sticky mucus but the 0.75
mg Decadron 3X day may be helping. I ran out of Proventil and got
that refilled. I can walk a block or two, climb 2 flights of stairs
but 4 flights leave me in extreme respiratory distress. I saw a pulmo-
doc and am back on the Lasik. She saw fluid around my lungs, again.
I'm mildly irritable all the time but who isn't, given the economy.
Here's what's improved.
My back is much better, that's the Oxycodone 5 mg and the Decadron. I
have more energy. I'm working 10+ hour days. I got a haircut,
probably should get it shorter but it's a nice buzz-cut. I look
almost human again.
The Wizard put me on Prevacid instead of Zantax-150, it settled my
stomach, eliminated the pain after eating, and things are coming out
just fine. I'm doing the best, er, passing, in a year.
My weight is up about 1 pound a week, I saw 160 on the scale. I'm
still aiming to bulk up to 170.
Couple changes in the treatment. They gave me scripts for Decadron
and Cytoxan for 2 weeks followed by a 2 week break with no meds. I've
sent the Wizard updates via email and he's changing it to no breaks,
I'll keep taking the Decadron and Cytoxan until he says, "Whoa-Rat.
Hold up there."
I'm sleeping OK, not great but OK. 6 hours on the average each
night. I think it's the Decadron. 0.75 mg 3X day is 2.25 mg which is
supposedly 5 times the bang of Prednisone. It's like I'm on 11.25 mg
of Prednisone, roughly.
I feel like I'm on heavy steroids, which I am.
One day I got up early and took my meds. Then that evening, I got
busy and didn't take the evening meds until later than normal. I
could feel the back pain as well as the respiratory (inflamatory)
problems reasserting themselves. I gotta watch the schedule.
My overall assessment - At the 2 week mark, the side effects are
minimal. The next test is my PSA which will be drawn in 9 days. By
my projections, the number, without treatment, would be about 90.
Anything below 90 will have me running in circles, squeaking.
-kh
gemini-aquarius7
Visit the Greatest site for good health products.See these Affiliates
(Wonderlabs - Health Products)
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"Lud" <Ludw...@gmail.com> wrote in message
news:58270e07-791d-4ce7...@h23g2000vbc.googlegroups.com...
kh
This is your 3 week update, I am reporting significant improvement.
Starting with the downside - The "peripheral neuropathy" again is
slightly worse but measured using force against a rubber band, I am
gaining strength. My typing is suffering, the caps-lock, shift, and A,
Q, Z keys.
The sleep disorder has worsened to the degree that I get 4 or 5 hours
sleep. The next day, there are couple hours in the afternoon of pure
sleep deprivation hell, which is OK on weekends when I can nap but I
can't do anything about it at work.
I can detect a slight off-taste, chemo-mouth according to JHU. It's
very subtle.
Everything else is good news.
The breathing issues suddenly cleared up as I was writing last week's
report. I have not used the Proventil in over a week. My lungs are
clear and I can take deep breaths, walk, climb stairs. Perhaps it's
being on Lasik (40 mg) for 2 weeks now. Maybe it's the Decadron (0.75
mg 3X day)
The irritation continues but I've used that to drive more work into
production and have a mild case of "WTF do I have to lose". This gives
me more power and authority in my work.
"(WTF do I have to lose) I agree, I vote we spend two hundred grand on
new advertising."
I really don't have a vote but that isn't stopping me from expressing
myself.
My back continues to improve on the Oxycodone (5 mg, 2 X day). I can
walk standing straight up now and 3 blocks is possible. No
illusions, the tumors are still in my spine and shoulders but the pain
is blocked effectively.
Appetite, diet, GI are improved. Everything has suddenly tracked back
to normal. This after a year of running to john in the morning for 2
or 3 hours.
My weight has not improved even though I am eating everything in
sight. I suspect that the Lasik water loss overshadows any weight
gain. I clocked 158 lbs yesterday at JHU. My goal is still 170. I
have moved up to the next heavier set of girly-weights.
BP: 122/78, Temp 98.6.
Here're the important numbers for Steve, the real news:
Date PSA
==== ===
12/9/2008 1
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1 - 30 day doubling on Lupron
5/26/2009 49 - Cytoxan (100mg) starts
6/16/2009 55 - 30 day doubling would be 100+
The PSA rocket-rise essentially stopped in mid May before the
Cytoxan. The Wizard says that oral Cytoxan does not exert itself for
3 months. It certainly didn't do anything 2 weeks before I started
taking it.
Recall last week I wrote: "Anything below 90 will have me running in
circles, squeaking."
Squeak-squeak-squeak!!!!! Happy squeaks.
I asked the Wizard to OK reducing the Decadron. I'm going to 0.75 mg
2X day, that may help me sleep better.
My next appointment is mid-July, the Wizard is backing off to watch
what happens.
Overall, this labrat is doing OK, almost great against the backdrop,
GM and Chrysler are BK. Turn on the tube and watch ex-millionaire car
dealership owners sobbing as they tell their employees, all our jobs
are gone. Can you imagine going home to tell your family that you
lost your job at the parts department? Myspace is in layoff mode.
Unemployment is raging out of control. The news is spun like cheap
yarn. Will NK or Iran go nuclear-nuts first?
Dendreon's Provenge is 6 months to FDA approval (last estimate is year-
end 2009).
-kh Will be squeaking loud when the FDA approves Provenge.
Mik...@anon.com
> The next day, there are couple hours in the afternoon of pure
>sleep deprivation hell, which is OK on weekends when I can nap but I
>can't do anything about it at work.
>
.
>
>Everything else is good news.
Like, for example,..
>
>The irritation continues......
>
> I can
>walk standing straight up now
Now he tells us...
> the tumors are still in my spine and shoulders
>
>Appetite, diet, GI are improved. Everything has suddenly tracked back
>to normal.
>This after a year of running to john in the morning for 2
>or 3 hours.
Now he tells us
>
>My weight has not improved even though I am eating everything in
>sight. I suspect that the Lasik water loss overshadows any weight
>gain. I clocked 158 lbs yesterday at JHU. My goal is still 170. I
>have moved up to the next heavier set of girly-weights.
>
>
>Here're the important numbers for Steve, the real news:
>
>Date PSA
>==== ===
>12/9/2008 1
>1/6/2009 2.4
>2/10/2009 4.9
>3/10/2009 11.4
>4/10/2009 20.8
>5/12/2009 45.1 - 30 day doubling on Lupron
>5/26/2009 49 - Cytoxan (100mg) starts
>6/16/2009 55 - 30 day doubling would be 100+
>
>The PSA rocket-rise essentially stopped in mid May before the
>Cytoxan. The Wizard says that oral Cytoxan does not exert itself for
>3 months. It certainly didn't do anything 2 weeks before I started
>taking it.
>
>Recall last week I wrote: "Anything below 90 will have me running in
>circles, squeaking."
>
>Squeak-squeak-squeak!!!!! Happy squeaks.
Many, many more happy squeaks your way, tough guy labrat.
MikeHi
Lud
> "Lud" <Ludwi...@gmail.com> wrote in message
Diagnosed in Jan 1999. PSA 34, GS 3+4 - on treatment since - not
enjoyable!
Steve Kramer
: -kh Will be squeaking loud when the FDA approves Provenge.
We'll be squeaking too, kh. For you!
--
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 undetectable since; last checked on 06/04/09
Illegitimati non carborundum
Steve Kramer
>
> ==> Well, considering your Dx 5 years ago, you have sure given them a run
> for the money. You'd think they would be plumb wore out!
Diagnosed in Jan 1999. PSA 34, GS 3+4 - on treatment since - not
enjoyable!
==> I knew that, Lud. But, apparently my finders didn't agree when they
typed it.
--
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
kh
...
Thank you, Steve and MikeHI,
A quick update. Even on the lower Decadron, 2X instead of 3X, 3 days
now, I feel great.
People who know and work with me have noticed the change in the last
couple weeks.
I am walking 3 blocks twice a day, that's from the parking lot to my
desk. A month ago, it was an ordeal. Now it feels good.
There's a little rise as you approach my office building. A month ago,
I dreaded it. I just walk it normally.
I am moving better, thinking clearer, and making plans for the
future.
Like Mike, I have started making changes in my life to improve things
for me and those close to me. Since I am working, I have the money.
Given that my health and strength have improved, I am no longer
holding on and hoping but have shifted to creating and accomplishing.
Guys, I am still very sick but things are getting better.
-kh I'm starting to think I'm going to beat this thing.
Sue Mullen
This is very good news kh, keep up the good work!!
sue - who will have an update when I find some energy and time!!
rosbif
>-kh Will be squeaking loud when the FDA approves Provenge.
Meanwhile, a squeak from me too - just for solidarity and in lieu of a
nightly tipple, normally raised to you but which I'm forgoing this
evening. Good news and pleased the PSA climb has slowed.
Re "what have I got to lose..."; I like the comic possibilities of
that attitude but please don't take up a career in banking or dealing
derivatives.
gemini-aquarius7
Visit the Greatest site for good health products.See these Affiliates
(Wonderlabs - Health Products)
(Cloudnine - Anti-aging Products) You may also for your entertainment
register
to dwonload movies,at movies-for-all , or to watch TV on a Satellete dish,
at satellite to home.
"kh" <tch...@yahoo.com> wrote in message
news:ac1518a1-ef04-4c04...@l28g2000vba.googlegroups.com...
kh
This is your 4 week update to the oral Cytoxan-chemo adventure.
My strength and stamina continue to improve.
Again, the downside first - The sleep disorder is regular now. I have
not slept more than 4 hours at a stretch for weeks. I am usually up
about 2:00 AM for an hour.
The chemo-mouth, where things taste odd, is back. It's not horrible
but there is an off-taste to bland common foods. Hot pepper foods
taste best.
I have not adjusted to the cycle of pain relief. I have an hour or
two of mild back pain in the morning and evening before the pill kicks
in. I do not want to increase the Oxycodone dose. I'm trying to
"work through" the discomfort using stretches, hot baths, distracting
myself.
There're very occasional, mild episodes of feeling electricity in my
extremities. These are either hot flashes or the chemo is killing my
nerves again, Peripheral Neuropathy. It's mild so I'm not fretting
about it. During the Taxotere treatment, it was painful, long, and
happened several times a day.
The hot flashes manifest also as head sweating. These last a few
minutes and then pass.
The good news.
My breathing continues to improve. My stamina is better. I've
actually got a spring in my step.
My weight has finally crossed 160 lbs and I am hopeful that I will see
170 soon. I got some heavier weights. At this rate, I'll be using my
man-weights by fall.
Even better, I've broken through a psychological barrier. Given that
the PCa tried to KILL me twice, I had a dark cloud over me. I had
been a glass half empty type as far as the economy goes. I have not
quite gone over to the glass half full but I am feeling stronger and
more confident. I am making life decisions like MikeHi.
These include upgrading my living conditions, choosing better quality
goods and services, taking care of myself a little bit more, and being
more direct with others.
-kh gnawing on the good cheese.
kh
This is your 5 week update to the oral Cytoxan-chemo adventure.
My strength and stamina continue to improve.
Again, the downside first - The sleep disorder continues. I sleep in
two blocks during the week. 4 hours, then I'm up at 2 or 3. Then I
sleep another couple hours. I am getting about 6 hours a night. I am
tired the next day. The Wizard authorized me to cut back the
Decadron to 1.5 mg per day. Until I run out of the 0.75 and get some
0.5 mg, I'm cutting the 2nd dose in half. I take half at noon and
half in the evening.
I take several naps every weekend.
The chemo-mouth is definitely there but it is not bad. A good steak
is a good steak. Blue cheese is smooth, buttery, and tangy. Some
foods do taste "off" but I am not complaining. I had oysters last
night, they were great.
Two 5.0 mg Oxycodone 12 hours apart effectively block the pain. If
stretch it to 14, 15 hours, the back pain increases to the point of
being more than "uncomfortable".
The "electric shock" feeling still happens a couple times a week. The
little finger of my left hand is numb, peripheral neuropathy. I can
still type so I report it to the Wizard and go on.
The good news.
My breathing is fine. I can walk several blocks and climb a few
flights of stairs. If anything stops me, it's back pain. Even on
Oxycodone, walking 3 or 4 blocks makes my back ache.
My weight has fallen just below 160 lbs but I am eating everything in
sight and I have no complaints about my GI tract. My plumbing
continues to work fine.
I'm feeling so much better that I'm upgrading my life, grooming,
living conditions, spending a little money on treats and things for
myself.
As you know, I'm still working. I have been extremely productive in
the last month. It's almost as if I've been reborn, re-invigorated.
Every day, I am less a cancer patient and more someone making their
way through life.
I am working on another hat. This one is different. It's a bigger
animal, carnivorous. Alaskan polar bear. I'll always be the labrat
but I wanted to have some fun.
-kh growl.
rosbif
Impressive, kh, uplifting.
I'm surprised you haven't started a blog, you deserve more readers.
R L
writer.
My PSA is doubling in a little over three months since I have become
hormone refractory. It is now 27.9. I hope to start abiraterone trial
for hormone refractory, chemo-naive patients this month in Dallas. The
trial has been slow in getting off the ground. I will let you know the
results. I have been disappoited that more abiraterone trial case
studies have not posted here.
~Ralph, who will be 83 on the 10th of July
J
> My PSA is doubling in a little over three months since I have become
> hormone refractory. It is now 27.9. I hope to start abiraterone trial
> for hormone refractory, chemo-naive patients this month in Dallas. The
> trial has been slow in getting off the ground. I will let you know the
> results. I have been disappoited that more abiraterone trial case
> studies have not posted here.
> ~Ralph, who will be 83 on the 10th of July
There's lots on the internet and in the archives about abiraterone.
Here's some and a comparison to taxotere (Docetaxel)
J
http://www.rxlist.com/script/main/art.asp?articlekey=98443
New Drug Helps Slow Prostate Cancer
Study Shows Abiraterone Is Effective Against Hard-to-Treat Tumors
By Charlene Laino
WebMD Health News
Reviewed By Louise Chang, MD
Feb. 27, 2009 (Orlando, Fla.) -- An experimental pill that blocks the
production of male hormones that fuel prostate cancer may help slow the
growth of hard-to-treat tumors.
The novel agent, called abiraterone, shrank tumors by 30% or more in
one-fourth of 31 patients whose cancer continued to spread despite standard
hormone therapy. In an additional 35% of men, tumors stopped growing.
"A few patients are still alive, without any signs of progression, more
than a year after therapy began," says researcher Charles J. Ryan, MD, a
cancer specialist at the University of California, San Francisco.
Without the new drug, they would have only been expected to live three or
four months, he tells WebMD.
The researchers also used PSA levels to evaluate abiraterone's
effectiveness. PSA levels are a measure of a protein called
prostate-specific antigen, which is produced by cells in the prostate. High
PSA levels can signal cancer. The National Cancer Institute views a
response to treatment as being seen when there is at least a 50% decline in
PSA blood level.
After 12 weeks of treatment, abiraterone reduced PSA levels by 50% or more
in 71% of the men. In two men, PSA fell to undetectable levels.
Ryan presented the results here at the 2009 Genitourinary Cancers
Symposium. The meeting is co-sponsored by the American Society of Clinical
Oncology (ASCO) and two other cancer care organizations.
Researchers are now enrolling men in a larger, longer study in which they
will be randomly assigned to abiraterone or a placebo. If the promising
results hold up, the company will apply for FDA approval of the drug. But
that's at least a few years away, doctors say.
-------------------------------------------------------------------------------------------------------------------------
http://www.ncbi.nlm.nih.gov/pubmed/19470933
J Clin Oncol. 2009 May 26.
Selective Inhibition of CYP17 With Abiraterone Acetate Is Highly Active
in the Treatment of Castration-Resistant Prostate Cancer.
Attard G, Reid AH, A'hern R, Parker C, Oommen NB, Folkerd E, Messiou C,
Molife LR, Maier G, Thompson E, Olmos D, Sinha R, Lee G, Dowsett M, Kaye
SB, Dearnaley D, Kheoh T, Molina A, de Bono JS.
Royal Marsden National Health Service Foundation Trust; The Institute
of Cancer Research, Sutton, Surrey, United Kingdom; and Cougar
Biotechnology, Los Angeles, CA.
PURPOSE: It has been postulated that castration-resistant prostate
cancer (CRPC) commonly remains hormone dependent. Abiraterone acetate is a
potent, selective, and orally available inhibitor of CYP17, the key enzyme
in androgen and estrogen biosynthesis.
PATIENTS AND METHODS: This was a phase I/II study of abiraterone acetate in
castrate, chemotherapy-naive CRPC patients (n = 54) with phase II expansion
at 1,000 mg (n = 42) using a two-stage design to reject the null hypothesis
if more than seven patients had a prostate-specific antigen (PSA) decline
of >/= 50% (null hypothesis = 0.1; alternative hypothesis = 0.3; alpha =
.05; beta = .14). Computed tomography scans every 12 weeks and circulating
tumor cell (CTC) enumeration were performed. Prospective reversal of
resistance at progression by adding dexamethasone 0.5 mg/d to suppress
adrenocorticotropic hormone and upstream steroids was pursued.
RESULTS: A decline in PSA of >/= 50% was observed in 28 (67%) of 42 phase
II patients, and declines of >/= 90% were observed in eight (19%) of 42
patients. Independent radiologic evaluation reported partial responses
(Response Evaluation Criteria in Solid Tumors) in nine (37.5%) of 24 phase
II patients with measurable disease. Decreases in CTC counts were also
documented.
The median time to PSA progression (TTPP) on abiraterone acetate alone for
all phase II patients was 225 days (95% CI, 162 to 287 days). Exploratory
analyses were performed on all 54 phase I/II patients; the addition of
dexamethasone at disease progression reversed resistance in 33% of patients
regardless of prior treatment with dexamethasone, and pretreatment serum
androgen and estradiol levels were associated with a probability of >/= 50%
PSA decline and TTPP on abiraterone acetate and dexamethasone.
CONCLUSION: CYP17 blockade by abiraterone acetate results in declines in
PSA and CTC counts and radiologic responses, confirming that CRPC commonly
remains hormone driven.
PMID: 19470933 [PubMed - as supplied by publisher]
Related articles
* Phase I clinical trial of a selective inhibitor of CYP17,
abiraterone acetate, confirms that castration-resistant prostate cancer
commonly remains hormone driven.
So shrinking tumors and/or lowering the PSA does not do as good as taxotere
(Docetaxel) ?
http://nyp.org/news/hospital/209.html
In multi-center clinical trial of patients enrolled in the Southwest
Oncology Group (SWOG), the 334 men treated with docetaxel/estramustine
lived an average of 18 months, compared with 16 months for the 332 men
treated with the standard chemotherapy treatment mitoxantrone/prednisone.
Additionally, cancer progression was slowed by half in the
docetaxel/estramustine group (six vs. three months). The SWOG trial
investigators reported a 27-percent increase in disease-progression-free
survival and a 55-percent increase in objective response rate in the
Taxotere�-containing arm. In addition, the majority of patients had a PSA
decline of more than 50 percent.
While the incidence of adverse events was greater in the
docetaxel/estramustine group than the standard chemotherapy group mainly
due to gastrointestinal and cardiovascular problems this did not result in
an increased rate of treatment-related mortality.
The findings show that docetaxel can effectively treat androgen-independent
androgen-independent (hormone-refractory) metastatic prostate cancer and
docetaxel/estramustine can now be considered a benchmark for future
clinical trials, said Dr. Daniel P. Petrylak, associate professor of
medicine at Columbia University College of Physicians Surgeons, director of
the genitourinary oncology program at New York-Presbyterian Hospital, and
lead investigator of the SWOG study. Dr. Petrylak and his colleagues were
the first to investigate docetaxel combined with estramustine for prostate
cancer, in earlier Phase I and Phase II trials.
---------------------------------------------------------------------------------------------
Mik...@anon.com
>
>This is your 5 week update to the oral Cytoxan-chemo adventure.
>
....?large snip
>
>Two 5.0 mg Oxycodone 12 hours apart effectively block the pain. If
>stretch it to 14, 15 hours, the back pain increases to the point of
>being more than "uncomfortable".
>
>The good news.
>
> I can walk several blocks and climb a few
>flights of stairs. If anything stops me, it's back pain. Even on
>Oxycodone, walking 3 or 4 blocks makes my back ache.
That's good news....
./snip
>As you know, I'm still working. I have been extremely productive in
>the last month. It's almost as if I've been reborn, re-invigorated.
>
>Every day, I am less a cancer patient and more someone making their
>way through life.
>
>I am working on another hat. This one is different. It's a bigger
>animal, carnivorous. Alaskan polar bear. I'll always be the labrat
>but I wanted to have some fun.
>
>-kh growl.
This is a very off-putting report. Most unsatisfactory. How are we to
address you now kh, with a squeak or a growl? You do make life
complicated for we poor mortals. Especially as you don't merely feel
better on a long-time adventure of crawling around, nigh broken-back,
and then half a dozen different cocktails of drugs for record times
[I think you were after the records more then the cure :-) ] ;
no, you get reborn! This is not equal playing fields at all.
In the modern, politically-correct age, I must remind you kh, it is
wrong for people to be successful. Because it might make somebody
(e.g. me) feel like a failure. I am doing good - and indeed, fine, but
how can I compete with your godlike rebirth?
Is the secret in the hats? Where can I get one? Are they expensive?
Tell all, kh - but above all - keep having a growly fun time in your
new life
Kind regards, and best wishes to all
MikeHi!
Steve Kramer
: My weight has fallen just below 160 lbs but I am eating everything in
: sight and I have no complaints about my GI tract. My plumbing
: continues to work fine.
That's a shame; you were doing so well last week.
:
: As you know, I'm still working. I have been extremely productive in
: the last month. It's almost as if I've been reborn, re-invigorated.
That's great!
kh
This is your week 6 update to the oral Cytoxan-chemo adventure.
The big news isn't my health, it's that I still have a job; that's a
big deal these days. I've also gained confidence to hire labor to
help with my yard and I'm planning some minor renovations, appliances,
bathroom upgrades. I attribute that to feeling better overall and
gaining a more positive outlook.
The downside - The sleep disorder continues. I have managed to sleep
though the night but I'm still getting about 6 hours max.
I take several naps every weekend.
The chemo-mouth is definitely there but it is not bad. I decided to
experiment and verify that things taste off. So far, this has
included a short-rib herb stew, roast chicken, Thai tripe soup,
spaghetti with olive-tomato sauce, and last Sunday, a filet mignon
seared over fire with a crabcake appetizer and ice cream on a
chocolate brownie. Yes, there is a slight off-taste but with the
proper seasoning, I don't seem to notice it.
My lower back aches, even on the Oxycodone. My little finger tingles
as do my toes. Situation Normal.
The good news.
I . have . ear . hair!!! Yes! Coarse black hairs are growing on
those little nubs in front of the ear holes. After admiring them, I
shaved them off. Last year, the Taxotere made my hair fall off,
that's everywhere, head, beard, arm hair, knuckles, eyelashes, armpit
hair, back, sack, and crack. I did keep most of my eyebrows but they
are thinner. The nose hair got thin too which is OK with me because
it used to grow out out of my nostrils and I had to cut it or pluck
it. Hair is sprouting everywhere. It's still thin except the ear
hair is major.
My breathing is fine. I've started climbing stairs and walking a
block further. I am still weak but each week, I am slightly stronger.
I saw 162 on the balance scale two days running. My weight fell back
to 161.5 today but I'm heading over to get a pizza in a few minutes.
No! No anchovies.
Every week, I am less a cancer patient. Most days I don't think about
the PSA or the tumors. I know that they are there but I need a new
washing machine. Life stuff. I'm working with another friend who
helps out the area indigents. Basically, I'm sending him some money
and he makes things happen for people who have nothing. He's been
doing that for years and I'm feeling good enough to back him.
The new hat is done. I showed it to people and half thought it was a
bunny. No, it's a bear. Oh-oh, now I see it. Yeah.
-kh It's getting better.
Steve Kramer
Thanks again for these wonderful posts.
--
"kh" <tch...@yahoo.com> wrote in message news:2fb7c393-2e2d-45e3-ba75-
-kh It's getting better.
kh
This is your week 7 update to the oral Cytoxan-chemo adventure.
My life continues to improve. The economy has made people uneasy.
There is major back-biting and fear driven sniping among some co-
workers. I'm taking the high ground and not just ignoring the office
politics but I'm making an effort to promote the best in everyone.
Having had the PCa try to kill me twice puts life into a different
perspective.
The downside - Not much to report this week.
I'm getting used to the chemo-mouth. I barely notice it on most
foods. The hotter the food, the better. Thai, Tex-mex, Indian,
Korean.
My backache is improved.
My little finger tingles as do my toes. I checked with the doc and the
word is that the Taxotere last year caused the peripheral neuropathy.
It will improve but it's very slow. The Cytoxan will not make this
worse.
I'm sleeping through the night. I can still feel the Decadron at 1.5
mg/day but it is not keeping me awake at night.
I saw 164.4 lbs on the digital scale at JHU. The next day my weight
was 163 on the balance scale at work. This is up from the low of 156
about a month ago. I'm aiming for 170 lbs.
I'm walking farther. I managed to climb 6 flights of stairs, ONCE.
I'm not pushing it but I had to try.
PSA? Check it out!!!!!
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1
5/26/2009 49
6/16/2009 55
7/14/2009 40.3 7 weeks into the Cytoxan (oral chemo)
Graphed on a semi-log plot using Excel, the alarming 30 day doubling
time runs up to May, goes flat, then falls.
JHU says that Cytoxan is an old chemo drug and they are having good
results with it. They said it usually takes 3 months to show results.
I'm working more, doing more for myself and others. I know I've still
got PCa but I'm living with it, not living in fear of it.
I wore the polar bear hat to JHU, got more laughs. The Wizard
cringes back when he sees me and I know he's laughing.
-kh Keep laughing.
tarhoosier7
Steve Kramer
PSA? Check it out!!!!!
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1
5/26/2009 49
6/16/2009 55
7/14/2009 40.3 7 weeks into the Cytoxan (oral chemo)
==> Wow! He really is a wizard.
-kh Keep laughing.
==> There is no other way to live.
--
kh
This is your week 8 update to the oral Cytoxan-chemo adventure.
The company that I work for might have some revenue problems and
rumors are flying. This isn't a surprise. As far as I can tell,
every company is struggling. The good news is that my strength and
stamina have greatly improved over the last few months.
I am working on a couple side projects to help the less well off in my
community. I have some pals who do charity work and I've started
working though them.
About a month ago, I woke up one day and suddenly felt a whole lot
better. It might be the two 5mg Oxycodone, the Prevacid, the 1.5 mg
of Decadron, or the 100 mg Cytoxan kicking in. The Wizard of Johns
Hopkins says that it's the side effects of the Taxotere fading. The
last infusion was last November.
I'm not certain that's the case. Earlier this year, as my PSA began
climbing, my back began hurting. I figured it was the tumors in the
bone. Maybe the Oxycodone is buffering the pain but maybe I'm getting
better. The thing I can't quite resolve is that my PSA rapid doubling
(PSADT of 30 days) cooled off before I started taking the Cytoxan.
Now that the PSA numbers are falling, woo-hoo.
Perhaps something else was happening.
Maybe as the Taxotere faded away, my general health improved and THAT
made the PSA numbers level off.
Like last week, it's all good news.
My weight is 164 lbs on the balance scale at work. I am thin but I no
longer look like walking death. I have some muscle in my arms and am
walking better. I don't think I'll make 170 this month but I'll try
for August.
I'm helping pay for a Pizza party at work. My boss and I are pitching
in some cash to make things a little better for everyone.
Don't want to politicize a.s.c.p but one of our own is turning on
us.
"Kerry has floated a proposal to tax insurance companies on their most
expensive healthcare plans, a Finance Committee source said.."
<http://www.boston.com/news/nation/washington/articles/2009/07/21/
kerry_wants_insurer_tax_to_pay_for_care/>
That'd be me. I worked through the chemo because without the job, I
would not have medical insurance. I chose and paid for the best
medical insurance I could afford. Now, Senator John Kerry, Prostate
Cancer survivor, wants to tax the better, more expensive medical
insurance to pay for, well, what?
Other people's poor life choices?
Hey Senator John! I don't want to pay more for the better medical
insurance. How does this help me?
No matter, I'll keep working and laughing. It looks like the PCa
tries to get me about once a year. If I can beat it back, hey, I
win.
If I can have a good time, I win double. Last weekend, I made to
another outdoor festival flea market. The pork barbecue was
disappointing, too sweet and too much tomato sauce. The fried
potatoes were great and I had a double scoop of ice cream, one scoop
of vanilla and one of black cherry.
I walked the festival for three hours. Slow but I did walk it. I
checked out the flea market vendors. There was a lot of junk for
sale. I poured through the DVD's, $5 each but nothing I wanted. I
bought a cigarette lighter for $3.00. I don't smoke but got it
because it was so, well, shiny. It works well too. I think it's a
piezo ignition.
-kh growlin' at the politicians but salivating about ice cream and
pizza parties.
Steve Kramer
: My weight is 164 lbs on the balance scale at work. I am thin but I no
: longer look like walking death. I have some muscle in my arms and am
: walking better. I don't think I'll make 170 this month but I'll try
: for August.
Great news, again, kh. I wish I could give you six pounds.
: "Kerry has floated a proposal to tax insurance companies on their most
: expensive healthcare plans, a Finance Committee source said.."
:
: <http://www.boston.com/news/nation/washington/articles/2009/07/21/
: kerry_wants_insurer_tax_to_pay_for_care/>
:
: That'd be me. I worked through the chemo because without the job, I
: would not have medical insurance. I chose and paid for the best
: medical insurance I could afford. Now, Senator John Kerry, Prostate
: Cancer survivor, wants to tax the better, more expensive medical
: insurance to pay for, well, what?
Maybe, when they decide to tax tea, people will understand what's going on.
RickMerrill
It's great you're feeling better both physically and emotionally.
> Don't want to politicize a.s.c.p but one of our own is turning on
> us.
How is Kerry "one of our own"? Oh, I see below he is a PC survivor.
> "Kerry has floated a proposal to tax insurance companies on their most
> expensive healthcare plans, a Finance Committee source said.."
I think that quote was incorrect: according to the Boston Globe other
proposals have tried to tax ALL private plans, but Kerry's compromise
suggestion is to tax ONLY the most expensive Corporate plans.
It would not include private pay plans, only company paid plans.
> <http://www.boston.com/news/nation/washington/articles/2009/07/21/
> kerry_wants_insurer_tax_to_pay_for_care/>
>
> That'd be me. I worked through the chemo because without the job, I
> would not have medical insurance. I chose and paid for the best
> medical insurance I could afford. Now, Senator John Kerry, Prostate
> Cancer survivor, wants to tax the better, more expensive medical
> insurance to pay for, well, what?
>
> Other people's poor life choices?
That is correct. BUT that is how "insurance" works: it spreads it the
risks out over the whole group.
>
> Hey Senator John! I don't want to pay more for the better medical
> insurance. How does this help me?
>
> No matter, I'll keep working and laughing. It looks like the PCa
> tries to get me about once a year. If I can beat it back, hey, I
> win.
I like your attitude. Best wishes!
...
Steve Kramer
news:h45dcu$ha3$1...@news.eternal-september.org...
: That is correct. BUT that is how "insurance" works: it spreads it the
: risks out over the whole group.
Actually, that's how socialism works.
With insurance, it spreads the risks over a much smaller group, the size of
which usually depends upon how much you're willing to pay for it, either
directly or by negotiating through your employer a salary/benefit package.
Vince
> Other people's poor life choices?
Sorry kh, it's not all about "poor life choices". Some of us have been
laid off or can't find employment and have NO insurance. That is not a
life choice. But a unfortunate result of the economy. I'm just thankful
that I have my VA health coverage to fall back on.
Vince
--
PSA 4.73 07/2000 @ 48
Biopsy 07/2000 G7 (3+4)
RRP 09/2000 @ 49 G7 (3+4), T2b Neg margins
PSA < 0.1 for 14 months post op
PSA .8 .8 .6 .8 04/2008 thru 12/2008
IMRT 02/2009 - 04/2009, 38 treatments, 60.8 Gy total
PSA .02 05/18/09
RickMerrill
> "RickMerrill" <Rick0....@gmail.NOSPAM.com> wrote in message
> news:h45dcu$ha3$1...@news.eternal-september.org...
>
> : That is correct. BUT that is how "insurance" works: it spreads it the
> : risks out over the whole group.
>
> Actually, that's how socialism works.
Haven't you read Ann Rand?! Socialism takes from each according to their
ability and gives to each according to their need. True insurance (not
the abortion we in the US call "health insurance" (an oxymoron if ever
there was one)) spreads the costs EVENLY over all.
>
> With insurance, it spreads the risks over a much smaller group, the size of
> which usually depends upon how much you're willing to pay for it, either
> directly or by negotiating through your employer a salary/benefit package.
>
You're actually talking about what is wrong with the present system,
which puts a lot of money in the "insurance company" pockets for no
actual value added. I think it would be better to put that money in
the hands of the doctors instead.
RickMerrill
> On Tue, 21 Jul 2009 03:40:15 -0700, kh wrote:
>
>
>> Other people's poor life choices?
>
> Sorry kh, it's not all about "poor life choices". Some of us have been
> laid off or can't find employment and have NO insurance. That is not a
> life choice. But a unfortunate result of the economy. I'm just thankful
> that I have my VA health coverage to fall back on.
>
> Vince
>
>
Nice to hear (what I hope is) a good word for the VA.
kh
This is your week 9 update to the oral Cytoxan-chemo adventure.
Not much to report this week as the changes are minimal but were
positive.
My strength and stamina continue to improve. I can walk easier with
more spring in my step. Today, I worked a 12 hour day. I had not
planned on doing that but several people were out and I had to fill
in.
My anger and angst is reduced. I slept 8 hours last night. I did
wake up a few times but fell asleep quickly.
My weight is still at 164 on a balance scale. I am eating well,
small meals, some home cooking, some cafeteria chow, occasional fancy
gourmet fare, lots of basics. This is summer in the mid-Atlantic.
That means fresh sweet corn on the cob, tomatoes with a tang like all
out doors, sweet onions, squash, I had that with a grilled steak one
day, then cheeseburgers on another. These are good times. I have ice
cream almost every day. I'm snacking on cashews. The chemo-mouth is
mild and intense flavor of fresh produce overwhelms it.
I had diarrhea and a stomach ache all of last year. That's gone. I
eat everything and have no problems.
If I just sit still, I feel almost normal.
Point to clarify. I know that the economy is the pits. I have many,
many friends who are out of work. I help them where I can. They are
responsible IN PART for their situation. Everyone is not 100% to
blame for what happens to them. External forces may be beyond our
control but we are not victims.
One fellow who is out of work had an offer for a job at half-pay last
summer. He turned it down. It was his choice to be unemployed for
another year. He was cocky. "That offer was an insult!"
Others played for the last decade rather than develop their skills
either through college or self-education projects. Some coasted at
work and were clearly the bottom-performers. When times are hard,
which they are, marginal or perceived low-value workers are cut.
Unemployment is officially running at 9.5%. I believe it is much
higher if you include the grossly underemployed and those who have
fallen out of the system.
Using the 9.5% number, that means that 90.5% are employed. Employment
might mean flipping burgers instead of a $60K office job but it is a
job.
Even if the number is 20%, that still means that 80% are employed.
The Pizza party at work went well. People had a good time and my
boss and I made points.
-kh I might not beat the PCa or the economy but I ain't going down
easy.
Steve Kramer
: One fellow who is out of work had an offer for a job at half-pay last
: summer. He turned it down. It was his choice to be unemployed for
: another year. He was cocky. "That offer was an insult!"
"Cocky" is one word for it - not the one I would use. During the mid-70s,
the last time we had this kind of down turn, I was laid off. I left
'unemployment' after a few weeks and started selling used school busses and
working as a handyman around the school bus lot. I took on a second job as
a security guard at a local department store. From then forward, I always
had at least two jobs, the total of whcih did not equal my pay from that
which I was laid off and most of which had no association with me degree.
During that time, I worked a total of five other jobs; mechanic/ tow truck
driver, junk yard manager, small village police officer, and air pollution
control inspector. Finally, 2� years later, I was recalled to my original
position.
I had a wife when I was laid off. I had a house and a son, and a daughter
on the way when I got recalled.
To sit around on one's ass only takes years away from one's life. And, as I
found out at 46, the life wasn't going to be all that long.
kh
> "Cocky" is one word for it - not the one I would use. During the mid-70s,
> the last time we had this kind of down turn, I was laid off. I left
> 'unemployment' after a few weeks and started selling used school busses and
> working as a handyman around the school bus lot.
I was out of work for about 6 months in the mid-70's. That experience
may have improved my survival skills.
I've been a head-down, get the work out type. I do my research. I
went back to university and added an advanced degree. That doesn't
always help. There are losers in every work place who think that's
silly and will go out of their way to stigmatize and marginalize heads-
down workers. After all, we're a threat to them because we don't
play their game.
Over the last 18 months, I've seen the company lay off dozens of the
game-players.
Everyone is at risk today. This is the worse economy I've seen in my
working career. As my strength and stamina improve, as the Cytoxan
beats back the PCa, my odds of holding this job get better.
I'm fighting for survival in both the economy and against the PCa.
-kh snarling, fangs, claws against the PCa and economic crisis but
just a small, soft, furry animal otherwise.
Steve Kramer
Over the last 18 months, I've seen the company lay off dozens of the
game-players.
==> They obviously were not ready for warrior rat attack!
kh
This is your week 10 update to the oral Cytoxan-chemo adventure.
Turns out that if I work more than 10 hours a day and do that several
days in a row, I'm completely exhausted. This is desk work, not
physical labor. Now I know my limits.
For several weeks now, I've been sleeping through the night. I
attribute this to getting over last year's treatment, the Taxotere and
Radiation. If you go that route, plan on at least a half year to
recover. I'd call it more like 9 months but you might do better.
I saw 166 pounds on the balance scale on Monday but 164.5 on Tuesday.
I'm gaining about a pound a week. That's less gain than I hoped but in
two years, I could take Steve Kramer in the PCa Sumo Olympics.
Steve, be afraid, be very afraid, you may face a fat-rat in a sumo
thong, clapping, and doing the leg stomp.
At 166 pounds, I am still thin but I've lost the cancer patient,
walking skeleton look. Casual acquaintances have remarked, "Hey,
you're looking good, dude." That's code for "you looked like death
warmed over the last time I saw you."
Strength, stamina are up. Pain is slightly reduced but I'm not ready
to cut back on the 5 mg Oxycodone from twice a day.
My hair is thin. I've got brittle nails. I bruise easily, so maybe I
shouldn't plan on sumo body slapping Steve.
My head is clear. I spent most of last year in a Chemo fog. This is
a lot different. Each week, the world becomes more crisp and vivid.
I've started working on my hobbies, meeting with friends, fixing my
place as if I'll be around for while.
-kh up from here.
Steve Kramer
: Turns out that if I work more than 10 hours a day and do that several
: days in a row, I'm completely exhausted. This is desk work, not
: physical labor. Now I know my limits.
Ha! I suspect that would wear out all of us!
: I saw 166 pounds on the balance scale on Monday but 164.5 on Tuesday.
: I'm gaining about a pound a week. That's less gain than I hoped but in
: two years, I could take Steve Kramer in the PCa Sumo Olympics.
: Steve, be afraid, be very afraid, you may face a fat-rat in a sumo
: thong, clapping, and doing the leg stomp.
I was 6'0" and 14 years old when last I saw 166. I think I'm up to the
challenge. :-)
: My head is clear. I spent most of last year in a Chemo fog. This is
: a lot different. Each week, the world becomes more crisp and vivid.
: I've started working on my hobbies, meeting with friends, fixing my
: place as if I'll be around for while.
:
: -kh up from here.
I've said it before, but I can think of no better descriptor: Inspiring...
kh
This is your week 11 update to the oral Cytoxan-chemo adventure.
Work is going very well. I get up early, work a full day plus and
still have a little left in me in the evening. This is a dramatic
difference from a few months ago. My head is clear during the day and
I am working effectively.
Each week, I feel better than the previous.
I made 167 pounds on a balance scale. I may hit my target of 170
pounds this month. If I do, I will ease back on the eating and
concentrate on stamina, toning, and strength building.
My back pain is still there. I asked the Wizard at Johns Hopkins
about it. Here's the deal. I have cancer in my bones, it is possible
that neither the Taxotere nor the radiation will eliminate the cancer
or the pain. I may have this forever, it may improve, it may get
worse. No one knows.
With 5 mg Oxycodone 2X day, I can walk, work at my desk job and live a
normal life, unless it gets worse.
Will it get worse? I'm guessing not. Here're the numbers for Steve.
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1
5/26/2009 49 <---<<< Cytoxan Starts Here
6/16/2009 55
7/14/2009 40.3
8/11/2009 33.6 <---<<< Woo-Hoo-Squeek-Squeek
My PSA is now 22 points below the peak. I'm still mulling over the
"flattening" that happened between 5/12/2009 and 5/26/2009. Even
though that's only a two week period, I had a PSA doubling time of 30
days prior. 45.1 to 49 is not a PSADT of 30 days. Something
stopped it before I started on the Cytoxan.
It may have been the Decadron. According to JHU, Decadron itself is a
treatment for Prostate Cancer. Cytoxan, in my treatment protocol, is
the "boost". I'm on a combination treatment, Decadron, Cytoxan, and
Lupron.
Clearly, I have an aggressive strain. I've been watching the news and
will post an update on more arrows. My job is to hang on, keep going
until they develop a far better treatment or even a cure.
It looks more and more likely that I will outlast this disease. I
checked my records and I was diagnosed over 5 years ago.
-kh 5 years and still squeeking!!!
Steve Kramer
: My back pain is still there. I asked the Wizard at Johns Hopkins
: about it. Here's the deal. I have cancer in my bones, it is possible
: that neither the Taxotere nor the radiation will eliminate the cancer
: or the pain. I may have this forever, it may improve, it may get
: worse. No one knows.
Why would radiation not work to eliminate the cancer? at least temporarily?
Assuming that you can put radiation into the cancer without wiping out
necessary surrounding tissue...
: 8/11/2009 33.6 <---<<< Woo-Hoo-Squeek-Squeek
Dropping like a rock!!
: My job is to hang on, keep going
: until they develop a far better treatment or even a cure.
I can think of none who better deserve it.
Steve Kramer
news:40843a5c-dea4-4107...@o35g2000vbi.googlegroups.com...
:
Dammit!!!! I just realized that I had made a pack (with myself) to seek out
your hand to shake it when next I was in the area. And I was just there
(actually Potomac) last Thursday and completely forgot.
I am sorry.
kh
> Why would radiation not work to eliminate the cancer? at least temporarily?
> Assuming that you can put radiation into the cancer without wiping out
> necessary surrounding tissue...
I don't know the answer.
In Feb 2008, the PCa in my spine gave me excruciating pain. I
literally went crawling to the docs. I saw the MRI; the vertebra
looked like oatmeal. According to the Radiation Oncologist, the PCa
irritates the living bone and causes it to swell. The bone expands but
is weaker. It impinges on the spinal nerves. The pain was like
nothing I have ever experienced. One misstep can shatter the
vertebra, break the nerves, and cause paralysis. An indicator that is
happening is a sudden, complete loss of bowel control. If that
happens, they said to take the Decadron.
They put me on Percocet for the pain, which helped right away. I was
also on Decadron, I think to reduce the bone swelling. They used the
Trilogy 15 times. The improvement was slow but at the debrief, the
Radiation Oncologist told me that the "palliative radiation" can kill
the cancer and it usually does not reappear.
I'm guessing that my current pain comes from bone damage that has not
been reversed.
A month after the radiation, I started the Taxotere. I don't know if
the radiation hitting my stomach and intestines or the Taxotere,
probably both, caused it but I spent 2008 with chronic diarrhea and
wasted away, losing 40 pounds. I also had a chronic stomach ache in
spite of taking Zantax-150s.
Suddenly, about 2 months ago, 6 months after the last Taxotere
infusion, the diarrhea stopped and goin' in the morning became a joy.
I go once and I'm good for the day. That corresponded with switching
from Zantax-150 to Prevacid. Was it that time passed or was it the
Prevacid?
About the same time, I woke up one day and felt clearer, stronger than
I had felt in a year. It was sudden.
I'm still weak; my back aches, but everything is improving.
-kh
kh
> Dammit!!!! I just realized that I had made a pack (with myself) to seek out
> your hand to shake it when next I was in the area. And I was just there
> (actually Potomac) last Thursday and completely forgot.
Next time.... the rat-run goes from Northern Virginia to Baltimore and
across to Annapolis. I am racing back and forth, you'll spot me easy,
I'm the one with the ears and the eyes on the bill of the cap.
I forgot to mention, minor side effects are still there but not that
bothersome. Improvement continues.
A couple times a day, there's some nerve tingling like a hot flash but
in my feet mostly. I don't know if it's new "peripheral neuropathy"
coming on or the old going away.
Some foods taste off. JHU says that this is normal for Cytoxan. It's
much, much milder than the off-taste from the Taxotere.
I can walk about a half mile now. I have to walk it slow, it leaves me
drained for a few minutes but I can do it.
It seems that about 6 months after the Taxotere, the worse of the side
effects begin to fade. 9 months, about where I am now. you're
definitely returning to normal.
I can watch the news and I'll start hollaring, furious, like any
geezer. Banksters!!!
I don't get this one because I'm on Lupron but 50-something babes, you
know the ones that go to the gym, dress nice showing a little
cleavage, and style their hair, they're starting to look good. I've
noticed stirrings and, ah, turgidness.
If the researchers would just find that silver bullet, clean out the
PCa, get me off the Lupron, I could ...
-kh rat on the loose with some dreams
Steve Kramer
On Aug 14, 8:08 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:
the vertebra
looked like oatmeal. According to the Radiation Oncologist, the PCa
irritates the living bone and causes it to swell. The bone expands but
is weaker. It impinges on the spinal nerves.
I'm guessing that my current pain comes from bone damage that has not
been reversed.
==> Interesting. I have a similar condition with a ruptured disk. When
the gelatin oozes out of my disk, it squeezes the spinal nerves. In 1982,
it put me on my living room floor for six weeks. Last year, it got me so
bad that even a flat floor didn't relieve the pain. I clearly see you
crawling to your doctor.
Steve Kramer
If the researchers would just find that silver bullet, clean out the
PCa, get me off the Lupron, I could ...
-kh rat on the loose with some dreams
==> Yeah, we all know what rats do.
kh
This is your week 12 update to the oral Cytoxan-chemo adventure.
My strength and stamina continue to improve. I can tell the
difference on a monthly basis. Each week's improvement is very
slight. It's like my weight.
I saw 168 on the scale yesterday. I'm gaining about 1 pound a week.
Within each week my weight fluctuates about 2 pounds but the week over
week trend is up.
3 months ago, it was a major effort to walk 2 blocks. I can handle
twice that now. The next goal is to be able to walk continuously,
without pausing. If I can walk 6 blocks at a normal pace, I can walk
12, then 24.
While the back pain is still a bother, it's not as bad as it was. 6
months ago, my shoulder blades' ached. The bone scan showed hot spots
there. I have not felt shoulder blade pain in a long while.
I refilled the 5 mg Oxycocone and got generics, small white pills
instead of capsules. I can snap these in half and maybe take 2.5 mg
at a time, totalling 7.5 mg/day instead of 10 mg/day.
I've been on Cytoxan for 3 months. In that time, my PSA has fallen,
my weight is up 12 pounds, stamina improved, strength is up. I've
been working longer days. I'm sleeping through the night. My stomach
is better.
Had scallops broiled in butter last weekend, followed with a
chocolate brownie topped with ice cream.
-kh a dramatic improvement in all areas in 3 months.
kh
My weight increase has stalled at 168. I've noticed a slight
worsening of stomach issues. I'm still taking the Prevacid 30 mg once
a day. I am eating well and my appetite is good. Fresh fruit, good
bread with peanut butter, a taco salad, Chinese carryout last night
from the place down the street. One telling point is that I only ate
half the dinner and will have the left-overs for lunch. Even though I
am eating regular and eating good balanced meals with high calories,
my stomach says "stop" early.
I have loads of snacks at my desk, nuts, trail mix, crackers, dried
and fresh fruit, packs of peanut M&M's. I don't have enough of an
appetite to get into my snacks.
On the balance, my physical activity is up. I can walk 3 or 4 blocks
without gasping for air. I am walking briskly. If it weren't for the
back pain, I could push the distance even more. At about 2 blocks,
pain starts in my lower back. By the 4th block, I'm ready to give
up. This is on 5 mg Oxycodone twice a day.
The most significant difference that I feel normal, empowered, up. I
know that "It" is lurking but my priority is my life, work, friends,
family, having some laughs, getting stuff done.
I pulled an 11 hour shift at work yesterday, came home, did a load of
laundry, swung by the Chinese carryout for Sczheuan pork, worked on my
computer, made some phone calls, BORING NORMAL STUFF.
This morning, I did more work on my computer, paid some bills, more
BORING NORMAL STUFF.
6 months ago, laundry was a big deal because it involved several trips
up and down 2 flights of stairs, bending to reach into the washer and
dryer, lifting 20 pounds of clothes. I just did it, like NORMAL
PEOPLE do.
I can do BORING NORMAL STUFF again.
Johns Hopkins told me to come back in 2 months. They're easing me
off the leash. Heh, heh, heh, glancing around, beady eyes, what can I
get into?
-kh the life of a lab rat continues.
Steve Kramer
On the balance, my physical activity is up. I can walk 3 or 4 blocks
without gasping for air. I am walking briskly. If it weren't for the
back pain, I could push the distance even more. At about 2 blocks,
pain starts in my lower back. By the 4th block, I'm ready to give
up.
==> Sorry to read this. Walking has always been the best medicine for my
back ails.
I pulled an 11 hour shift at work yesterday, came home, did a load of
laundry, swung by the Chinese carryout for Sczheuan pork,
==> Mmmmmmmmmmm. Next to Mandarin Shrimp, my favorite! But, I have to
drive to Potomac to get Mandarin Shrimp. Can't find it around here.
kh
> Mmmmmmmmmmm. Next to Mandarin Shrimp, my favorite! But, I have to
> drive to Potomac to get Mandarin Shrimp.
There's a Thai place down the street that I hit every few months.
They offer fried appetizer rolls with shrimp filling.
Take a short break then have a big bowl of steaming hot soup. They
give bean spouts and sliced hot peppers on the side. I can't wait for
the cold weather, hot spicy Thai noodle soup, watch the snow falling
outside.
I'm doing better this half week. My weight was up to 170 pounds for
an instant but it fell back the next day. Life progresses in small
steps.
-kh I'm gaining back strength,
Steve Kramer
On Aug 26, 9:02 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:
My weight was up to 170 pounds
==> You made it, Fat Rat!!
Gourd Dancer
GD
"kh" <tch...@yahoo.com> wrote in message
news:8f834943-6b6e-41f3...@r38g2000yqn.googlegroups.com...
Lud
Looking back on your battles with PCa is a truly amazing journey - I
wish you would publish it as it would be a great inspiration to many
patients.
I wish you continuing good success.
Lud
kh
170 lbs and holding! Not quite lumbering but I am no longer scrawny
and do not have the walking skeleton look of cancer patients about to
die.
I've stopped fretting about my weight. If I'm hungry, I eat. My
appetite is still off. This is a combination of "chemo-mouth", where
things taste off and a lingering dull ache in my stomach.
Really spicy and sweet foods taste about right. Bland fare with a
slight amount of salt is the worse. If I can keep my weight around
170, I'll look about right and can build muscle.
The back pain bothers me less this week. I'm thinking about reducing
the pain killer a little. The last script of Oxycodone came as
tablets. I can break these apart and experiment with 2.5 mg 3X a day
as opposed to 5 mg 2X.
We'll see.
Walking is getting easier and work... work is going amazingly well.
My "I've got a fatal disease, so what do I care what people think"
attitude is working well. I'm not challenging or argumentative but if
I see a better way, I'll tell people. even our new boss-of-bosses.
Since this thing tries to kill me about once a year, I'm not too
worried about my tenure in the company or kow-towing to anyone. If
they don't like my suggestions, I simply do not care. I don't argue,
I tell them my perspective and let-it-go.
I figure, by the time the company is screwed up royally, I might be
dead. I might as well tell people how I think things should be, in a
positive way of course.
It makes for a pleasant work environment at least for me.
Don't know if you've noticed but the economy has been bad. Our
company has laid off several thousand people over the last 2 years.
I see other workers acting out their fears. The weakest, least
capable performers assume a posture of aggressiveness; they demand
this, strut around and order that; they pretend to be "in charge" like
a Type-A personality gone berserk. I don't think they realize that
everyone can recognize a little dog yapping fearfully.
I have inside info that another 1,000+ person layoff is coming, the
yappers will be gone shortly.
-kh lab rats walk quietly and get the cheese.
Steve Kramer
The last script of Oxycodone came as
tablets. I can break these apart and experiment with 2.5 mg 3X a day
as opposed to 5 mg 2X.
==> If you haven't already, I'd check with a pharmacist about that, Fat
Rat. Some pain killers have a coating that is designed for timed release.
Oxycontin, if that is your Oxycodone, for instance should not be chewed as
it releases too much of the oxcodone into your system. I don't know about
splitting them or about Percodan, Percocet, or Tylox.
My "I've got a fatal disease, so what do I care what people think"
attitude is working well. I'm not challenging or argumentative but if
I see a better way, I'll tell people.
==> Yeah, people sure get strange when they find you have cancer. Then, if
they press it and find it's terminal, they really get strange. I still
haven't come up with a working solution for that. I've tried several
approaches, but none seem to work.
kh
> ==> If you haven't already, I'd check with a pharmacist about that, Fat
> Rat. Some pain killers have a coating that is designed for timed release.
> Oxycontin, if that is your Oxycodone, for instance should not be chewed as
> it releases too much of the oxcodone into your system. I don't know about
> splitting them or about Percodan, Percocet, or Tylox.
I should be OK, these pills have a score line across them.
Doing pretty good on the lower dose. Today was the first day.
I'm looking forward to whooping it up this weekend.
-kh
kh
This is your week 15 update to the oral Cytoxan-chemo adventure.
My weight fell back to 167 lbs on a balance scale. This is after a
weekend of eating steak, a two scoop hot fudge sunday from Baskin-
Robbins, and generally eating everything in sight.
I think it's water loss; my belly isn't bulged out as bad as it was
and my pants haven't fallen down recently. During the worse of the
chemo last year, my 37 inch waist ballooned out to 44 inches and I
resorted to suspenders. Cancer and chemo can cause ascites, fluid
build up in cavities. I had that bad.
My arms are stronger and look normal. I've lost the pipes-for-arms
look of cancer patients. I'm doing light physical work around my
place and mild exercise.
I am walking better. 4 blocks is still my limit but that's on a
slight cut back on pain killer.
My head is much clearer. I still tire easily but I have worked some
long days and I am productive at work. Far more than most.
This is a weird one. There were real stirrings "down there" the other
day. It wasn't a woodie but I could have done something useful with
it. I've started thinking about doing fun things with furry female
rats. Guys, there is hope.
-kh Trending up.
Steve Kramer
My weight fell back to 167 lbs on a balance scale. This is after a
weekend of eating steak, a two scoop hot fudge sunday from Baskin-
Robbins, and generally eating everything in sight.
==> Clearly, you need a lesson on eating. :-)
This is a weird one. There were real stirrings "down there" the other
day. It wasn't a woodie but I could have done something useful with
it. I've started thinking about doing fun things with furry female
rats.
==> You rarely send an update where I don't let fly with an inadvertent
chuckle; sometimes a loud laugh. Thank you for that.
kh
This is your week 16 update to the oral Cytoxan-chemo adventure.
My weight is still holding at 167 pounds roughly. I weigh myself 2 or
3 times a day using a balance scale on my potty breaks.
170 is a goal but it's not arbitrary. I had radiation to my spine
which caused collateral damage to my stomach and intestines in early
2008; this was followed shortly by 10 infusions of taxotere. They
dosed me with Decadron and Prednisone, in part to hammer the cancer
but also to block side effects of the tax.
The diarrhea, steroid-caused muscle wasting, and general ill health
left me scrawny and weak. I lost 40 pounds last year. Imagine a
disheveled, starving, hairless, rat; that'd be me.
So far, I've gained back just over 10. 170 pounds would mark 14
pounds over the low of 156. I still can't eat belt-buster meals
comfortably. I can handle a half meal without a stomach ache. I'll
cook a steak, eat half with half a baked potato and some greens. 3
hours later, I'll finish it. That's how I'm coping.
My energy level continues to improve, especially compared to 6 months
ago.
Strength? Still not there. Yesterday, I carried a 45 pound appliance
from my basement to the top floor. It should have been easy but it was
HEAVY.
I'm a tool-rat; I used to do repairs around my place. My power tools
are too heavy; I can't control the kick. 2x4's, plywood, sheetrock
are all heavy and hard to work with.
Part of the problem is the nerve damage, "Peripheral Neuropathy". I
don't have the fine motor control to anticipate and lean into the
movement of the tools and materials. I'm clumsy. I see it when I
walk.
This is not bad. As I improve and do things, I'm noticing how far I'd
fallen. 6 months ago, I would not have attempted to move 45 pounds or
pick up my circular saw. This just says, practice more, get it back,
walk, lift.
It took a year for the chemo and radiation to knock me down. It's
fair to take a year to come back. I'll let you know how this goes.
Good news! A second growth of hair has started. This is a fine brown
pelt, about 1/4 inch long now. It is expanding from my scalp to my
forehead and beyond. I may have to start shaving my forehead,
temples, between my eyes, eyelids, places I never shaved before.
Or, I could just let the hair grow and stare at you, beady glowing
eyes in a mass of brown fur.
-kh This rat thing is getting out of hand.
Steve Kramer
Or, I could just let the hair grow and stare at you, beady glowing
eyes in a mass of brown fur.
-kh This rat thing is getting out of hand.
Thanks again ratman. Sorry you can't make the 170 cut-off. I wish I could
give you some of mine -- trans fat?
Lud
Yah - it takes a dammmm long time to recover :{(
Wishing you a good recovery - hair comes back amazing.
I'll gladly trade your 167 for my 182 - ok?
Lud
kh
It's all good news this week.... as good as it gets when you have
metastatic cancer.
I saw 170 pounds twice on the balance scale. I have about a 3 pound
swing but I'm calling 170.
I had a full-up annual with my internal medicine guy. It's all
systems go. All my blood chemistries in the AMA panel are within
range or very close to it. Red counts are a little low but not
alarmingly so and being on Chemo, that's to be expected. A1C 6.8,
cholesterol, everything is tracking well. BP 122/78.
PSA... 31. This is not a great number and I hoped for something in
the 20's but compared to the 55 in June, I am not complaining.
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1
5/26/2009 49
6/16/2009 55
7/14/2009 40.3
8/11/2009 33.6
9/17/2009 31
The CAT scan showed no new lesions and no expansion of existing
lesions. That backs up the stable-falling PSA.
The question then is how well am I tolerating the Cytoxan? I'm doing
OK. I'm still weak, I need 9-10 hours of sleep. Perhaps some of that
is the Oxycodone.
I continue to think I'm going to beat this. Not this year and not
with the Cytoxan. The Cytoxan keeps me going. I'm hoping for
another 18 months although 33.6 to 31 says that the rate of fall is
slowing down.
If I can get another 18 months, that'll put Provenge, Abiraterone,
MDV3100, and several other treatments within reach. I think we're on
the good side of the lever. Every additional year, gives us TWO more
years. At some point, some treatment will whack the hell out of the
cancer. Then it's off the Lupron and on the Vitamin-V.
-kh at least that's the plan.
Steve Kramer
: If I can get another 18 months, that'll put Provenge, Abiraterone,
: MDV3100, and several other treatments within reach. I think we're on
: the good side of the lever. Every additional year, gives us TWO more
: years. At some point, some treatment will whack the hell out of the
: cancer. Then it's off the Lupron and on the Vitamin-V.
I sure hope you're right, kh. Wouldn't it be wonderful if this forum just
faded away due to lack of need?
kh
The good news continues.
My weight is holding at 170 pounds. I still cannot eat full meals and
with the dull ache in my stomach, don't feel like eating regular
meals. I eat by the clock, not by internal cues. It's up to me to
choose well; select balanced meals and keep the calories coming in.
Last weekend, I managed some physical labor. It was exhausting but I
was able to move household items, walk a short distance, and generally
act like a regular person.
That night, I had a horrible cramp in my shin. I'm taking that as
good news, that I pushed the envelope, no pain-no gain.
Yesterday, I carried some supplies to my office, a week's snacks, and
a half gallon of milk that I put in the fridge. It's a three block
walk from the parking lot. It was a struggle. I weighed it; it was
only 15 pounds.
Last night, I put a couple hours into my craft-hobby. This was just
sitting and thinking while working with my hands. I have not done
this for a couple years. It is a sign that I am on the physical,
psychological, emotional, up swing. This complements the morning a
few weeks ago, when I actually enjoyed wiping down my stove and
cleaning.
The side effects are still with me but are not debilitating.
I have an occasional "electric shock" in my legs and arms. This is
like a hot flash but I think it is "peripheral neuropathy", it's the
chemo killing nerves. It is nothing like last year, this is much
milder.
My head is clear. I have occasional bouts of grasping for words,
struggling to remember. Compared to others who are "normal", I am
doing fine. I keep a pen and notebook with me and do jot notes
down.
Most days, I don't think of myself as a cancer patient. I am just
someone making their way in life, hanging onto my job, having a few
laughs. Steve talks about being Terminal. Nah. At my age, I will
very likely outlive my peers. They might stroke out, auto crash,
coronary, get shot in the butt by an angry husband who comes upon
them, their ears blocked by thighs.
I'm just running around happily squeaking.
-kh - labrat, the tail up at the end means that things are getting
better.
()-()
\"/(""""}---/
` ^^ ^^
Steve Kramer
It was at this point that I thought I might not laugh at one of your posts.
Thanks for not disappointing me.
: coronary, get shot in the butt by an angry husband who comes upon
: them, their ears blocked by thighs.
:
: I'm just running around happily squeaking.
:
: -kh - labrat, the tail up at the end means that things are getting
: better.
:
: ()-()
: \"/(""""}---/
: ` ^^ ^^
I love the addition to the tail!
Larry Sabo
>Nah. At my age, I will
>very likely outlive my peers. They might stroke out, auto crash,
>coronary, get shot in the butt by an angry husband who comes upon
>them, their ears blocked by thighs.
>
>I'm just running around happily squeaking.
>
>-kh - labrat, the tail up at the end means that things are getting
>better.
>
>()-()
> \"/(""""}---/
> ` ^^ ^^
I gotta tell you, kh, I love your reports; you are truly an
inspiration. Had a good chuckle at the above. Your wit and sense of
huumour are in tact. Good on ya.
Cheers,
Larry
Sue Mullen
kh wrote:
> I'm just running around happily squeaking.
>
> -kh - labrat, the tail up at the end means that things are getting
> better.
>
> ()-()
> \"/(""""}---/
> ` ^^ ^^
So glad things are getting better, now just keep squaking along!!
Kevin is starting Taxotere tomorrow and we have found your reports very
helpful.
Keep the tail up!!
sue
kh
My good news continues.
My weight is over 170. I've seen 172 on the scale a few times. This
is a good-low weight for me. I am concentrating now on building
muscle and stamina. I play with my girlie weights.... Seriously, I
got these weights at the "Five and Below" which is a local emporium
that caters to teen girls, selling $1 lip gloss, iPod cases, purses,
sunglasses, that stuff. The products sold by "He-man Ironworks", I
could not lift. 40 and 50 pound barbells? No way. But I'll build
up, give me another 6 months.
I've been working 10 and 11 hour days. I don't get "leave" but they
let me work the hours ahead and take a holiday using that time. My
holiday? Going to Johns Hopkins, dropping my pants, and getting the
big horse needle, Lupron. Next time, I'll give them a moving target,
I'll drop my pants and suggestively rotate my butt in a circle. Maybe
I'll draw a bulls eye on one cheek, they always ask "which side?"
I'll undulate clockwise, then counter-clockwise. "Take your best
shot."
I'm feeling so good that I'm doing "other duties" at work, the
extremely important job as "assistant back up Coffee table manager".
The tasks include keeping the coffee pots hot and filled, putting out
the sugar and sweetener. Cleaning up the spills, and generally
keeping the table from becoming a mess.
Last week, the man who is the "Senior Coffee table manager" was out on
leave.
OMG! - I could not keep up. Two nights, the burners were left on and
coffee baked into the pots. During the day, the pots ran empty.
Someone locked the cabinet with the Splenda. We ran out of Spenda on
the counter so they started using twice as much sugar. I put packets
in the sugar tray twice a day. A VP spilled coffee all over the
counter trying to get a cup while the drip was still going.
I had no idea how much work there was in keeping hot coffee going for
30 or 40 people.
Last weekend, I made it to another festival fair, this one had home
improvement vendors, barkers hawking windows, lawn services, AC and
heating, kitchens, roofs, siding, and so on. I walked more than I
have in a year but I made it. I had a great time out doors in the
sun. I bought a few small things at the flea market.
Synopsis - Strength, weight, stamina are up. The pain in my shoulders
is gone. The back pain is less but still there when I walk. The
Cytoxan is working. My issues are just normal life, not PCa.
-kh - labrat, assistant coffee manager, and stripper wannabe.
Steve Kramer
I'm feeling so good that I'm doing "other duties" at work, the
extremely important job as "assistant back up Coffee table manager".
==> Where I worked, that was a very dangerous position!
Ralph Laswell
near future. I have a couple of questions regarding your experiences.
Has any of the chemotherapy drugs you have taken resulted in a
resolution of the metastatic lesions? I was encouraged when your psa
levels fell so dramatically, but I was disappointed that they began to
double so quickly after you got off of taxotere and the trial drug. Did
your doctor say anything about that?
I noted that you said it has taken several months to recover from the
side effects of taxotere. I'm an old man, 83, and I wonder if my
routine activities will suffer too much. I like to go to the grocery
store and things like that.
Thanks a million,
Ralph
kh
> I appreciate your postings so much. I am contemplating chemo in the
> near future. I have a couple of questions regarding your experiences.
> Has any of the chemotherapy drugs you have taken resulted in a
> resolution of the metastatic lesions? I was encouraged when your psa
> levels fell so dramatically, but I was disappointed that they began to
> double so quickly after you got off of taxotere and the trial drug. Did
> your doctor say anything about that?
I had periodic bone scans and CAT scans and both showed the tumors
shrinking. The docs say that lack of growth is a win, so this is a
double win.
In addition, my back pain is much reduced. I was taking much more
Percocet and have been very gradually reducing the dose of Oxycodone.
The script reads 5 mg, 1 to 2 tabs every 4 to 6 hours as needed. I am
taking a half tab, 2.5 mg, every 6 hours or 3 X day.
They don't tell you the full scoop. I asked before, during, and after
the treatment and the official party line is, "Every patient is
different; we're hoping for a good result; we don't know how much time
this will buy you."
They know.
With data from hundreds of patients, they know.
Two clues. The "official" stats say that Taxotere buys you a few
months. The PCa was killing me in Feb 2008. At least the pain felt
like it was killing me. Radiation, Taxotere and the CNTO (328) bought
me over a year.
It is now 20 months after the radiation and 18 months from the start
of Taxotere. I got more than the official "few months".
The second clue is that I was griping about how soon and how fast my
PSA was climbing. I said, that I had hoped for 2 years off, I got
less than 6 months. They let slip that they had never seen 2 years.
That suggests that this was a holding skirmish. They never expected a
"cure" or "years".
> I noted that you said it has taken several months to recover from the
> side effects of taxotere. I'm an old man, 83, and I wonder if my
> routine activities will suffer too much. I like to go to the grocery
> store and things like that.
The Taxotere plus the CNTO(328) plus the decadron (24 mg on treatment
day) plus the prednisone knocked me way down.
I'm 62.
Pretreatment: 197 pounds. climb 6 flights of stairs, walk slowly for
a minute and breath normally. Walk 3 miles several times a week. Pick
up 40 pounds with one hand. I'm short in height but was musclebound
with decent cardiovascular reserve.
Posttreatment: 156 pounds. climb 2 flights of stairs and take 5
minutes to recover. Max walking distance 3 blocks. 5 pound hand
weights seem heavy. I was weak and scrawny, I had the cancer patient,
walking skeleton look.
Some of that is the Decadron which cuts the muscle off you.
I saw 170 pounds today. I can handle 3 flights of stairs. My strength
and stamina are gradually returning. As far as anyone can tell, I am
fine. I simply have a 3 block, 3 flights of stairs limit, 5 pounds is
a lot of weight. Don't call on me to move furniture.
Taxotere works. There is a toll but it can be handled. You can stop
when you think it is too much.
They will monitor your blood chemistries and they may stop treatment
before you think it's time.
My ANC (white counts) were too low, for too many blood draws, so they
stopped the treatment at 10 infusions. I can't feel ANC so I felt
like continuing.
The current treatment, oral Cytoxan, is very mild in comparison.
This doesn't tell you how you will respond; I can't provide more
insight. I can only tell you what happened to me and how it felt.
-kh Good Luck to you.
Ralph Laswell
a good perspective for me to consider in the days ahead.
I am anxious to find out how Sue's husband responds to the Taxotere, as
well.
Be of good cheer,
Ralph
Steve Kramer
This doesn't tell you how you will respond; I can't provide more
insight. I can only tell you what happened to me and how it felt.
-- Once again, you have done Ralph and all of us a wonderful service with
this your most important post, IMHO. It has been tremendously informative.
I believe any of us who end up on chemo will suffer equally, else our cancer
would not. But, you are correct that it is unlikely that any of us will
respond to it as you have, physically or as bravely. You are one
remarkable rat.
kh
This is your week 20 update to the oral Cytoxan-chemo adventure.
First the PSA.
Date PSA
1/6/2009 2.4
2/10/2009 4.9
3/10/2009 11.4
4/10/2009 20.8
5/12/2009 45.1
5/26/2009 49
6/16/2009 55
7/14/2009 40.3
8/11/2009 33.6
9/17/2009 31.9 Correction
10/13/2009 40.6 <-----<<<< WTF?
Here's what the Wizard said in email: "Do not want change anything.
Stay on both Cytoxan and Decadron. I will see you in 6 weeks and
repeat labs."
If he's not worried, I'm not worried.
He is encouraging me to see an "Interventional Radiologist", perhaps
have a "vertebroplasty" which is squirting some cement into the
vertebra to strengthen it. This may alleviate my backpain.
I also got the Lupron horse needle in the butt on the 13th. I like to
mouth off to the nurses, mock them to hit the target, moon them. They
always laugh. Next time, I might eat a lot of beans and when they
stick me, give them the "pull my finger".
My weight was 170.0 on the digital scale. I have been exercising
mildly, that's walking short distances, playing with my light sissy-
boy weights.
Here're more numbers.
A1c 6.8
Total Cholesterol 197
Triglycerides 99
HDL 64
LDL 113
VLDL 20
Reds are down a little, like 10% below range. That's the Cytoxan
Chemo.
While on heavy Decadron a few years ago, I clocked hugely high and
weird numbers, like Triglycerides of 800. A1c 11.
This is pretty good in comparison and considering that I am on
Decadron 1.5 mg/day.
They fired me as the assistant coffee counter manager. They moved the
coffee mess to executive row. It's on the other side of the building.
It was on my way to the john. Since I don't walk by it every 45
minutes (when I'm racing to pee), I won't bother making fresh coffee.
I'll get my normal 24 ounces first thing in the morning, then it's
someone else's problem.
I befriended a man and wife at the cancer center. She died last week,
she'd been fighting breast cancer for several years. She was in her
30's and left two young children. I heard stories from them about how
they had to explain why "mommy sleeps all the time" and "mommy can't
play now."
I take 2.5 mg Oxycodone 3X day. She was taking 30 mg at a time.
Summary - strength, stamina, are marginally up. My head is clear and I
am effective at work. Have slightly more feeling and strength in my
little finger of my left hand, the one that took the peripheral
neuropathy hit from the Taxotere. Balls of my feet and toes tingle
slightly. Stomach issues are mild as long as I eat half meals. Back
still hurts. When I gotta pee, I really gotta pee. This seems worse
but I'm not ready for "Mr. Dignity" yet.
-kh Sad Labrat, crying for the kids of that young couple. Her pain
is over.
()-()
\"/(""""}----
` ^^ ^^
Steve Kramer
10/13/2009 40.6 <-----<<<< WTF?
==> I agree. WTF!
Here're more numbers.
Total Cholesterol 197
Triglycerides 99
HDL 64
LDL 113
==> Bettern' mine.
I befriended a man and wife at the cancer center. She died last week,
she'd been fighting breast cancer for several years. She was in her
30's and left two young children. I heard stories from them about how
they had to explain why "mommy sleeps all the time" and "mommy can't
play now." I take 2.5 mg Oxycodone 3X day. She was taking 30 mg at a time.
Sad Labrat, crying for the kids of that young couple. Her pain is over.
==> I'm with you, Rat. I didn't even know the lady and you've choked me
up.
Sue Mullen
Hi Ralph,
First I want to thank KH, aka labrat, for all the great infor he has
posted. I am slowing reading through all his posting from the time he
started taking Taxotere, even though his was in combination with
something else.
I am also anxious to see how Kevin's cancer responds to Taxotere, but it
is too early to know yet. Next wednesday he goes for a blood draw and
thursday goes for his second infusion. He is still working full time and
seems to be doing pretty good. On the 5th day after the first infusion
he came home early not feeling well, but a day of rest and he was back
to work. The only real problems so far is his blood sugar which is
because of the prednisone, but he spoke to the med onc and we will talk
about it on thursday.
I did want to say something about the mets(metastatic lesions) you asked
about. Kevin's doctors, the uro, the rad. onc. and now the med. onc.
have all said it is very unlikely the mets will ever go away completly.
They have also said we are looking for "controll", but there will not be
a remission or cure.
On the other hand take a look at Gourd Dancer who is having clean bone
scans, no mets, 5 years later. From what he has said previously, even
his doctors are surprised.
sue
Sue Mullen
kh wrote:
> This is your week 20 update to the oral Cytoxan-chemo adventure.
>
> First the PSA.
>
> Date PSA
> 1/6/2009 2.4
> 2/10/2009 4.9
> 3/10/2009 11.4
> 4/10/2009 20.8
> 5/12/2009 45.1
> 5/26/2009 49
> 6/16/2009 55
> 7/14/2009 40.3
> 8/11/2009 33.6
> 9/17/2009 31.9 Correction
> 10/13/2009 40.6 <-----<<<< WTF?
WTF indeed!!
My other comment is this isn't a game where you had to beat Kevins last
psa of 37.6.
> Here's what the Wizard said in email: "Do not want change anything.
> Stay on both Cytoxan and Decadron. I will see you in 6 weeks and
> repeat labs."
>
> If he's not worried, I'm not worried.
You have faith in the Wizard, so hang in there!!
> He is encouraging me to see an "Interventional Radiologist", perhaps
> have a "vertebroplasty" which is squirting some cement into the
> vertebra to strengthen it. This may alleviate my backpain.
This sounds like what a couple of my friends did, not for cancer and it
worked very well.
> I befriended a man and wife at the cancer center. She died last week,
> she'd been fighting breast cancer for several years. She was in her
> 30's and left two young children. I heard stories from them about how
> they had to explain why "mommy sleeps all the time" and "mommy can't
> play now."
So sorry about your friend and even sadder with two young children, that
is so hard!!
sue
kh
> ==> I'm with you, Rat.
Update on an Anon. Another Warrior-brother is down on one knee. I
met him at the Cancer Center We were on Taxotere together last
year. We use to "cut up" in the infusion center, the joy-boys. Easy
to be a motor-mouth on 24 mg of Decadron.
This is his recent PSA history:
2/14/2009 20.5
3/5/2009 18.2
4/14/2009 12
5/12/2009 19
6/9/2009 20
7/7/2009 50
7/14/2009 56
8/11/2009 64
9/8/2009 131
10/12/2009 291
He had a good response to the Tax but his health slipped and they took
him off about the same time as me. They tried Ketoconizole previously
and recently Cytoxan. Both knocked him flat on his behind.
He is in good spirits, a fighter, but this doubling time is
terrifying, given that he can't tolerate the chemo. He is on Lupron,
as am I.
The flattening in July-August is probably the short treatment with
Cytoxan.
-kh Labrat worried about a warrior-brother
Steve Kramer
Keep your furry chin up, Rat (do rats have chins?). It is very hard to do
when others about you are in such dire straights as your recent young mother
and this warrior. You must remember that God calls them (or, if you prefer,
their time comes) ahead of yours. They ended up on shorter paths and you
need to take your own.
kh
> Keep your furry chin up, Rat (do rats have chins?). It is very hard to do
> when others about you are in such dire straights as your recent young mother
> and this warrior. You must remember that God calls them (or, if you prefer,
> their time comes) ahead of yours. -
He's been fighting HARD and not just working w/ the Wizard, He does
the herbals, anti-inflammatories, the natural treatments as well.
He's down on one knee but he's still fighting.
-kh Labrat
kh
100 mg Cytoxan - oral chemo
1.5 mg Decadron - reduce inflammation, anti-cancer
30 mg Prevacid - stomach issue from Taxotere and radiation
7.5 mg Oxycodone - back pain
Also on Lupron, every 3 months
Supplements: Calcium + D, Multi Vitamin,
It's fall, no frost yet but the days are shorter. I've been driving
to the office in the dark. Morning was an issue last year when the
radiation and/or the taxotere gave me the most incredible, explosive,
shake the walls, is it elephants trumpeting, diarrhea. That ended
abruptly several months ago and I'm solid.
It's, er, urgent, to be in close proximity of someplace to pee but the
short drive to the office has not been a problem. I've got about an
hour, perhaps two in me. Even on a two hour drive, I have not had to
jump the railing and run for the tree-line.
The back pain comes and goes. If I just sit there, I feel fine.
Standing and walking bring on the pain.
Some days are better than others. What makes the most difference is
getting 8 to 9 hours of sleep. If I can get 9 hours of sleep, the
next day is good, productive, easy, smooth.
I suspect that the Decadron, while a low dose, is giving me a sleeping
disorder. I get up in the middle of the night. Some nights,
Midnight, some nights 3 AM. Some nights I sleep through until
morning. 5 or 6 hours of sleep leave me exhausted the next day.
Weekends are for sleeping and resting. I have enough in me for a half
day of activity but a 3 hour nap in addition to 8 hours at night is
the rule for weekends.
It can vary. 2 hour nap, 9 hours at night. 4 hours during the day, 6
hours that night.
-kh Not much to report this week... I have a job and got paid, that's
something.
Steve Kramer
()-()
\"/(""""}---- �
` ^^ ^^
A "$" would have been funny enough. The cents sign is a stroke of comedic
genius.
kh
This report is more about a warrior-brother than me. Recall we used
to cut up at the infusion center.
He has mets in his spine, 6 lower vertebral bodies, he is going for
palliative radiation, which sometimes slams the PCa to the point that
it does not return to that area.
The last 6 months, he was in a wheel chair but he was still laughing
and smiling at my rat-hat. The ascites in his legs prevented him
from walking, even with meds and therapy. However, when it was his
turn to see the Wizard, he would get his cane and walk in, he wasn't
going to let the PCa break him, not in front of the Wizard.
It's not going to break him. He walked in tall and strong, refused to
use the chair.
My back pain is very slightly worse. It's not bad and not all the
time. It nags at me and I will increase the Oxycodone when I need
it. Not yet.
I am backsliding on my weight. I saw 168.5 on a balance scale and
170.0 on a digital. This is with "heavy" clothes on. I snack as
much as I can.
This morning, I parked my car and noticed a blond wearing a black
outfit and black boots, perfect shape, long legs, beautiful, well
styled hair. Of course, I speed up as fast as my short rat legs could
take me. My little rat paws going a mile a minute, I got a little
closer and O-M-G, she reeked of cigars. The worst, ropiest, gaggingest
cigars you've ever smelled. Knee buckling, choking, cigars.
-kh
()-()
\"/(""""}---- o o 0 O O
` ^^ ^^
Gimme your smoke rings, baby
kh
My back pain is suddenly much worse. I've had a chronic dull pain in
my lower back for the last year. This is different. The pain is
between my shoulder blades. This feels like a knife in my spine and it
hurts when I move. Driving over bumps is painful.
It came on hard in one day and I was barely able to get around. I
increased the Oxycodone from 2.5 mg to 5.0 mg, a full tab.
I'm consulting a radiologist who specializes in treating backs. I had
planned to see him for the lower back pain but this was so sudden and
so bad that I called for an appointment.
Last Wednesday was horrible, then the next day, I felt better, so I
cut the dose of painkiller back. The pain has been up and down since
then. Some days, the pain is crippling, some days, it's not bad.
I've been adjusting the Oxycodone as needed but have not exceeded 5 mg/
6 hours.
The radiologist has scheduled an MRI. I'll take the CD to the Wizard
when I see him at the end of the month.
My guess is that PCa spine mets is the problem and they will use the
Trilogy on it. The conventional wisdom is that you cannot retreat
bone mets with external radiation but I'm guessing that this is far
enough away that they will crank up the Trilogy and have at it.
This is not as painful as the bone mets that I had in Jan/Feb 2008,
just before the Taxotere adventure.
Yesterday was not so bad. Today is a bad day. We'll see what
tomorrow brings.
The business news reports that Dendreon has filed with the FDA to have
Provenge, their PCa vaccine approved. There is hope.
-kh
()-()
\"/(""""}----
` ^^ ^^
Crank it up, beam that PCa!
Steve Kramer
This is your week 23 update to the oral Cytoxan-chemo adventure.
-kh
()-()
\"/(""""}----
` ^^ ^^
==> Bad news, kh, but I'm glad to see your tail is still straight.
Sue Mullen
kh wrote:
> This is your week 23 update to the oral Cytoxan-chemo adventure.
This is not a good report, sorry to hear it!!
Have you called the Wizard to let him know about this change?
Also have you ever considered Zometa? I don't know if it would be
appropriate for you, but Kevin is starting it when he has his next
chemo. Just a non-medical thought.
Good luck to you!!
sue
kh
This is your week 24 update to the oral Cytoxan-chemo adventure.
I'm on a slightly higher dose of Oxycodone. 5.0 mg in the morning and
then 2.5 mg noon and evening. My back does bother me more than a
month ago but it has not worsened in the last couple weeks.
I had the MRI last week. The preliminary word was "no immediate
treatment required'. I have the CD and will take it to the Wizard
along with the comments from the radiologist.
Get this. Other than the back pain, my health continues to improve.
I've been working full days and have started doing long overdue harry-
homeowner work on my place.
I'm back to thinking that I'll beat this. I know that I'm sick and
the S.O.B. is laying for me but on a day-by-day basis, it's like I
have more important things to do than to be a cancer patient.
These things include having a good breakfast, doing my job, having
some laughs, and making each moment count double or triple.
-kh labrat and party animal.
()-()
\"/(""""}----?
` ^^ ^^
tarhoosier7
The moments you share here, with me at least, are worth multiples of
the rest of the moments in my day.
kh
Not much to report this week, which is as good as it gets.
I have a laundry list of minor complaints, which you may as well be
aware of.
I am tired and sleepy. My friend from the cancer center told me that
the oral Cytoxan "wore him out". I have bouts of sleepiness during
the day and crash in the evening. You'd think I was old, sick, on
drugs, or something.
When I have to pee, I really have to pee. I can't pinch it off no
matter how hard I try. I can sleep 6 or 7 hours before getting up to
go, so it's not horrible. I need 9 or 10 hours of sleep every day.
More would be nice.
I can't eat full meals. I max out at a half meal. More than that
and my stomach feels stuffed. Perhaps that's why my weight is still
at just over 170 pounds.
My lower back aches if I walk more than 2 or 3 blocks.
I've increased the Oxycodone to 5.0 mg in the morning but keep it at
2.5 mg noon and evening. I am tolerating the new upper back pain.
I'm guessing that this is a serious problem but maybe the Cytoxan will
keep it at bay. I have been on the Cytoxan for a half year. I have
the MRI CD. I will take the CD to Johns Hopkins and they will tell me
what's what.
I am working full days and have an ever increasing workload. It's
almost strange how well my work is going. I know many, many people who
are un-employed or under-employed.
-kh labrat and some say, workaholic
Steve Kramer
I am working full days and have an ever increasing workload. It's
almost strange how well my work is going. I know many, many people who
are un-employed or under-employed.
-kh labrat and some say, workaholic
==> My father, during what turned out to be his last stay at a hospital,
asked his bosses to bring up charts that hung on the wall at the Homicide
Squad so that he could update them. It was mentioned in all three articles
written about him once he died. Your dedication to your employer is what
your peers, friends, and family will most remember about you - even if you
live to be 100.
kh
This is your week 26 update to the oral Cytoxan-chemo adventure.
The minor complaints continue. My reflexes are dull; tap my knees,
nothing happens. My nails show odd patterns. I have darkened skin
patches. My skin is sloughing off and leaves a ring in the bathtub.
The amount of ear-wax is incredible. These are attributable to the
oral chemo.
Compared to the S.O.B. choking the life out of me or trying to bust my
spine, these side effects are a joke.
I slept 12 hours/day this weekend. It felt great. I'm more like a
hibernating bear than a labrat. I wore a bear hat today to Inova.
Got as many laughs as the rat-hat does at JHU.
Had a consult with the Chief of Radiation Oncology at Inova. She
showed me how to read my MRI. There is tumor activity in the upper
portion of my spine that is treatable by their Trilogy. There is no
immediate need to get on their beam-machine. The Trilogy will
alleviate the upper back pain and very likely allow me to cut back on
the Oxycodone. They cautioned me that the Oxy can cause
constipation. Have not noticed that but if I do, there is Colace.
Inova told me to take the MRI CD, radiologist report, and their
radiation oncologist report to the Wizard and get his assessment.
Inova said that the Wizard at JHU is a International Name, one of the
top docs for PCa.
Heard from the brother-warrior this morning:
"Still having pain requiring dilaudid at night and rarely during
daytime. PSA 300 up a fraction from 294. Hope we both can tweek out
thanksgiving a happy one.
Will update you after tuesday eval. "
This is after his palliative radiation treatment. We corresponded
before his treatment, he asked how effective the radiation was for me.
The FDA will rule on Dendreon's Provenge (anti PCa vaccine) by May 1,
2010. 5 months and counting.
-kh labrat
()-()
\"/(""""}-----
` ^^ ^^