CML

---
Hi Rebecca:
Have you had your platelets checked. It may be lowered platelets
which may just occur at the relative beginning of treatment, and in
some cases, later, as with me.
MJH

Hi,
The rash can be a Gleevec side effect and sometimes it does not come on
right away.
Not sure about the bloody nose and the bruises. Have you had frequent CBCs
done
and are you low on platelets?
I don't think any of these symptoms indicate that the drug is working or
not (that info you
get from a bmb, FISH or pcr)........but you need to contact the doctor
about your new
symptoms.
Nancy C.

Hello Skip,
Thank you so much for posting to the group. Twenty-seven years is marvelous and
marvelous to hear about. It's only been two years since my husband's diagnosis
and even though he started on Gleevec, he still has in his mind that not too
long ago the average life expectancy was about 5 years from diagnosis. You've
obviously proved those estimates wrong. Do you mind my asking what sort of
trouble you've run into now that you're on Gleevec. If you've already answered
this question, I apologize. I've been off the list for a few days.
Continued long life!
Adrienne
skipd_2002 <skipd@...
Hi just a thankyou to Zevie for inviting me to this group
diagnosed 27 years ago.. was on myleran for 26 years ran into trouble
now on Gleevec..
It is only with the heart that one see rightly
what is essential is invisible to the eyes..
Skip
SPONSORED LINKS
Chronic myelogenous leukemia Individual medical Cml Health professional

hello all. I've been taking 400 mg Gleevec since April. First several
weeks, I had a lot of fatigue and joint and bone pain. That subsided,
and NOW, all of a sudden, I'm getting bloody noses, rashes, frequent
small bruises. Does this suggest the Gleevec isn't working anymore or
that it's working better than ever -- or neither?

Hi all. I'd like to echo Nancy's sentiments about being on a red cell
booster. I just returned from MDAnderson from having a stem cell
harvest and I was on massive amounts of Neupogen. I took 960 mgs
twice a day. One of the things Dr. Korbling - the apheresis dr -
shared with me - is that there is a *rare* association of blood clots
with Neupogen/Procrit, etc. but it's very rare. While I had my
harvest, I had a blood thinner via IV while I was on the apheresis
machine (this is part of the protocol for MDAnderson's harvesting I
understand)
Just wanted to share my experience and what I've heard.
Hope this finds everyone doing well . . . and for those of you in
Louisiana - we are thinking of you and sending good thoughts and
prayers your way! Hopefully Katrina will find some other place to play!
Hugs to all,
Barbara Heathcote

Wow Skip, you must have the record for logevity! Welcome to the
group. I can't imagine being on Myleran for that number of years.
Why didn't they give you Gleevec when it was first approved in
2001?
By the way, the chats happen on Tuesday nights and Saturday mornings
but I think the Tuesday evening chats are much more popular than the

Hi just a thankyou to Zevie for inviting me to this group
diagnosed 27 years ago.. was on myleran for 26 years ran into trouble
now on Gleevec..
It is only with the heart that one see rightly
what is essential is invisible to the eyes..
Skip

where is the room located..in Health or what
Skip

Hey Lisa:
I was at a festival last weekend while visiting my daughter and Gena Soeder,
Campaign Coordinator of the Northern OHio Chapter of LLS.org had the ribbons.
They are red & white. Her contact information:
Tele: 440-67-CURE(2873)
Toll free: 800-589-5721
fax: 440-617-2879
email: soederg@...
I'm sure they have a similar contact person in your area. I was thinking about
selling them, but I am not working and therefore, I would be limited in the
number of people I could sell them too.
This is a fund raiser that we could get started and do as a united effort.
"K"
"I AIN'T FINISHED YET"!!!

Hi:
Whatever is on the thigh is unclear, whether it's a hematoma or a small
tumor. I will have an MRI. I hope it's a small hematoma that will
recede, thanks, MJ

Good Morning folks,
Back from a "Mini" Spiritual retreat and feeling refreshed and ready for a
vacation next week.
Good health to all!
Cheers,
Cheryl-Anne
Meeting Leukemia's Diagnostic Challenge
Tests that distinguish among the disease's many forms either cost too much
or don't exist. Dr. Torsten Haferlach may have a solution
Meeting Leukemia's Diagnostic Challenge Tests that distinguish among the
disease's many forms either cost too much or don't exist. Dr. Torsten
Haferlach may have a solution
Crusaders for personalized medicine are discovering that the single biggest
barrier to their quest lies in the mind-boggling complexity of disease
itself. For the last 21 years, internationally renowned leukemia expert Dr.
Torsten Haferlach has spent seven days a week, 18 hours a day, conducting
cutting-edge research into the disease and treating patients.
But over the last decade, the 46-year-old German's job has grown a lot
tougher. Huge advances in genetics and molecular biology have revealed that
leukemia, a cancer of the blood and bone marrow, is not just one disease but
four. Within these exist 50 subtypes, each with its own unique genetic
signature -- and requiring a different prognosis and treatment.
BUDGET LIMITATIONS. As a result, testing for leukemia is complicated,
expensive, and often inaccurate. The best labs rely on as many as a dozen
different, labor-intensive technologies, all of which require highly trained
specialists. Even so, perhaps 50% of patients are misdiagnosed in regard to
subtype.
Part of the problem stems from the steep cost of the various technologies
used to diagnose leukemia today. Limited by their budgets, labs use only a
handful of diagnostic methods at best.
Take chromosomal analysis. Viewed as crucial in helping doctors choose the
right therapy for leukemia patients, it costs several thousand dollars per
patient and calls for highly experienced technicians to interpret the
results. Because of the price factor, fewer than 10% of leukemia patients in
the U.S. undergo it, says Dr. Claudia Schoch, a cytogeneticist and
Haferlach's research partner.
ZEROING IN ON SUBTYPE. This will soon change, asserts Haferlach, who
recently started the Munich Leukemia Lab after seven years of running one of
the world's largest leukemia diagnostic labs, at the University of Munich.
He's working with Switzerland's Roche Diagnostics to develop a new genetic
test that promises to dramatically improve the diagnosis and treatment of
leukemia by offering the first detailed picture of the specific genetic
defects behind each of the subtypes.
Using a tiny silicon chip from Santa Clara (Calif.)-based Affymetrix (AFFX
<javascript: void showTicker('AFFX')
bone marrow, the chip simultaneously screens up to 400 genes implicated in
leukemia and finds the exact variations that cause the different subtypes.
In clinical studies, the test has proved more than 95% accurate. Roche
expects to launch the test in Europe by the end of 2006.
FEWER TRANSPLANTS. Although no price has been set, it will likely be much
cheaper and faster than existing diagnostic methods, which cost an average
of $2,400 to $4,800. Instead of waiting a week or more, patients would get
their results within 48 hours. Haferlach believes this advance alone could
make the difference between life or death for many patients. "You don't have
time to waste in diagnosis," he says.
Getting the diagnosis right the first time also will help health-care
providers and patients save money by avoiding unnecessary or inappropriate
treatments. And considering bone-marrow transplants, a commonly used
leukemia treatment, cost around $260,000, savings could be substantial.
The genetic test will not only provide more rapid and accurate diagnosis of
the subtypes with which researchers are familiar but also eventually be used
to identify new ones, says Haferlach. Armed with that knowledge, scientists
can begin to develop targeted drugs designed to treat each of the various
subtypes.
ONE PATIENT, THREE CANCERS. The knowledge of the specific genetic mutation
causing chronic myeloid leukemia, for instance, led to the development of
the Novartis (NVS <javascript: void showTicker('NVS')
Gleevec four years ago.
Such a test represents a huge advance in diagnosis, especially for patients
with no clear distinction among the various subtypes. Take Haferlach's
patient Hermann Michael, the 68-year-old former music director of the
Phoenix Symphony. In 1999, he was diagnosed with severe aplastic anemia, a
precursor to leukemia.
A few years later, his disease had evolved into a combination of three
different ones, including acute myeloid leukemia, which can cause death
within weeks without aggressive chemotherapy. Michael has lived nearly three
years without it, taking a daily cocktail of 10 different drugs.
SUCCESS AND GRATITUDE. "Because he seems to have three different diseases,
I knew that going in with all guns blazing and giving him chemo could hurt
or even kill him," Haferlach explains. "Without having the kind of detailed
analysis we are able to do here, other doctors might have given him chemo
just to do something."
Haferlach is confident that the gene test will enable doctors to accurately
diagnose even complicated cases such as Michael's. Until then, Michael
remains one of the lucky ones. "Dr. Haferlach is my personal hero," he says.
"I owe him my life."

Hi Susie,
I too have joint pain. I take Celebrex and it really does help me.
This is one of the drugs that can cause heart problems. I checked
with my cardiologist as well as my other doctors and it was deceided
that there was little risk, at least in my case, and countinued to
take Celebrex. I have taken Celebrex (400mg daily) for two years now
with no problems. Check with your doctor and see if you could at
least try Celebrex, but make sure your doctor feels it would be safe
for you.
Take care,
John M

Hi Larry et all,

Zavie is part of this group but he's on vacation right now. He'll be
back in a week.
Tracey

Hi MJ,
I know that Jennifer recently reported that she had some blood clots
and Kat from Austrailia had them too a while ago. I don't know if the
clots have been proven without a doubt to be due to Gleevec though.
Good luck,
Tracey

bloody nose ... very awkward when I'm at work.

Chronic myelogenous leukemia Individual medical Cml
Health professional

Hi:
Some people have been writing about having blood clots or
conditionswhich appear to be blood clots. I have a huge, huge bruise--
ugly and all on the inner right thigh. I've had this bruise for about
seven weeks. The primary care doctor thought it was a superficial
thrombophlebitis. To check it out, she sent me for an ultrasound to
rule out a clot in the vein. I had that done yesterday. As I haven't
heard anything, I'm assuming it's not a clot. However, I'll call
tommorrow just to make certain.
My platelets are low, aobut 64000. Wonder if anyone else has had
vascular problems, and how much it is connected with the gleevec.
Thanks, Mary Jean.

Hello,
My name is Lisa & I was diagnosed May 2000
I was on Hydrea for the first few weeks and then Interferon and ARC for 1
year while waiting for Gleevec to be approved.
Thankfully it was approved within a year after I was diagnosed and I
Started Gleevec in May 2001.
At the start of all of these medications the counts tend to plummet but the
real job of the medicine is to get the white count down to normal.
But like any other chemotherapy and yes Gleevec is considered a form of
chemotherapy, the other counts drop as well.
My oncologist had me return to the Lab every day for the first few weeks and
adjusted my medicine accordingly. Sometimes going lower and some days just
not taking any. Once my counts stabilized, as most of ours do, there were no
adjustments and less frequent monitoring. This took only a month or so for
me. But some of the others do take longer in getting certain counts under
control.
However, once I started Gleevec 400 mgs, the same thing happened. But before
stopping we tried off 300 for so many days then added 100 back in every
other day for a few weeks until the counts were back up to normal range.
With the exception of my RBC's I was unable to get them to my max @3.4 until
just last year. Finally my body has adjusted to the 3.4 and I ma doing
great.
Almost all side affects have subsided with the exception of peripheral edema
(puffy eyes) but drinking plenty of water helps with that. And Muscle
spasms.
Although the spasms were almost gone for sometime with the exception of my
hands and an occasional one in the calf, it took a few years for it to go
away and now I find that I am getting them very frequently in my abdomen.
I had less than 5 % blast @ my initial diagnosis and became PCR negative
after only 60 days on Gleevec.
Overall, my quality of life is very good and I am grateful for Gleevec.
I do believe that it takes a while for the body to adjust to, but I also
understand that your husband has 30 % blast which would indicate
acceleration.
I did not have a sibling match but was fortunate to have found one in the
registry even though they say I have a rare HLA. However, I opted not to
have a unrelated BMT and I am comfortable with my decision.
It's really great that your husband has a match with his brother.
A brother that's a match, a will to survive and a great supporter like you,
Is just what a person needs when heading forward with a BMT.
There's lot's of love and support on this list. And a whole lot of real
experience.
I think your husband's doctor does know what he's doing, unlike some of the
horror stories I read on here from other patients.
I also believe that your husband has the right to make his own choice no
matter what country he is in.
God Bless and try to relax just a bit so you can consume more and get into
your husbands head a bit more...
Just one valuable lesson we controlling people need to learn:)
Lisa age 40
Dx 5-2000
Hydrea/interferon/ arc
Gleevec 6-2001 8-2001 PCRU
Waiting for new results -next month
Message: 3
Date: Mon, 22 Aug 2005 10:47:51 -0000
From: "rockgal70" <sherryryan@...
Subject: Re: New to your group - dh experiencing Gleevec intolerance
The phase of his disease is being questioned in Halifax because he
has no enlarged spleen, nor has he been ill. However, he had almost
30% blasts. Things are not as they are normally seen in CML in his
case, so there have to be some assumptions. The Gleevec was stopped
early on this run with it because of how quickly the platelets are
dropping - drop of 40 in 2 days is pretty indicative of an adverse
reaction. This is our third attempt with a lower dosage of Gleevec.
Also, as I have said, I don't think our doc agrees with this process
but hasn't said so. we have been given the pros and cons... bmt
specialist in Halifax does not want to do the transplant until Lorne
has 3 consecutive months on Gleevec, which he has been unable to
do.

Of interest to some:
Reported August 24, 2005
Vaccine for Some Leukemia, Lymphoma Cancers
(Ivanhoe Newswire) -- New research shows it may be possible to treat
some blood cancers with a vaccine. Researchers at the University of
Texas M. D. Anderson Cancer Center and the National Cancer Institute
found a new vaccine can help the body mount its own defense against
an aggressive form of lymphoma.
Researchers say their findings are not only important for the
specific type of lymphoma they tested but also for other kinds of
blood cancers, such as leukemia.
Treatments for lymphoma destroy the body's B-cells, which are white
blood cells that produce the antibodies that tell the immune
system's T-cells to fight off diseases. It was previously thought
that once the B-cells were wiped out, a vaccine for lymphoma would
be ineffective. It's as if the B-cells were the telephone wires that
helped the vaccine call the immune system to tell the attacker T-
cells to get to work. It turns out the vaccine can make a "cellular"
call to the immune system without the B-cells.
"This is the first human cancer vaccine study to see T-cell
responses in the absence of B cells, and this paves the way to use
vaccines in a number of hematological cancers that are treated by
eliminating diseased B-cells," says the study's lead author, Sattva
Neelapu, M.D., from M. D. Anderson.
The researchers tested their experimental vaccine on 29 patients
with mantle cell lymphoma, a difficult-to-treat cancer. All of the
patients had received treatments to destroy their B-cells. They
report an 89 percent survival rate for 46 months after administering
the vaccine. Researchers say this is an impressive survival rate for
this type of cancer.
Researchers say more testing and improvements need to be done before
the vaccine will be available.
This article was reported by Ivanhoe.com, who offers Medical Alerts
by e-mail every day of the week. To subscribe, go to:
http://www.ivanhoe.com/newsalert/.
SOURCE: Published online in Nature Medicine, August 21, 2005/
doi:10.1038/nm1290
Hope this finds everyone well!
Barb

Hi its been awhile since ive posted..but im asking for some comfort
in
the decision that ive made. I was diagnosed nov 02 and went on trial
with 600mg. Obviously he wasnt happy as he six months later put me on
800mg. After trial he put me down to six. Since I started Gleevec
besides vomiting and diareah I have servere Joint aches. They just
dont seem to be getting any better. Well now he is saying I can go
down to four tabs but not by his choice but said for me to choose
quality over quantity. He is worried though that four wont hold my
Leukemia cell and if it starts to go up it wont be so simple just
adding the extra gleevec. He is worried it will go to Acute. I came
home all disolutioned and although my hubby wishes for me to stay on
6
ive now gone down to four as I just cant cope anymore with the pain
that I get...Has anyone else had this side effect or have had same
experience with the doctor....I feel now he is doing his own little
trial to see whether i stay chronic on 400mg.
Susie Dxd 2002

Hi Susie,
I can't really help with suggestions about the joint pain because I don't
experience that, but others on the list who have that problem will respond
and let you know what they do. A small % of people do have severe
bone/joint pain on Gleevec....which might even be a valid reason to switch
to another drug (like BMS or AMN) when you have that option.
I do have a couple questions about your dose. When you started, was there a
particular reason that you started on 600mg (like any signs of being late
chronic or accelerated) or what this just a trial.
The usual dose for chronic patients is 400mg and many stay on that dose.
What has your response been on 600mg.......are you CCR? neg FISH? what
level of remission have you achieved?
Many people (I think at least 1/3) who started a chronic trial at 800mg
could not stay on that dose and had to have it reduced....so you are not
alone. I have known patients who got a good response at a higher dose, then
lowered the dose because of the side effects and they are doing fine. So
the answer to your question really depends on the kind of response you have
had to Gleevec.......and if you have any sign pointing toward acceleration.
There is no reason that someone can't try a lower dose, and then later
increase the dose again.
are you getting pcr testing done? this gives you a number to follow and you
can tell you response to treatment. How often do you have any
testing.....like bmb? fish? pcr?
Again 400mg is the standard dose for chronic phase CML....and most folks
are being treated on this dose.......so your doctor needs to give you real
'reasons' for what he is saying.
Nancy C.

Hi Lynn,
Thanks for the chuckle.
At least you included the blueberries.....good for the eyes.
I am thinking of having french toast made with cinnamon-raison bread
with some blueberry sauce for lunch.
Maui Nanc

Hi everyone,
Well how's this for a Gleevec Moment....
While making fresh, blueberry waffles for my family this Sunday
morning, I got out what I thought was the waffle iron from the pantry.
Just as it was warming up, my dear husband says,, "Honey, what are you
doing?"... Well, I"m making waffles..I said.. "In THIS? LOL"... He
laughingly pointed out that I almost starting pouring waffle batter
onto the George Forman Grill! Whoops! That would have been an
interesting waffle! :0
Chuckle,
Lynn (Snickersunny)
Dx- 12/03
PCRU
400 mg's

When Lorne started taking it, he too was nauseated. We tried some
old fashioned morning sickness remedies and they helped - if you're
interested in staying away from taking another drug to settle your
tummy. Try small chips of a peppermint candy and hold it in your
cheek. Flat ginger ale - ginger and peppermint are natural anti-
nauseants. And eating something heavy with the pills helped Lorne
not feel so bad, especially if he did it right before bed. Luckily
THAT side effect went away for him. Hopefully you'll feel better
soon...

Hi Barb,
I bet you are glad to be back home.
There should be no problem ramping back up on the drug, the 400mg alone is
a therapeutic dose.
I'm not sure I could ever take 800mg all at once.....my dose is split
between 2 meals. Now with the new scored pills, sometimes I do 600mg at
lunch (if that is big)....then I don't need such a big dinner. I like that
I can juggle the dose a bit....just get the total of 800mg ingested in the day.
Thanks for sharing your harvest adventure....let us know how your cells
test out.
love, Maui Nanc

In a message dated 8/20/2005 4:57:44 P.M. Eastern Daylight Time,
bheath@... writes:
Wondering if anyone has any thoughts if I could be asking for trouble
with this methodology?
Also - for those of you who are curious - my 'eye bags' have already
returned!!! So much for losing the periorbital edema
Barb, what does your oncologist say about splitting the dose? I don't think
it's a bad thing to work your way back up, that's a hefty dose at 800!
Anyway, I know just how you feel. When I start back up on my dose I cannot keep
it
down either, so I asked for some Compazine. It really helps me, though it
does make me sleepy. I find that I have to use it a lot lately, sometimes my
body rejects the Gleevec for days.....I find especially if I am overtired and
stressed out I cannot keep it down. I had a bad morning today and could not
keep my dose in, so I have to start tomorrow. I'll say a prayer for you that it
goes smoother this time, I hope you feel better by the end of the week. I
started taking the Bilberry extract again and it really helps with my Gleevec
eyes. I also recommend asking about the anti-nausea med.
God Bless and I will be praying for you! love, Lynne A.

Hi all. Just wanted to drop a line and check in. As you all know,
I went through a stem cell harvest at MDAnderson and had a month long
Gleevec break. It was a nice four weeks not having to take my Gleevec
and worry about nausea. I even lost a bit of weight and the swelling
below my eyes went away. I started back on my 800 mgs of IM last
Friday and didn't have such good luck keeping it down the first night.
I was very sick. The next night was better and I've decided to start
out for the next week on 400 mgs and work my way back up to 800 mgs so
my body doesn't get a jolt.
Wondering if anyone has any thoughts if I could be asking for trouble
with this methodology?
Also - for those of you who are curious - my 'eye bags' have already
returned!!! So much for losing the periorbital edema
Thanks all and hope this finds everyone doing well!
Barb

Hi all... I'm Sherry and my dh (age 37) was dx just 4 months ago
with CML - ph+, accelerated phase. He started the "wonder drug" and
has not done well with neutropenia and thrombocytopenia. All the
same he has dropped form 88% to 28% leukemic cells present in FISH.
His second PCR was drawn yesterday.
I'm just wondering if anyone has had the level of intolerance he is
experiencing with Gleevec and how low the docs actually dropped the
dosage? He started on 600mg, and within 2 weeks platelets were at 15
and neutros at 0.5. Once he recovered, dosage was dropped to 400mg
and the same thing happened after 18 days. During his last drug
holiday, with plans for one more shot at 300mgs, my husband asked
the direct question if 300 causes the same response, can we try 200
and the doc said NO. 200mg would not have an effect on the cancer,
so we would then have to discuss moving forward with the bmt (we
have a related doner, hooray!). This week, Lorne had to stall the
treatment again because of thrombocytopenia and doc wants him to try
200mg once his cbc has recovered. ??????? So which is it - I don't
think we are getting all of the info that is being discussed between
all of the medical players. They want to try anf build up his
tolerance to the drug.
I have been doing some research and so far have not found one
reference to a dosage of less than 300mg. Not only that, but all I
have read indicates that in the accelerated phase, this course of
action is not recommended at all. I need to know the rationale
behind this new plan and my dh is happy to just follow doctors
orders, no questions asked. I need fuel for my fire - so to speak. I
can't make him understand that he should be informed of any varying
opinions among the medical team and then WE can make an informed
decision.
Please email me if you have any info to share... thanks
Sherry

Hi Sherry,
At 4 months, you seem to have a really good understanding of CML and issues.
How high was your husband's white count at diagnosis? that gives some idea
of the
number of leukemia cells that need to be killed off.....before he can
'uncover' some
normal cells. He has had a good response to Gleevec (IM) so far....and you
are right,
300mg is usually considered to be the lowest therapeutic dose.
First, I would want to know how many CML patients his doc(s) have worked
with, which
tells you their level of experience with Gleevec. You can give 'boosters'
for the white
count (neupogen) but there are not acceptable 'boosters' for the platelets.
When patients
are having a trickier situation with Gleevec, that is when consulting with
a cml specialist
and having them direct care can be worthwhile.......2nd best would be to
have his doctor
consult with one. Don't know where you live, but many people travel to see
Dr. Druker
(or his associate Dr. Mauro) at OHSU in Portland, Oregon......who you may
know developed
Gleevec. Then Dr. Druker makes the treatment decisions.......but you do
local blood tests
and have the results faxed to him. There are also other cml
specialists.......I just personally
know that patients get top care at OHSU and we have folks on this list you
travel to Oregon
from the east coast and Florida to see him.
Personally I think a good doctor always involves the patient in the
decision making....and lays
the options (pros and cons) on the table. Right now your husband needs you
to be his advocate...
he may just be too stressed with the dx to be actively involved. Hope some
of this info helps,
please continue to ask the list questions.
Nancy C.
cml oldtimer, on Gleevec since 2-2000

Y A H O O O !!! Y I P P E E !!!
Number 881 in the Zero Club
Zavie

Hi Joan,
Welcome to the "Ugly Eye Club." I got my first eye bleed this past
month, and it took 2 1/2 weeks for it to completely go away.
I think I got mine because it was very hot outside and I don't deal
with heat very well. I also strained to lift something and I think
the combination of the two did it for me. When I came home, my kids
met me at the car and said, "Mom, what happened to your eye?".. I
didn't feel a thing. I looked in the mirror of the car, and.. "Oh
MY!.. For myself, I continued Gleevec, and my blood work is all fine
too.
Some others on this list have had bleeds too, so take comfort.
Everyone kept asking me what happened so I chuckled and said,, "Oh, I
trying out something creepy for Halloween. What do you think?" You
have to have a sense of humor, but I completely understand how you
feel. Feel better. ;-)
Take Good Care,
Lynn
Dx'd 12/03
PCRU

Hi Joan,
It is unnecessary to stop Gleevec because of this eye bleed. This is just a
side effect that some folks have with the drug. It doesn't sound like your
oncolgist has much experience treating people on Gleevec? The eye bleed
does not require any treatment, it will resolve on it's own....and
sometimes it only takes a few days, other times longer.
Nancy C.

Hi all,
Today I had my 1st eyebleed. I was eating lunch with friends and felt a
sharp ping in my left eye and nothing else. When I went to the car and
looked in the mirror it was blood red. I called the oncologist and they
are clueless. My platelets are fine, so is all of my bloodwork from
yesterday. They had just got it back. The Dr on call said I had 2
choices find an eye Dr. asap or go the the emergency room. I told them
I felt it was from Gleevec from what I have read here. The oncologist
told the nurse for me to stop Gleevec until he sees me Wednesday
morning. I called my eye Dr. and she did a through exam and said it was
a blood vessel and would clear, but take longer than I will like. For
the past two weeks I have had 2 nosebleeds. I have been blessed so far
I can't figure out these developments. Personally I don't think
stopping Gleevec is at all necessary. But I will do what he says.I have
not had grapefruit or anything I can blame it on. I have not been very
brave lately.
Joan Porter
dxd 8/00
Zavie # 662

Congrats Pat...........you are a big ZERO now on FISH.
Zavie will be giving you a number and you can celebrate!
Nancy C.

WOOHOOO GO TOM! I'm so happy for Tom and all of your family. Going
home is a great thing! You'll be so much more comfortable and will
feel better. Keep is informed. And give Tom a great big CML sister hug
for me. He is winning one for the team. Prayers and Love!
Amy B.

Hello Everyone,
Been following everyones post and its keeping me very busy. I got my
fish results after 6 months of 400mg of gleevac and it was negative
for detection of bcr/abl. My ANC is 2.875. So I am very happy with
my results. The next visit is in 3 months for the PCR test. Things
are moving along yet I have had some weight gain so starting to get
with the program before I hit my 43 birthday in November. Getting
ready for school for the kids and running my business is keeping me
occupied so I don't get into a depression. Want to Thank You all for
the knowlege of this disease (my onc was impressed) and help you have
all given me.
ThanK You,
Dr. Pat
Dx 3/05
400 mg

Hello, all.
Thanks for your support throughout Tom's transplant journey. Tom is day
105 post transplant and going home tomorrow. An exciting and scary
time. Still have to go get CBC each Monday near home and return to
Minneapolis each Thursday for BMT clinic. What a journey. Praise be.
http://www.caringbridge.org/wi/tomneddo
Barb Neddo,
Mom to Tom,
dx CML 8/13/04
MUD BMT 5/05/05
Home on 8/19/05

Best wishes, Dane for continued increase of donor cells and just enough GVHD to
take effect. In the interim, back away from that ledge! You're NOT a mountain
goat!
Susan L

Hello all, have not posted in a while. I just returned from a family reunion in
Granby, Colorado.
I decided to leave for Colorado a week early and take a slow drive north, making
frequent stops for fishing and photography. It was a glorious week all by
myself in God's Country! I then picked up my family at Denver Airport and
continued on to Granby for the reunion.
I had my July tests just before I left, and decided not to inquire about the
results until my return. I just wanted to shut all that off and enjoy my trip.
Anyway, I came home to very good news. My test results in May showed a heavy
drop in my post transplant donor cell percentage: only 80%. This caused my onc
to stop all anti rejection meds to try to rev up my new auto-immune system. The
sudden stop also increases the risk of severe GVHD.
I showed up for my June test with no outward signs of GVHD, thinking that I was
still shedding off the graft. Those test results came back 80% donor cells
again. The oncs said this was good news, as the percentage was the same as in
June, not less.
July passed with still no outward signs of GVHD, but the tests at the end of
the month were much more encouraging. I am back up to very close to 100% donor
cells and my BCR-ABL via PCR was down to 0.27 from 1.02. Apparently, stopping
the Prograf helped restore my donor cell count, which means the transplant could
be "taking hold".
Now I am left with a bit of a "champagne problem". I started back on Gleevec
shortly after the transplant because my bcr-abl number was increasing. I slowly
worked my way back up to 800mgs. Now that my donor cell percentage is back up
and my bcr-abl is back down, I have no way of knowing if it is the Gleevec or
Graft versus Leukemia (or both) that is reducing the bcr-abl level. I will
discuss what to do about this with my oncs in Houston on August 23rd.
Best regards, Dane
Here is one of the better shots from my trip, taken up on Mt. Evans, Colorado at
about 14,000ft.
http://www.fototime.com/A7DD3398387FF9E/orig.jpg

Stem cells promise medical miracles, but there's a dark side, too
By Scott LaFee
UNION-TRIBUNE STAFF WRITER
August 17, 2005
<http://www.signonsandiego.com/uniontrib/20050817/images/quest.jpg
Photo Researchers
It's probably not surprising that cancer stem cells (top) bear a remarkable
resemblance to stem cells (above). A new wave of research puts stem cells
gone bad at the root of many cancers.
Human stem cells boast a kind of immortality. They are able to precisely
copy themselves, over and over, for our entire lives.
We shed and regrow our outer layer of skin cells once every 27 days or so -
roughly 1,000 new skins in the average lifetime. But the stem cells from
which those outer skin cells originate are essentially the same ones we were
born with - and the same ones with which we will die.
It's this enduring quality, combined with their remarkable ability to
develop into almost any kind of cell needed, that has elevated stem cells to
iconic medical marvel, the means one day of perhaps repairing - even
regenerating - tissues and organs damaged and destroyed by disease, accident
and age.
But there's a dark side to this power of self-renewal. It's called cancer.
And evidence grows daily that many - if not all - types of cancers are the
consequence of normal stem cells gone bad.
"To use a Star Wars analogy, it's Jedi Knights and Darth Vader," said Dr.
Evan Snyder, director of the Stem Cells and Regeneration Program at the
Burnham Institute in La Jolla. "Normal stem cells have these amazing powers
to differentiate into other cells, to move about the body, to go where
they're needed. Cancer stem cells have the same skills, but they use them
for evil."
Think of cancer as a disease of uncontrolled self-renewal, said Tannishtha
Reya, an assistant professor of pharmacology and cancer biology at Duke
University. Normal stem cells renew themselves under precise and carefully
regulated conditions so their progeny are exactly what is intended and
needed. Cancer stem cells do not. They simply grow amok, producing countless
lesser copies that corrupt and may eventually kill. A tumor is, in this
sense, really just an aberrant organ.
For decades, researchers have focused on treating cancer through reduction.
If a therapy killed cancerous cells, if it reduced the size of a tumor, it
was deemed a success. Clinical trials to test new cancer drugs were - and
are - largely based on how well they reduce the number of detectable cancer
cells or shrink tumors.
The tragedy, of course, is that such victories are often transient. The
cancer returns, sometimes worse than before. "There are many things that
shrink tumors," said Dr. Max Wicha, director of the University of Michigan's
Comprehensive Cancer Center, "but hardly any that affect the life spans of
patients."
Again, the villain may well be cancer stem cells, the small subset of cells
that have the capacity to perpetuate cancer and which are resistant, if not
impervious, to most common cancer drugs and treatments. Chemotherapy and
radiation may kill 99 percent of the cells in a malignant tumor, but if the
remaining 1 percent contain cancer stem cells, the tumor will likely grow
back.
"We're talking about a fundamental paradigm change," said Wicha, whose
particular interest is how breast cancer cells grow and metastasize.
"We need to develop drugs targeted at the tumor's stem cells. If we are to
have any real cures in advanced breast cancer, it will be absolutely
necessary to eliminate these cells. What this means for women with cancer is
that, for the first time, we can define what we believe are the important
cells, the cells that determine whether the cancer will come back or be
cured. Before this, we didn't even know there were such cells."
Recent breakthroughs
Wicha isn't exaggerating. Though the idea of cancer deriving from some sort
of "germ cell" was first proposed more than 100 years ago by Scottish
embryologist John Beard, it was largely overlooked until 40 years ago when
researchers noticed that only one in 100 human leukemia cells could
propagate in a Petri dish.
Still, the notion languished until John Dick of the University of Toronto
harvested a tiny minority of cancer stem cells in acute myelogenous
leukemia, the most common form of the disease. These cells, he reported in
1995, were the only ones that indefinitely generated new cancer cells,
fueling the disease's growth.
Dick's work got some people thinking - and looking. In 2003, Dr. Michael
Clarke, a professor of internal medicine at the University of Michigan, and
colleagues discovered stem cells in breast cancer. A few months later, other
researchers reported finding them in forms of human brain cancer.
<http://www.signonsandiego.com/uniontrib/20050817/images/snyder.jpg
JOHN GIBBINS / Union-Tribune
"Cancer stem cells have the same skills (as normal stem cells,) but they use
them for evil." - Evan Snyder, La Jolla's Burnham Institute.
"Now people are looking for stem cells in all the major cancer types," said
Wicha. "There are new reports that they've found them in prostate and lung
cancers. I think it's just a matter of time before we find stem cells
associated with all kinds of cancer."
Cancer stem cells keep tumors growing, but where do these stem cells come
from? In some cases, researchers now say, they may derive from normal stem
cells. In fact, said Reya at Duke, among all of the different types of cells
in a tissue, stem cells may be the most sensitive to becoming cancerous.
The vast majority of mature cells in the human body have limited life spans.
"To become cancerous, these cells would somehow have to accumulate a set of
necessary mutations in a certain order in a relatively short time. They
would need first mutations that prevent death, then mutations enabling
self-renewal," said Reya. "This would seem to be a very hard thing to do.
"On the other hand, stem cells already have long life spans in which they
multiply many times and may thus accrue mutations more readily.
Additionally, stem cells actively self-renew. All a stem cell would have to
do to become a cancer is acquire the mutation that takes the brakes off
self-renewal. This suggests that stem cells may often be the target of
mutations and thus the cell of origin for many cancers."
As odd as it sounds, the majority of cancer cells are not especially
dangerous. They cannot self-renew. They have finite life spans and tend to
die before causing much harm.
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The work of Clarke at the University of Michigan and others dramatically
illustrates the point. Clarke and his colleagues found that only a small
percentage of cells in breast cancer were stem cells, just 1 percent to 10
percent. Mice injected with just a handful of these cancer stem cells
developed tumors. Mice injected with run-of-the-mill breast cancer cells did
not.
"You could inject 20,000 of the cancer cells that don't self-renew and the
mice wouldn't get cancer," said Wicha. "But a relative few stem cells can
cause the disease."
It's become hot science to find new corollaries and connections between
normal stem cells and cancer stem cells. For example, a study by Dr. Gennadi
Glinsky and colleagues at the Sidney Kimmel Cancer Center in La Jolla found
that an 11-gene sequence associated with the proliferation of normal stem
cells appears also to be active in the development of cancerous tumors.
The researchers, writing in the June issue of the Journal of Clinical
Investigation, evaluated 1,122 cancer patients diagnosed with 10 types of
cancer. In patients whose tumors had spread quickly, the scientists found
the 11-gene sequence to be consistently active and the cancer more likely to
be fatal, regardless of type.
A similar finding was reported out of work at the National Institute of
Neurological Disorders and Stroke in Bethesda, Md. There, researchers
identified a particular protein - nucleostemin - that appears to control
proliferation in both healthy and cancerous stem cells by behaving like a
molecular switch, turning cell division on and off.
Fighting back
As evidence mounts that mutant stem cells are the strength and Achilles'
heel of cancer, new challenges come into sharper focus.
One hurdle is actually finding and identifying cancer stem cells. They are
exceedingly rare. In mice, for example, multipotent progenitor cells
comprise just 0.05 percent of bone-marrow cells.
(Stem cells are categorized by their ability to differentiate. Totipotent
cells can become anything. They are able to create whole organisms.
Pluripotent cells cannot create whole organisms but can differentiate into
most kinds of cells. Multipotent stem cells can become only a limited
variety of cells, such as bone or blood.)
Second, they're hard to recognize. Generally speaking, cancer stem cells
look like normal stem cells, and in some tissues, scientists don't even have
a definitive test to distinguish stem cells from other cells.
Picking out the particular subset of cancer stem cells is laborious and
complicated. Researchers extract subsets of cells from suspect tissue and
transplant them to determine which subsets have the ability to propagate and
regrow the tumor. Those that do are, presumably, cancer stem cells.
Simpler methods, of course, are being sought: streamlined tests that would
identify subtle but distinct differences between cells, a chemical signature
or surface protein marker, for example. Researchers are confident they'll
find such distinguishing characteristics, but it will take time.
Even when they've learned how to identify and target cancer stem cells,
scientists will need to figure out how to effectively kill them without
killing healthy cells as well.
"It will be important in any new treatment to spare stem cells like those
found in the gut, brain and bone marrow because without them, you die," said
Wicha.
But stem cells, unlike cells farther down the line of differentiation, are
notably tough. They have to be to live as long as you do. Stem cells have
learned to circumvent apoptosis, or cell death. Factors or conditions that
would kill other cells or induce them to commit suicide do not apply to stem
cells. They appear to be resistant to most current forms of chemotherapy.
In a letter published in the June 30 issue of the journal Nature, a team of
American, Japanese and Australian scientists reported that Gleevec, the
first approved drug to target cancer at the molecular level, reduced
leukemic cell production but did not appear to deplete the population of
leukemic stem cells.
"In all probability, cancer stem cells simply have more protective factors
than other cells," said Snyder at the Burnham Institute.
New or modified drugs may eventually provide part of the answer.
Complementary drugs and therapies might be used to attack different aspects
of the disease simultaneously, such as radiation combined with therapeutics
that disrupt angiogenesis, the process used by tumors to attract new blood
vessels needed for survival.
Snyder has proposed using stem cells themselves as a vehicle of attack.
In 2000, while working at Children's Hospital in Boston, Snyder reported in
preliminary studies that neural stem cells in mice were able to "sense"
brain injuries, migrate to the damaged areas and repopulate the regions with
healthy tissue.
"What if we could use normal stem cells modified to carry anti-cancer
drugs?" he asked. "These modified cells might actually chase down cancer
stem cells and kill them."
In last year's annual meeting of the Society of Neuroscience in San Diego,
Snyder described experiments in which mice with brain tumors received an
injection of human embryonic stem cells modified to carry a gene that
expresses an anticancer molecule TRAIL.
Snyder said the modified cells homed in on the cancer, apparently by
following chemical signals emitted by immune system molecules, and pumped
out enough TRAIL to reduce tumor size by up to 70 percent.
Such a therapy might be particularly useful against intracranial
glioblastoma, an aggressive type of brain tumor that killed one of Snyder's
closest friends. Intracranial glioblastoma is invariably fatal. It cannot be
cured using conventional techniques because the cancer creates numerous
satellite tumors. The five-year survival rate for patients is 5 percent.
Human clinical trials for Snyder's stem cell approach might begin within two
years. He is hopeful such trials will provide proof of concept, if not a
precise treatment.
"The goal is to kill cancer stem cells, which appear to be the root of the
disease," he said.
If that is possible, then there may eventually be no such thing as an
incurable cancer. Tumors and such would be treatable and beatable. They
could be made to go away and never come back.
"And that," said Reya at Duke University, "would be a great thing."
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This sounds interesting, especially the part about troxatyl acting on
the T3151 mutation. However, a Google seach shows that troxatyl was in
clinical studies as early as 2000. So is this really new and exciting?

Structural GenomiX Initiates Phase 2/3 Trial of Troxatyl for the Treatment
of Acute Myelogenous Leukemia
<javascript:void(0)
<http://www.prnewswire.com/rss/main.shtml
SAN DIEGO, Aug. 16 /PRNewswire/ -- Privately held Structural GenomiX,
Inc., (SGX) announced today that the first patient has been enrolled in a
Phase 2/3 clinical trial of Troxatyl(TM), a novel anti-cancer drug candidate
for treatment of acute myelogenous leukemia (AML). The study, with targeted
enrollment of 211 patients at approximately 40 trial centers in the United
States and Europe, is designed to establish the safety and effectiveness of
Troxatyl in patients with relapsed or refractory AML
(http://www.clinicaltrials.gov <http://www.clinicaltrials.gov/
Francis Giles, M.D., Chief of Section, Developmental Therapeutics,
Department of Leukemia at the University of Texas M. D. Anderson Cancer
Center, is a Principal Investigator in the study. Dr. Giles commented, "My
M.
D. Anderson Cancer Center colleagues and I are very excited to be playing a
leadership role in the clinical development of Troxatyl for treatment of
AML.
Our initial clinical studies and additional recent work with this novel
investigational agent have demonstrated considerable promise for treatment
of
both AML and myelodysplastic syndromes, for which there are significant
unmet
medical needs. Among those needs, none are more pressing than in third-line
treatment of AML. We are delighted to have a study focused on this very
refractory population open for enrollment of our patients."
The patients targeted in this Phase 2/3 study are those who are in
second
relapse with duration of second response less than 6 months, or who were
refractory to two previous courses of induction chemotherapy.
About Troxatyl
Troxatyl, a nucleoside analog, represents the first member of a new
class
of anti-cancer agents. Its unique chemical structure confers potential
advantages compared to existing AML therapy in that it is not subject to
common deactivating mechanisms that can cause resistance to existing
therapy.
In preclinical studies, Troxatyl has demonstrated broad activity against
both
solid tumors and hematologic malignancies. To date, approximately 700
patients have been treated in various Troxatyl Phase 1 and 2 studies in
which
delivery of the drug was by bolus intravenous (IV) injection. Promising
early
clinical results were observed in AML, myelodysplastic syndromes, blast
phase
chronic myelogenous leukemia, renal cell carcinoma, and pancreatic cancer
when
Troxatyl was administered via bolus IV injection.
Recent preclinical work has shown that Troxatyl administered as a
continuous IV infusion (CI) over 4 or 5 days results in significantly
increased drug exposure to the cancer cells. A presentation of data at ASCO
from a recently completed Phase 1/2 CI study of AML patients, most of whom
had
failed multiple chemotherapy regimens and in some cases bone marrow
transplantation, reported an overall response rate of 19 percent. Moreover,
the study demonstrated that a 50 percent greater dose of Troxatyl may be
safely administered via continuous infusion compared to the bolus IV
injection
route. The presentation also reported that the responding patients had a
median duration of response greater than 7 months. In this setting,
Troxatyl
had a manageable and transient toxicity profile and was well tolerated, even
in patients over the age of 60 who are typically less tolerant of existing
therapies than younger patients. A Phase 1/2 CI study in solid tumors is
currently enrolling pancreatic cancer patients
(http://www.clinicaltrials.gov <http://www.clinicaltrials.gov/
About AML
AML is a hematopoietic stem cell disorder that is the most common form
of
acute leukemia, accounting for 80 to 90 percent of all acute leukemias in
adults. Although standard induction chemotherapy results in complete
remission in 50 to 75 percent of patients, relapse is common and long-term
survival rates remain at approximately 20 percent. At present, patients
with
relapsed or refractory AML have limited treatment options, underscoring the
need for new drugs in this challenging therapeutic area. A recently
published
review of M. D. Anderson's historical experience with third-line therapy for
AML patients reports a less than 5 percent overall response rate with a 1 to
2
month average life expectancy, underscoring the unmet need in this patient
setting.
About SGX
SGX is a biotechnology company focused on the discovery and development
of
innovative cancer therapeutics. SGX's lead product candidate is Troxatyl, a
novel cancer therapeutic currently in Phase 2/3 clinical trials for the
treatment of Acute Myelogenous Leukemia and in Phase 1/2 clinical trials for
the treatment of various solid tumors. SGX has also developed a preclinical
pipeline of novel oncology therapeutics using SGX FAST(TM) technology, a
proprietary fragment-based approach to lead generation. The SGX preclinical
oncology pipeline comprises novel inhibitors of the Gleevec resistant
BCR-ABL
(including T315I) mutant and dual specificity inhibitors of the MET-RON
receptor tyrosine kinases. SGX is also pursuing a broad program of
fragment-based lead generation directed against a portfolio of validated
oncology targets that include HSP-90 and the Aurora kinases. SGX has
secured
revenue generating drug discovery and development partnerships with leading
pharmaceutical and biotechnology companies including Eli Lilly, Serono S.A.,
and Roche. For more information, please visit the company website at
http://www.stromix.com <http://www.stromix.com/
Forward-Looking Statements
This press release contains forward-looking statements, including those
relating to SGX's plans regarding a Phase 2/3 clinical trial of Troxatyl(TM)
and to advance Troxatyl(TM) for the treatment of AML. The clinical
development of investigational pharmaceutical products is subject to risks
and
uncertainties. There can be no assurance that SGX's investigational studies
of any of its product candidates can be conducted within the time frame that
the company expects, or that the studies will yield positive results. There
can be no assurance that future clinical trials will confirm the preliminary
results referred to in this release or that Troxatyl(TM) will receive
regulatory approvals or prove to be commercially successful. For further
discussion of these and other risks and uncertainties, see the various
disclosures made by SGX. SGX undertakes no duty to update forward-looking
statements.

Hi Scott and Kristin,
Yes, a granulocytic sarcoma is the same as a chloroma. I'm not sure, but I
believe these may suggest more advanced CML, so it's understandable that
your heme/onc would at least want to start thinking about SCT.
Scott, at diagnosis, did you have any other hallmarks of more advanced
disease, such as a high blast or basophil count, especially high platelets
or low hemoglobin, or chromosomal abnormalities other than BCR-ABL? If not,
then I agree with you that it's may be worth continuing with IM which has
worked so well for you - especially if you're convinced that the chloroma
predated your diagnosis and the start of Gleevec. How long ago was that, by
the way? Also, how sure are you that the bone pain you had then is the same
as what brought you to the doctor recently?
Best wishes,
Richard R

Hi Kristin,
8.3 x 10E5 (I'm actually certain it's 8.3 x 10E5), is the same as 0.000083,
which is exceedingly low - for all intents and purposes the same as PCRU, so
I shouldn't think an increase in IM would be in order.
Cheers,
Richard

Thank you Lisa for asking. My last result I received from Moffit was 0.00035
which is very good compare to January results. The only disappointment I had is
that my results last March was negative i.e. PCRU but didn't last long. Consider
the sensitivity of Moffit QPCR is 1:1000, I don't know how reliable are those
results.
I have quit looking for becoming PCRU as I think I might be close, so better
leave it in GOD's HAND. I haven't report this results lately, as I have been
busy due to a family problem.My brother and his wife are getting divorced after
20 years and a lot of efforts are spent now to try to safe this family. It's
very stressful and painful process and I am trying to help which put on me a lot
of stress. I have been experienced a lot of bone pain in my arms due to this
stress. It is hard for me these days to exercise which I know how helpful it is.
I hope things will settle down soon so I can go back to my normal routine. I
know with Gleevec we all are back to our normal life facing our daily stress
either from work, family or friends. I am still trying to teach myself how to
take care of my self and control stress in my life which is a real hard
equation.
By the way,have any one heard about TEAM in training-Marathon from leukemia
society. It is a fund raising event. I might join them as it sounds like fun. I
will try to sign for walking 1/2 marathon. If you interest there is a coming
event in January 2006 in Orlando and CML Association are recently recruiting
runners and walkers for this event. Check it out
http://www.teamintraining.org/hm_tnt
Love and peace to you all
Teresa T
dxd 1/03
400 mg Gleevec

Chat Reminder - Tuesday - 9:00 PM

Hi Rita,
Thanks you for your kind words.
I guess you can say that you do go inside yourself when SCUBA diving.
What I like the most is the sound of your breath that is amplified by
the regulator and the bubbles floating up toward the surface on every
exhale. I think it is really cool the way the fish eye you with
suspicision, some of them come right up to my mask and stare in as if
they are trying to figure out the intrusion into their world.
As we become aware of pollution and the harm it causes we also become
aware of how to stop it. Slowly but surely we are getting there.
Peace, Love and all wonderful things!
Cheryl-Anne

Dane just posted some good news on his CaringBridge site:
http://www3.caringbridge.org/tx/dane/
Kristin

Scott I am sorry to hear about this diagnosis but confused also because I
know there has been so much talk about Gleevec and sarcoma?
I understand the trials have been on the type of Sarcoma that most HIV
patients get but from my previous research the study was going very well and
I only wonder why it wouldn't work for granulocytic sarcoma.
And my reason for seeing my Physician over 5 years ago was bone and joint
pain which ultimately led to my diagnosis of CML.
Lisa

Hello Susan, You should see my gardens... Yes I did consider it exercise and
caring for them is still a form of exercise. Physically and mentally.
My only problem is that I have a hard time controlling my spending:) Enough
is just never enough. But the feeling is worth every penny!
However, the best season to plant things here has come to an end in my
opinion. Our other Floridians may not think so. But I do best between March
and July.
The good news is the beauty of all the plants last almost all year here.
Lisa
Tampa Fl
Message: 1
Date: Sat, 13 Aug 2005 15:57:05 -0400
From: "Susan Loewenkamp" <loewen1@...
Subject: Plants
Hi Everyone,
We're always giving each other tips on how to feel better and live healthier
and I have an oldie but goodie that really does work. We all know exercise
is good for us and can in fact energize rather than tire us if our Hgb is in
decent shape. But, I just can't make myself get into a routine of planned
running, gym visits or anything that's on a regular schedule in addition to
everything else in my life that's on a schedule.
So, I suggest doubling your benefit by exercising while doing something you
really enjoy. I was moved by the woman (on this list, I think) who has 14%
blasts but went out and rode her horse for comfort. Last weekend I drove
across the Chesapeake Bay Bridge (LONG) and found a nursery with plants on
sale. Then the net day I found a nursery here and bought the pots and
potting soil. Today I planted them and my balcony is beautiful. I have
almost always gardened but CML interrupted that when I moved to Connecticut
with nowhere to put plants. And no sunshine to speak of to nourish them.
Anyway, I'm fully energized and am drinking one of my favorite cranberry
spritzers (straight cranberry juice, sparkling water and a wedge of lime)
and enjoying the view. The cats are really pleased to be able to go out on
the balcony and laze around the plants.
Happy weekend, everyone!
Susan L

Hi Teresa, I was wondering how you are and what results you received the
last time form Moffitt? If I missed it I apologize.
Lisa Martinez
Tampa

Hello,
I'm just curious what the protocol is to get into the BMS study, and
what dictates being "intolerant" to Gleevec?
I'm not sure where to look, and was wondering if anyone knew of a
webpage or something.
Many thanks, Lynn

Hi Nance
My name is Judy, I live in Melbourne Australia. I was diagnosed with cml in
1992. I had a bmt from my brother in 1993. I went back to work as a teacher 18
months later and although I was dependant on "intragam" for 7-8 years, I was
otherwise healthy and lived a "normal" life. I had a routine blood test last
July which confirmed relapse, and change from 100% my brother's marrow to mostly
mine again, and 85% ph+. This was a great shock, and with it I became very ill.
My oncologist first talked about dli's, but decided to try gleevec first. I
started 400 mg of Gleevec in July last year, initially my marrow didn't cope
very well and I had to stop therapy twice, but eventually I was able to become
established on Gleevec. now I take 400mg per day, with very few side effects,
my blood counts are all within the normal range and I feel terrific. My last
bmb failed but the blood test showed 0.03% ph, a huge reduction from the 85% at
diagnosis. I am happy to give you more details if
you wish to email me privately, and perhaps put your oncologist and my
oncologist in touch. My oncologist is thrilled with my progress, as am I and is
writing a paper about this treatmeent for patients who relapse after transplant.
The most promising aspect of this has been the return of my brother's marrow to
be dominant. I now have almost 100% male marrow again, and there is some
possibility I may be able to trial off Gleevec at some stage. I am 53 years
old. I hope this gives you hope, I certainly turned to this list and the
wonderful people on it for help last year.
judy_telford@...

Hi. This is a diagnosis I've never heard. I just want to say that, over the
four years I've been bouncing around these lists I've discovered that there were
many other people who were diagnosed after excruciating bone pain -- mine in my
right knee which was swollen twice its size overnight and made walking
impossible. I'm not necessarily trying to link this symptom that led to my
diagnosis with your tumor but it is something to think about. Maybe we could
have a poll to see how many people were diagnosed after joint or bone pain and
see if any of them had tumors. Or if they would just write in -- even those who
don't normally post could do it anonymously.
Please keep us informed. I don't have anything to say about the SCT
recommendation except to be sure and get more than one opinion about that from a
CML expert -- like someone at a major cancer center who specializes in CML -- MD
Anderson, Dana Farber, Memorial Sloan Kettering or OHSU where Brian Druker is.
Also, why don't you post your question on the other CML websites if you haven't
already.
Best wishes,
Susan L

if any of you remember my leg pain complaints, well they were recently
diagnosed after a surgical biopsy as a "Granulocytic Sarcoma" which is
made up of normal CML type cancer cells. I have begun radiation
treatments to get rid of the tumor and my hemotologist is now
suggesting that I consider a SCT as a more aggressive treatment for
the CML. I am arguing that this may not be required as I have had an
Extremely good response with Gleevec and I feel that as the leg pain
was present before being diagnosed with CML that the Tumor was
probably underway before Gleevec treatment was started. If anyone has
any experience with this please let me know, I have not seen any other
references to this on any boards. This is not great news but much
better than it being a sarcoma of a differnent kind of cancer so I
will continue to be the optimist. :-)

Hi Nance,
Welcome. You are definitely a CML Survivor!
there is a lady on this list from Australia who is on Gleevec, after relapsed
BMT and I am sure she will respond to you. She is doing great.
Also, on Jerry's List (www.newcmldrug.com)....click on CML discussion.....
post a note addressed to Geri............
she is also post BMT, did DLI (I think) and is now on Gleevec.
The new drugs are great and should take care of an residual cml cells that
you have. I'm glad that you found this list.
Nancy C.

Greetings from PA. I am 52 yo and was diagnosed with CML in
1985.(yes,
1985) I had a BMT in '86, relapsed and had another one shortly
afterward. That remission lasted 10 years. In 1996, I relapsed and
was
given DLI with my donor's white cells. (older brother) After
suffering
severe GVHD I achieved remission. Recently my illness has recurred in
chronic phase. My doc is checking into Gleevec with the professionals
in Balt. After 20 years of battling this curse I am very calm about
this new revelation. I don't think another DLI or transplant is an
option. I'm waiting to hear from the doc to find out the next move. I
was just wondering if anyone else has a similar story to share.
Thanks, Nance.

I also think there's power in being creative in whatever way you enjoy when
something is trying to destroy you.
Susan L.

Hi Everyone,
We're always giving each other tips on how to feel better and live healthier and
I have an oldie but goodie that really does work. We all know exercise is good
for us and can in fact energize rather than tire us if our Hgb is in decent
shape. But, I just can't make myself get into a routine of planned running, gym
visits or anything that's on a regular schedule in addition to everything else
in my life that's on a schedule.
So, I suggest doubling your benefit by exercising while doing something you
really enjoy. I was moved by the woman (on this list, I think) who has 14%
blasts but went out and rode her horse for comfort. Last weekend I drove across
the Chesapeake Bay Bridge (LONG) and found a nursery with plants on sale. Then
the net day I found a nursery here and bought the pots and potting soil. Today
I planted them and my balcony is beautiful. I have almost always gardened but
CML interrupted that when I moved to Connecticut with nowhere to put plants.
And no sunshine to speak of to nourish them.
Anyway, I'm fully energized and am drinking one of my favorite cranberry
spritzers (straight cranberry juice, sparkling water and a wedge of lime) and
enjoying the view. The cats are really pleased to be able to go out on the
balcony and laze around the plants.
Happy weekend, everyone!
Susan L

Hello!
Get a quick glance of Healthcare News and Resources here
http://www.allinonedirectory.info/HealthUpdate/
Take care,
Kate

Chat Reminder - Saturday - 9:00 AM

Sheryl I am glad to hear all this good news from you that you have being busy
again in your professional life. I want to tell that I do admire your great
support and contribution you have provided to CML group in the past years. I
personally have learned a lot from your experience. God bless you and I wish a
continue success in your profession
Love and piece
Teresa T

Has anyone heard from Dane? He hasn't updated his CaringBridge site
since early July, and I was just wondering how he is doing.
Kristin

Hi Kristin,
I don't know what youir numbers mean either but an increase in dosage is
something I've gone through twice now and it isn't so bad as you mighjt think.
Partcularly 600 mg. 800 mg gets a bit tougher with edema and a few other
goodies.
Nice to see your name on the list. Best wishes.
Love,
Susan L

Hey everyone, I'm adding a link to Jenn's Caringbridge page. She is
having a time with GVHD and needs some extra prayers right now...I know
we have the love and prayers she needs.
http://www2.caringbridge.org/fl/jennswanson/index.htm

Hey Group:
Here's a poem sent to me by my son when I reached "0".
Pain is a word stressed by many,
But consoled by few.
Confronted by many,
But handled incorrectly, mostly?
true.
Tears always's seem to fall,
Have you ever wondered why?
Pain is meant to go down stairs,
Not up and run and hide.
Within a tear is pain and love,
After you cry the love increases.
Maybe you crack a smile,
But when the pain decreases.
Your heart seems to run a mile,
in that mile you site much
Maybe you see, hear, or touch,
A piece of what we need,
But in that time don't forget,
What brought you to your knees,
Or maybe to this moment.
There's no happiness without pain
No tears without fear.
So don't find a one to blame.
When you need someone near,
Just look to the sky and cheer.
There's no need to say,
You will not know,
But you will understand his way.
LDB IV
"K"
"I AIN'T FINISHED YET"!!!

Hi Group,
I'm just checking in with all of you. I've been following the posts,
but I haven't had much to post myself.
My PCRs seem stable now at COH at 8.3 x 10E5. Since I've previously
been PCRU there, I'm not sure what that means, but I am in the process
consulting with MDACC through my hem-onc at COH. Maybe an increased to
600mg or 8oo mg is on the horizon.
Kristin

Dear Barbara,
My God, it's a wonder you didn't rip out all the lines and just leave! I
sincerely hope you're over the worst of it and that your sore limbs return to
normal ASAP. I also wanted to thank you for sharing what obviously was a very
unpleasant day. Someday I hope my husband will be PCR negative or much lower
than he is now and can have a stem cell harvest. While we all know the
potential upside for this procedure, it's good to know some of the downsides one
can encounter ahead of time. I wish you smooth sailing from here on out and lots
and lots of cells collected so you don't have to go through this again.
Adrienne
bheathcote254 <bheathcote254@...
Hi all. Another update. It was not a very good day today so please
excuse my typos. I'm tired and have about 8 holes in my arms.
The apheresis started this morning at 8:30. They had some initial
problems getting the lines in my arms but after trying about three
times, the lines were in and the apheresis started. Since it was
in both my arms I was immobile and had to depend on Larry to even
scratch my nose! All was going well until I noticed some pain in my
upper left arm and shoulder. I didn 't think much of it until,
about 10 minutes later, it got severe. At that point, I asked Larry
to get Dr. Korbling or the nurse. Gladys - my nurse for the day -
came over to check me and asked me how long I had been feeling the
pain and I told her it was about 10 minutes. Unfortunately, I had
a complication called 'infiltration' and the blood from my vein was
bleeding out into my upper arm and muscle tissues and had swollen
considerably (and are now hard as a rock and sore). The machine
was immediately shut down and the catheter removed from that
arm. I started to get a bit anxious knowing I'd have to be stuck
again with another 2 1/2 - 3" needle. Gladys tried to reinsert
the line into my hand several times but it was a no go. They then
called up the "IV infusion team" who are experts in finding veins.
They came up about up an hour later and attempted to reinsert the
needles again. They finally got the line reinserted and slowly
started the machine up again to see if all was clear.
Unfortunately, my wrist started to swell indicating that again my
vein was compomised and the blood was seeping into my arm. I hate
to admit this but at that point, I had a melt down and was ready to
call the entire process off. This was not working out how I
envisioned it!
The head nurse (Sarj - who has warmed up and turned out to be a gem)
came over and told me that they needed to go to 'Plan B' and I would
have a catheter inserted - either in my leg or chest. As you can
imagine, this didn't sit too well with me but what choice did I have
since I was here and 'ready to go'. I was scheduled for surgery
at 1 PM (they fit me in and were very accommodating). I asked for
conscious sedation (the kind they give you when they do a
colonoscopy) but apparently that has to be arranged far in advance.
So I had to be awake for it - which turned out to be fine.
Fortunately they took pity on me and gave me a good dose of versette
(sp) and it took the edge off the anxiety. A surgeon came in and
determined the line would go in my chest. He did a good job getting
it in with minimal pain and talked me through the entire procedure
so it worked out fine. After that, I was sent to x-ray so they
could see if the line was sitting correctly. By this time, the
Versette (which apparently does something with your memory) REALLY
kicked in. I kept telling Larry that they had to take me to x-ray
as he patiently explained that it had been done already. This is
a good one . . . I got very indignant when I realized that I had
my bra and t-shirt back on and figured that some one must have
dressed me. I was quite upset until Larry insisted that he watched
me dress myself and no one compromised my 'dignity' : - )! I
didn't remember any of this! So it must have been a good sedative!
We then went upstairs and the apheresis was started with much more
ease and I was much more comfortable with the port in my chest.
The only feeling I had was extreme cold - which the nurse explained
comes from the blood being filtered completely out of the body and
then back in. So they wrapped me in a few blankets and I was able
to get some shut eye.
While today was a frustrating day - I think I am over the hump with
the worst! Hopefully it's all down hill from here! Thanks for all
your support and prayers. I truly needed them today!
I am heading to bed as of my chest and arms are very sore . . .
this will be a good excuse to make Larry carry my purse for the rest
of the week! Ha!
SPONSORED LINKS
Chronic myelogenous leukemia Individual medical Cml Health professional

Hi Barbara,
Thanks for keeping us up to date on your harvest. Having had Aphresis
twice (once by my arm veins and the 2nd time by the groin) I much
preferred the catheter in the groin area as it felt much less
claustrophobic to me. It does all sound daunting, but as you mentioned
it isn't as bad as that - and certainly much better with a healthy dose
of sedatives!
Rest well and congratulations on getting through the first day. Have
they collected all the cells necessary or are you due back for another
round?
Love and Cheers,
Cheryl-Anne

Dear Nancy,
I'm glad to know that Bob's surgery went well. And that your sense
of humor, despite all, is still fresh as I chuckled with the
moooooving remark.
Please accept my condolences for your loss. I'm so sorry about
Connie. Glad she got to say her goodbyes, and know that heaven has
a new angel.
God bless.
love to you & Bob,
Kathy
dx 5/03

Nancy and Bob,
I am so sorry for your loss. I know it is "something people say," but Connie is
no longer in pain. She will be missed forever and all those who knew her are
better for knowing her.
I'm so happy Bob is home and hope he is feeling better soon!
Dana
bnw81@... wrote:
Hello dear friends,
Bob's surgery went fairly well and he is home and doing ok. He had the surgery
on Thursday and we came home on Tuesday. He received a bovine valve, so he will
have to be careful when he is moooooving! Went to UCLA yesterday and his
platelets are back up over a million, so he's back on Hydrea and Agrylin. And
also, back on the BMS drug. He was off it for over a month, because of the
surgery. He will have a BMB next month, so hoping it will show him still to be
in remission.
Bob's daughter, Connie, passed away on July 31. Bob was still in the hospital
in Bakersfield, but we had spent a day with her that week. She was able to see
many friends, and all her siblings. Those she could not see she talked to on
the phone and said goodby. Connie was very well loved and she loved well. Her
ashes were put out to sea last Sunday, just as she wanted. She loved the ocean
and the beach. Bob was able to go to her memorial service, but I'm not sure he
was aware of everything. Maybe that's for the best.
I want to thank all of you who sent messages. We do so appreciate the support
and prayers and encouragement. It's difficult taking care of Bob because he's
not able to communicate well. So it's important for me to have this
forum.........to read your messages and to glean hope and love from them. I
don't respond very often, but I do think of you all and you are always in my
prayers. I've had the privilege of meeting some of you and wish I could meet
ALL of you! Maybe in the afterlife, huh??!!
Thanks again................blessed be
nancy and bob w
============================================================

SPONSORED LINKS
Chronic myelogenous leukemia Individual medical Cml Health professional

Hello dear friends,
Bob's surgery went fairly well and he is home and doing ok. He had the surgery
on Thursday and we came home on Tuesday. He received a bovine valve, so he will
have to be careful when he is moooooving! Went to UCLA yesterday and his
platelets are back up over a million, so he's back on Hydrea and Agrylin. And
also, back on the BMS drug. He was off it for over a month, because of the
surgery. He will have a BMB next month, so hoping it will show him still to be
in remission.
Bob's daughter, Connie, passed away on July 31. Bob was still in the hospital
in Bakersfield, but we had spent a day with her that week. She was able to see
many friends, and all her siblings. Those she could not see she talked to on
the phone and said goodby. Connie was very well loved and she loved well. Her
ashes were put out to sea last Sunday, just as she wanted. She loved the ocean
and the beach. Bob was able to go to her memorial service, but I'm not sure he
was aware of everything. Maybe that's for the best.
I want to thank all of you who sent messages. We do so appreciate the support
and prayers and encouragement. It's difficult taking care of Bob because he's
not able to communicate well. So it's important for me to have this
forum.........to read your messages and to glean hope and love from them. I
don't respond very often, but I do think of you all and you are always in my
prayers. I've had the privilege of meeting some of you and wish I could meet
ALL of you! Maybe in the afterlife, huh??!!
Thanks again................blessed be
nancy and bob w
============================================================

Dear Barbara,
So sorry about your day. Yikes! I think you were definitely entitled
to a meltdown -- and I'm pleased for you that the chest port worked out
well & with so much less discomfort.
Your memory issues from the drug & Larry carrying your purse gave me a
good chuckle.
God bless. Here's hoping all goes smoothly now.
love,
Kathy
P.S. I didn't see any typos!

Hi all. Another update. It was not a very good day today so please
excuse my typos. I'm tired and have about 8 holes in my arms.
The apheresis started this morning at 8:30. They had some initial
problems getting the lines in my arms but after trying about three
times, the lines were in and the apheresis started. Since it was
in both my arms I was immobile and had to depend on Larry to even
scratch my nose! All was going well until I noticed some pain in my
upper left arm and shoulder. I didn 't think much of it until,
about 10 minutes later, it got severe. At that point, I asked Larry
to get Dr. Korbling or the nurse. Gladys - my nurse for the day -
came over to check me and asked me how long I had been feeling the
pain and I told her it was about 10 minutes. Unfortunately, I had
a complication called 'infiltration' and the blood from my vein was
bleeding out into my upper arm and muscle tissues and had swollen
considerably (and are now hard as a rock and sore). The machine
was immediately shut down and the catheter removed from that
arm. I started to get a bit anxious knowing I'd have to be stuck
again with another 2 1/2 - 3" needle. Gladys tried to reinsert
the line into my hand several times but it was a no go. They then
called up the "IV infusion team" who are experts in finding veins.
They came up about up an hour later and attempted to reinsert the
needles again. They finally got the line reinserted and slowly
started the machine up again to see if all was clear.
Unfortunately, my wrist started to swell indicating that again my
vein was compomised and the blood was seeping into my arm. I hate
to admit this but at that point, I had a melt down and was ready to
call the entire process off. This was not working out how I
envisioned it!
The head nurse (Sarj - who has warmed up and turned out to be a gem)
came over and told me that they needed to go to 'Plan B' and I would
have a catheter inserted - either in my leg or chest. As you can
imagine, this didn't sit too well with me but what choice did I have
since I was here and 'ready to go'. I was scheduled for surgery
at 1 PM (they fit me in and were very accommodating). I asked for
conscious sedation (the kind they give you when they do a
colonoscopy) but apparently that has to be arranged far in advance.
So I had to be awake for it - which turned out to be fine.
Fortunately they took pity on me and gave me a good dose of versette
(sp) and it took the edge off the anxiety. A surgeon came in and
determined the line would go in my chest. He did a good job getting
it in with minimal pain and talked me through the entire procedure
so it worked out fine. After that, I was sent to x-ray so they
could see if the line was sitting correctly. By this time, the
Versette (which apparently does something with your memory) REALLY
kicked in. I kept telling Larry that they had to take me to x-ray
as he patiently explained that it had been done already. This is
a good one . . . I got very indignant when I realized that I had
my bra and t-shirt back on and figured that some one must have
dressed me. I was quite upset until Larry insisted that he watched
me dress myself and no one compromised my 'dignity' : - )! I
didn't remember any of this! So it must have been a good sedative!
We then went upstairs and the apheresis was started with much more
ease and I was much more comfortable with the port in my chest.
The only feeling I had was extreme cold - which the nurse explained
comes from the blood being filtered completely out of the body and
then back in. So they wrapped me in a few blankets and I was able
to get some shut eye.
While today was a frustrating day - I think I am over the hump with
the worst! Hopefully it's all down hill from here! Thanks for all
your support and prayers. I truly needed them today!
I am heading to bed as of my chest and arms are very sore . . .
this will be a good excuse to make Larry carry my purse for the rest
of the week! Ha!

Zavie,
Is there a link to the zero club list?
Regards,
Mario

Power3 Secures Exclusive Rights from UT M. D. Anderson Cancer Center for
Early Detection Test, Biomarkers and Targets for Drug Resistant Cancer
Tuesday August 9, 9:00 am ET
THE WOODLANDS, Texas, Aug. 9 /PRNewswire-FirstCall/ -- Power3 Medical
Products, Inc. (OTC: PWRM.PK - News) a leading proteomics company, today
announced that it has obtained the exclusive worldwide license to patents
and technologies for early detection screening tests, identified protein
biomarkers and drug targets for cancer patients' resistance to drug therapy.
The technology was developed through joint collaboration between the
scientific team of Power3 Medical and The University of Texas M. D. Anderson
Cancer Center.
According to Dr. Ira L. Goldknopf, Chief Scientific Officer and Head of the
Scientific Team at Power3, "By utilizing our very sensitive and reproducible
proteomic methods with definitive patient samples, we discovered a series of
proteins whose concentrations in the bone marrow aspirate samples, taken
from Chronic Myelogenous Leukemia (CML) patients before treatment,
demonstrated a consistent correlation with whether the patients subsequently
responded to the treatment with a particular drug. The identities of these
proteins, which apparently detect the presence of drug resistant cancer
cells prior to treatment, also indicate a potential to design drugs to kill
both sensitive and resistant cancer cells."
"By the time drug resistance is detected in CML by current technology it is
usually too late to save the patient. This technology holds the promise of
detecting cancer resistance to drugs before treatment begins and offers the
possibility of designing drugs to increase their effectiveness to defeat
resistant cancer and to thereby prevent recurrence of the disease," comments
Steven B. Rash, Chairman and CEO of Power3 Medical.

Barb I'm so happy Tom is doing so well. I check in on you guys
regularly and send prayers daily. Give him a big hug for all us CMLers
out here and tell him to keep on fighting.
Amy B.

Dear CML group members,
I haven't written much in regards to Tom's transplant. He is now at day
95 and on the upswing. I am not expecting to leave Minneapolis by day
100 (Aug. 13) but probably shortly thereafter. Tom's hundredth day will
be exactly one year after he was diagnosed with CML (Friday the 13th -
who could forget). Tom's complications from the transplant - graft vs
host of the skin and liver (both gone now), CMV (cytomegalovirus -
almost gone now), ganciclovir for the CMV which knocked his white cell
count down to .5, prednisone induced diabetes, and he still hasn't
finished all his homework. Good things that happened with the
transplant