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Mitoxantrone chemo (Week 0) adventure - kh

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kh

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Feb 3, 2010, 11:59:37 AM2/3/10
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This is your week 0 report of the IV Mitoxantrone-chemo adventure.

This is the first of a new treatment series. A new adventure has
started.

Recapping the PSA, this is on Lupron. It doesn't look good but it's a
lot better than the 30 day PSA doubling time of a few years ago.

2009 was the oral Cytoxan treatment. The two 50 mg tabs each morning
controlled my PSA until it stopped working.


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
10/13/2009 40.6 <---<<< Cytoxan fails
12/1/2009 58.4
1/12/2010 94.5
2/2/2010 133 <---<<< Mitoxantrone starts here.

For the last month, I have had occasional bouts of feeling bad. It
lasts a day then I feel better for a week. I asked about this and it
is a common complaint. My other complaints, the fatigue, weakness,
general vague pain, the wizard confirmed that others report this.
It's the metastatic cancer. Next visit, they'll give me a shot that
will boost my red cells.

I figure I need to do my part, which is to stand up more. Work my
legs and arms more. I have to fight off the Decadron which erodes the
long muscles.

The CAT scan showed slightly more tumor in my lymph nodes than a year
ago.

Mitozantrone is a blue IV fluid; they infuse it fast, 15 minutes. The
immediate risk is nausea, which they pre-treat with an anti-nausea
med. They also rolled over an oxygen tank, just in case.

I felt a very slight burning or ache at the IV site. It was barely
noticable.

15 hours later, I don't notice any side effects. I got up this
morning feeling about as I have for the last few months. I took my
morning meds.

They didn't ask me to come in every week as I did on the Taxotere.
"Call if you notice anything or have questions but we'll see you in 3
weeks."

They did recommend that I increase the Oxycodone if the pain bothers
me. I am resisting this as the Oxy has its own side effects. I take
enough to get by. If I just sit still, there is no back pain.


-kh

()-()
\"/(""""}-----
` ^^ ^^

Steve Kramer

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Feb 4, 2010, 7:09:15 AM2/4/10
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"kh" <tch...@yahoo.com> wrote in message
news:8ac03829-f5c9-4391...@x9g2000vbo.googlegroups.com...

> 2/2/2010 133 <---<<< Mitoxantrone starts here.

-- skramer remarks

Is there any expectation as to when the PSA will likely decrease?


> ()-()
> \"/(""""}-----
> ` ^^ ^^

Kudos to the Warrior Rat!


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 0.56 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added daily 07/06
PSA undetectable since. Next Assay 02/02/10
Illegitimati non carborundum


Lud

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Feb 4, 2010, 9:55:39 PM2/4/10
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You are the WARRIOR RAT - graduated from labrat.

Ask your wizard about ZD4054 (zibotentan), doctors here feel it holds
great promise, now in final phase 3 trials.

Battle onward!!!
Lud

Alan Meyer

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Feb 4, 2010, 11:13:40 PM2/4/10
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On 2/3/2010 11:59 AM, kh wrote:
> This is your week 0 report of the IV Mitoxantrone-chemo adventure.
>
> This is the first of a new treatment series. A new adventure has
> started.
> ...

You're an inspiration to the rest of us kh. I learn a great
deal from your reports.

Thank you and best of luck on the new protocol.

Alan

kh

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Feb 9, 2010, 10:27:16 AM2/9/10
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This is your week 1 report of the IV Mitoxantrone-chemo adventure.

2/2/2010 - Infusion.
2/3/2010 - Hey, I feel fine.
2/4/2010 - Whoa, whoa. Exhausted. Tired. Slept for 14 hours.
2/5/2010 - Still tired.
2/6/2010 - Snow, great. An excuse to sleep in.
2/7/2010 - More sleep - some joint pain.
2/8/2010 - More sleep but starting to feel normal.

The Mitoxantrone made me tired, more than anything previous. It's not
weakness, although I am physically weak. It's that I am tired and
sleep helps. I can do light activity around the house, cook, laundry,
work on the computer but I tire easily and only have 3 or 4 hours in
me before I need a nap.

I don't know the source of the joint pain. It's in my elbow and
ached.

My back pain seems less and a few times I got up and almost felt
normal.

I slept through the weekend, getting up for a few hours to eat, bath,
work on the computer. My head is clear, there's no chemo-brain like
on the Taxotere.

As I understand the goal of this treatment, it's to hammer the tumors
and give me a reasonable quality of life. They didn't speak to PSA but
google found reports of PSA drops.

This treatment caused extreme fatigue on the 2nd day after the
infusion, followed by an improvement each day following.


-kh feeling pretty good after sleeping the weekend.

kh

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Feb 16, 2010, 6:54:26 AM2/16/10
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This is your week 2 report of the IV Mitoxantrone-chemo adventure.

Week 1 - Infusion. Tired, slept 12-14 hours/day. Worse day was
Thursday, 2nd day.
Week 2 - Sleeping 10 hours/day. Did sleep more on some days.

Towards the end of Week 2, I would nap for a hour or two, then 8 hours
left me feeling good.

I am still weak and only have 2 flights of stairs or 3 blocks on level
pavement in me.

The back pain is less and I got up this morning not feeling an urgent
need for the Oxycodone. I did take the 5mg dose.

We had a LOT of snow last week. I took most of the week off from
work. I don't have the physical endurance for serious show shoveling.
My arms and legs are still pipe-thin from the Taxotere, Prednisone,
and Decadron. I did some shoveling which was good exercise. I can do
5 minutes of pushin' snow then I have to rest for an hour.

I fell several times on the ice. Once was really hard and jarring.
This not a good thing when tumors have weakened your bones and you've
got a compression fracture in your spine. The psychological low point
was lying there on the ice, body aching, wondering if I had broken
anything. For once I felt weak, old, hopeless, and afraid.

I lay there for a minute. Then, I got up. I even said it out loud,
"I'm up! Everything is working."

Guys, I can beat the physical weakness. I have been walking the
halls at work. It's 3 blocks from the parking to my desk. It's two
blocks from my desk to the 7-11 where I get ice cream on my afternoon
break; four blocks round trip.

2 years ago, when the Taxotere was tearing me down, I remember looking
at aluminum walkers and those mobility carts. I've come back some but
this is tiny, tiny progress.

I have a training schedule from 15 years ago for a minimal triathlon,
you've seen them, 20 miles on a bike, run a 5K, swim 1000 meters.
Something like that. Any fit 20-something can do it without
training. In my late 40's, I started working toward it, not to win or
even place in my age group but just to finish.

My goals are more modest but I am setting them apart from the tumors,
PCa, PSA.

Walk/jog 2 miles. Climb 6 flights of stairs. Swim 4 pool lengths.
Press 50 pounds.


-kh This PCa thing ain't taking me down.

()-()
\"/(""""}----/
` ^^ ^^

Steve Kramer

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Feb 17, 2010, 9:05:25 AM2/17/10
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"kh" <tch...@yahoo.com> wrote in message
news:6a936e85-3100-4a1f...@q16g2000yqq.googlegroups.com...

> ()-()
> \"/(""""}----/
> ` ^^ ^^

I read the whole narrative in anticipation of seeing where the tail was.

Fantastic.

--
skramer remarks


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 0.56 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
Casodex added daily 07/06

PSA undetectable since. Next Assay 10/10/10
Illegitimati non carborundum


kh

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Feb 25, 2010, 6:33:59 AM2/25/10
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This is your week 3 report of the IV Mitoxantrone-chemo adventure.

Week 1 - Infusion. Tired, slept 12-14 hours/day. Worse day was
Thursday, 2nd day.
Week 2 - Sleeping 10 hours/day. Did sleep more on some days.

Week 3 - Prior to infusion, tired, weak but able to run around
squeaking.

The infused me on Tuesday. I did not feel anything on Tuesday.
Wednesday, I felt tired. Wednesday night, I slept 11 hours. I'm
about to head to work. I'll see how this Thursday works out.

1/12/2010 94.5
2/2/2010 133 <---<<< Mitoxantrone starts here.

2/23/2010 169

The docs said that it takes 3 or 4 infusions before most see a PSA
response. Slamming the tumors, feeling better, that takes time too.

I saw 161.9 pounds on the scale. I am getting around OK. I'm just
tired and weak.

They gave me a shot of Aranesp to boost my reds. I'll let you know if
that helps.

They recommended that if I felt pain, to increase to Oxycodone.
Double the dose. My 5 mg every 6 hours is considered very low. In
the evening, I'd been taking 2.5 mg.

I am hanging in there. My job is going well. I've started reading
for my hobby again.


-kh Eating well, just small meals.

kh

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Mar 3, 2010, 6:31:45 AM3/3/10
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This is your week 4 report of the IV Mitoxantrone-chemo adventure.

Week 1 - Infusion. Tired, slept 12-14 hours/day. Worse day was
Thursday, 2nd day.
Week 2 - Sleeping 10 hours/day. Did sleep more on some days.
Week 3 - Prior to infusion, tired, weak but able to run around
squeaking.

Week 4 - 2nd Infusion - Not as tired as after the 1st.

Side effects - the Mitoxantrone leaves my arms looking bruised. It is
hard on the veins, leaks out, and irritates the near by tissues. My
skin near the infusion site looks red and splotchy. The infusion 4
weeks ago has healed but there are still faint marks on my arm.

Last week's site looks like I was in a fight with a cat. It is
healing slowly.

I had two very minor episodes of throat irritation. A cough drop and
a few sips of water took care of that. My stomach is about as it's
been for the last 6 months. I am still taking 30 mg of Prevacid in
the morning.


If the Mitoxantrone gets me another year of quality life, I'm fine
with that. There are many new treatments on the way. The word is
that Dendreon's Provenge will be FDA approved on May 1st, if not
sooner.

Each treatment seems to get me another year. I am weaker but some of
that is me. I gotta take the guidance from I.P. and build myself up,
push harder, play with my girly weights. 2 pound hand weights are my
limit but each rep helps.


I saw 159 pounds on a balance scale at the jobsite. Food tastes off
but not as bad as on the Taxotere. A grilled steak with no seasoning
is pretty good. I have very slightly more stamina but still gasp for
breath if I climb 2 flights of stairs. I have some steroid puffiness
in my face so I don't look gaunt. I also have this fine Lupron
belly.

I am hanging in there. My job is going well. I completed my taxes
and sent them off to my tax attourney for his review. I expect a
refund and will use some of that for fun and to fix up my place.


-kh Tail way up this week. I have a lot of cheese.

Steve Kramer

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Mar 3, 2010, 7:28:07 AM3/3/10
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"kh" <tch...@yahoo.com> wrote in message
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Steve Kramer

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Mar 3, 2010, 7:31:13 AM3/3/10
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"kh" <tch...@yahoo.com> wrote in message
news:7f2316a0-4b1d-4985...@f35g2000yqd.googlegroups.com...

> I completed my taxes


> and sent them off to my tax attourney for his review.
>

> If the Mitoxantrone gets me another year of quality life, I'm fine
> with that.
>

> Each treatment seems to get me another year.

Man, you must really like taxes! Is this a typical side effect? ;-)

Lud

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Mar 4, 2010, 10:09:42 PM3/4/10
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Amazing Mighty Mouse! er ... labrat

Don't you have a "port" installed, saves a lot of wear and tear on the
veins.

BTW don't stop Previcid ever - you will have a tremendous acid rebound
- I found out the hard way - same with all the PPIs.

Keep flying high - MM.

Lud

Andre

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Mar 5, 2010, 11:40:02 AM3/5/10
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Dear Lab Rat,

Week by week, you give me preview of what is probably going to be my own
future. This is a bizarre but welcome form of science-fiction. Keep up the
good work.

Isn't it fun to fill in a tax reform, knowing that they will have to return
taxes. This is now my fifth year in a row where I do not pay taxes at all,
although I still have a very comfortable income.


kh

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Mar 9, 2010, 8:27:49 PM3/9/10
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This is your week 5 report of the IV Mitoxantrone-chemo adventure.

I've had 2 infusions on a 3 week cycle. Infuse, then 2 weeks off,
then infuse again.

I got 9 hours sleep last night and got up feeling better than I have
in months. My stomach didn't hurt, my back aches were reduced. I
won't say I felt normal but I felt, better, OK.

Food is tasting slightly better. Salt tastes intense but everything I
ate today, tasted right, good even. Good is two different things,
plain, fresh food with minimal seasoning or carefully seasoned
curries, sczheuan, chilis.

I handled a lot of work today, fixed things, repaired problems. The
Taxotere gave me chemo-brain, which is fogginess combined with impared
short term memory. The Mitoxantrone has not caused that.

At 2 treatments of Taxotere, my hair fell out. I'm past that point on
the Mitoxantrone and the soft brown hair is hanging in there.

My strength and stamina are improved. Don't get me wrong. I am weak
and walk with a shuffle, I can barely climb two flights of stairs.
However, at week 5, I can feel the improvement. It's not much but I
will take any improvement I can get.

The test is in about another 6 weeks. About infusion 4 or there after,
they'll know if the Mitoxantrone is doing anything for me. They will
only go 10 infusions (30 weeks) because the Mitoxantrone can damage
the heart.

Either way, I'm giving this my best shot. Next? Who knows. Dendreon's
Provenge may be FDA approved this May 1st. I have not had
Ketoconosole or Abiraterone.


-kh

Steve Kramer

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Mar 10, 2010, 8:04:54 AM3/10/10
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"kh" <tch...@yahoo.com> wrote in message
news:dfb96dcb-c8d3-4d99...@a18g2000yqc.googlegroups.com...

> Next? Who knows. Dendreon's
> Provenge may be FDA approved this May 1st. I have not had
> Ketoconosole or Abiraterone.

One must wonder as to what they are waiting for. Can you imagine the scene?

Hey, Maggie! We really need to have a meeting about that Provenge thing.
It's up again.

Geez, Josh, I'm all booked up and Ralph's out of town and then Kathy is
gone.

Kathy!?! Come on, Maggie! She's in women's health. Why on Earth would we
need her for a Prostate Cancer drug.

Well you know Josh, that there might be a female use down the road.

Okay, how about April 15?

No, you'd better put it off until May.

Okay, May 1st. There won't be more than a couple thousand die between now
and then.


Lud

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Mar 10, 2010, 2:47:19 PM3/10/10
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Why haven't you tried Ketoconazole or DES? - a lot easier than chemo
or use them as a break between chemo?

Wishing you the best, your fight is inspiring for me.
Lud

Sue Mullen

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Mar 10, 2010, 4:11:29 PM3/10/10
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The reason Kevin is doing taxotere instead of Ketoconazole is to keep
MDV3100 as an option in the future. If you are have taken Ketoconazole
they will not take you into the MDV3100 trial. I don't know if this is
the reason with KH or not.

sue

kh

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Mar 11, 2010, 8:15:18 AM3/11/10
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Some comments.

Yeah Steve, I don't get the FDA and provenge. We're dieing here and
they're worried about something. Just give us another arrow for the
quiver.


This morning I had an I.P. experience. I went Pd seeds and IMRT so
I've been basically dry.

A couple years ago, this "when I have to go, I really have to go"
thing started. Sometimes I'd make it, sometimes I'd feel a warm stream
run down my leg as I struggled with the zip.

I've talked to friends about this and women say they have this problem
too. Really?

A few times, mostly when I've been drugged up with pain meds, I've
woken up with damp drawers. That's very rare so I haven't taken
measures like sleeping in Mr. Dignity disposables.

This morning, there was a harmonic convergence. I woke up, rolled to
the side. I had to cough. Just as I coughed, "Oh no!" I felt a warm
squirt.

Just what I need! I got up. I finished peeing and ran a hot tub to
soak and wash off.

I don't know why Ketoconazole was never tried or any of the other
treatments. I've never second guessed the Wizard. I do ask lots of
questions.

Clint Eastwood says, "A mans gotta know his limits." The details of
the tradeoffs are beyond my ability to comprehend.

My treatment history after the PCa went systemic and aggressive, was:

Lupron.
Lupron with Casodex.
Lupron alone when the Casodex failed.
Palliative radiation for the lower spine tumors
Taxotere with CNTO(328) and prednisone
Cytoxan
Palliative radiation for upper spine tumors
Mitoxantrone with 1.5 mg/day Decadron.

I am still on Lupron and the Wizard says that I'll be on it forever.

Along in there, he has mentioned the Keto and other possible
treatments. One option is radioactive Samarium.

I think I have an unusually aggressive disease. One thing I'm still
puzzling over is that I had a PSA of about 10 for several years before
a 2nd biopsy found the cancer. Less than 2 years after the Pd seeds
and IMRT, my PSA started climbing fast, 30 day PSA doubling time and a
"bulky" tumor in my chest.

There is a theory that the primary tumor in the prostate emits
chemical signals that tell seconday tumors to "cool it". When the
radiation killed the primary tumor, the secondaries went wild. Is
that what was happening? Why can't they bottle those chemicals and use
that as an infusion.

The fact that I am still scampering around, squeaking, gnawing on
food, says that the Wizard is doing good for me.


-kh I'm having steak this weekend! I can't wait.

CoreyC

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Mar 16, 2010, 3:40:43 PM3/16/10
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kh -

> My treatment history after the PCa went systemic and aggressive, was:
>
> Lupron.
> Lupron with Casodex.
> Lupron alone when the Casodex failed.
> Palliative radiation for the lower spine tumors
> Taxotere with CNTO(328) and prednisone
> Cytoxan
> Palliative radiation for upper spine tumors
> Mitoxantrone with 1.5 mg/day Decadron.

A few thoughts....

1. The hormone angle has not been pushed too hard - only Lupron and
(low dose) casodex. High dose casodex, nilutimide or even flutamide
might help. In addition, also adding avodart could push the envelope
harder. Finally, ketoconazole/prednisone seems a good choice. (Note I
am biased - Ketoconazole/prednisone/avodart/fosomax/pomegranete has
knocked my G8, 1-2 month DT cancer down for 2 years; after failures
of: surgery/taxotere/radiation; then on recurrence 3 years later,
failures of lupron, casodex, nilutimide).

2. Leukine (GM-CST) alone or with other drugs (e.g. ketoconazole,
thalidomide)

3. Thalidomide - recent paper showed statistically significant effects
(with early stage cancer, however)

4. If you had a good response to taxotere and it was at least 6 months
ago, repeating might work. Lots of accumulating evidence on this.

--- note most are off-label, so cost may be an issue, depending on
insurance. Ketoconazole is pretty chaep, however.

corey

kh

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Mar 23, 2010, 9:44:55 AM3/23/10
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This is your week 6 and week 7 report of the IV Mitoxantrone-chemo
adventure. I appologize for the delay. It was a combination of
infusion week side-effects, fatigue, weakness and health issues.

I've had 3 infusions on the 3 week cycle. Infuse, then 2 weeks off,
then infuse again.

PSA continues to run out of control.

1/12/2010 94.5
2/2/2010 133
2/23/2010 169.3
3/16/2010 232.8

My weight has fallen to 151.9 pounds.

Pain levels are up. I increased the pain meds slightly.

A1c (blood sugar indicator) 6.8, 7.5, 8.9. Measured at 3 week
intervals. Bad is above 7.0.

Red cells 8.5. 8.0 is the cut off. 15 is a good number. At 8.0,
they are talking transfusions.

Last Friday night, I woke at 1:00 AM choking and gasping for air. This
happened a year ago when fluid pressed on my diapharm. This time, I
believe it was a combination of the low reds putting me in oxygen
debt, eating too late, and having no physical reserves.

The next day, I was able to "trigger" the panic breathing by standing
up quickly. For once, I was awake when it started and I could note
all the sensations leading up to the event. It takes: a dry throat
(I'm a snorer), oxygen debt, pressure on the diapharm preventing a
full deep breath.

Since then, I make sure I sleep on my side and bent so that I can
breath easily. I keep a cup of water next to the bed (and with me all
the time). I let my food digest at least 2 hours before going to
sleep.

I can't walk 2 blocks now. I have to stop to rest. Same with 2
flights of stairs. My back still hurts while walking.

I won't sugar coat this report. I'm crashing.

Some small positive indicators. I am working full time. I have kept
up with my workload. Spring is here and I want to get out and walk,
even if it's only a block.

The docs say that if my red cells come back up, my stamina will bounce
back. I've had 2 shots of Aranesp, the red cell booster. It should
start working soon. They say it takes a month or two. My first shot
was 4 weeks ago.

I have an appointment with my Internist today. I'm faxing his office
a 1 page read-ahead.


-kh

()-()
\"/(""""}----\
` ^^ ^^

Steve Kramer

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Mar 24, 2010, 7:03:38 AM3/24/10
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"kh" <tch...@yahoo.com> wrote in message
news:c6350f98-a8cf-4d0e...@z3g2000yqz.googlegroups.com...

-- skramer remarks


>
> This is your week 6 and week 7 report of the IV Mitoxantrone-chemo
> adventure. I appologize for the delay.

On Saturday afternoon, I caught a flu and was in my recliner and bed pretty
much until yesterday afternoon. I made it downstairs to my computer twice
in that time. And you're apologizing to us?!?! You humble me, sir.

Thank you for the service you provide us, Warrior Rat.

Lud

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Mar 24, 2010, 11:15:49 PM3/24/10
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When I was taking Aranesp , I was told by my hematologist to take iron
ills to get it to work - otherwise it takes a long time.I take ferrous
fumarate 100mg with some vitamin C for absorption.

Keep on squeaking - warmer days are coming.
Lud

kh

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Mar 26, 2010, 6:55:26 AM3/26/10
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On Mar 24, 7:03 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:

>  And you're apologizing to us?!?!

If the details of my treatment helps someone, that gives me another
reason to keep this journal. The journal helps me and I can abstract
from it and give a one-page summary to my other docs.

Stamina and strength are way down but perhaps the Aranesp will boost
my reds and working with 2 pound weights will help regain some
strength.

I think we'll beat this. I've got it bad but Provenge goes for FDA
approval on May 1st and there is a long list of other treatments.

There's a warrior brother who is also on the Mitoxantrone. His next
infusion is this coming Tuesday. We were on the Taxotere together and
used to cut-up in the infusion center. That was 2 years ago.

-kh

Steve Kramer

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Mar 26, 2010, 8:38:00 AM3/26/10
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"kh" <tch...@yahoo.com> wrote in message
news:ba1d195c-5aa4-4472...@z35g2000yqd.googlegroups.com...

On Mar 24, 7:03 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:

> And you're apologizing to us?!?!

If the details of my treatment helps someone, that gives me another
reason to keep this journal.

==> It sure as Hell helps me!


Sue Mullen

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Mar 26, 2010, 10:41:45 AM3/26/10
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You sure have helped me and Kevin and I often go back and read parts of
your Taxotere updates.

There are so many new treatments out there, some should have FDA
approval very soon and many following soon afterwrds.

Good luck to you, hope things start improving soon.

sue

I.P. Freely

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Mar 27, 2010, 12:52:20 PM3/27/10
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Lud wrote:
>> Last Friday night, I woke at 1:00 AM choking and gasping for air. This
>> happened a year ago when fluid pressed on my diapharm. This time, I
>> believe it was a combination of the low reds putting me in oxygen
>> debt, eating too late, and having no physical reserves.
>>
>> The next day, I was able to "trigger" the panic breathing by standing
>> up quickly. For once, I was awake when it started and I could note
>> all the sensations leading up to the event. It takes: a dry throat
>> (I'm a snorer), oxygen debt, pressure on the diapharm preventing a
>> full deep breath.

May we assume you've tried a CPAP, maybe with oxygen supplementation?

I.P.

kh

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Apr 2, 2010, 7:43:29 AM4/2/10
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This is your week 8 report of the IV Mitoxantrone-chemo adventure.

Reds came in at 7.4. "Get to the ER and tell them that you are a
cancer patient on chemo and are crashing."

I messed up, I tried to "talk" to the hospital and schedule the
transfusion. Finally, it became obvious that talking was the wrong
thing. I got a ride to the ER and staggered in. I told them my
story. They understood that it was an "emergency".

They gave me two units of blood and and that made a big different. I
can move easier and am not gasping for air. It takes about 3 hours to
transfuse a unit of blood.

They kept me overnight. I'd like to bust out of here.

Hospitals are much too cautious. They were worried about internal
bleeding causing the low reds and made me poop in a container. They
checked and rechecked my whites, temperature, BP and other vitals.

They wanted to keep me a second day. I begged off, JHU and my
Internist keep this rat on a short leash.

Hematocrits was 24. Now, 32.

Hemoglobin was 7.6. Now, 10.2.

Feeling better.

Sue Mullen

unread,
Apr 2, 2010, 10:37:50 AM4/2/10
to

Geez, you and Kevin both wound up in the hospital. Your for your reds
and Kevin for the white. I will write an update about Kevin later today
when I get some energy/time. In the meantime I am glad you are feeling
better!!

sue

Steve Kramer

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Apr 3, 2010, 8:40:41 AM4/3/10
to
"kh" <tch...@yahoo.com> wrote in message
news:ce5563f5-6344-4542...@o30g2000yqb.googlegroups.com...

> Hematocrits was 24. Now, 32.
>
> Hemoglobin was 7.6. Now, 10.2.
>
> Feeling better.
>
> -kh
>
> ()-()
> \"/(""""}----/
> ` ^^ ^^

And the tail is back up!

Thanks for the report Warrior Rat.

kh

unread,
Apr 8, 2010, 6:15:40 AM4/8/10
to

This is your week 9 report of the IV Mitoxantrone-chemo adventure.

Here's the bad news.

12/1/2009 58.4


1/12/2010 94.5
2/2/2010 133
2/23/2010 169.3
3/16/2010 232.8

4/6/2010 335.3 Had 4 infusions of a max of 10.

I've increased the pain meds. I'm taking five, 5 mg tabs/day now and
might go to six. I have a diffuse discomfort level that might be
metastatic lesions causing trouble.

I weighed in at 146.8 pounds on the digital scale. That's 50 pounds
below my high weight, 2 years ago. I am throwing caution to the wind
and eating high calorie, high fat, high sugar foods, carbs, whatever I
can keep down. I've got to get my weight up.

The Decadron gave me unstable sugar but this is beyond anything that
I've ever seen.

I am getting around better. The two units made a big difference.
They are working me pretty hard at the office. I'm glad for the
work.

My arms and legs are pipe-thin. I have no strength.

-kh

Steve Kramer

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Apr 8, 2010, 8:17:36 AM4/8/10
to
"kh" <tch...@yahoo.com> wrote in message
news:d1ee5910-99b7-445c...@b33g2000yqc.googlegroups.com...
>

> My arms and legs are pipe-thin. I have no strength.

KH,

You are one of the strongest men I know.

Lud

unread,
Apr 9, 2010, 10:51:53 PM4/9/10
to

Damn bummer - what on earth is your Wizard doing?
Squeak loudly!!!

And don't you have cancer center nutritional support?

Best wishes

Lud

kh

unread,
Apr 13, 2010, 7:03:42 AM4/13/10
to
This is your week 10 report of the IV Mitoxantrone-chemo adventure.

I haven't checked my weight in the last week but did find an "optimum
weight" chart on the Internet. Those are too low but for my height,
5'7", the range is 142-154. My last official weigh in was 146.8
pounds, down from 197 a few years ago.

How can I be "wasting away" when I weigh 4 pounds above the bottom of
the range? The same chart says that 197 would be OK if I were 6'2"
tall.

The two units last week have increased my energy and I can walk 2
blocks now. Stairs are still hard.

I'm getting a lot of work done, which is reassuring. My contract is
up for renewal in 2 months. I'm not financially ready to retire but my
body sure is.

I spend all weekend sleeping and by Monday, I feel almost human, er, a
little less rat-like.

While at Cancer ward, their Nutricionel.... Dietic.. er, Food
Consultant stopped by to check on me and play 20 questions.

What does food taste like on chemo?

How much weight have you lost?

What are you eating?

I'm going to name some foods, how many calories are in it.

At the end she said, "You're good!"

Well, when I was on 8 mg of Decadron/day, my blood sugar hit 350 and I
clocked an A1c of 12.

That was 5 years ago and I could not convince the docs that I wasn't
diabetic, that it was some drug they had me on.

They sent me to diabetes school. Once I got off that round of
Decadron, my blood sugar fell to almost normal. It was still slightly
elevated but at 197 lbs, almost 60 years old, flying a desk for a
living, it was a wonder that I wasn't a raging diabetic.

I started walking regularly, eased my weight down but then the PCa ran
out of control and here I am.

-kh

()-()
\"/(""""}----- gaunt rat with pipes for legs.
` || ||

Steve Kramer

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Apr 13, 2010, 7:59:42 AM4/13/10
to
"kh" <tch...@yahoo.com> wrote in message
news:9cbd1c7e-5833-4ef7...@k33g2000yqc.googlegroups.com...

> How can I be "wasting away" when I weigh 4 pounds above the bottom of
> the range? The same chart says that 197 would be OK if I were 6'2"
> tall.

Us big and tall guys have always railed against the bigotry of the skinny
SOBs that make those charts. BTW, at 21 I was 6'6" and 197. I lost an inch
and gaine more than 100 pounds since then.


> I'm getting a lot of work done, which is reassuring. My contract is
> up for renewal in 2 months. I'm not financially ready to retire but my
> body sure is.

I highly recommend it if you can do it. I don't do any less work, but it's
work that I want to do and no one is telling me how to do it or moving the
coffee machine down the hall.

--
skramer remarks

J

unread,
Apr 13, 2010, 6:32:07 PM4/13/10
to
kh wrote:

> This is your week 10 report
>

> I haven't checked my weight in the last week but did find an "optimum
> weight" chart on the Internet. Those are too low but for my height,
> 5'7", the range is 142-154. My last official weigh in was 146.8
> pounds, down from 197 a few years ago.
>
> How can I be "wasting away" when I weigh 4 pounds above the bottom of
> the range? The same chart says that 197 would be OK if I were 6'2"
> tall.
>

> I spend all weekend sleeping and by Monday, I feel almost human, er, a
> little less rat-like.
>

> I started walking regularly, eased my weight down but then the PCa ran
> out of control and here I am.

http://www.yananow.net/elephant.htm (Excerpt0
The Elephant In The Room as far as prostate cancer is concerned is
anything to do with death or dying. The subject rarely comes up on Lists
or Forums and if it does is greeted with a hushed silence. Yet it is the
main driver behind all decisions to do with the disease - people want to
know "How long have I got?" "How does death come?" So here's my take,
modified by some excellent input after the subject was discussed on the
Lists.

2. Age at diagnosis.

The SEER statistics for the USA 2002-2006 show the median age at diagnosis
for prostate cancer was 68 years of age. Approximately 0.60% men were
diagnosed aged between 35 and 44; 8.7% between 45 and 54; 29.0% between 55
and 64; 35.6% between 65 and 74; 21.4% between 75 and 84; and 4.7% 85+
years of age. This is about 7 years younger than it was prior to the
introduction of PSA tests, when the median age was in the mid-70s.


The latest SEER mortality rates (2002-2006) show the median age at death
for cancer of the prostate was 80 years of age. That is to say, half the
men who died from prostate cancer during this period were more than 80
years of age. The figures also show that over 90% of the men who died were
over the age of 65. There were no statistically valid deaths for men under
the age of 34 and between 35 and 64 these were the relevant figures: 0.1%
between 35 and 44; 1.4% between 45 and 54; 7.2% between 55 and 64.


There is a view that any diagnosed disease in a young man is more
aggressive, but this is not supported by available data and arises from
the pre-PSA era when very few young men - men in their 40s and 50s - were
diagnosed.

3. Other causes of death:

Overall, despite the statements in publicity material, prostate cancer is
not a major killer of men. In most Western countries, such deaths account
for only about 3% of male deaths; in countries with lower life
expectancies prostate cancer often does not feature on the mortality
tables because men in those countries simply do not live long enough.

The mortality rate for men diagnosed with prostate cancer is higher than
the overall, national rate, but, generally speaking, men with PCa still
have a higher risk of dying from some cause other than this disease. Two
recent studies illustrate this point fairly clearly.

The first, published in 2008 was a fairly large one with a
population-based cohort study of 19,271 men aged 66 years or older
diagnosed with clinical stage T1-T2 prostate cancer. Some (41%) of these
men had ADT (Androgen Deprivation Therapy); others were watched for
progression. During the follow-up period (the median follow up time was 81
months, a little under 7 years) almost two thirds of the men died - 11 045
(88%) of all deaths were from causes other than PCa and 1560 (8% of the
men in the study) from prostate cancer.

The second study is an ongoing one on Active Surveillance, results for
which were presented in May 2009 at the AUA conference. The median
follow-up in this study, which is a smaller one with only 453 is 7.2
years. In that time 17% of the men in the study have died with 5 men (1%)
of the men in the study, dying from prostate cancer. The ratio of
non-prostate cancer to prostate cancer mortality was 16:1. The men in this
study had diagnoses very close to the "good" diagnosis set out above.

None of these three factors can, in themselves, produce a firm answer to
the question "How long have I got?" but taken together they can help to
give an indication of the potential survival time for an individual, who
can assess where his diagnosis fits into the range; how old he is; what
his general state of health is and what his activities are. Hopefully in
completing this exercise he will come to the conclusion that he has many
years ahead of him and that he can fully realise that there is indeed life
after Prostate Cancer and to realise that this is still primarily a
disease of old men, at least as far as death is concerned. As Willet
Whitmore said, many years ago: "Growing old is invariably fatal while
prostate cancer is only sometimes so".

HOW DOES DEATH COME?

For most people, the word "cancer" is an emotionally laden one, and I was
no exception to this rule when I was diagnosed. It is usually associated
with a drawn out, painful death and this is particularly so as far as
prostate cancer is concerned, where metastasis to the bone can create
significant pain.

There is no doubt that this can, and does happen in a significant number
of men and it is an awful fate for them and their loved ones, but the two
most common causes of death associated with prostate cancer are
cardiovascular and respiratory failure - heart attacks and pneumonia. In
the few discussions that have occurred, experts in the field of prostate
cancer have said that modern pain management techniques can deal with most
of the issues and that, in any event, the dreaded painful bony metastasis
is less common than imagined, at least in their experience (I know of no
studies that try to evaluate this issue). Jacquie Strax, who publishes the
excellent PSA Rising site has a page with more information on the subject
of Pain Control for Cancer Patients and there is a good page in the
Prostate Charity Toolbox.

I recently came across a piece written by Dr Michael Glode on his blog in
October 2007 where he answers the question, How does prostate cancer
actually kill you? He says in part:

Prostate cancer tends to spread to lymph nodes or bones. There are some
studies that begin to show us why this is different in different patients
��. but have yet to lead to more practical management decisions.


We treat all metastases first with androgen deprivation. In those patients
with nodes, we �.. ..keep the ureters open as they may be compressed by
the enlarging nodes. Without these interventions, the kidneys can stop
working and lead to death from accumulation of toxins normally excreted in
the urine.


For those patients in whom bone metastases dominate, the main issue is
often pain management. Radiation to bones that have tumor deposits can be
extremely helpful along with appropriate pain medications. It is highly
unusual to have a patient in whom pain cannot be well controlled with
radiation, opiates, NSAIDs and attentive care.

This is certainly reflected in my personal experience of friends who have
died from this diseaseand when I posted this piece on the Web, this was
one of the responses:

I am a hospice social worker who was diagnosed with prostate cancer in
2005. So I have two perspectives on the disease, as a survivor and as
individual who has provided counseling, emotional support, education and
advocacy to patients dying from prostate cancer. The focus of hospice is
to maximize a patient's quality of life while assisting him/her with the
transition from this life. Prostate cancer patients generally enter a
hospice program when they have six months or less to survive. The majority
of PC patients who have died under my agency's care went peacefully with a
minimal amount of physical pain and emotional stress.

Dame Cicely Saunders is regarded as the founder of the modern hospice
movement, opening St Christopher's hospice in 1967. As a nurse, she knew
that, as she said, "dying is hard work" and she transformed the way we
look at death and dying, ridiculing some of the medical profession for not
giving large doses of pain-killing drugs on the grounds that they might
become addictive. If the patient were dying anyway, what did it matter?
Nor did she believe that drug doses big enough to remove pain entirely
would necessarily cause the patient to develop such a tolerance to the
drug that it would become ineffective. Regrettably many medical
institutions and doctors still hold outmoded views and too many people,
suffer unnecessarily if they are not aware of these issues and are led to
believe that there can be no relief from their pain. Turning again to
Jacquie's PSA Rising site, there is an excellent page on Hospice, End of
Life Care


Dr Michael Glode's blog also refers to hospice care when he continues:


The thing that leads to death in most patients, however, is not direct
involvement of an organ like the liver, lungs or brain. Instead, most
patients seem to have a "wasting syndrome" not unlike AIDS. Loss of
appetite, loss of energy and general debilitation lead to weight loss and
patients don't feel like getting out of bed. Hospice care can be extremely
helpful for this stage of illness and is usually available either at home
or in an inpatient facility.

The 'wasting syndrome' to which he refers can come from emotional issues
like depression but is usually from Cachexia or Anorexia (not to be
confused with the anorexia nervosa of young women). If caught early on,
anorexia may be treated and weight loss reversed with nutritional
supplements or increased consumption of food. In prostate cancer patients
some molecular causes of cachexia are now known and work is being done to
try to address these, but cachexia does not respond to nutritional
supplementation or increased consumption of food.

One final point. People who reach this 'end of life' stage will often have
fought against the disease for some time and they, and heir doctors, may
misjudge how long they have to live. One study showed that Doctors who
referred terminally ill patients to hospice care were consistently
overoptimistic. In only 20 percent of cases were the doctors' predictions
accurate.

I hope I have not upset anyone reading this. That was certainly not my
intention. In my life experience our imagination often creates a far worse
picture than the reality that occurs. Knowledge can help rein in the
imagination. It may be useful to listen to an interview with Dr. Pauline
Chan, A Surgeon's Reflections on Mortality or a longer interview (almost
one hour) with her A surgeon reflects on how Americans face death

The Four Corners program on Australian Broadcasting Corporation ran a very
good program about palliative care and dying in February 2010 - A Good
Death http://www.abc.net.au/4corners/special_eds/20100208/palliative/


Steve Kramer

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Apr 14, 2010, 11:36:45 AM4/14/10
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"J" <xyewsnswex@nalid;"no> wrote in message
news:4BC4F0E7...@execulink.com...

> http://www.yananow.net/elephant.htm (Excerpt0
> The Elephant In The Room as far as prostate cancer is concerned is
> anything to do with death or dying. The subject rarely comes up on Lists
> or Forums and if it does is greeted with a hushed silence. Yet it is the
> main driver behind all decisions to do with the disease - people want to
> know "How long have I got?" "How does death come?" So here's my take,
> modified by some excellent input after the subject was discussed on the
> Lists.

While I will read the statistics with interest, I must assert that I believe
the premise to be far from correct. I do not opine based on being one man
who has a terminal disease as I believe that would rank me just a smidgen
ahead of a man without a deadly disease. But based on the prose of so many
who have passed through this NG, I have to believe that "how long do I have"
is a fleeting question. "How does death come?" is almost as fleeting in
that some research answers the generalities very well. As to detail, kh is
providing that without the interference of statistics.

Here are my salient decisions and their basis:

RRP - age (mostly), Gleason, PSA, and Stage and a desire for a cure.
EBRT - rising PSA and a desire for a cure.
ADT1 - rising PSA and desire to prolong death
ADT2 - rising PSA and desire to prolong death
Job - an able non-working man is useless to himself, his family, and his
community.
Retirement and investment options - I will preceed my bride.
Condo - my wife's knees and my eventual hospice.
Volunteer - an able non-working man is useless to himself, his family, and
his community.
Religion - 55 years of preaching, training, and research
Healthplex - desire to stave off this bastard and with the greatest quality
of life possible.

I honestly cannot think of one decision I have made based on how long it
will take or how death will come -- maybe the hospice.

> The SEER statistics for the USA 2002-2006 show the median age at diagnosis
> for prostate cancer was 68 years of age.

Just for the fun of it, the median of those in the NG over the last 8 years
has been 58 and the average 58.5.

> The latest SEER mortality rates (2002-2006) show the median age at death
> for cancer of the prostate was 80 years of age.

I'd opine this is about the most useless statistic I've ever seen.


> None of these three factors can, in themselves, produce a firm answer to
> the question "How long have I got?"

To that I agree. I have some personal milestones based on research and
trends noted in the NG. You will find them accurate, I believe, as to their
credulity and far from accurate in their actual outcomes.

When diagnosed (2000), the average seemed to be about 8 years for
asymptomatic diagnosis and 2-4 years for symptomatic diagnosis. I figured I
had until 2008 if I didn't kill the bastard. Nomagrams had me at about a
31% of organ-confined disease. So, if I fought hard, I'd probably make it
to 2008.

After surgery with the Stage changed to T3c and then my PSA started rising
within 12 months (2001). The radiation oncologist in 2002 gave me a 50/50
chance of living 10 years. The nomagrams told me there was a 16% chance of
no disease in six years. I optimistically told everyone 2012. But, I knew
that 2008 number was looking better all the time.

Sure enough, radiation was over in July and my PSA was already rising by
April 2003. Now, no one was talking to me. Sure, I would go on ADT, but no
indication how long it would last or how long I would survive. My sense was
4 years. The nomagrams spit in my face. They said my chance of surviving
two years was 2%. I knew that at the time ADT was held for advanced
mestatic cancer and I was hitting it hard and fast (some might say
prematurely). So, I gave myself two years on ADT, two on chemo and a
check-out time in 2007.

By 2005, with undetectalbe PSAs, I obvsiously had beaten the nomagram; but I
even beat my odds. Then, when I had to go on ADT2 in 2006, I gave myself
another two years - I was back to 2008.

This spring should have sprouted my third season of grass over my grave and
with all the rain a fine crop indeed. But, here in 2010 and I just have no
idea at all. And I am still not making any decisions based on it.

kh

unread,
Apr 20, 2010, 9:37:57 PM4/20/10
to
This is your week 11 report of the IV Mitoxantrone-chemo adventure.

I've been sleeping better and am slightly stronger this week. This is
the week before the Chemo. I am able to walk 2 blocks without gasping
for air but stairs are still hard.

Some of the stair problem may be muscle wasting and general weakness.
My upper body strength is pretty much gone.

Compared to a month ago, I have slightly more leg strength.

I am eating more. In the last week, I've increased my caloric intake
by eating small, high calorie snacks, peanut butter on one slice of
bread, a small cup of ice cream (the paper cups are 3.5 ounces), 3
ounces of sliced steak. This is not the best diet but it's what I can
handle. I eat about every 2 hours. It's like I'm eating non-stop
because it takes me a half hour to finish one slice of bread with
peanut butter on it thick.

Lunch today was a large slice of pizza with pepperoni and extra
cheese. Dinner will be an "energy shake".

I might get sushi or chinese food tomorrow.

About 3 weeks ago, I started feeling like I had to throw up but
nothing came up. The guidance for Mitoxantrone is that if I throw up
4 times/day, that's a problem.

About 2 weeks ago, I threw up once.

I've thrown up 3 times total. Ginger works to quiet that down. I
have not felt like throwing up since last Friday.


-kh urh-gurk

kh

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Apr 28, 2010, 10:34:37 PM4/28/10
to

This is your week 12 report of the IV Mitoxantrone-chemo adventure.

This was supposed to be the 5th of the 10 treatments. It didn't turn
out that way.

Hematocrits 24.
Hemoglobin 7.4.

Oops, Reds are too low, no Mitoxantrone for you. Come back on
Wednesday for 2 units of blood.

Is that why I've been dragging again? They gave me the 3rd shot of
Aranesp, which is supposed to start building up reds in a month or
so. It's about time for that to kick in.

I'm taking a iron pill every evening, which is supposed to help the
Aranesp.

My mouth has been dry, they looked in, "Thrush", here's a script for
Nystatin, swish and swallow. Yuck. It's the steroids. Still Yuck.

I'd been dragging for about a week. Unable to walk two blocks without
stopping to rest.

I mentioned a mild headache. Probably the low reds. Your brain's not
getting enough oxygen.

I said that I had a diffuse, all over body ache. Probably the low
reds.

Another recent difference is that I've had to use my inhaler once or
twice a day. Tree pollen has hammered me for the last month. The
Decadron blocks the allergic reaction. This time it was different.
Something would trigger a powerful allergic reaction, nose running,
fluid wheezing in my upper lungs. I'd gasp for air. This was mostly
in the morning.

I'd take my morning Decadron and a puff of the inhaler. I'd have an
old-man-in-the-morning coughing spell, hack up a huge amount of thin
mucus. This would go on for 5 or 10 minutes.

Then it would suddenly stop. I could breath normally.

I'm OK?!

I guess.

The Wizard wants me to take 1.5 mg of Decadron per day. On his OK,
I've been running out the 0.75 mg script by taking 0.75 in the
morning, breaking a second tab in half and taking 0.375 at noon and at
6:00 pm.

I'd been starting the day with a bang of 0.75 mg, suppress that
inflammatory response. Now the morning jolt is only 0.50 mg. Maybe
enough of a change that I have to use my inhaler.

The inhaler is a "Proventic".

I spent 3 hours at JHU getting 2 units of blood. The run-time for a
unit was only about an hour. They're a lot faster than the other
hospital.

I walked in dehydrated, gasping for air, pulse up over 120, heart
pounding to move what little blood there was.

While being transfused, the woman across the aisle went into cardiac
arrest. Call Code. They pulled a curtain around her bed but I could
hear them working.

This is the second one I've seen. Organized chaos. Too much
excitement for one day.

More in a few days.

-kh

()-()
\"/(""""}----*
` ^^ ^^

Steve Kramer

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Apr 29, 2010, 6:57:53 AM4/29/10
to
"kh" <tch...@yahoo.com> wrote in message
news:7fa8a8d6-c19a-4cf0...@d39g2000yqa.googlegroups.com...


> Another recent difference is that I've had to use my inhaler once or
> twice a day. Tree pollen has hammered me for the last month.

Worst year in a long time for pollen. Due to weather condition in the last
few months, Cincinnati's has been as high as 4000 when 380 is average and
1000 is the danger level - or whatever arbitrary term the EPA or DOH
ascribes to it. In any case, a lot of your weather has been the same as
ours.


> ()-()
> \"/(""""}----*
> ` ^^ ^^

Okay, I give up. What's the asterisk mean?

kh

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Apr 29, 2010, 8:42:42 AM4/29/10
to
On Apr 29, 6:57 am, "Steve Kramer" <skra...@cinci.rr.com> wrote:

> "kh" <tch...@yahoo.com> wrote in message

> > ()-()


> > \"/(""""}----*
> >  `  ^^ ^^
>
> Okay, I give up.  What's the asterisk mean?

* = to be continued. Steve, this has been "A WEEK." I will deliver
an update in the next day or so. I don't have my PSA yet. The Wizard
changed my pain meds. We will beat this thing. 2 days until the FDA
rules on Provenge. I've asked for a new rat hat.

-kh

Lud

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Apr 29, 2010, 9:50:11 PM4/29/10
to

Thrush is really awful - did they suggest scraping your tongue? - I
couldn't do that trick.

Aranesp is real slow in kicking in with chemo - the response took
longer than 3 weeks - I know that by 6th week it had finally bounced
back after multiple doses. I just learned recently that when taking
iron, you need an acid stomach. Since I am acid suppressors (Zantac) I
take a vitamin C with the iron.

I can appreciate your allergy misery - been there - the real bummer is
everything at work. Great going trooper - I'm how you can still write
so cheerfully - Good Luck.

BTW, Provenge is approved, I hope you can get it soon.

Lud

Sue Mullen

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Apr 29, 2010, 10:26:19 PM4/29/10
to

Great news and I also hope KH can get it!!

sue

Steve Kramer

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Apr 30, 2010, 8:14:06 AM4/30/10
to
"kh" <tch...@yahoo.com> wrote in message
news:9a899892-9d5c-4565...@q30g2000yqd.googlegroups.com...


==> Ah! I cliff hanger


kh

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May 2, 2010, 11:26:22 AM5/2/10
to

This is your week 12.5 report of the IV Mitoxantrone-chemo adventure.

The two units made a big difference. I am able to walk 3 blocks and I
feel stronger.

I had one bad morning incident of gasping for air but I had my inhaler
next to the bed and took 3 hits, I popped 1.0 mg of Decadron, and had
a coke chased by a cup of coffee. It's the tree pollen, which looks
like it's about over but perhaps it's not.

In the morning, my throat is closed off, dry, and I can't move any
air. The inhaler helps. I hack up large amounts of thin mucus for 10
or 15 minutes.

Then I'm fine. It is scary

I am glad that the FDA has approved Provenge. The 4 months median
survival is about the same as Taxotere. I got much more than 4
months from Taxotere.

I hope my insurance will cover Provenge. If not, I will scrape
together the money somehow.

Dendreon has enough manufacturing capacity for only 2,000 men in
2010. If I'm not in the 2010 group, so be it. I expect that the
Mitoxantrone will hold me for a while. After that, there's
Abiraterone, Ketoconozole, and other options.

Gang, Dendreon's Provenge is just the start. Brave men are rolling up
their sleeves for trials.

-kh Provenge is just the start.

Steve Kramer

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May 2, 2010, 12:52:52 PM5/2/10
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"kh" <tch...@yahoo.com> wrote in message
news:c837a8bb-e52f-475e...@24g2000yqy.googlegroups.com...

> ()-()
> \"/(""""}----/
> ` ^^ ^^

Nice to see your tail again, Warrior Rat!

--

kh

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May 14, 2010, 5:28:17 PM5/14/10
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This is your week 13 report of the IV Mitoxantrone-chemo adventure.

I am able to walk 2, 3 blocks.

I have not developed any new problems. Most of the old problems are
still there, weakness, exhaustion, little strength, back pain. I have
an ugly bruise on my left arm.

I don't need as much sleep as I did before the 2 units. I am getting
enough rest.

I finally took the snow shovel out of my car. For a while, it seemed
like too much work to get the shovel.

I have a chance to be in a small trial. They are collecting blood from
men who have had biopsies and will correlate blood trace factors with
the biopsy. The goal is to perform a biopsy with just a blood draw.
They asked if I would participate. Of course.

I still gasp for air in the morning in the morning. It might be
related to the Mitoxantrone or the cancer and not tree pollen. I keep
my inhaler, water, and my antihistamine pills
handy.

The urge to throw up has returned, it is supposed to be a side effect
of the Mitoxantrone.

I have aches all over my body, joints, hips, back. Turmors. With 20
mg of pain med in the morning and evening it is tolerable. I have no
strength, no appetite, my weight fell to 138.

The infusion did not happen. JHU did not like my reds and they said
simply, "We are close to permanently damaging your ability to make red
cells."

They booted me off Mitoxantrone-chemo and said that we have run out of
options.

I asked them to consider Kenoconzole or Abiraterone. They are
thinking about it.

My feet are retaining fluid. JHU says it's the steroids.

-kh Mostly bad news. Sorry.

()-()
\"/(""""}-\/\/\
` ^^ ^^

I.P. Freely

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May 14, 2010, 8:52:25 PM5/14/10
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kh wrote:
> I still gasp for air in the morning ... I keep

> my inhaler, water, and my antihistamine pills handy.

We're impotent to help you with your very impressive cancer battle, but
maybe I can help with the allergies: antihistamines must be administered
before allergen contact to work. Antihistamines lock receptor doors at
the cellular level, but once the allergens are inside the cells, locking
the door is ineffective. If you start today taking them regularly, they
will start working for you within a week or two. If I don't begin mine
long before spring pollens appear, my penalty is a week or two of
intensely itching eyes followed by blessed relief when the allergens
that preceded the cell locks are defeated.

I also block the allergens with three keys: a systemic generic Claritin,
a generic antihistamine eye drop, and a generic antihistamine nasal
spray, all available at Walmart. Beats the heck out of the years of
allergy shots I took.

I.P.

Steve Kramer

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May 15, 2010, 7:46:57 AM5/15/10
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Sorry to read this, kh. I can't imagine what it must be like to be told,
"we have no other options." I know that all of us T3s and T4s will be told
that at some point, but I have a hard time imagining the feeling.

How about your PSA? Did you ever have a reduction with Mitoxantrone?


"kh" <tch...@yahoo.com> wrote in message

news:b8ef22f6-5a86-4d59...@v37g2000vbv.googlegroups.com...

--
skramer remarks

Lud

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May 21, 2010, 9:49:59 PM5/21/10
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What a bummer!!! - disappointing about JHU, why can't they do better.
Have you seen the info on www.hrpca.org - there are a lot od options
there. There is DES, recent study showed synergy with Taxotere.

Have you had Aranesp to boost your red cells (worked for me) and need
to add iron pills with that.

Do you have a prescription for compression socks (30-40 mm
compression)? - they are are a great help for swollen feet. How is
your albumin levels - are they low?

I'm rooting for you!!!
Lud

Alan Meyer

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May 22, 2010, 12:42:07 AM5/22/10
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On 05/14/2010 05:28 PM, kh wrote:
>
> This is your week 13 report of the IV Mitoxantrone-chemo adventure.
...

> -kh Mostly bad news. Sorry.

You have taught us a considerable amount about cancer kh, but I
think we've also learned a lot from you about what it means to be
a great human being.

I think of you often, of your courage, your spirit, and your
ability to rise above your terrible situation. I, for one, will
never forget you. I'm sure many others here feel the same way.

Perhaps one of the other options you've mentioned, ketoconazole
or abiraterone, will do something for you. Even if not, you've
still got a little time left, and I know you'll find good things
to do with it. I know that many of us will be very interested to
read anything you care to write.

I salute you.

Best of luck to you and to your family.

Alan

Steve Kramer

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May 22, 2010, 7:54:15 AM5/22/10
to
"Alan Meyer" <ame...@yahoo.com> wrote in message
news:ht7nb1$108$1...@news.eternal-september.org...

> On 05/14/2010 05:28 PM, kh wrote:
> >
> > This is your week 13 report of the IV Mitoxantrone-chemo adventure.
> ...
> > -kh Mostly bad news. Sorry.
>
> Count 1: You have taught us a considerable amount about cancer kh
>
> Count 2: We've learned a lot from you about what it means to be
> a great human being.
>
> Count 3: I think of you often, of your courage, your spirit, and your

> ability to rise above your terrible situation.
>
> Count 4: I will never forget you.
> Count 5: I will be very interested to read anything you care to write.
>
> Count 6: I salute you.

I concur on all counts!

As to Count 5, if you are not up to it, if you can have another let us know,
or even a simple email to skr...@cinci.rr.com if they don't know about
newsgroups. I'll pass it along.

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