Radiation for bone mets, 1 week update.

After the Planning Session using their GE Lightscan, Monday AM and
clearance to proceed from JHU, I started the first of 14 palliative
radiation sessions on Inova's Trilogy linear accelerator.

I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the
weekend. That kept me mobile and able to work.

The treatments are in the afternoon so I was able to work a 2/3rds day
every day this week.

The treatment, like all external radiation is completely painless.
You not feel a thing as the high energy radiation breaks the cancer's
DNA.

The MRI showed structural changes in the bone. They showed the MRI to
me but I do not have the medical vocabulary to repeat. Essentially,
the PCa is in alternating vertebra. The bones look different, and are
expanding against my spine. Two sections of nerve look "pinched".

It hurts like hell to bend or move. It's not bad if I don't move.

The decadron helps, the percocet really helps. 1 hour after taking
both, I can walk and appear normal.

They are going straight in the front and back with the radiation. On
Thursday, I had severe nausea and heartburn, as Inova cautioned. They
had given me 2 prescription anti-nausea samples to take, if I needed
them. I did. I woke up gagging Thursday night.

The next day, I got a bottle of OTC Zantac-150. They said it should
work as well as the script stuff. It has. I'm taking it 2X a day and
feel little discomfort.

I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac
and cheese, chicken noodle soup, I'm taking a stool softener with
each meal, OTC again.

Inova says that my bones are at risk to breakage and to go easy. Step
carefully. There have been incidents where a misstep, walking too
hard, has shattered a vertebra. I got the message, no break dancing
for me.

Inova says that after the radiation, my bones will strengthen, the
pain will abate, and in many cases, the PCa does not return to
irradiated bones.

JHU has me on fosamax, I take OTC calcium supplements w/ D 2X day.

JHU is in the loop. They will put me in the taxotere IL-6 trial
after the radiation. I'm guessing some time in April. I'm hoping
that the taxotere and IL-6 antigen will slam the PCa, hold it off for
a long, long time.

This was a major set back for me but I could see my PSA climbing,
doubling time of 1 month.

JHU and Inova both mentioned that taxotere often works "better" with
patients with my PSADT profile. I guess it's because it's more like a
normal cancer.

-KH

It sounds like you and your doctors are waging a good battle against
this beast. Having an identifiable and somewhat quantified target has
obvious pros (e.g., takes a lot of the guesswork out, provides serious
motivation) and cons (obvious from your post). Good on ya, and good luck.

I.P.

On Mar 2, 3:49 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:
> It sounds like you and your doctors are waging a good battle against
> this beast. Having an identifiable and somewhat quantified target has
> obvious pros (e.g., takes a lot of the guesswork out, provides serious
> motivation) and cons (obvious from your post). Good on ya, and good luck.
>
> I.P.

Thanks.

These are top guys backed by teams that know their job.

I should have mentioned my gang tattoos. Last Monday they put
alignment marks, just dots on my hide. Before treatment, the techs
add circles and cross-hairs using magic markers for their laser
targeting.

Every day, I try to come up with a new line.

"MS-13? I'm in another gang."

"Hey, that's a butterfly, I wanted you to draw a manly dragon."

"What, what? Property Item 353 of Inova."

"If found, drop in any mailbox."

"marked down - $15.95"

"USDA choice - Porterhouse!"

I ain't going down easy and I'm not letting this setback bother me.

It's really hard to get off the treatment table but I tell the techs,
any day now, I'll do a back flip and an Olympic gymnastic dismount.
Not today but soon.

-KH

kh wrote:
> "USDA choice - Porterhouse!"
>
> I ain't going down easy and I'm not letting this setback bother me.

kh, from your very first postings it was obvious that you were a
fighter and were not going to do down easy. Keep the bastard at bay and,
as someone posted recently, delay delay delay. Every time you go online
you can find new stuff happening, no cures yet, but ways to fight the
SE's from the cancer and from the ADT and other drugs. The numbers of
trials are encouraging. One fine morning you and I will go to this
newsgroup and there it will be, the magic bullet at $1.95 per month,
already on the shelf as an over the counter something or other!!! Hey,
as long as I am dreaming, I am going to dream big. This magic drug will
bring Willie back to life too, reduce weight, and make us all look,
act, and feel 20 years younger!!!!

Until then, keep up the fight and I'll do my best to do the same. There
sure are a lot of us in this boat together. We may not be winning the
overall war yet, but we are winning some of the battles. That's the
delay delay delay thing. Keep up the fight, you are in my prayers.

On Mar 2, 6:58 pm, "Bob C." <B...@Bob.org> wrote:
> The numbers of
> trials are encouraging. One fine morning you and I will go to this
> newsgroup and there it will be, the magic bullet at $1.95 per month,
> already on the shelf as an over the counter something or other!!! Hey,
> as long as I am dreaming, I am going to dream big. This magic drug will
> bring Willie back to life too, reduce weight, and make us all look,
> act, and feel 20 years younger!!!!

That is not that far fetched. It won't cheap at first but that is
one reason that I'm watching my health, keeping my job, and paying for
medical insurance. It hurts to get up and walk (didn't hurt a few
weeks ago but it hurts now.) I still walk as much as possible.

I could slack off my work hours. I'm not. In fact, I lost only 1/3
time each day, the treatment week at the end of Feb. If my back
allows, I hope to increase my hours to normal for March.

Friends have suggested starting the paperwork for "social security
disability." I have no idea what that means but I will look into
it.

They say the paperwork is miserable but if I'm doing it now, and it's
simply setting it up now, I can do it.

I will file forms to have access to more financial resources to toss
against the problem when I need it. Add government insurance to
maintaining my private insurance, my savings.

The magic bullet might be $50K (see reports on PROVENGE and GVAX on
the investment sites) but if insurance covers treatment with a $20 co-
pay, WE GOT IT. Close enough to $1.95, especially given inflation.
No kidding, I saw someone pay $20 plus tip for a medium pizza.

> Until then, keep up the fight and I'll do my best to do the same. There
> sure are a lot of us in this boat together.

WE are going to beat this and we are going to whoop it up.

I managed an invite to a party last week and managed to snare another
in April. I'll be helping cook for the April one. The theme is
"Thanksgiving in Spring". Whacky huh?

You know how it's a bear to get everyone together for Thanksgiving in
November? No one really wants another invite for turkey. Some people
drive hundreds of miles to 2 or 3 relatives homes on Thursday, and to
eat yet more turkey. They're sick of Turkey. It's everywhere.

Why? Why do it like that?

We picked a day in April. I'm helping host a traditional
Thanksgiving dinner. Big ol' roast turkey. Pies, pies, pies (and no
fighting for the ingredients at the Safeway). Spring berry pie.
Banana cream. Apple. Coconut custard.

Easy driving, no battling traffic or icy roads. No one under
pressure for Christmas shopping. No black-Friday hype. Swing on by
on Saturday afternoon.

We already have request from one of the guests for the turkey bones
for soup. Sure.

It'll be a small group so we'll have a bunch of those one-way plastic
containers for leftovers for them. I'm guessing a couple pounds for
each, turkey, potatoes, green beans, oyster stuffing, half a pie or a
whole one?

Wine will flow like water. Local whiskey. I'll spike my pomegranate,
blueberry, ginger, green tea punch. Twist 'o fresh mint.

I'll be starting the first chemo infusion about then, so lets rock 'n
roll.

-kh good times

"kh" <tchtic@yahoo.com> wrote in message
news:d6314249-c6fb-488a-80da-c9ad7fbb79e3@13g2000hsb.googlegroups.com...
> On Mar 2, 6:58 pm, "Bob C." <B...@Bob.org> wrote:
> > The numbers of
> > trials are encouraging. One fine morning you and I will go to this
> > newsgroup and there it will be, the magic bullet at $1.95 per month,
> > already on the shelf as an over the counter something or other!!! Hey,
> > as long as I am dreaming, I am going to dream big. This magic drug will
> > bring Willie back to life too, reduce weight, and make us all look,
> > act, and feel 20 years younger!!!!
>
> That is not that far fetched. It won't cheap at first but that is
> one reason that I'm watching my health, keeping my job, and paying for
> medical insurance. It hurts to get up and walk (didn't hurt a few
> weeks ago but it hurts now.) I still walk as much as possible.
>
> I could slack off my work hours. I'm not. In fact, I lost only 1/3
> time each day, the treatment week at the end of Feb. If my back
> allows, I hope to increase my hours to normal for March.
>
> Friends have suggested starting the paperwork for "social security
> disability." I have no idea what that means but I will look into
> it.
>
> They say the paperwork is miserable but if I'm doing it now, and it's
> simply setting it up now, I can do it.
>
> I will file forms to have access to more financial resources to toss
> against the problem when I need it. Add government insurance to
> maintaining my private insurance, my savings.
>
> The magic bullet might be $50K (see reports on PROVENGE and GVAX on
> the investment sites) but if insurance covers treatment with a $20 co-
> pay, WE GOT IT. Close enough to $1.95, especially given inflation.
> No kidding, I saw someone pay $20 plus tip for a medium pizza.
>
> > Until then, keep up the fight and I'll do my best to do the same. There
> > sure are a lot of us in this boat together.
>
> WE are going to beat this and we are going to whoop it up.
>
> I managed an invite to a party last week and managed to snare another
> in April. I'll be helping cook for the April one. The theme is
> "Thanksgiving in Spring". Whacky huh?
>
> You know how it's a bear to get everyone together for Thanksgiving in
> November? No one really wants another invite for turkey. Some people
> drive hundreds of miles to 2 or 3 relatives homes on Thursday, and to
> eat yet more turkey. They're sick of Turkey. It's everywhere.
>
> Why? Why do it like that?
>
> We picked a day in April. I'm helping host a traditional
> Thanksgiving dinner. Big ol' roast turkey. Pies, pies, pies (and no
> fighting for the ingredients at the Safeway). Spring berry pie.
> Banana cream. Apple. Coconut custard.
>
> Easy driving, no battling traffic or icy roads. No one under
> pressure for Christmas shopping. No black-Friday hype. Swing on by
> on Saturday afternoon.
>
> We already have request from one of the guests for the turkey bones
> for soup. Sure.
>
> It'll be a small group so we'll have a bunch of those one-way plastic
> containers for leftovers for them. I'm guessing a couple pounds for
> each, turkey, potatoes, green beans, oyster stuffing, half a pie or a
> whole one?
>
> Wine will flow like water. Local whiskey. I'll spike my pomegranate,
> blueberry, ginger, green tea punch. Twist 'o fresh mint.
>
> I'll be starting the first chemo infusion about then, so lets rock 'n
> roll.
>
> -kh good times



I LIKE you spirit, man.
You must come from hardy, pioneering stock.
Keep the chin up and defend at all costs. :-D
Take care.
Regards.

Bodie. (will light a candle in chapel for the group)


--
"Certainly there is no hunting like the hunting of man and those who have
hunted armed men long enough and liked it, never really care for anything
else thereafter. You will meet them doing various things with resolve, but
their interest rarely holds because after the other thing ordinary life is
as flat as the taste of wine when the taste buds have been burned off your
tongue."
Hemingway.

On Mar 2, 6:35 pm, kh <tch...@yahoo.com> wrote:
> ...
> This was a major set back for me but I could see my PSA
> climbing, doubling time of 1 month.
>
> JHU and Inova both mentioned that taxotere often works "better"
> with patients with my PSADT profile. I guess it's because it's
> more like a normal cancer.

kh,

It is my understanding that taxotere, like most other
chemotherapeutic agents, attacks cells that are dividing. That's
why it can make patients hair fall out and cause stomach upset -
because the hair follicles and the stomach lining cells are
rapidly dividing. When given in large doses, it's often given
with other drugs to mitigate the nausea side effects. Any hair
loss will grow back, and any nausea should clear up at the end of
treatment.

If your cancer is growing fast, as indicated by your rapid
doubling time, that may mean that the cancer cells are dividing
rapidly. In that case, taxotere may do more good for you than it
would for a patient with a slow growing cancer.

Apparently, prostate cancer cells will eventually acquire an
immunity to chemotherapy. So, as with hormone therapy, it works
for a while, then becomes less effective in future treatments.
But how long it works is different for different men and there is
a possibility that you'll be one of the men who benefits a great
deal from it.

Here's hoping it well be really effective.

There are other trials at Hopkins, including one for Revlimid, an
anti-angiogenesis drug that is showing great promise. I'm hoping
that, if and when the taxotere stops working, you'll be able to
try some other drugs that will keep things going for you.

Best of luck.

Alan

"kh" <tchtic@yahoo.com> wrote in message
news:f9dca254-651b-4534-bc63-a15238ef79a1@h11g2000prf.googlegroups.com...

> I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the
> weekend. That kept me mobile and able to work.

<< Great descriptions redacted >>


Are you able to do your programming from home?

On Sun, 2 Mar 2008 10:35:04 -0800 (PST), kh <tchtic@yahoo.com> wrote:

>After the Planning Session using their GE Lightscan, Monday AM and
>clearance to proceed from JHU, I started the first of 14 palliative
>radiation sessions on Inova's Trilogy linear accelerator.
>
>I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the
>weekend. / snip snip...
>It hurts like hell to bend or move. It's not bad if I don't move./ big snip

Hi kh
Replying also to your post for me in the 'Nestin' thread.

As I read through the posts over time I am struck by two aspects of
this group. One is that I see upbeat help and support coming from
familiar names; and it is only over time that, squeezed out of their
posts piece by piece, I am able to realise the extent of their own
suffering which so well qualifies them to come forward with their
advice. The other aspect is no matter what their experiences, their
mood music is always onwards and upwards!

You're in that pretty unique band, kh. You are as you know, my old
mate, a food nut. The pros can stuff you with ADT this and that, about
seven and counting, any kind of radiation they thought up yesterday
and will try tomorrow, bottles of this and a canister or two of that.
Your reaction? "I've tipped my diet toward softer foods, oatmeal,
milk, bananas, mac and cheese, chicken noodle soup..." I was
surprised kh you also listed a stool softener with each meal; well
what a softie you are! :

Oh, you nearly forgot, a PCa tumor choking off the bloodflow from your
heart to your lungs close to killing you, and oh good, some exotic,
radiation (that I've never heard of) with crippling side effects - but
going very well now, apart from, "Inova says that my bones are at risk
to breakage and to go easy ".

So what? Breaking bones won't stop you getting to the fridge for (if I
may quote your earlier recipes) blueberry, pomegranate and grape
juice, with a side glass of green tea with 'a couple of slivers of
fresh ginger'. And shaken not stirred please, with any of that
tarragon or tumeric stuff.

kh, no mere Pca troglodytes are gonna get you. You'll still be there,
having a good stuff of, "...berry pie, made with blueberries,
raspberries, strawberries, etc. with vanilla ice cream.." the day
your doc strides in with the magic, and blasts the beast into
oblivion.

Towards that day I'm gonna buy a hat so's I can take if off to you.










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

On Mar 7, 6:34 pm, Mik...@anon.co.uk wrote:
> ...
> Hi kh
> ...
> Towards that day I'm gonna buy a hat so's I can take if off to you.
> ...

Me too. I have some hats already and I'm going to put each one on
today and take it off to you.

> MikeHi

And to you Mike. That was a great posting.

Alan

On Mar 3, 4:31 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:

> Are you able to do your programming from home?

Two of my bosses have given me small assignments that I can work on at
home. Mostly though, I'm just taking the reduced income. I don't
have the stamina to do more.

After talking to Inova on Monday, WE, the doc and I, decided to taper
down on the drugs.

I am really eager to get off the decadron. It helped, I needed it but
it causes muscle loss and physical wasting. This week, I was
breaking the 4 mg pills in half, taking 2 mg 2X a day.

I'm easing off the percocet. The back pain is still pretty bad when I
get up in the morning. It's a struggle to make that first morning
tinkle.

I'm taking 2.5 mg of percocet (a 5 mg broken in half) at each meal.

I chase that with stool softener, colace I think, as percocet will
stop you up.

My other big addiction is Zantac-150 OTC. Inova's Trilogy has given
me a sunburn on the inside, acid reflux, heartburn, that comes with
this territory.

I am losing about a pound a day. I don't know if it's the radiation,
the drugs, or just feeling too bad to eat much but my weight is down 7
pounds from the start of treatment. I've developed a distended belly
so my pants tend to fall down when I walk.

Inova has treated me 10 times with their Trilogy. During the day,
the pain is much reduced and I am more mobile. The improvement this
week was less than last. The acid reflux and heart burn are worse
but tolerable.

I'm eating much smaller meals but it's almost a continuous feeding.
I'm eating good stuff too. Sausage, fish, homemade soups, fruit, soft-
cooked vegetables, butter-scrambled eggs, cheeses.

On my way back from the last zap of the week, I stopped at the 7-11
and scored a pint of Haagan-Dazs. I'll have two big scoops of ice
cream mixed with milk later tonight.

I'll make my ginger, green tea, blueberry, pomegranate drink in a few
minutes. I brew up a quart at a time and keep it in the fridge.

-kh

Other than the facts, it sounds like a great life! :-)

"kh" <tchtic@yahoo.com> wrote in message
news:c05f2be1-47ce-443c-b225-5b989fb39174@13g2000hsb.googlegroups.com...
> On Mar 3, 4:31 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:
>
>> Are you able to do your programming from home?
>
> Two of my bosses have given me small assignments that I can work on at
> home. Mostly though, I'm just taking the reduced income. I don't
> have the stamina to do more.
>
> After talking to Inova on Monday, WE, the doc and I, decided to taper
> down on the drugs.
>
> I am really eager to get off the decadron. It helped, I needed it but
> it causes muscle loss and physical wasting. This week, I was
> breaking the 4 mg pills in half, taking 2 mg 2X a day.
>
> I'm easing off the percocet. The back pain is still pretty bad when I
> get up in the morning. It's a struggle to make that first morning
> tinkle.
>
> I'm taking 2.5 mg of percocet (a 5 mg broken in half) at each meal.
>
> I chase that with stool softener, colace I think, as percocet will
> stop you up.
>
> My other big addiction is Zantac-150 OTC. Inova's Trilogy has given
> me a sunburn on the inside, acid reflux, heartburn, that comes with
> this territory.
>
> I am losing about a pound a day. I don't know if it's the radiation,
> the drugs, or just feeling too bad to eat much but my weight is down 7
> pounds from the start of treatment. I've developed a distended belly
> so my pants tend to fall down when I walk.
>
> Inova has treated me 10 times with their Trilogy. During the day,
> the pain is much reduced and I am more mobile. The improvement this
> week was less than last. The acid reflux and heart burn are worse
> but tolerable.
>
> I'm eating much smaller meals but it's almost a continuous feeding.
> I'm eating good stuff too. Sausage, fish, homemade soups, fruit, soft-
> cooked vegetables, butter-scrambled eggs, cheeses.
>
> On my way back from the last zap of the week, I stopped at the 7-11
> and scored a pint of Haagan-Dazs. I'll have two big scoops of ice
> cream mixed with milk later tonight.
>
> I'll make my ginger, green tea, blueberry, pomegranate drink in a few
> minutes. I brew up a quart at a time and keep it in the fridge.
>
> -kh
>
>

On Mar 2, 1:35 pm, kh <tch...@yahoo.com> wrote:
> After the Planning Session using their GE Lightscan, Monday AM and
> clearance to proceed from JHU, I started the first of 14 palliative
> radiation sessions on Inova's Trilogy linear accelerator.
>
> I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the
> weekend. That kept me mobile and able to work.
>
> The treatments are in the afternoon so I was able to work a 2/3rds day
> every day this week.
>
> The treatment, like all external radiation is completely painless.
> You not feel a thing as the high energy radiation breaks the cancer's
> DNA.
>
> The MRI showed structural changes in the bone. They showed the MRI to
> me but I do not have the medical vocabulary to repeat. Essentially,
> the PCa is in alternating vertebra. The bones look different, and are
> expanding against my spine. Two sections of nerve look "pinched".
>
> It hurts like hell to bend or move. It's not bad if I don't move.
>
> The decadron helps, the percocet really helps. 1 hour after taking
> both, I can walk and appear normal.
>
> They are going straight in the front and back with the radiation. On
> Thursday, I had severe nausea and heartburn, as Inova cautioned. They
> had given me 2 prescription anti-nausea samples to take, if I needed
> them. I did. I woke up gagging Thursday night.
>
> The next day, I got a bottle of OTC Zantac-150. They said it should
> work as well as the script stuff. It has. I'm taking it 2X a day and
> feel little discomfort.
>
> I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac
> and cheese, chicken noodle soup, I'm taking a stool softener with
> each meal, OTC again.
>
> Inova says that my bones are at risk to breakage and to go easy. Step
> carefully. There have been incidents where a misstep, walking too
> hard, has shattered a vertebra. I got the message, no break dancing
> for me.
>
> Inova says that after the radiation, my bones will strengthen, the
> pain will abate, and in many cases, the PCa does not return to
> irradiated bones.
>
> JHU has me on fosamax, I take OTC calcium supplements w/ D 2X day.
>
> JHU is in the loop. They will put me in the taxotere IL-6 trial
> after the radiation. I'm guessing some time in April. I'm hoping
> that the taxotere and IL-6 antigen will slam the PCa, hold it off for
> a long, long time.
>
> This was a major set back for me but I could see my PSA climbing,
> doubling time of 1 month.
>
> JHU and Inova both mentioned that taxotere often works "better" with
> patients with my PSADT profile. I guess it's because it's more like a
> normal cancer.
>
> -KH

I am wondering why you are on Zometa infusions instead of Fosamax -
the recent studies by Saad indicate that it is beneficial against bone
mets.

Vitamin D3 at 2000 IU helps get the calcium to the bones.

Why were you not put on Taxotere when the bone mets started?

Your doctors do not seem to be very proactive - is that your choice?

Lud

kh wrote:
>
>> I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac
>> and cheese, chicken noodle soup, I'm taking a stool softener with
>> each meal, OTC again.

I'd add -- gradually -- a LOT more fiber, both soluble and unsoluble.
Mac&cheese would stop up a 10-year-old without significant fiber with
it. Metamucil (I mix it with OJ or grapefruit juice), Bran Buds cereal
(great toasty flavor), more oatmeal, etc. Any cereal or bread with less
than 5 grams of fiber per serving may as well be white bread.

Have you added a memory foam topper to your mattress? Consumer Reports
rated Walmart's $50 topper tops, over toppers costing many times as
much. I bought one, liked it so much I added a second one (they're 1.5"
thick). They reduce pressure spots significantly.

I.P.

I've completed the 14 day treatment protocol on Inova's Trilogy.

My initial sense was that the improvement this week was much less than
last. Not true.

Last week, I was taking twice to three times the percocet as well as
decadron (a big bang of a steroid, it reduces the inflammation that
presses on the spinal nerves).

Last week, I was crawling to the head in the morning. It hurt too much
to straighten up and walk upright until the morning percocet kicked
in.

This week, I could pull myself up and walk. I am stiff and my legs
are weak but the knife in my back wasn't there. I still fear the
knife and get up gingerly,

"OK, I'm up. Now I'm walking. OK. I can do this."

After weeks of someone twisting a knife in my spine, it's a surprise
when it's not there.

I'm down to 2.5 mg percocet and 200 mg ibuprofen in the morning and
again in the evening. I stopped the decadron last Friday. I'm still
stiff and if I bend wrong, there is discomfort but not excruciating
pain. This is a big improvement.

The other improvement is that my head is clearer and I've been able to
do more work this week than last.

The one negative is that even on a Zantac-150 twice a day, chased with
a baking soda drink, and slamming down the Gaviscon, I have heartburn
and acid reflux to beat the band. It is worse this week than last as
the radiation has tormented my poor stomach.

Inova says that the heartburn will fade over the next week and my back
will continue to improve over the next month. Full strength won't
return for 2 months, so no full contact sports.

I'm sleeping about 10 hours a day. The radiation causes fatigue. I
thought I was just doped into a stupor by the percocet. Inova says
the fatigue will fade over several weeks.

Thinking back, the bone mets gave about 3 months warning. My back
felt stiff and there was vague back pain but not immediately in the
spine. It felt like it was in the back muscles. It wasn't until
about a month ago that the dull, muscle ache, turned into a knife in
my spine.

In late February, I suddenly had several incidents where I could not
stand up. It happened that fast.

My January PSA was 21. Given the 30 day doubling time, I'd estimate
my PSA was 40-80 when the bone mets became a crisis in February.

This Monday, my PSA came in at 12.8, whacked down by the Trilogy.

-kh The adventure continues.

All good news, kh! Should be able to enjoy the spring at this rate.


"kh" <tchtic@yahoo.com> wrote in message
news:bec61ab3-ae61-4dc7-9c69-b25feea6c0ab@13g2000hsb.googlegroups.com...
> I've completed the 14 day treatment protocol on Inova's Trilogy.
>
> My initial sense was that the improvement this week was much less than
> last. Not true.
>
> Last week, I was taking twice to three times the percocet as well as
> decadron (a big bang of a steroid, it reduces the inflammation that
> presses on the spinal nerves).
>
> Last week, I was crawling to the head in the morning. It hurt too much
> to straighten up and walk upright until the morning percocet kicked
> in.
>
> This week, I could pull myself up and walk. I am stiff and my legs
> are weak but the knife in my back wasn't there. I still fear the
> knife and get up gingerly,
>
> "OK, I'm up. Now I'm walking. OK. I can do this."
>
> After weeks of someone twisting a knife in my spine, it's a surprise
> when it's not there.
>
> I'm down to 2.5 mg percocet and 200 mg ibuprofen in the morning and
> again in the evening. I stopped the decadron last Friday. I'm still
> stiff and if I bend wrong, there is discomfort but not excruciating
> pain. This is a big improvement.
>
> The other improvement is that my head is clearer and I've been able to
> do more work this week than last.
>
> The one negative is that even on a Zantac-150 twice a day, chased with
> a baking soda drink, and slamming down the Gaviscon, I have heartburn
> and acid reflux to beat the band. It is worse this week than last as
> the radiation has tormented my poor stomach.
>
> Inova says that the heartburn will fade over the next week and my back
> will continue to improve over the next month. Full strength won't
> return for 2 months, so no full contact sports.
>
> I'm sleeping about 10 hours a day. The radiation causes fatigue. I
> thought I was just doped into a stupor by the percocet. Inova says
> the fatigue will fade over several weeks.
>
> Thinking back, the bone mets gave about 3 months warning. My back
> felt stiff and there was vague back pain but not immediately in the
> spine. It felt like it was in the back muscles. It wasn't until
> about a month ago that the dull, muscle ache, turned into a knife in
> my spine.
>
> In late February, I suddenly had several incidents where I could not
> stand up. It happened that fast.
>
> My January PSA was 21. Given the 30 day doubling time, I'd estimate
> my PSA was 40-80 when the bone mets became a crisis in February.
>
> This Monday, my PSA came in at 12.8, whacked down by the Trilogy.
>
> -kh The adventure continues.

On Mar 14, 3:45 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:
> All good news, kh! Should be able to enjoy the spring at this rate.
>

I'm already enjoying life.

Week 1, I could not make it to the bathroom in the morning. Week 2, I
made it by crawling or wincing in pain. Week 3, I was walking
gingerly but I made it.

I've finished off one pint of Haagen-Dazs and have another in the
freezer. I'm putting a big scoop in my morning coffee along with 1/3
whole milk. I haven't decided whether to have sausage and eggs here
or hit the breakfast bar at work.

Either way, I'm going easy on the sausage and extra on the scrambled
eggs.

Here's something I don't understand. In the last month, willie has
been stirring. Nothing big has come up but there are definitely
feelings. I've been on Lupron for a year.

Is that a sign of spring?

-kh "or maybe I've been reading too much New York political news."

On Mar 7, 1:34 pm, Mik...@anon.co.uk wrote:

> As I read through the posts over time I am struck by two aspects of
> this group. One is that I see upbeat help and support coming from
> familiar names; and it is only over time that, squeezed out of their
> posts piece by piece, I am able to realise the extent of their own
> suffering which so well qualifies them to come forward with their
> advice. The other aspect is no matter what their experiences, their
> mood music is always onwards and upwards!

Mike,

WE are all going to make it. I've had two close calls, but with
several months warning.

Each time it started with discomfort when my PSA rose above 10 and
over a couple months turned into a medical crisis.

Once they saw the face of the beast, the docs beat the thing back.

I figure, I know what to do. Keep monitoring my PSA and notice if
anything feels "wrong" or "bad".

I'll keep dreaming Bob C.'s dream for the silver bullet cure. It's
not far-fetched. If it's not PROVENGE, it might be GVAX, if not that,
then the radioactive Gold Nanoparticles might do it. Maybe GVAX will
work in 1 case in 5, maybe that 1 would be me.

Something will come along. We just gotta hang on. While we're
waiting, I'm having a grand old time.

A few years ago, I was in a dead-end job working for corporate
idiots. I managed to find a better job and even though it's shaky
(the company has major cash flow issues but who doesn't have revenue
problems these days) the work is a real challenge and draws on my
academics, experience, and my hobbies. I love it.

My bosses are piling on the work. There's nothing like good,
challenging work to take your mind off personal medical issues.

This job could end at any time, like I said, what company isn't in
trouble, but for now, the work is good and my bosses appreciate what
I've been able to do.

I'm also helping friends set up their home networks. This is fun
too. Kinda like a barn-raising, work a little, have some laughs, make
it a party.

-kh "I'm in it for the long haul."

On Mar 8, 9:36 pm, Lud <Ludwi...@gmail.com> wrote:

> I am wondering why you are on Zometa infusions instead of Fosamax -
> the recent studies by Saad indicate that it is beneficial against bone
> mets.
>
> Vitamin D3 at 2000 IU helps get the calcium to the bones.
>
> Why were you not put on Taxotere when the bone mets started?
>
> Your doctors do not seem to be very proactive - is that your choice?

The reason is that we were not certain it was bone mets until the MRI
in February. At that time, it was too late to start the taxotere so
Inova put me on their Trilogy to whack the cancer.

I've been on Fosamax as a precaution for 6 months.

Now that we have some breathing room, we'll start the taxotere IL-6
antigen trial, probably next month.

-kh

"kh" <tchtic@yahoo.com> wrote in message
news:4eeab9f0-6f9f-4548-ae50-a3ea1aeba1b9@u72g2000hsf.googlegroups.com...

> Is that a sign of spring?

Probably the Lupron isn't working on the testosterone anymore. I forget,
did you have your T tested?

On Mar 14, 11:04 am, kh <tch...@yahoo.com> wrote:
> ...
> I'll keep dreaming Bob C.'s dream for the silver bullet cure.
> It's not far-fetched. If it's not PROVENGE, it might be GVAX,
> if not that, then the radioactive Gold Nanoparticles might do
> it. Maybe GVAX will work in 1 case in 5, maybe that 1 would
> be me.

As a completely incurable optimist, I'd be tempted in your shoes
to eat handfuls of pomegranate extract pills and, now with
today's news of how our mouse cousins are doing, gobs of
genistein. Tofu has always been a favorite of mine anyway.

> Something will come along. We just gotta hang on. While
> we're waiting, I'm having a grand old time.

Possibly not the least of the things you're doing is making
postings to this group. We're all learning a lot from them.

Thanks.

Alan

Thanks kh for the heads up on your early warning signs that were
missed.

I've been battling stomach acidity for 2 years. I also found Zantac
inadequate - then went to Nexiun 20, later to Nexium 40 and now I am
on 2 Prevacid a day - the Nexium 40 worked well but my doctor felt
that the Prevacid was better for me - both did the job. I still need
1,500 mg calcium supplementation and I am taking 5,000 IU vitamin D3.

Wish you success in whacking out the cancer bugs.

Lud
~~~~
On Mar 13, 9:50 pm, kh <tch...@yahoo.com> wrote:
.....
>
> The one negative is that even on a Zantac-150 twice a day, chased with
> a baking soda drink, and slamming down the Gaviscon, I have heartburn
> and acid reflux to beat the band. It is worse this week than last as
> the radiation has tormented my poor stomach.
>
> Inova says that the heartburn will fade over the next week and my back
> will continue to improve over the next month. Full strength won't
> return for 2 months, so no full contact sports.
>
......
>
> Thinking back, the bone mets gave about 3 months warning. My back
> felt stiff and there was vague back pain but not immediately in the
> spine. It felt like it was in the back muscles. It wasn't until
> about a month ago that the dull, muscle ache, turned into a knife in
> my spine.
>
> In late February, I suddenly had several incidents where I could not
> stand up. It happened that fast.
>
> My January PSA was 21. Given the 30 day doubling time, I'd estimate
> my PSA was 40-80 when the bone mets became a crisis in February.
>
> This Monday, my PSA came in at 12.8, whacked down by the Trilogy.
>
> -kh The adventure continues.

Just had an appointment with an arthritis doctor this week and a long
discussion on bisphosphonates. Interesting notes from this meeting:

1- larger and less frequent doses are more effective - monthly larger
dose is more effective than weekly or daily. Reclast 5 mg once a year
infusion is more effective than the others.

2- drug such as Zoledronic acid (Zometa & Reclast) is cleared out of
our body in 7 to 10 days - a small amount remains in the bones a long
time.

3- he felt that bone markers CTX and BSAP are not good indicators of
drugs effectiveness. My endocrinologist disagrees - I believe she is
right.

4- Bisphosphonates are effective against bone fractures even though
BMD test does not indicate any increase in bone density.

You might look into Zometa instead of Fosamax as there are studies by
Saad that indicate it works at preventing bone mets.

Lud
~~~~~~~
On Mar 14, 7:11 am, kh <tch...@yahoo.com> wrote:
> On Mar 8, 9:36 pm, Lud <Ludwi...@gmail.com> wrote:
>
> > I am wondering why you are on Zometa infusions instead of Fosamax -
> > the recent studies by Saad indicate that it is beneficial against bone
> > mets.
>
> > Vitamin D3 at 2000 IU helps get the calcium to the bones.
>
> > Why were you not put on Taxotere when the bone mets started?
>
> > Your doctors do not seem to be very proactive - is that your choice?
>
> The reason is that we were not certain it was bone mets until the MRI
> in February. At that time, it was too late to start the taxotere so
> Inova put me on their Trilogy to whack the cancer.
>
> I've been on Fosamax as a precaution for 6 months.
>
> Now that we have some breathing room, we'll start the taxotere IL-6
> antigen trial, probably next month.
>
> -kh

On Mar 14, 1:27 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:

> Probably the Lupron isn't working on the testosterone anymore. I forget,
> did you have your T tested?

Not yet.

I'm 1 week post treatment, radiation to mets in the spine. The
heartburn and acid reflux are better but still there. I'm still
taking a Zantac-150 in the morning and evening. Still eating
gaviscon, 3 or 4 a day.

My back is better. I'm off the decadron but take a half a 5 mg
percocet in the morning and evening. If I'm just sitting. I feel
fine.

Walking and getting up require effort and there are geezer noises,
"OOF!" and grunting. I've been able to make the head in the morning
w/o leaks for 3 weeks.

My weight is way down. I saw 174 on the scale the other day. I
started this at about 185 a month ago. I eat half portions and feel
stuffed.

Food is gradually starting to taste good again. During the palliative
radiation treatment nothing tasted right. I don't know if it was the
acid reflux or some bizarre side effect of the meds but salty food
burned my tongue, sweet was too sweet. Things either tasted bad or
had no taste at all.

I was living on vanilla milk shakes, Campbells beef noodle soup,
cereal with cream, fruit, banana's, grapes, tomatoes, scrambled eggs.
Tuna and mayo on white bread. A baked potato with a lot of butter was
OK. I ate almost no meat, simply could not choke it down. I had one
Hebrew National hot dog a week. I usually love those things.

Today, for the first time, I can think about food.

My strength and stamina are returning slowly.

Good news, today is party day, a shindig at a fancy waterfront
estate.

Looks like it takes about week after radiation to hit the upswing.
I'm ready to rock 'n roll.

-kh thinking about fried shrimp, steak, chocolate cake with that dark
frosting.

On Mar 22, 7:09*am, kh <tch...@yahoo.com> wrote:

> I was living on vanilla milk shakes, Campbells beef noodle soup,
> cereal with cream, fruit, banana's, grapes, tomatoes, scrambled eggs.
> Tuna and mayo on white bread. *A baked potato with a lot of butter was
> OK. *I ate almost no meat, simply could not choke it down. *I had one
> Hebrew National hot dog a week. I usually love those things.
>
>
> -kh *thinking about fried shrimp, steak, chocolate cake with that dark
> frosting.

kh,

I know your trying to get the calories to keep your weight up, but you
want to be careful about cholesterol. Dr. Strum says that PC "thrives"
on cholesterol, especially LDL.

You might want to pull back a little on the red meat and dairy. Are
you taking any fish oil supplements? It's all fat grams but helps with
cholesterol.

John

JohnHace wrote:
>
>
> You might want to pull back a little on the red meat and dairy. Are
> you taking any fish oil supplements? It's all fat grams but helps with
> cholesterol.

I thought about those and other dietary factors too, John, but then I
looked at the bigger picture and saw overriding factors. I hope I have
two things kh has when I'm at that point: a great attitude and an
appetite. If I do, I'm going to have tables reserved every day at my
favorite pizza and buffet and hamburger and BBQ and pie restaurants.
Hell, I might even see what all the fuss is about smoking, considering
how long it takes to get lung cancer.

OTOH, one dietary precaution always worthwhile is fiber, of which
I see very little in his new diet; I do NOT want to fight constipation
while I'm dealing with everything else.

I.P.

"kh" <tchtic@yahoo.com> wrote in message
news:dcc1102d-b774-4531-b237-0ebb6eac78a2@u69g2000hse.googlegroups.com...

> Looks like it takes about week after radiation to hit the upswing.
> I'm ready to rock 'n roll.
>
> -kh thinking about fried shrimp, steak, chocolate cake with that dark
> frosting.

Great!! Glad to see the rebound.

This is one of the best threads I've read. kh, you're an inspiration
and a reminder that I need to keep on truckin.

Rich

On Mar 22, 8:15 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote:

> Great!! Glad to see the rebound.

At two weeks, the acid reflux is fading.It's still uncomfortable and I
got another bottle of Zantac-150 and more Gaviscon. My stomach sticks
out and looks bloated but not as bad as 2 weeks ago.

My back is a lot better. It's a dull ache now and I haven't felt the
knife in my spine for a while. If I'm sitting still, I feel fine.

I'm tired all the time. I sleep 10 hours a day.

During the month before treatment and during the radiation, I felt
fragile, weak, old. I walked bent over and shuffled. I have never
felt like that before.

30 years ago, I lived in a bad neighborhood. There was an old man who
used a walker. The day I moved away, I heard that punks used to lay
in wait for him, knock him down, and steal his grocery money. After
that I had fantasies of stalking them. That was when I was 30 and
could do 20 pushups with my left arm.

For the last 2 months, I was that old man. Getting out of my car at
night, in my safe, upper middle class neighborhood, I found myself
looking around. Some women and the frail do that, glance around, is
there anyone there, is it safe? Get into the house and lock the
door.

Remember Hughie's stories of the thugs, his bicycle, and how he fought
back. Aging, getting weak from the disease, loss of strength are a
big deal. We're men.

The decadron has taken 10 pounds of muscle off my arms and legs, maybe
more. Maybe some of the weight loss is hidden by the bloating of my
stomach. My arms and legs are thin.

I am not putting up with this. Now that the pain is ebbing, my bones
are strengthening, stamina is returning, I am not putting up with
this.

I am easing into an exercise program, the bones in my spine are still
healing but I am doing knee bends, slow reps with light hand weights,
not pushing it but enough exercise to pull me back. Inova said 6
weeks for my back to heal. I have 4 to go.

I'm eating more protein, not an excessive amount but tofu, ground
beef, eggs. Calcium, both supplements and calcium foods like
broccoli, milk.

I don't know what the taxotere will do to me but I will be as strong
and fit as possible when they slip the IV in my arm.

I'll keep my weight down and hopefully exchange the bloated belly for
muscle on my arms and legs.

Steve K says maybe 2015 for the silver bullet. Fine. Just more time
for me to raise cash for that treatment. Gourd D is doing great and I
can too.

This thing tried twice to get me. I am not giving it a third chance.
Inova slammed it with their Varian Trilogy. Now it's JHU's turn with
taxotere and the IL-6 antigen.

-kh spring is here, rebirth, renewal, the cycle of life.

On Fri, 28 Mar 2008 05:44:34 -0700 (PDT), kh <tchtic@yahoo.com> wrote:

>At two weeks, the acid reflux is fading.It's still uncomfortable and I
>got another bottle of Zantac-150 and more Gaviscon. My stomach sticks
>out and looks bloated but not as bad as 2 weeks ago.
>
>My back is a lot better. It's a dull ache now and I haven't felt the
>knife in my spine for a while. If I'm sitting still, I feel fine.
>
>I'm tired all the time. I sleep 10 hours a day.
>
>During the month before treatment and during the radiation, I felt
>fragile, weak, old. I walked bent over and shuffled. I have never
>felt like that before.
>
>30 years ago, I lived in a bad neighborhood. There was an old man who
>used a walker. The day I moved away, I heard that punks used to lay
>in wait for him, knock him down, and steal his grocery money. After
>that I had fantasies of stalking them. That was when I was 30 and
>could do 20 pushups with my left arm.