CML

I wold like to thank Lynne for letting me know about the group. It is
great to see a lot of old "faces". I was wondering what happened to
everyone since I left Rob's group. Hope every one is ding well. Just
to let everyone know, I have been on Weight Watchers for about 3
months now. I have lost about 20 punds, and feel so much better. I
have also stopped using INF and Neupogen. Will be seeing Dr. Mauro in
August.
Shelley
Boca Raton.

Hi Lisa,
Thanks for your email. I know exactly what you're saying. The thing
that I was having trouble understanding is how Gleevec can be
responsible for our concentration problems because lets not forget
that Gleevec doesn't pass the blood/brain barrier. How then can our
brain's be effected by a drug that doesn't reach the brain?
Then I started to think about other things that Gleevec DOES do and
wondered if that is the indirect link to cause the concentration
problems.
I've never been one to take any kind of vitamins because I've always
felt that if you eat right, you don't need to supplement your diet
with pills but recently I've realized that no matter how well I eat,
many of my electrolytes are chronicly low which I blame Gleevec for.
So I started to research what the signs of deficency are and you may
be interested in what I learned.
For low magnesium, signs include irritability, fatigue, insomnia,
muscle twitching, poor memory, apathy, confusion, and reduced
ability to learn. Right away I went "hmmmmmmm".
Sooo, today I started taking a magnesium supplement and I'll let you
know if after a while I notice any difference. I'm crossing my
fingers that the answer is this simple :)
Take care,
Tracey

Hi Tracey, I have to comment on this situation because lately I have been
getting really irritated and frustrated with all of the below.
The past few months I have even been considering checking to see if I could
be ADD since I do know that I have always kind of been the type that I have
to listen to one person at a time. But I have always been able to multi
task. (or did I just learn how to my own way?)
I have really been beating myself up bad about this lately. Wondering why is
it getting worse? It's to the point of interfering with the job that I have
been doing for 13 years. (its even depressing me at times)
I remember that interferon caused me serious problems with the same issue
but I never noticed the problem with Gleevec and only recently has it
started to affect my mental attitude.
Getting my family to understand that I only heard one of them when 2 of them
were talking is such a task. No matter how I try to get them to understand
me, they don't.
I have seen others refer to gleevec brain but didn't think I had it. Well
now I am not so sure. And I am not so sure that I want to be ADD either!
Well, I thought I would just let you know that you are not alone since your
story made me feel as if I was looking into a mirror of my thoughts lately.
And thank you for sharing and allowing me to get rid of the loneliness I
have been feeling over this.
Lisa M
Tampa Fl
Message: 4
Date: Thu, 31 Mar 2005 01:52:13 -0000
From: "Tracey" <traceyincanada@...
Subject: Re: Memory and Concentration Studyand a Question
Hi Susan,
I have said for years now that Gleevec has interfered with my
ability to concentrate. At first I thought it was a memory problem
but then I realized that memory and concentration although very
closely related, are indeed independent of each other.
I can no longer multi-task which I used to do very well. Gone are
the days where I could play on the computer and listen to the tv in
the background and carry on a conversation with the kids.
When I follow a new recipe, I have to check and recheck each step of
it, not because I can't remember the next step but because I can
only concentrate on one step at a time.
Since I've been on Gleevec, I've only been capable of carrying on
one thought process at a time which I used to mistake for a memory
problem.
A good example is this: if someone tells me something while I'm
reading something on the internet, without a doubt, I won't retain
what the person told me.
This is how it was easy for me to confuse memory with
concentration. It's not that I couldn't "remember" what the person
told me but rather I couldn't concentrate enough to process it
because my mind was too busy trying to absorb what I was reading.
If someone tells me something when I'm doing nothing but
concentrating on the conversation I'm having, I have no problem at
all remembering what the person said.
I don't know if this would be considered ADD but I'm not prepared to
take any medication for it even if it is so I just live with it.
Take care,
Tracey
dx Jan 2002

Dear Cheryl,
Thanks so much for the information. In fact, I really would like the web site
addresses for yoga poses (Did Hatha yoga many years ago) and also the meditation
sites. I absolutely love chai tea.
Pho is Vietnamese noodle soup which you can get with chicken or with various
cuts of beef. It comes with fresh bean sprouts, basil leaves and hot sauce on
the side. Delicious. It's very popular around here--so manyh Pho restaurants
that many of them just use a number for their name. Like Pho 50. Guess there
are more Vietnamese immigrants here than in your area.
Although my head cold hasn't gone away yet, I do feel lots better than
yesterday. Thanks again for true support when I needed it. I really appreciate
it.
Love,
Susan

Sorry for the interruption.

Hello Susan,
Right, you did say you are not having a memory problem.
I can imagine it might be hard to blow off steam in a small
appartment, good luck with the new park. I find that Yoga works best
in small places and I am not sure how much you are into Yoga, but
there are some really neat yoga sites on-line that offer free yoga
lessons that guide you through some of the positions. In fact I also
subscribe to a free yoga journal on-line and it offers neat tips on
some of the poses. Yoga has always been an excellent way to off-load
stress. Start the day off with a few "sun salutations" and believe
me you can actually work up a sweat and have a good work out.
You can combine the yoga session in your apartment with burning some
nice incense or other forms of aromatherapy and get that "spa escape"
kind of feeling - if you're into that kind of thing. After a good
yoga workout I enjoy a nice hot cup of either Chai tea (I've found a
very good recipe for Chai tea on the web and I will try it out when
Christine comes over this weekend), or green tea. You can even take
a luxuriating hot shower using see salts and a bit of olive oil as a
body scrub and feel as rejuvinated as an expensive day at a spa - and
completly de-stressed.
Once you've taken care of your body, you can also try a little
meditation for your mind. There are lots of free sites on the web
that offer guided meditations for beginners and even not so beginners.
If anyone would like me to post all the links, I'll be happy to do so.
I did follow your diet and I am delighted to hear that you've kept
the weight off. I've fluctuated a bit - oh well. What is Chicken
Pho?
How far away are you from Williamsburgh Virginia? I loved visiting
that place and have always had a deep affinity for studying and
exploring colonial times.
Of course, all that being said, I am not always so good at dealing
with the stress and am prone to a bit of cyber "whinning and geezing"
about things. I am grateful when people listen to me and mindful to
do the same for others - it all evens out.
Love and all good things to you,
Cheryl-Anne

Gale,
I am so happy to see a FISH report like this. Your are blessed.
The only problem is...I am somewhat envious..my last test two months
ago was at 13% (working for ZERO)...have my fingers and toes crossed.
I am awaiting for the results from my last test...hope to have it
today or no later than monday, April 4th. My prayers for you will
be to remain in this condition until a complete cure comes in the
form of pill....to seek out those last few lurking leukie cells.
Warm Regards,
Jim Beck - Pennsylvania, USA
dx 8/2001
chronic - WBC 497,000 - 100% PH+
Interferon, Hydrea
IM - 2/2002 - 400, 500, 600mg Up & down
currently 400mg w/pancytopenia
FISH 13% - Jan 2005

I just wanted to let everyone know a friend of mine has begun her
transplant journey...now undergoing chemo...her new b'day will be
April 6th. Please send love, support and prayers to her at her
caringbridge site..www2.caringbridge.org/ca/heidi
Thanks...Love, Peace, Hope & Prayers, Pat

Hello All,
Here's my latest FISH report. The details are here in case someone
hasn't seen this before:
BCR-ABL T(9,22) FUSION 0.000
The real time assay shows no evidence of expression of the BCR-ABL
fusion transcript which usually results from t(9,22) (q34;q11)
translocation. This assay is a real-time quantitative RT-PCR assay.
Extracted sample RNA is subjected to a real-time RT-PCR reaction to
measure the quantity of the two types of BCR-ABL fusion transcripts
(b2a2/b3a2 and e1a2). An additional amplification for ABL gene is
performed as a control for sample RNA quality.
<blah, blah, blah ...
Then, it says: The analytical sensitivity of this test is 1 tumor
cell in 100,000 normal cells.
So, I'm happy to report that I'm still a big fat zero too!
(I'm sure there are a few lurking leukemia around, but I'm glad
they are just lurking...)
To your good blood,
Gale Bacon

As an FYI here is a picture of the home infusion bottle I am using for
IV fluids three days a week.
As you can see, it looks like a baby bottle without the nipple. There
is a latex balloon inside the bottle. The balloon is pressurized and
also contains the perscribed fluids. It hooks right up to my CVC (as
simple as putting two Lego pieces together)and the pressure in the
balloon sends the fluid up my line and right on in. No gravity
feed...I can put the bottle in my pocket and walk around. The only
work involved is flushing the line with saline before connecting and
then with heparin when the infusion is complete. Piece of cake.
http://www.fototime.com/9E489EE05CC2FE9/orig.jpg

Hi Cheryl-Anne,
Thaqnks for the cute reminiscence. I actually don't have any memory problems,
which I think I mentioned. And the stress which is close to unbearable at
times, is ambient. In fact, I may have to move from this area although I don't
know where I'd go at this point. Nor do I have the funds to leave. So I
strongly suspect that the problem IS stress and I do what I can to blow off
steam but that's a little hard to do in a one-bedroom apartment in the midst of
urban sprawl. There is one park I discovered recently that could possibly be a
good place for walks. The other one near a university is full of dogs and
they're not all on leashes or friendly! ;--)
I have been going to a chiropractor for my lower back and some of the procedures
are very relaxing. As it warms up -- it's supposed to be spring, isn't it?--
I'll look for other places to exercise. There's more of Virginia to explore and
once one drives to the historic spots the rest is best on foot. Maryland is
beautiful, too.
btw, I remember that you kept up with my long-range diet and I've kept the
weight off, I'm happy to report. It varies by 1 or 2 pounds either direction
when I visit my onc every two weeks. I do agree with you, though, that it isn't
just the calories that count. It's the nutritional quality of the food. I have
a terrible head cold and so treated myself to a big bowl of chicken Pho tonight
for dinner. Is Pho popular in your neck of the woods?
Until it warms up, I think I'll just get a fitness DVD and pretend that my
livingroom is the Shenandoah Valley.
Nice to hear from you! Thanks for taking the time to write.
Cheers!
Susan

Hey Susan,
Interesting topic, thanks for bringing it up. I like to blame memory
and other problems on Gleevec, but, I am finding it harder to do so.
Quite a few of my friends who are healthy and consequently not on any
drugs (that I know of anyway) are reporting the same types of
problems. Of course, this still doesn't stop me from cooking up a
few theories of my own. Lately, I have been thinking about the
association of blood oxygen levels. Lower levels obviously would
have a negative impact. Lethargy at any level seems to have a
cascading effect and depression can also be a culprit. To this list
I would like to add certain foods. I am becoming more convinced of
the effect of certain types of food. In the fall of 2003 I tried the
South Beach Diet - practically no carbs and no sugar (well for the
first wo weeks anyway). The difference in energy levels and
concentration was quite significant. I have been successful in
gradually changing my diet to more of certain types of vegetables and
proteins and find a good improvement. However, this past weekend the
Easter bunny amazingly showed up at the Buddhist retreat I was at,
and I being a recovering chocoholic, gleefully slipped down that
chocolately slope (peanut butter and chocolate - why the protein in
peanut butter almost qualifies it as real food anyway)only recently
pulling myself up. I've been very tired all week thinking I've
crashed from all the stress and exhaustion of the last few months.
Anyway, my indulgences of last Sunday surely couldn't have helped
any. I finally made it to the gym again and I feel like I am
starting to come around.
I think we cannot overlook the stress factor, sometimes we need to
cut ourselves a little bit of slack. I think we are more stressed
than we think sometimes.
Anyway that is my two cents, hope you've found it helpful and amusing!
Cheers,
Cheryl-Anne

Dane,
thanks so much for sharing your journey so faithfully with all of us. It gives
me courage, and I am sure others receive that as well. Stay strong in your
process and know that you continue to be in my prayers
chris

Let me start this update by saying all counts are still good and I
am still feeling great.
I did have an expisode of extended muscle pain, but this was due to
overdoing it at Physical Therapy. It was a reminder that I am still
a transplant patient and have some recovering to do yet! After a
discussion with the therapist, we took everything down a notch and
now all is well in that department. Lesson learned....take those
baby steps!
Incidentally, the neuropathy in my feet is gone. Now I just have to
deal with some edema of the feet, due to all the fluids they keep
pumping into me!
An unexpected development came up yesterday (Day 50). Apparently,
my insurance company has an agreement with the hospital that after
50 days, I switch to part time home infusion, provided I am healthy
enought to do so.
So now I go to the day clinic only 3 days a week, as long as my
counts remain good. On the off days, I take my IV fluids via a
pressurized bottle, which I plug right into my central line.
Insided the bottle (which looks very much like a baby bottle) is a
pressurized balloon containing my IV fluids. Once the bottle is
hooked up and unclamped, the pressure inside the ballon slowly
forces the fluids up to my central line. No gravity feed or
external pump necessary. Simple and smart.
A nurse from the home infusion company comes today to train us how
to use the equipment and how to to flush the lines after each use.
Each infusion takes 2.5 hours and I do it once on each non hospital
day.
I have mixed emotions about this deal, because I was perfectly
content to go to the hospital each day for 3 hours and read a book
while I got my fluids. The IV was hooked up and unhooked by a
professionally trained nurse.
Now, my wife and I are forced to fumble with equipment three days a
week. I will take this as a good sign, as I am well enough for the
team to approve these home infusions.
This also means we have Saturday and Sunday's off. The thought of
driving up to Colleyville (4 hours) for the weekend to see the kids
is growing more enticing with each hour! At the very least, we will
take some day trips to areas of interest a little closer to the
hospital, but one never knows. :o)
That's today's update...I will post pics of this home infusion gizmo
after the nurse visits today.

pt: I was cleaning up my 'draft' folder and found this email that was not
sent.

Hi Tammy,
I'm not sure if the purple moles on your Mom's tummy are "moles"
or "petechia". Petechia is associated with both CML and Gleevec.
It's when you get tiny little red or purple dots which are caused by
little broken blood vessels near the surface of the skin. They're
not dangerous but could indicate that her platelets are low. Is she
getting regular blood tests?
Take care,
Tracey

Springtime in Houston
http://www.fototime.com/556AA870608C9ED/orig.jpg

Hi Susan,
I have said for years now that Gleevec has interfered with my
ability to concentrate. At first I thought it was a memory problem
but then I realized that memory and concentration although very
closely related, are indeed independent of each other.
I can no longer multi-task which I used to do very well. Gone are
the days where I could play on the computer and listen to the tv in
the background and carry on a conversation with the kids.
When I follow a new recipe, I have to check and recheck each step of
it, not because I can't remember the next step but because I can
only concentrate on one step at a time.
Since I've been on Gleevec, I've only been capable of carrying on
one thought process at a time which I used to mistake for a memory
problem.
A good example is this: if someone tells me something while I'm
reading something on the internet, without a doubt, I won't retain
what the person told me.
This is how it was easy for me to confuse memory with
concentration. It's not that I couldn't "remember" what the person
told me but rather I couldn't concentrate enough to process it
because my mind was too busy trying to absorb what I was reading.
If someone tells me something when I'm doing nothing but
concentrating on the conversation I'm having, I have no problem at
all remembering what the person said.
I don't know if this would be considered ADD but I'm not prepared to
take any medication for it even if it is so I just live with it.
Take care,
Tracey
dx Jan 2002

Hi Tammy,
I'm not sure what causes the red flushed face but I have had it for
years, long before the CML and Gleevec.
For pain, I take Advil but your Mom should check with her doctor
what he/she recommends. It's not a good idea to take Tylonal
because it can be hard on the liver which is already somewhat taxed
trying to metabolize the Gleevec.
The cramps are a very common side effect of the Gleevec and can be
helped with potassium, calcium and magnesium supplements. Again,
check with your Mom's doctor to see how much to take as too much of
anything can be dangerous.
Lots of us get enough potassium from eating 1 or 2 bananas a day but
the calcium and magnesium requirements are sometimes harder to
meet.
If she does take calcium, make sure to tell her not to take it
within two hours of taking the Gleevec because calcium can interfer
with the Gleevec absorbtion. Also, depending on the type of
calcium, it will determine if she should take it with or without
food. For instance, calcium citrate is best taken on an empty
stomach whereas calcium carbonate is better with a food.
No one knows what causes CML but some studies have linked benzene
and radiation exposure to it. While some of the members on this
list have had exposure to one or both of these, most of us have not
so it's just the luck of the draw I guess.
Take care,
Tracey

Hi Lynne,
I guess they're looking for new patients, or a new phase in the trial.
Have your own results been helpful to you?
Best wishes,
Susan

I have not picked up on any of the hints Dr. Richard mentioned about Gleevec
suppressing the immune system. How serious do you think this is? How many
of you think this is so? I have reason for concern due to a past history of
ovarian cancer nine years before my cml dx. I find it scary to think that
the Gleevec that is helping my cml could be hurting the remission I've had for
the ovarian. What are the hints? Could someone explain this further to me?
I'm hoping it's just a hint, since the newest article quoted seemed to find
the opposite.
Thanks,
Nancy in NY
dx. 1/05
400 mg.
Zero Club #756

In a message dated 3/30/2005 6:42:54 P.M. Eastern Standard Time,
loewen1@... writes:
Gleevec (IM) and concentration and memory. I have noticed that it has
become harder to focus. Of course, I have so much on my mind that it isn't
surprising. My memory seems to be fine. Is there anyone here with ADD or
focus
problems
Susan, Yes, I 've always said that along with the dx of CML and the side
effects of the Gleevec, it is no wonder we all have other things on our minds
that cause us to space out or be forgetful. Is there a correlation between CML
and the brain function directly though? "Gleevec-brain" is getting some
notariety among the medical professionals. I don't know, that is what is so
intriguing about this particular study. I wish they would publish the
results...I
have been involved in the trial since 2002. - Lynne

Hello everyone and thanks so much for the welcome and the advice..
My mother is computer shy and she is hard of hearing and doesn't talk on the
phone.
She is depending on me to help her and I am there for her.
One of the things she is having is heat sensation.
Is this normal?
Her face gets really red after a shower or if she gets hot in the car,
It looks like a sunburn.
After a while it goes away.
What do you take for pain?
She has pain in her left hand and doesn't know if she hurt it or what.
She also has muscle cramps daily.
She has never been one to take any kind of medicine so this is hard for her.
She is 67 and has never had any problems before except a gall bladder operation.
What causes this awful disease?
Thanks again,
TAMBAM

I got this information from one of the other CML sites and wanted to pass it
along with a comment and a question.
It's about Gleevec (IM) and concentration and memory. I have noticed that it
has become harder to focus. Of course, I have so much on my mind that it isn't
surprising. My memory seems to be fine. Is there anyone here with ADD or focus
problems? Who diagnoses such things? I see advertising about Scatarra (sp?)
for ADD but I don't think my problem is bad enough for medication. Anyone?
Here's what I found on the site about a trial that might be of interest to some
in the Boston area.
Best,
Susan L
Memory and Concentration Study
The purpose of this research study is to assess memory and concentration in
people with Chronic Myelogenous Leukemia or Primary Myelodysplastic Syndrome
diagnosed within the past year. Participants will complete three assessments
over the course of 18 months. The study will be conducted at the Brigham and
Women's Hospital in Boston, Massachusetts. Assessment will consist of 7 paper
and pencil questionnaires and 8 measures of memory, concentration, and
attention, given in a variety of formats such as paper and pencil or computer.
The first assessment will take about 2 hours to complete and the second and
third will take about an hour each to complete. The results will be
confidential. No blood work is taken and no medications are administered.
Participants will receive $50.00 for each assessment, for a total of $150.00 and
parking fees will be reimbursed. If you are interested in participating, please
contact Dr. Grace Chang and 617-732-6775 or Gchang@...
<mailto:Gchang@...
alavigne1@... <mailto:alavigne1@...
Alyson Lavigne
Concentration & Memory Study
Brigham & Women's Hospital
221 Longwood Avenue
BLI- 334
Boston, MA 02115
(617) 278-0531

Thank you for this post, Richard. Hopeful news is always welcome from the CML
research front. I'm grateful to you and others who do take the time to read
scientific articles and share them in a way that makes it easier to understand
for those of us who are not MD's.
Best to you,
Susan

Thanks for sharing this with us Richard. It's going to take me some
time to go through it as it's quite technical but I really do
appreciate having the entire article along with your discussion.
When an article is so technical, I believe it's essential to have some
preface to help us understand it otherwise, I don't see how it can be
useful. Thanks so much for taking the time to preface this article.
Your participation in this group is not only valuable, it's priceless.
Take care,
Tracey

Hi Zavie
I am having problems as well. A friend who lives in my building sent me an
email last night at 9:19 and I just got it now. Sometimes the Sympatico server
is off. I don't think it is the CML site.
Rita

Hi all,
Sorry for the test messages, but the situation is bizarre. It appears that
the messages are not lost, but very slow in getting to my inbox. This Test 4
message was sent at 7:32 AM and arrived in my inbox at 10:49 AM. They
normally take seconds to turn around. The message that I was really
complaining about was one from Rita Levig that had a date/time post of
March 29 11:36 AM. It eventually showed up in my inbox with a date/time
stamp of March 30 7:58 AM. Almost 24 hours later. Pretty soon I might try
the digest option. It might get to me quicker.
The chat last night was most entertaining. Tracey transformed it from a CML
discussion to a version of the old time radio program called 'Name That
Tune'
Zavie

As many of you know, there are hints in the literature that IM (Gleevec)
interferes with certain aspects of the immune system. If true, this presents
us with a couple of problems: first, it's unfortunate for us if by
suppressing the tumor fighting capabilities of our immune system IM were to
allow other cancers to gain a foothold while keeping our CML at bay (it was
this concern, and others, which led me to try cycling on and off IM for the
past couple of years - a practice which I've suspended in light of recent
positive qPCR's). Second, despite all the great new drugs in the pipeline,
the most promising strategies for curing CML are probably those that enhance
our own (or a donor's, in the case of a mini-SCT) immune system's response
to the disease, so we can recognize and kill residual cells that are
insensitive to drugs. If IM inhibited the mechanisms whereby vaccination
induces immunity, these otherwise promising strategies would be compromised.
Happily, this February's "Blood" Journal contains an article, abstracted
below, indicating that IM may actually improve immune functioning in certain
important respects: "In spite of the valid concerns raised by those studies
demonstrating that imatinib mesylate can impair DC maturation and T-cell
function, our in vivo results together with those from Zeng et al indicate
that treatment of a tumor-bearing host with STI-571 certainly did not impair
antitumor immune responses but instead resulted in enhancement of T-cell
responses to vaccination strategies."
The authors bolster their case with findings from other studies: "Further
evidence supporting the potential positive immunomodulatory effects of
imatinib mesylate has been provided in a murine model of bcr-abl+ murine
leukemia and in two recently completed clinical trials for patients with CML
in which vaccination strategies were added to imatinib mesylate. First, Zeng
et al have shown that the combination of this drug with chaperone-rich cell
lysateloaded DCs resulted in activation of antigen-specific T cells and
potent antitumor activity against bcr-abl+ leukemic cells. In the clinical
arena, Bocchia et al have found that in CML patients with persistent disease
despite treatment with STI-571, vaccination with a P-210derived
multipeptide vaccine (CMLVAX100) induces cytogenetic and even molecular
improvements in the majority of treated patients. Furthermore, in this
cohort of patients, prolonged treatment with STI-571 does not adversely
affect T-cell responses since peptide-specific proliferation and IFN-gamma
production by CD4+ T cells were clearly detected following multiple
immunizations with CMLVAX100. In a second study, Li et al treated imatinib
mesylateresistant CML patients with a combination of this drug and an
autologous vaccine consisting of heat-shock protein (HSP) obtained from the
patient's own malignant cells. This strategy also resulted in improved
cytogenetic and molecular responses as well as in the expansion of
IFN-gammaproducing CD8+ T cells directed specifically against autologous
tumor cells."
As members of this list can attest, there is reason for skepticism regarding
the reported findings and conclusions of the heat-shock protein study;
nevertheless, the overall thrust of this article is a hopeful one.
There are other interesting (though complicated) findings in this article,
including the fact that in a mouse CML model, "treatment with [imatinib] was
able to convert a T-cell encounter with antigen/APC from a tolerizing event
into an activating event". I will post a PDF of it temporarily in the Files
section of the CML2 webpage.
Cheers,
Richard R

Zavie,
Which e-mails are you missing? Are they from a particular date and
time, or does the problem appear to be a random occurence?
My account is set to receive digests and I haven't missed any digests
since signing up on March 9th.
Keep us posted if this is still a problem for you.
Cheers,
Cheryl-Anne

I am not receiving all the group emails even though I am signed up to get
individual emails.
Is anyone else having this problem on this site.
Thank you,
Zavie

Test 3 - no rules active.

Testing.

Note: forwarded message attached.
TAMBAM

Chat at 9:00 PM EST

Hi Group,
I thought this was a very interesting tidbit proving something some of
us have known all along. The Internet has power to disseminate and
consolidate information and research. This article mentions three
types of bone marrow cancer, but only discusses MPD. I wonder if
anyone in our group participated in this study and can tell us if CML
was one of the "bone marrow cancers" studied.
Does anyone have access to to the journal Cancer Cell? I'd love to see
the entire article.
Best,
Kristin
Web-Based Cancer Research Reaps Reward
TUESDAY, March 29 (HealthDay News) -- A gene mutation that causes
three related kinds of bone marrow cancer has been identified by U.S.
researchers, who used the Internet to collect blood and tissue samples
from far-flung patients.
The discovery of this mutation in what's called a "tyrosine kinase"
gene may help in the development of targeted, molecular therapies to
treat these deadly myeloproliferative disorders (MPD), caused by an
acquired mutation in blood cells. Scientists have spent decades
searching for the cause of these diseases.
Currently, there is no effective treatment for MPDs.
In their study, researchers at Brigham and Women's Hospital and the
Dana-Farber Cancer Institute, both in Boston, used the Internet to
collect a large number of blood DNA samples and cheek tissue from
patients with these bone marrow cancers.
First, the researchers distributed information about the study via the
Web through a support group for MPD patients. Interested patients who
mailed in a consent form were sent a kit for taking blood and
cheek-swab samples at their next visit to the doctor. The completed
kits were then mailed back to the researchers for analysis.
In less than a year, the researchers obtained samples from 345 people.
Rapid, large-scale DNA sequencing was used to search for mutations in
tyrosine kinase genes, which act like on-off switches for cell growth.
Tyrosine kinases have been shown to be stuck in the "on" position in a
number of cancers.
"This discovery represents a tremendous step towards understanding the
molecular pathophysiology of these diseases and developing a treatment
for these cancers," study co-author Dr. D. Gary Gilliland, an oncology
researcher at Brigham and Women's Hospital, said in a prepared statement.
The study appears in the April issue of the journal Cancer Cell.
More information
The U.S. National Cancer Institute has more about myeloproliferative
disorders.

Hello Everyone,
Just wanted to post an update and let you know that we have had over 100
people register to view the webcast - Wow!
Thanks for your participation.
If you would like to view it just click on this link and sign in (it's
free):
http://events.startcast.com/events/139/B0001/#
Cheers,
Cheryl-Anne
Stratégie de Communication Med Summit Inc/Sommets Médical
FMC/FSC Stratégie de Communication, Planification et Coordination
CME/CHE Communication Strategy, Planning and Coordination Tel: (1)
514-782-2004 Fax (1) 514-782-8777
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Tammy I'm glad you found this support group...it will be good for you
as well as your mother.
Fighting fatigue has been the worst side effect I've had and I have
several others. I was diagnosed 15 months ago, and I am just now
getting better but I still can't do what I used to. I still tire
easily but can accomplish much more than I did 6 months, 15 months
ago. On her good days, she should try to get some mild form of
excercise, this has helped me a lot but in the beginning I couldn't
even do that. Just try to offer her help when you can with whatever
area she needs, doing laundry, etc. And verbal support always
helps...if she is frustrated with herself not being able to do things,
encourage her that things will get better. It has been a slow gradual
process for me and it wasn't ever easy, but it has gotten better.
Also, if you feel she is depressed because of her inability to do
things, depression will also cause fatigue, so maybe she needs an
antidepressdant. Helping to keep her mind occupied would also help her
if you have a lot of time to spend with her. Attitude has a lot to do
with all of it I think. I fight the fatigue and other symptoms with my
mind as much as I can but even then one can become exhausted from
fighting pain, fatigue, etc. Just giving her love and support and a
helping hand now and then will mean so much to her. And if you need
support yourself...you're at the right place. Please don't hesitate to
call on any of us at any time. I hope your mother soon starts feeling
better...and I will pray for her. Love, Peace & Hope, Pat Reynolds

Hello,
Have any of you had side effects from being taken off Predisone? I have been on
and off Predisone and Gleevic for the past 3 years and my longest bout with the
combination has been 10 months (Gleevic - 400 mg and Predisone started at 50 mg
and decreased to 5 mg) I am unable to do Gleevic without serious side effects,
so the doctors prescribed Predisone.
Since being off the Predisone for 2 months, I have aches and pains in my legs,
arms, fingers and feel that my legs are stiff. All this disappears when I take
an Advil. Now I am getting little lumps or bumps under my skin in my fingers,
hands and legs. These lumps are not along the lines of the lymphatic system
though.
Can any of you help me or give me some feedback on this matter.
The reason I am off Gleevic is that I am preparing to go on the new BMS trial
drug. I was diagnosed in June 2002 and still not in remission or close to it.
Love and Peace,
Rita

Hi all,
My name is Tammy and my mother was diagnosed about a year ago.
She has been having problems coping with her illness.
She is tired a lot and since she has always had so much energy, it's hard for
her.
I would like to hear how you cope with the tiredness and how one's family member
can help in this situation.
She is on 400 mgs of Gleevec daily.
Her blood counts are good and she is happy with her doctor.
Any advice you can give will be appreciated.
Tracey <traceyincanada@...
Hi Tammy,
We're happy to have you here. There are several members here who have been
living with CML for many years and have a wealth of knowledge to share with
other members. Please feel free to post to the group with a little introduction
about yourself and/or ask any questions you have.

Hi Lisa,
Like you I prefer to go to the labs that tell me I'm PCRU. Who needs the
other guys?
It is not a question of 'false positive' like FISH tests or 'false
negative'. It has to do with the sensitivity of the testing. In fact, you
can have a test that is so sensitive it will detect CML among the normal
healthy population.
We know that Gleevec is not a cure, so until something else comes along we
have to keep taking it. What is important is that you have achieved a 3 log
reduction with your CML. It seems that if you have achieved this level, then
there is not much of a chance that you will ever (10-20 years) relapse.
The trick is to find a lab that does a very sensitive QPCR test and keeps on
doing the same test. Then you will have the ability to compare results.
Chances are any signs of relapse will been seen in the PB PCR test long
before it appears in a BMB test.
I have been told that Canada, with the help of Novartis, have standardized
the Q PCR test in 7 laboratories across the country. Theoretically you
should be able to send a sample to any or all of the 7 labs and get the same
result. This testing is provided free of charge by Novartis Canada.
I had one done on November 25, 2004 and it came back 0.012%. Had another one
done on March 8, 2005. Will let you know when the results come in. I'm not
sure I didn't like it better when the results came back as PCRU.
Zavie

Yes, this is a big problem. I also have had
different results from different labs, negative by
Quest but positive by MD Anderson. My doctor at UCSF
said he trusted the MD Anderson test more. At this
point, I would only have confidence with PCR results
from major CML research centers such as OHSU, MDACC,
Fred Hutchinson, and UCLA. After all, the diagnostic
value of the PCR scores comes from the studies that
correlate them with clinical outcomes, and those
studies are done by the centers such as the above.
ho

Hi Amy,
Sorry you're sick. Kidney stones are miserable!
Most kidney stones that occur in the setting of leukemia are caused by rapid
leukemic cell destruction, which results in uric acid buildup and subsequent
chrystalization in the kidneys. I'd expect most of this to occur early in
treatment when billions of cells are killed at once, not once one is in CCR,
or even HR - though I suppose stones that are formed early in treatment
might only become symptomatic later. Were any of your stones collected and
analyzed? If they're not principally composed of urate, then rapid cell
lysis is pretty well ruled out as the cause.
Another possibility is excess calcium intake. Many of us ingest 1200 mg or
more of calcium daily to prevent muscle cramps, and an overload of calcium
in the blood could precipitate in the kidneys as stones. Again, stone
analysis would help determine this.
I can't think of any other reasons why folks with chronic leukemia would
experience this; acute leukemias are a different matter.
Yours,
Richard R

Hi Amy,
I can't say that I've ever heard a connection with Kidney stones and
leukemia but that of course doesn't mean that it isn't there.
Many years ago my mother had a problem with kidney stones and her
doctor told her that it was because she was taking in too much
calcium. Are you taking loads of calcium by chance? It can either
be in diet or supplements.
Hope you find some relief soon,
Tracey

Hello Everyone,
For those of you that did not see my post previously regarding my PCR that
was done by PB at Labcorp recently, I will re-post those results with my new
ones from my BMBA
Labcorp PCR by PB Date 2-25-05 = Positive (first time I ever had them done
there)
B2A2 0.005
B3A2 0.022
Genzyme PCR by BMA Date 3-14-05 = Negative (All Test done there since first
DX 5-2000) ***However, last years (March of 2004) PCR results from Genzyme
BMA test did show a SLIGHT positive in Major E14A2.0.005
After last years result showed a slight positive my Doctor and I were
concerned that we could possibly start seeing an upward trend.
With that I went back to Moffitt Cancer Center here in Tampa Fl so that in
the event of a trend, I would already be registered as a patient and have
easy access to the new trial drugs available.
The PCR results from their laboratory- (not sure which one they use) were
negative. They checked it every other month last year to see if there were
any changes and all of them were negative. But again I am not sure which Lab
they use right now. I just know it's not Labcorp because Dr. List indicated
that he had made that change when he came on board.
(they use to use labcorp)
These conflicting results have caused me some confusion to say the least.
Per my last past on this topic, I understand Zavie and I have both been
going to different labs and getting different results.
Because I am one of those people who prefer to have my glass 3/4 full,
I prefer to choose the negative results!
***My question still remains: Do we assume a false positive is correct or a
False negative And how do we know which one is false?
I know the answer that I prefer and choose to believe, but scientifically,
which one is correct?????
Lisa M
Tampa Fl
Dx 5-2000
Hyd/int/arc
6-2001 Gleevec 400 mgs
8-2001 PCRU
STILL PCRU!
ZAVIE'S # 111
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

Amy,
Sorry you have been so sick.
My husband, John, has not had an increase in kidney stones since diagnosis. He
did have a terrible kidney stone incident several years before being diagnosed
and had to have it removed through surgery.
Hope you feel better soon!
Dana, wife to John, dx 4/4/03
"Amy B." <aimesc31@...
Hi Everyone! I haven't posted in a while, I've been working and sick
sick sick at the same time. I can't afford to lose my job so I had to
work till I couldn't. I was wondering if anyone has had an increase
in the production of Kidney stones since being diagnosed with CML or
starting Gleevec. I have had three <not fun
in the hospital Friday and Saturday with the last one. My urologist
said that sometimes people with Leukemias produce kidney stones due to
a change in their body chemistry. Hadn't heard that before. If
anyone might be able to shed some light on this I would be grateful.
I will try to be more active in the group if I can stay feeling well.
I'm glad everyone is here and pray for each of you and your families
daily.
Amy B
cml 4/03
gleevec 5/03
CCR 9/03
6/04 PCR 0.096

Dear Bob
What a lovely idea. We will be in Germany on Wednesday, but will
email on Thursday. With the time difference with the UK, it should
arrive on time.
Best wishes
Annette

Sorry but can't read the entire email where to send it, could you
please post it again? Thanks, Pat

Houston's Fountains at Night.
http://www.mavican.nu/phpbb/viewtopic.php?t=50049

Dear Group,
I know we're a new group (138 members now), but we're
a group with a bunch of old timers who have know each
other for years as well as newcomers who need a
support group.
I'm going to ask the group a big favor. On Wednesday,
March 30th, my wife, Pat is turning 60. She is OK
with it and actually looking forward to it. She's
going to be a "Red Hat" lady and wear purple.
I thought it would be fun for her to get birthday
e-mails from all over the world. We are a pretty
tight-knit group so I'm asking if you to send Pat
birthday e-mails.
Her e-mail address is: gmastew@...
Please put something in the subject like like "Happy
Birthday, Pat" so she'll know what it's about and
won't delete it.
Please up a simple birthday wish in the e-mail and
sign off with your name and where you live.
Thank you so much!
I've discussed this with our moderator, Amy, and she's
OK with the idea.
Bob Stewart, Granger, Indiana
Dx 5/97
Zavie Zero # 54

http://www.mavican.nu/phpbb/viewtopic.php?t=50006
Wild Bill Cody's Great Great Grand Nephew

Life's Treasures
When we count our many blessings,
It isn't hard to see,
That life's most valued treasures,
Are the treasures that are free
For it isn't what we own or buy,
That signifies our wealth,
It's the special gifts that have no price,
Our family, friends and health.
Thank you ALL for being a treasure to me.
Wishing you all a blessed Easter Sunday.
Love, Peace, Hope & Prayers, Pat

Hi Cathy,

Is it me, maybe my computer has gone crazy......looks like a whole
new
format for the messages......
Looks nice!
If no one else sees anything different, nevermind.....!
Cathy

Congratulations, Bob. Happy Happy Easter
Best wishes
Annette and Rich (UK - soon Germany for BMS)

Fabulous news, Ginger. Congratulations and Happy Easter
Best wishes
Annette and Rich

Happy Easter, Lisa
Love
Annette and Rich

We believe. Happy Easter, Kathy
Love
Annette and Rich

Dear Groupies:
Just want to echo how uplifting it is to hear everyones' good news. And to tell
all of you how grateful I am for listmates who remind me that I am not alone,
and that cml is not an automatic death sentence.
Happy Easter to those of you who believe and Happy Easter Bunny and Great Candy
to those who do not.
Cheers,
Kathie in Kentucky (Florida)

For those of you who celebrate the Easter Holiday weekend and for those of
you that may not.
Have a wonderful weekend!
Lisa M
Tampa Fl
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

blessings to all on this Good Friday and Purim.
chris in minn

Hello to everyone,
Just got my Quantative PCR results back---I'M STILL A
BIG, FAT ZERO!!!!!!! Yeah!!!!!!!!
Bob Stewart, Granger, Indiana
Zavie Zero # 54

Hi Richard,
Unlike FISH tests that can have a false postive rate of 5%-7%
depending on the probe they use, PCR's do NOT have a false positive
rate.
Each lab however, has different sensitivities which can result in
the same patient with the same sample being positive in one lab and
negative in another.
Zavie is a perfect example of this as he has had PCR's done at
several different labs. Some of which were negative and some
positive.
There is great variation as to the quality of PCR's. Things that
can effect the test include how much RNA they extracted, how many
times they ran it through the cycle and how long they waited to do
the test.
There are labs whose techniques are more than questionable and I
think that if anyone was to accurately say that they were negative
on a PCR, it would have to come from one of the major centers. Less
than 10% of patients are supposed to be PCRU but if you look at just
our little sample of patients on this list, I'd say the number is
far higher than that. Are we just a lucky group? Or are many of us
getting tested with questionable labs? I'd guess the latter.
Being positive doesn't mean that you're going to relapse however so
try not to worry about it. The vast majority (90%) are positive on
the PCR. This is precisely why I want to still have regular BMB's.
You can't go wrong with the results of a BMB.
Take care,
Tracey

Thanks for extending yourself, Ho. Lynne, do you live in the City too?
Birdie, no, I don't. But Ho has been a long time member of our list and
has given us incredible amounts of information regarding treatment/therapy of
CML. I have missed seeing Ho post. I live waaaaay on the other side, East
Coast. Sorry! I wish I lived in the west coast...sounds great out there!
My brother in law lives in San Fransisco (oh God, forget....Foster City?)
but I have never visited.
-LynneAndrews

Huge congratulations & hugs coming to you! Cured sure sounds good.
Thanks for posting your inspirational message.
God bless.
love,
Kathy
dx 5/03

Today I received a copy of results from the test on the Mar. 7. The
test I took in Feb. was lost (3 of 5) since Aug. I had to change
insuance companys Mar. 1 (my bosses idea) so this blood test is from
a different lab but appears to be the one recommended last June.
The results read: BCR-ABL1,CML, PCR, Quant. b2a2 transcript
<0.001% B3a2 transcript 0.015%. The ONC's nurse faxed this to me
just before she put it in Dr.s folder for review so am waiting to
see if he finds any need to discuss this with me. If my memory of
other list mates postings this is within the acceptable range to
remain undetectable (3-4%??). Since I have nothing to compare this
to and the ONC told me not to concern myself if it was a small
number I will wait for notification without worry.
Richard H.
dxd 2/03
Gleevec 3/03
PCR-U 6/03
Q-PCR 3/05 0.015%
Zavies club #530 (If detectable, Hold that # please)

Just checking in with the group. Seems like I am living in the fast
land and can barely find time to read the posts. Congratulations on
all the wonderful news that is being posted. What an upper it is to
seen that the treatments are working and so many list mates
are "undetectable". Five years and "cured" WOW and WOW there should
be a full weekend party for achieving this. Dane, thanks for you
sharing your journey it gives real hope for all of us, yes even the
occasional down day reminds us to remain strong as we progress on.
Richard H.
dxd 2/03
Gleevec 3/03
PCR-U 6/03
Zavie's club $530

Thanks, all, for your very knowledgeable comments, and Nancy, for
that book recommendation. I'm so very glad I found this group.
Birdie

Oh, a couple other comments that I forgot to make. When I was first
dx and was looking for supplements, I think that when I picked up a
bottle of echinacea, it said right on it 'not for myeloid diseases'...
so I never gave it another thought. I think of this supplement as
something that people use when they want a quick, short term boost to
their immune system....like when they feel they are coming down with
a cold.
A good basic and good book about supplements is The Green Pharmacy by
James Duke, PhD, and very qualified. Worked for the US FDA for many
years. He traveled the world looking for 'natural' medicines, used
for centuries...and he has a nice writing style. This is in paperback
and not costly.
Nancy C.

Hi Birdie and list,
I don't have much time for a response....I am packing and heading to
Santa Barbara today......we'll be celebrating my Mom's 85th birthday
(my Dad is 89). When Dr. Druker and I talk about treatment options,
I always remind him if it wasn't for my cml, I have 'longevity genes'.
Most of my supplement recommendations come from the licensed
naturopath that I see......and then often I cross-check that with the
clinical pharmacist at OHSU, to make sure there is no interaction
with Gleevec. I am not really using any immune boosters per say....
but I am doing some things to improve the functioning of the immune
system. Much/most of your immune system stems from the gut, so
it is important that your gut is functioning well. Mainly this means that
you have good bacteria in your gut vs. bad bacteria....and this is
where the alkaline diet helps. The good bacteria wants an alkaline
environment. Gleevec is dumping lots of acid (esp if you take 800mg
like I do) into the system. I also take liver support, a combination
of stuff including milk thistle.
When I return maybe I will write a little more about these topics if
there is some interest. Especially more about diet....which is a
starting point.
Nancy C.

Birdie,
You do need to be very careful with supplements. Many supplements --
even so-called "natural" products -- can affect your blood counts in a
variety of ways. They can affect platelets and blood clotting, your red
and white cells, etc. You should always consult your doctor and do your
own research to see exactly what effects supplements may have. There are
numerous legitimate sites online with this information -- just be sure
you look for an independent Web site, not one run by the supplement.
Look for information affiliated with major medical institutions, for
instance. Not all supplements are bad, but some can do you more harm
than good, especially when you already have a health problem. Nancy C.
is the supplement guru.
jennifer g.
=======================================
You can make a difference today in the life of a cancer patient
tomorrow.
Please support the Leukemia Society with your donation:
http://www.cmlsupport.com/seejenrun.htm
=======================================

Congrats Dane! Your daughter is beautiful. I am very excited for you.
CBC shows my counts are fine. I had my first fish test today since
discontinuing Gleevec. Keeping fingers crossed that my remission
holds. Debra

Hello John,
We were diagnosed on the same day - 5 years ago! WOW!
They told me that day I had about 6-8 years left to live...
but I never believed them <big grin
There are now many memorable dates in my past:
March 23, 2000 - CML diagnosis day
March 24, 2000 - learned how to self-inject interferon
May 10, 2001 - Gleevec was FDA approved
June 3, 2001 - took my first Gleevec dose
Sept 17, 2001 - BMB results showed NO BCR/ABL and 0 PH+ cells!
April 13, 2002 - got married to my best friend.
Dec 13, 2004 - walked/ran my first 1/2 marathon and I wasn't dead
last in my age group either.
May we all continue to mark our memorable days for a long time to
come. There's a reason we are all here on this continued journey
called 'LIFE'.
To your good blood,
Gale Bacon

CONGRATS Ginger!!!
Your post and John's are what keeps me saying 'I AM FANTASTIC'!!!
With you 'Group' here for me. . . I am not the 'lil' engine that could'. . . "I
KNOW I CAN"!!!
Take care Group. . . as always. . . in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

CONGRATS John!!!
As I told my children after outliving my 'mortality rate'. My brother and sister
survivors have celebrated their 5th & 6th year anniversarys with our gold; why
not 10, 15, 20, 25 years. "I AM FANTASTIC" & so are all of "U" group.
"K"
"I AIN'T FINISHED YET"!!!

Received some preliminary test results from a bone marrow biopsy I
had last week.
The test showed that I am now utilizing 99% of my sister's bone
marrow and only 1% of my own. There is no evidence of leukemia on
a cytogenetic level.
Not completely out of the woods...the next level of testing could
show small amounts of the disease....but this is still something of
a home run.
http://www.fototime.com/F17AA357DD966CA/orig.jpg

Dear Ginger:
Congratulations on your cure. Keep it up!! love MJ

Hello everybody,
To add to Novartis's recommendation I would like to remind everyone that
Echinacea is an immune stimulant. We and many others would think it would be
a good idea to take this supplement but indeed it is NOT GOOD for any one
with Leukemia.
A dear friend who has CLL and who also use to see the same ONC I do had a
continuous rising of the WBC and for the life of our ONC he could not figure
out why since he looked for every possible reason and found none.
Finally my friend admitted to taking Echinacea and the Dr. explained that it
induces the growth of the WBC and of course this would be very dangerous for
any one trying to rid their blood of them. Especially Leukemia Patients.
With that short story, I urge all of you to always tell your Dr about any
supplements you may be taking or thinking of taking.
Both my Doctors (Primary and Cancer center) ask me to refrain from anything
other than a daily multi vitamin such as Centrum.
Lisa M
Message: 23
Date: Tue, 22 Mar 2005 22:29:04 -0000
From: "nettee0" <elizabeth.constable@...
Subject: Re: New File (FAQ)
Dear Tracey
You have done such a good job on the FAQ, I can remember asking all
those questions when Rich was diagnosed, well done.
You have mentioned St John's Wort being contra-indicated with
Glivec, but Novartis have also advised not to take Echinacea as
well. Below is an email I received from Novartis when I enquired
about Rich taking Echinacea.
"Thank you for your recent enquiry regarding the combined use of
Glivec® (imatinib) and echinacea. The two products are not
recommended for use together because they are both metabolised by
the liver and it is thought there is the potential for an
interaction to occur".
This was received from the Medical Information Officer at Novartis.
Sending lots of love and appreciation.
Annette

Cross Posted
Heads up! New kinase inhibitor targeting BCR-ABL - Dr. S. Nimer on the is
part of the development team.....
Cheers,
Cheryl-Anne
Dr. Jerome Groopman Chairs Onconova Therapeutics Inc. New Clinical Advisory
Board
BIOWIRE2K
PRINCETON, N.J.--(BUSINESS WIRE)--March 23, 2005--
Board to Advise Development Team that Spearheaded Recent
Publications on Discovery of Novel Kinase Inhibitors in Two Leading Journals
Onconova Therapeutics, Inc., a privately-held company focused on cancer
therapy, announced today the creation of its Clinical Advisory Board (CAB),
chaired by Dr. Jerome E. Groopman, and the appointment of its first five
members. Onconova's CAB members are distinguished oncologists from leading
medical centers in the U.S. and will advise the company in clinical and
regulatory strategies, particularly for the ongoing development of the
Company's lead anticancer agent ON 01910.Na. This novel non-ATP competitive
kinase inhibitor selectively blocks several important targets in cancer. The
drug candidate entered Phase I clinical trials at the Johns Hopkins Kimmel
Cancer Center, Baltimore, MD in July 2004. The CAB met for the first time
this month in New York.
Two Onconova kinase inhibitors have been the subject of papers published in
early 2005. ON 01910.Na was the subject of a peer-reviewed paper titled "ON
01910, a non-ATP-competitive small molecule inhibitor of PLK1, is a potent
anticancer agent," which appeared in the journal Cancer Cell in March (Vol
7, 275-286, March 2005). The company's advanced preclinical stage compound
targeting BCR-ABL, involved in Chronic Myelogenous Leukemia (CML), was
featured in the Proceedings of the National Academy of Sciences in February
(PNAS February 8, 2005, vol. 102, no. 6, pp 1992-1997)
Onconova's Clinical Advisory Board is chaired by Dr. Jerome E. Groopman, who
holds the Dina and Raphael Recanati Chair of Medicine at the Harvard Medical
School and is Chief of Experimental Medicine at the Beth Israel Deaconess
Medical Center. Dr. Groopman was Chairman of the Advisory Committee to the
FDA for Biological Response Modifiers. His research has focused on cancer
and AIDS. He is also a writer for The New Yorker, and has written three
popular books, most recently "The Anatomy of Hope". Other founding members
of the CAB are Dr. James F. Holland, Dr. Ross C. Donehower, Dr. Stephen D.
Nimer, and Dr. William N. Hait.
-- Dr. James F. Holland, Distinguished Professor of Neoplastic Diseases at
Mount Sinai Medical Center, NY, received the prestigious Lasker Award in
1972 for his work in cancer chemotherapy. Dr. Holland has been working
closely with Onconova on developing preclinical models for testing
ON01910.Na.
-- Dr. Ross C. Donehower, Ludwig Professor in Clinical Investigation of
Cancer, is Director of the Division of Medical Oncology at the Johns Hopkins
Kimmel Cancer Center and is an expert in the pharmacology of
chemotherapeutic drugs.
-- Dr. Stephen D. Nimer is the Head of the Division of Hematologic Oncology
and Chief of the Hematology Service, Memorial Sloan Kettering Cancer Center,
NY. Dr. Nimer received one of two awards given to U.S. investigators by The
Leukemia & Lymphoma Society as a Specialized Center of Research Excellence
in myeloid malignancies.
-- Dr. William N. Hait, Director of The Cancer Institute of New Jersey and
Professor of Medicine and Pharmacology, UMDNJ/Robert Wood Johnson Medical
School, NJ, is an expert in breast cancer and is conducting basic research
in signal transduction systems altered in malignancy.
"All of us on the Advisory Board are looking forward to marshalling our
energy and expertise to the development of the PLK1 inhibitor (ON 01910.Na)
as a novel anti-cancer therapy," said Dr. Groopman.
ON 01910.Na is the first in a new class of non-ATP competitive kinase
inhibitors being developed by Onconova that discriminate between cancerous
and normal cells by targeting specific checkpoints in the cell cycle. In
pre-clinical animal studies, ON 01910.Na was active against most tumor
types, including those resistant to standard chemotherapy, and did not
exhibit common toxic effects of chemotherapy such as anemia or weight loss.
The Clinical Advisory Board will also advise Onconova on other drug
candidates being developed by the Company. These include ON 01210,
Ex-RAD(TM), for protection from whole-body radiation, being developed in
partnership with the Armed Forces Radiobiology Research Institute (AFRRI);
an advanced preclinical stage compound targeting BCR-ABL involved in Chronic
Myelogenous Leukemia (CML). A key attribute of this inhibitor is its potent
activity against all mutant forms of BCR-ABL kinase found in drug-resistant
CML. The Company also has a strong pipeline of specific enzyme inhibitors,
applicable for cancer, autoimmune, ophthalmic, and central nervous system
indications, in earlier stages of development.
About Onconova
Onconova Therapeutics, Inc. discovers and develops small molecule, patent
protected drugs that employ novel approaches to combating cancer and other
diseases. To date, nearly 20 U.S. patents have been issued. In addition to
the development stage compounds described above, the Company has a strong
pipeline of specific enzyme inhibitors, applicable for cancer, autoimmune,
ophthalmic, and central nervous system indications, in earlier stages of
development.
For additional information on Onconova Therapeutics Inc., visit the
company's website at <http://www.onconova.com/

Happy, Happy, Anniversary John! And may you and the rest of us be blessed
with many more.
I am coming up on my 5th year too (May) and it's been quite a journey
thinking back to those first days and where I am now.
Lisa M
Zavie's #111
From: John M <johndee_54@...
Subject: Anniversary (cross posted)
Hi all,
Today is my 5th anniversary of being diagnosed with
CML. May the 15th will be my fourth anniversary of
being on Gleevec, which I am eternally gratefully for.
I will now look forward to celebrating my 10th. Even
if Gleevec stops working, there are new treatments
offered that make the future survival of CML look very
bright.
Take care,
John M
#425 Zavies Zero Club
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Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
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that is FANTASTIC!!!! so very very happy for you!!!
Cammy T

Hey Ginger,
Is this really the Best Little Turtle in Texas? Obviously a misnomer now.
Congratulations! Wonderful news from a real warrior/survivor who is now
thriving!
All the best,
Susan L

Hi Nick,
My BMBA test has been sent to Genzyme for almost 5 years now.
I would like to believe that they are accurate.
This lab was the one we used for my diagnosis. The one that indicated PCRU
for a very long time and the one that indicated a slight detection on my
last years BMBA.
I am currently awaiting the results of my last BMBA which was done on the
14th of March and will post them to the group for discussion since I have
recently had one lab indicate no detection, another indicate some detection
and both of these test were done by PB.
Personally, I feel my doc will trust Genzyme results over the others so
hopefully that test will provide good results.
Lisa Martinez
Tampa Fl
Dx 5-2000
Hyd/int/arc
6-2001 Gleevec 400 mgs
8-2001 PCRU
Message: 6
Date: Tue, 22 Mar 2005 01:37:43 -0000
From: "ntw60cml" <ksnwoods@...
Subject: Fish/PCR testing
I was interested in the discussion around PCR testing and wide range of
values obtained. Has anyone used Genzyme Genetics, and if so, how do they
measure up? This is the lab my onc uses. Nick
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Outgoing mail is certified Virus Free.
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I do not post much and I only read when I can, but I thought I would
share some information because it could be helpful to others.
For those of you that don't know me here is a very brief discription
Dx'd 11/98
INF 12/98 stopped 4/99
MUD BMT 7/99
Relapsed 7/00
INF 9/00 stopped 1/01
PR-1 trial 1/01 stopped 3/01
DLI 4/01 (Donor Lymphocyte Infusion - white blood cells from my
donor)
4/01 INF stopped 6/01
8/01 Gleevec stopped 10/01
Major infection haspitalized 9 days 10/01
300 mg Gleevec 12/01
DLI 5/02
PCRU 2/03
12/03 lower dosage of Gleevec to 200mg
2/05 NO MORE GLEEVEC
That's right I have been PCRU for over 2 years and 100% donor for
over two years. I am one of few that will be able to get off
Gleevec and will be able to use the "CURED" word. I am so excited
that I am having a hard time containing myself.
Of course Dr. Talpaz is watching me closely, I will get a PCR test
monthly and we will go from there, since I relapsed after
transplant and have been there done that I am not conserned at
all of a relapse, as I said I am 100% donor.
I just wanted to share information in case there is anyone out there
in my position (relapsed BMT on Gleeevc) and wanted to know what
next.
Ginger

Hi Nancy,
I am glad you got a chance to see the webcast. Dr. Laneuville used
some very nice graphics to help us all understand more about CML and
how Gleevec works.
Thank you for sharing your feelings about MSKCC. I like Dr. Nimer,
his nurse and the staff there too. I really like everyone at the
Royal Vic as well. I guess you can say I am a bit torn as I do feel
I get very good care in both places. Since I have paid into the
Canadian Helathcare system for so many years it is good for me to get
treated there as my treatment costs are fully covered.
The point about the QPCR is that it just shows us that no matter
where we go, there are bound to be some glitches in the system.
Regarding your question about comparing results, yes you are right it
is best to only compare results with the same lab, and that is
exactly what I do. I have been having QPCRs at Sloan since February
2003 and I compare the Sloan results with the history I am collecting
from Sloan as time goes on. I track my Royal Vic results
separately. I have created an excel spreadsheet for both centers so
blood test and QPCRS are tracked.
Although I do not compare the Sloan results to the Royal Vic results,
for curiosity sake, you and others might wnat to know that there
isn't much difference in the results, both have been PCR negative
since August 2003.
The extra money is worth it for me. My Aunt and a very close friend
were treated at Sloan and my family who still live in the States find
comfort in knowing that I also go there once every six months.
However, I have very good confidence in Dr. Laneuville and the very
good staff at the Royal Vic. In fact, I think I am very blessed to
be treated by two very top notch doctors.
We only get once chance at this life and I find tremendous comfort in
being well looked after. The bonus for me is that I get a chance to
visit friends when I go to Sloan and I get to visit major places in
NYC that have very special memories for me from my childhood.
Cheers,
Cheryl-Anne

Cross Posted
This news tidbit highlights the very innovative use of nanotechnology in
helping researchers to screen compounds as drug candidates.
Good reading!
Cheryl-Anne
Nanowires track molecular activity
As molecules go, DNA and viruses are relatively large. Many prototype
sensors are aimed at detecting large biological molecules, but small organic
molecules also play important roles in biological systems, and most
pharmaceutical drugs are small molecules.
Researchers from Harvard University have found a way to use transistors made
from silicon nanowires to gain information about how small molecules bind to
proteins. The nanowires are 20 nanometers in diameter, and the electrical
conductance of the devices changes measurably depending on whether target
molecules bind to receptor molecules attached to the nanowires. A nanometer
is one millionth of a millimeter, or the span of 10 hydrogen atoms.
The nanowire transistors could eventually be used in sensor arrays capable
of simultaneously detecting many different molecules, including small
organic molecules. The method is potentially capable of rapidly screening
drug candidates, according to the researchers.
The researchers' prototype consists of arrays of several dozen sensors that
sense when adenosine triphosphate (ATP) molecules bind to the receptor
molecules on the nanowires. The researchers showed that the device could
measure how effectively the small molecule drug Gleevec blocked the
ATP-receptor binding.
The receptor molecule Abl binding with ATP is part of a cell signaling
process that, when altered, plays a role in many diseases. Gleevec is used
to treat chronic myelogenous leukemia.
The researchers also showed that it is possible to measure the degree to
which four other small molecules blocked the ATP binding.
The sensors could be ready for practical use in two to five years, according
to the researchers.
The work appeared in the February 14, 2005 issue of the Proceedings of the
National Academy Of Sciences.

Hi Debra,
I don't know if you know, but Jerry never had a BMT. He is on the
BMS drug. It sounded like you thought he had a BMT so I wanted to
clarify.
Take care,
Tracey

Hi.
Jerry's website is www.newcmldrug.com. He doesn't have a caring bridge site.
He's in CCR after years of fighting CML and finally achieving it in the BMS
trial.
Susan L

Cheryl,
Thanks for posting the link to the Canadian Forum. I took a look at it and
want to take time to watch more. Very Interesting.
I want to clear something up. I do not know anything about MSKCC's lab and
any possible disorganization of it. I'm still pretty new at all of this. My
only disappointment was with a secretary who didn't send me results I
requested. I think that was only an office procedure type of thing. I am
certainly not qualified to question any results from their lab. I am extremely
grateful that they are very thorough and rely on all tests--bma, FISH, and
qpcr.
I am very pleased with my treatment at MSKCC. I have extreme confidence in
my dr. and feel fortunate to be treated at a major cancer center. I like my
dr. very much and travel two hours each way to see her every six weeks.
I'm sorry to hear that your qpcr is costing you so much money. However,
it's important to be seen at a major center, so I'm sure it is worth it for
you.
Also, when they compare test results isn't it important to be comparing the
same lab year to year?
Thanks again for the link.
Nancy in N.Y.
dx. 1/04
Zero Club #756

Greetings My CML Friends,
Please forgive me but this will be a long post!
I think most of you here know me or will remember me. I'm Patricia
Reynolds, 42 from TN, I am married to Jim, I have two grown children,
three grown step-children and six stepgrandchildren. I no longer work
as the CML and Gleevec side effects have robbed me of my ability to
work. I was diagnosed November 28th 2003 after an emergency room visit
with severe pain in my left side. My WBC was 165,000. I was in the
hospital for three days and prescribed hydrea which I took until
Decemeber 15th when I was then started on 400mg of Gleevec. I
continued to seen by the local oncologist for about three months.

Hello, having a little "brain fart" and can't find the address to
Jerry's Caring Bridge? Can someone please share it with me? Thanks.
Still struggling with the BMT vs. BMS decision. Debra

Dear Lynn:
Thanks for the books name and thanks for the advise. I am feeling a
bit better, still tired, but resigned to the fact that I will have to
curtail activity to take care of me. I will order the book you
suggest, it sounds like it will be a must read for me. As it turns
out my next batch of company will only be my daughter-in-law and our
31/2 year old granddaughter, so I will enjoy their visit without
being worn out with the one year old twins.
I'm trying to learn to take care of myself, but it's a struggle.
Kathie in Kentucky (Florida)

here's the new md anderson spring 2005 newsletter.
http://www.mdanderson.org/publications/insights/
Jim

No, I don't avoid dental Xrays. I have them yearly. So far never had a
problem with them.
Margot

Hi John,
Happy Anniversary! Yes, the future looks bright.
God bless.
Kathy
dx 5/03

http://www.fototime.com/DF6015F257A4363/orig.jpg
The more time I spend in Houston, the more impressed I become with
her beautiful parks.
Pioneer Monument and Reflecting Pond
Hermann Park
Houston, Texas
717

Hey Tracey,
Good job on the CML FAQ. We now have three good tools for Newbies,
the CML primer, your FAQ and the link to the webcast from the CML
Patient forum.
Lots of good information for everyone here!
Cheers,
Cheryl-Anne

I'm also in the SF Bay Area, in Berkeley. I see a
local hem-onc in Oakland and go to UCSF twice a year.
Ho-Leung Ng

Hi all,
Today is my 5th anniversary of being diagnosed with
CML. May the 15th will be my fourth anniversary of
being on Gleevec, which I am eternally gratefully for.
I will now look forward to celebrating my 10th. Even
if Gleevec stops working, there are new treatments
offered that make the future survival of CML look very
bright.
Take care,
John M
#425 Zavies Zero Club

Cross Posted
Hello All,
The webcast from Saturday, March 19, 2005 is now available. You can view it
through the following URL: http://events.startcast.com/events/139/B0001/#
Although it is the "First Canadian Forum on CML" the contents include a
very good overview given by Dr. Pierre Laneuville, one of the chairs of the
Canadian Consensus for CML treatment in Canada. His overview is very
relevant to everyone and particularly "newbie's" will find the information
helpful. Dr. Laneuville is joined by Mr. Rudy Putns, CEO of the LLS in
Canada, who gives a very good overview of the mandate of the LLS in Canada,
Zavie Miller with a very good presentation of his Zero club, and myself with
an explanation of support groups. I hope many of you will have an
opportunity to view the presentation and provide some feedback. We hope to
do more of these in the future.
Sincerely,
Cheryl-Anne

I thought this was a very interesting article.
Good reading!
Cheryl-Anne
FDA Works to Speed the Advent of New, More Effective Personalized Medicines
As part of an agency-wide initiative to speed development of new medical
products through the science of pharmacogenomics, the Food and Drug
Administration (FDA) today issued