Excerpt from the book, "Magic Cancer Bullet" by Daniel Vasella

2007-05-31 21:22:06

"Let's Not Count Pennies"
We decided then and there that the number of patients who might benefit
from such a drug should not concern us. As a management team, we have
the duty to put a product on the market when there is a fair chance
that it will change the practice of medicine-even if it only helps a
small number of patients. In that sense, we certainly do not function
like many other corporations.
I knew what we had to do, that we must not count pennies and must
disregard costs. We would find the money. "I don't care what it
costs," I told our head of global technical operations, Andreas
Rummelt. "Money doesn't matter. Let's just do it."

Re: [cml 2] Digest Number 218

2007-05-31 13:44:45

Hey Group:
I began taking the FLU shot years before the Gleevec life and was told to
continue by all of my Doctors due to my numerous health issues. As for the
Pneumonia shot, over the years I have been told every 3 - 5 years; until this
year during my hospitalization, I was told that I would only need one for life.
I haven't found out if the vaccine has been updated, I do plan to have one this
year and the flu shot every year. After all, it hasn't hurt me, and I need all
the help I can get. I have been told also that it doesn't protect one from the
new strains of flu.
Question: Has anyone been made aware that some restaurants and/or markets are
cutting down or not serving and selling chicken???
As always, you are all in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Re: [cml 2] Future $$$ of Gleevec in the US Jennifer/Lynn et al

2007-05-31 10:27:31

I would like to chime in to say this is a really relevant topic for
this list and any other list dedicated to CML.
As you all have noted it is a difficult subject to bring up, but it
does need to be discussed.
It doesn't really matter what country you live in, we are all
connected, not only with this issue but with many others as well.
Jennifer's post brought up some really good issues about health care
coverage by employers (private insurance) and interestingly, the
issues in the U.S. are very similar here in Canada. As an ex-pat
(American living in Canada) I get to see how it works on both
sides. But even in Canada, a country with a "national" health care
program, coverage from one province to another is quite different. I
have to say though that Quebec has done a good job for Gleevec
patients. Quebec is probably the only province in Canada that covers
the cost of Gleevec (yearly deductible of $800.00), if you are not
enrolled in a private health care plan, regardless of your income.
That is because the Government of Quebec has declared Gleevec
and "essential" drug. This ruling was the result of lobbying by the
medical and regulatory division of Novartis in tandem with the Key
Hem/Oncs in this province. Which underlines the importance of a
professional relationship between the drug companies and key opinion
leaders. There is a cost to this however, we do pay higher taxes and
here in Quebec the provinical government is very involved in health
care issues and does regulate certain things that would/could be
deemed to have a "negative" impact on the overall health of it's
citizens.
A couple of years after being dxed with CML, I lost my employment as
my employers knew that I would switch over to Gleevec and they were
advised by the insurance company that this would cause them to raise
coverage premiums significantly. The breech of trust of my employers
and the insurers was quite troubling to me. Unfortunately this is
something that happens more than we like to think. And yes, by the
way, there was a lawsuit. However, with the excellent health care
coverage we have here in Quebec the compensation wasn't anything near
what it should have been considering how hard it is to find full time
employemnt that would include private coverage again.
The point should be raised however, that government, in the U.S.,
Canada or anywhere, should be more involved in picking up the tab for
drugs like Gleevec because it allows those of us who are still in
the "prime bread winning" stage of our lives to be fully functional,
tax paying citizens. Some of us can remember the pre Gleevec days.
We now have the ability to take this nearly fatal disease and live
nearly normally. Simply put, Gleevec has shifted the costs of
managing this disease out of the health care system and into
private insurers -there are less BMT's for CMLers and all things
considered the quality of life is much much better.
I really do not think Novartis or BMS will lower the cost of their
drugs, no matter how many other competitors come onto the market.
What we need is a total cure, one that lets us get off this drug
sooner rather than later. The discouraging thought is that there
too, the cost of a drug like that will be amortized to cost the same
as if you stayed on Gleevec for 30, or 40 years or whatever.
It is absolutely painful for me to hear of some of the hardships some
patients must go through to get the drug; as if getting diagnosed
with CML wasn't bad enough, the financial management of the disease
becomes a horrifying nightmare for way too many people.
You are right Nancy, the biggest issue we need to consider in any
election process is what will happen to health care. Just last week
wasn't there a story in the news about one of the major suppliers to
the car industry going out of business because they could no longer
afford to pay American employees work related benefits. They felt
they could no longer compete with the cheap labor available in other
countries.
But, like John pointed out it is all about money. Let's face it none
of us work for free. The more we increase our demands for better
salaries and benefits the more it drives the cost of goods and
services up, it is a viscous circle. It isn't just a problem common
in the drug industry, everybody has their hand out. If you could get
paid more for your job, are you going to refuse it - no you are not
going to do that are you? And what about lawsuits? Not just in the
drug industry, remember the case a few years ago regarding McDonalds
and a particularly hot cup of coffee? McDonalds spent millions of
dollars because of it. For healthcare in the U.S., lawsuits for
malpractice and cases against drug companies have to be factored into
healthcare costs. We all want to make the most, but pay the least.
I am not talking in defense of the drug companies, this is just
reality.
We "sick" people are in the minorty and as a minority we cannot
change the rules, because the majority (healthy) people are not
willing to pay to improve the situation of the minority. The case in
point is how many of us really worried about all of this before we
got sick? It is this disparity that makes it very hard for our
voices to be heard - but it doesn't mean we should stop talking.
This has been an interesting topic and I hope it continues. And,
just in case you are wondering, while I do work in the healthcare
industry, I do not work for a drug company. I am very concerned
about the rising costs of healthcare and I do worry if my private
insurance will ever run out or what other benefits I may not have
access to because of CML.
Best Regards to everyone,
Cheryl-Anne

Novartis in $5.1B buyout of Chiron

2007-05-31 00:23:49

http://money.cnn.com/2005/10/31/news/midcaps/chiron_novartis.reut/index.
htm

Re: Future $$$ of Gleevec in the US

2007-05-31 00:14:09

Hi Jennifer,
Money!! No matter what form of medical insurance, money is the
driving force. Many countries have a national heath plan and the
amount of personal tax collected seems to have a direct effect on
how well the plan works. We are in dire need of something that is
fair and equitable to all, but how it is financed is the big
unknown. Lets try to come up with some solutions and then push for
reform.
John M

RE: [cml 2] Future $$$ of Gleevec in the US

2007-05-30 13:37:29

You can always join the movement to develop a national health care
system.
Jennifer G.
www.cmlsupport.com

Re: Have A Call In To The Doctor; Requesting Opinions!

2007-05-30 09:56:34

Hi Renee,
There are a variety of reasons he could have passed out, most of which
aren't that serious. Dehydration is just one possibility, low blood
pressure and low blood sugar are two more. It's also very possible
that it has absolutely nothing to do with either Gleevec or CML.
Let us know what the doctor says but try not to worry.
Tracey

Future $$$ of Gleevec in the US

2007-05-30 04:04:15

Hi All,
One thing that has me concerned lately is the price of Gleevec for
our future. For many of us who have been diagnosed at a
fairly "young" age, I worry about our lifetime payout coverages from
our private insurance companies.
Does anyone have any information or rumor about the price of Gleevec
going DOWN? Or, when does the drug patent run out and the generic
version come about?
I read somewhere that Novartis bought out the largest "generic"
company. Does that mean that they will now market and control the
monopoly and the price of Gleevec and it's future generic version?
I really feel that with the high price of this drug that saves our
lives, there must be some type of reduction in the future. Has
Novartis broke even with the cost of the initial studies, etc? Is it
now all pure profit for them? Will the new competition in CML drugs,
like BMS, eventually lower the price of Gleevec?
What is going to happen to all of us when our lifetime medical
coverages max out? I'm sure it will happen with frequent Dr. visits,
every 3 month PCR tests, cbc's, etc.. and biopsy's.. You all know the
drill.
It must be horrific for all those CML members who do not have any
insurance coverage and live in the US.
I am very grateful that we have Gleevec, but worry about the price of
this drug. The experts now say that CML will probably not be our
demise. So, with that being said, what is going to happen in our
future and our ability to pay for this lifesaving drug?
Sincerely,
Lynn (Snickersunny)
Dx-d 12/03
PCRU
400 mg

Have A Call In To The Doctor; Requesting Opinions!

2007-05-29 17:21:01

My 19-year-old son James was dxed with CML on 7/4/05. He is a
sophomore in college, living in the dorms, about thirty minutes away
from home. Yesterday evening, he called to tell me that at about six
in the evening, he passed out. He was in a counseling class or
appointment--I am not sure which--and first got dizzy, then very very
hot. He left, and thankfully, a friend went with him. Outside, his
knees buckled and he blacked out. I am not sure for how long; he says
not more than a second or two. Someone called an ambulance, and the
EMT's went over him, took his vitals, and asked questions. He did
tell them about CML, and about being on 400 mg of Gleevec. They
finally concluded he was dehydrated, and drove him back to his dorm,
telling him to drink more and get some rest.
So, I am waitng to hear from the doctor's office.
Any thoughts?
Renee, trying not to be the typical over-worried mom

Re: [cml 2] Have A Call In To The Doctor; Requesting Opinions!

2007-05-29 16:01:09

Oh Renee,
I'm so sorry, you must be scared. I hope he is OK and it is just dehydration!
:{
Alicia
View our family's newest photos at webshots
The time goes by so fast..

Re: [cml 2] top cml conference-Giora

2007-05-29 08:31:45

Dear Giora, it is so unfair that you, as a patient, are not allowed to
participate. However, you have certainly gleaned more information than most of
us
would just by receiving the program. Thank you for sharing it, very
interesting to see all the people dedicated just to our disease.
Perhaps our doctors shall share this information with us? I don't know. I
have found out that I am getting a doctor from Hammersmith who worked with Dr.
Goldman as my new CML doctor, so perhaps when he arrives in the US I will ask
him about this conference.
Do you think the information shared at this meeting will be made public and
available like it is from the ASH Conferences? - Lynne Andrews

Re: [CML] top cml conference

2007-05-29 05:55:10

Sharf....I sent an email to the organization and told them I thought it was
shameful to exclude patients from the hematology conference. Afterall, most of
us know more about this disease than the average hematologist and would
certainly understand any data.
It concerns me that someone would not want us to know what they have to say.
Sue

Re: top cml conference

2007-05-29 01:55:29

Hello Giora,
Sorry you are unable ot attend the CML meeting in Genoa. Dr. Pierre
Laneuville will be there to present his BCR ABL data.
I will be seeing him on Monday and I will ask him if he can bring
back material and information for us to make a summary of the
meeting and post it to the group.
I'll let you know what he says'
Cheers,
Cheryl-Anne

top cml conference

2007-05-28 21:25:04

next weekend there will be a top important cml conference in genoa italy. i am
enclosing the program of the meeting so everyone can read the topics which cover
every aspect of cml today and the names of all the leading drs that will attend
and give presentations. the meeting is organized by ESH (european school of
hematologists) . they have a web site which lists all their activities
www.esh.org
since i thought it will be extremely important for cml patients to hear the
presentations and the data which will be presented i applied to esh and asked to
participate as a cml patient. they approved it and sent me the required forms. i
sent them the registration with the 550 euros fees and made all flight and hotel
arrangments.
sudenly yesterday i recieved an email from esh canceling my participation
claiming that this meetings are open only for hematologists and scitists. i
think it is a shame and no cml meeting should take place if there is no
representation of us, the patients.
here is esh email to me
Dear Sharf Giora
Thank you for having contacted us about our upcoming ESH conference on
chronic myeloid leukaemia to take place in Genoa on November 11-13, 2005.
I hope that you will understand that we cannot register you for this meting
which is reserved for haematologists. Indeed, the European School of
Haematology is an institution for continuing education for clinical doctors
and scientists and we do not as yet have a branch devoted to the education
of patients. As soon as this question arises on our agenda, I will certainly
inform you.
In the meantime, I congratulate you on the important work you are doing for
CML patients.
Kind regards
DiDi Jasmin
Executive Director, ESH
Centre Hayem
H?pital Saint-Louis
Paris 75010, France
Telephone : 33-1 42 06 65 40
Fax: 33-1 42 06 05 87
email : eshdi@...
website : www.esh.org
i will do my best to use my connections and get the most important data from
this meeting but it will not be the same.
here is the program
CML in the 21st Century
11-13 November 2005 - Genoa, Italy
Principal organisers: A. Carella, J. Goldman
Co-organisers: M. Baccarani, R. Hehlmann, F. Guilhot, N. Cross, A. Gewirtz, J.
Melo
.
Friday, 11 November
08.30 PLENARY 1 Chairs: John
Goldman/Angelo Carella
Lorenzo Pinna Protein kinases as drugable targets in malignant
disease
09.15 PLENARY 2 Chairs: Angelo Carella/John Goldman
Rick A van Etten Unravelling Abl
10.00 Session 1 Molecular update
Chairs: Alan Gewirtz, Giuseppe Saglio
Junia Melo Regulation of the Bach2 transcription factor by
Bcr-Abl
Nick Cross Tyrosine kinases in CML and related disorders
Giuseppe Saglio Induction of apoptosis as a targeted therapy for CML
patients resistant to imatinib
Andreas Reiter FIP1L1-PDGFRA positive myeloproliferative syndrome
Jim Griffin Development of AMN107, a novel second generation
inhibitor of Bcr/Abl
Nick Donato Targets and regulation of Lyn kinase in imatinib sensitive
and resistant CML
Alan Gewirtz Gene silencing strategies for the treatment of
refractory CML
Danilo Perrotti ReSETting PP2A tumor suppressor activity to
antagonize BCR/ABL leukemogenic potential in blast crisis CML
Jeroen Janssen Genes potentially involved in transformation of CML
Enrica Lerma Gene profiling what answers are possible?
14.00 Session 2 - Genomic instability
Chairs: Thomas Skorski, Pierre Laneuville
Jean Wang Abl in the genotoxic response
Tomas Skorski BCR/ABL regulates DNA damage and repair to induce
imatinib resistance and genomic instability
Martin Carroll BCR/ABL Disrupts the response to DNA damage leading
to chromosomal instability
Bruno Calabretta Genetic and epigenetic changes during CML disease
progression
Pierre Laneuville Genomic instability in transgenic mouse models of
bcr/abl
expression
Feyruz Rassool DNA damage and repair infidelity: a model for genomic
instability in myeloid malignancies?
15.30 Session 3 Stem cells and animal models
Chairs: Junia Melo, Bayard Clarkson
Ralph Arlinghaus Suppression of normal hematopoiesis by a modified form
of neutrophil gelatinase-associated lipocalin (NGAL) derived from
BCR-ABL-positive cells
Bayard Clarkson Possible strategies for selectively killing Ph+ dormant
stem cells
Connie Eaves Genomic analysis of CML stem cells reveals an altered
transcriptome and hidden mutants
Mhairi Copland Targeting quiescent stem cells
16.30 Session 4 BCR-ABL anD OTHER THERAPEUTIC TARGETS
PRECLINICAL
Chairs: Nick Cross, Michael Deininger
Nicholas von Bubnoff Prediction of resistance mutation patterns for novel Abl
kinase
inhibitors using a cell-based screening strategy
Oliver Hantschel Structure-function analysis on Bcr-Abl
Michael Deininger BCR-ABL kinase domain mutations: beyond imatinib
resistance
Carlo Gambacorti Passerini Conformation dependent binding of SKI-606 to Abl
Shinya Kimura NS-187, a new dual Bcr-Abl/Lyn tyrosine
kinase inhibitor
Tim Br?mmendorf Imatinib plus hypusination inhibitors
Saturday, 12 November
08.30 Session 5 BCR-ABL AND OTHER THERAPEUTIC STRATEGIES -
CLINICAL
Chairs: Rudiger Hehlmann, John Barrett
Moshe Talpaz Dasatinib (BMS-354825) Clinical results updated
Jorge Cortes AMN107 Clinical results updated
Michele Baccarani Imatinib high dose and imatinib in combination with
interferon
Gert Ossenkoppele HOVON study of imatinib and cytarabine in first chronic
phase CML
Ute Berger Treatment intensification by combination therapies
and dose
escalation: The
German CML-Study IV
Francois Guilhot Rationale of combination of TK with Interferon or
chemotherapy:
Preliminary results of the French trials
Jorge Cortes Farnesyl transferase inhibitors in CML: Still a role?
11.30 Session 6 Immune mechanisms and
immunotherapy
Chairs: Michele Baccarani, Robert Gale
John Barrett Immunotherapy strategies with or without
allo-transplants
Jeff Molldrem Unmasking self antigens as
vaccine targets
David Scheinberg Specific immunotherapy of CML
Monica Bocchia P210-derived peptide vaccine for minimal residual
disease
in CML
Richard Clark Evaluation of peptide immunization in CML (EPIC
study)
Hans Stauss TCR genes for the therapy of leukaemia
14.00 Session 7 Molecular monitoring & Abl mutations
Chairs: Tim Hughes, Neil Shah
Tim Hughes Early predictors of response to ABL kinase inhibitors
Andreas Hochhaus Outcome of patients after detection of BCR-ABL mutations
David Marin Long-term BCR-ABL transcript patterns
Neil Shah Not all Abl mutations are equal
Simona Soverini ABL mutations and resistance to TK inhibitors
Charles Schiffer How should molecular and mutational analyses be used
to advise patients with CML in chronic phase?
16.00 Session 8 MOLECULAR STANDARDIZATION
Chairs: Andreas Hochhaus, Giovanni Martinelli
John Goldman Standardisation an international perspective
Tim Hughes Towards international standardisation for
MRD measurement
in CML
Giovanni Martinelli Molecular standardization in monitoring in
the era
of dual TK inhibitors
Andreas Hochhaus European Proposal on Harmonization of PCR procedures
Sunday, 13 November
08.30 Session 9 Grafting strategies
Chairs: Alois Gratwohl, Charles Schiffer
Agnes Devergie Allo-SCT in 5000 patients with CML in 1st CP
The European experience 1995-2002
Jane Apperley Matched unrelated donor SCTs for CML-CP
Alois Gratwohl Do we need allogeneic HSCT in the tyrosine kinase
inhibitor era?
Angelo Carella Long-term survival in CML patients after autografting/IFN-a
and imatinib
11.00 Session 10 Leukemia-Net & Guidelines
Chair: Francois Guilhot, Richard Silver
Jorg Hasford Prognosis for CML patients
treated with imatinib
Pierre Laneuville Canadian Consensus Guidelines
for CML
R?diger Hehlmann Organization and highlights of the European LeukemiaNet
Bengt Simonsson LeukemiaNet Current progress
12.30 End of
meeting
i hope that we will be able to get the latest info from our drs and do
something about future participation of patients in such meetings.
shalom
giora
israel

? for the ladies (Alicia)

2007-05-28 15:36:09

Wow, thanks for the clarification Jennifer. I'll have to look further into it.
I looked it up and then asked my doctor and he said not to take any birth
control hormones. I'll try to research it a bit further myself.
Thank you,
Alicia
View our family's newest photos at webshots
The time goes by so fast..

? for the ladies (Alicia)

2007-05-28 05:33:38

Hi Alicia,
The Web site does *not* say that people can't take birth control pills
while taking Gleevec. It notes simply that there is an "interaction"
between the two, as with many medications. That's a big difference. And
that does *not* mean that you can't take them both. This interaction
could affect the level of Gleevec in the bloodstream, and so simply, the
dose may need to be adjusted. That's all.
Jennifer G.
www.cmlsupport.com

Leukemia Under the Microscope

2007-05-27 19:29:27

Leukemia Under the Microscope
By AMBER HSIAO
Contributing Writer
Wednesday, November 2, 2005
In a recent study, UC Berkeley researchers were able to use bone marrow
samples in order to analyze differences related to childhood leukemia. The
marrow samples contain a shortened version of a protein that is observed at
different levels of progression in children with leukemia.
"The goal of the study was to find differences in proteins among various
leukemia subtypes, which may be useful for clinical diagnosis or
understanding how different leukemias develop," said Christine Hegedus,
primary author of the paper and a post-doctoral fellow in the UC Berkeley
Molecular Toxicology Program.
Researchers initially examined cell lines, which are essentially
immortalized cells that are isolated from the human body, and then
manipulated for use in labs. When looking at these cell lines, many
differences in proteins were found between leukemia subgroups. A shorter
version of the protein called ubiquitin was found having greater levels in
some leukemia subgroups versus others.
"This protein is crucial to many cellular functions and finding a difference
in levels of a shortened version of the protein was extremely interesting,"
Hegedus said. "Therefore, we wanted to see if this difference is also seen
in samples taken from children with leukemia."
Researchers wanted to better understand ubiquitin by examining bone marrow
from leukemia patients. They collaborated with the Northern California
Childhood Leukemia Study at UC Berkeley to collect bone marrow samples from
children who had been recently diagnosed with leukemia.
"Again, there were many differences in proteins among the groups of
leukemias and we did see a difference in a protein that may be the shortened
ubiquitin," Hegedus said. "We are currently conducting follow-up studies to
determine the identities of the bone marrow proteins, including the one that
may be ubiquitin."
In order to examine the bone marrow samples, researchers used surface-
enhanced laser desportion and ionization time-of-flight mass spectrometry.
By using this technology, scientists can then look at the majority of
proteins present in a sample at any one time.
These protein samples are prepared by first placing them on a surface that
allows the proteins to adhere based on their biochemical properties. When
laser energy is applied to this surface, the proteins detach and travel down
a time-of-flight tube. The time that the protein takes to travel down this
path allows researchers to determine the mass of the protein.
"Using this technology, we were able to compare the proteins in the
different leukemias," Hegedus said.
The leukemia subtypes are broken down based on cell lineage and level of
cellular differentiation. Researchers also use proteome analysis, a way to
analyze all the proteins present in the bond marrow cells at any given time.
"Instead of looking at one or two proteins, we are looking at all or a
majority of the proteins in the cells at one time," Hegedus said. "This
allows us to quickly screen for differences in proteins which we can later
identify.
The main types of leukemia include acute lymphoblastic leukemia, acute
myeloid leukemia, chronic lymphocytic leukemia and chronic myelogenous
leukemia. Further studies are still needed to determine the significance of
the different levels of the truncated ubiquitin.
"Ubiquitin itself is important in many cellular processes such as growth and
differentiation," Hegedus said. "Most commonly, it acts as a tag on a
protein to target that protein for degradation. Therefore, a shortened
version that is present at varying levels may affect degradation of target
proteins leading to a variety of defects."
These findings may pave the way for future research on childhood leukemia.
"Our results may open new doors for research by providing specific target
protein for research on how these diseases develop or how to treat them,"
Hegedus said. "Hopefully our study will drive the development of this and
new technologies for cancer research."

Part I CML Patient Meeting - October 29, 2005 -Montreal

2007-05-27 16:41:25

CML Patient Meeting - October 29, 2005
Hello Everyone,
This is a very long post.
As promised, I am happy to provide a summary of the meeting.
First of all, it just wouldn't be a meeting without the people who take time
and join us. We were about 40 patients, family/friends. Thank you to
everyone for joining us.
We had plenty of time for socializing over delicious food while catching up
with old friends and making new ones.
The meeting started just after 1:00 PM. We recognized some neat milestones
from some of the members:
- Janet is back from her year sabbatical which included hiking up Mt.
Kilimanjaro, Africa's highest peak, without oxygen. She brought me back a
rock and a lovely photo of her and her husband Rick standing on the top of
Kili. I should also mention that Janet is the first patient in Canada to
take the 400mg tablet.
-Christine has moved from Halifax to Ottawa and is a part time resident in
Montreal, staying with me while she participates in the BMS trial at the
Royal Vic. We've started calling her Aunt Christine and we are enjoying her
company very much. Our fingers are crossed and send her much love and good
wishes for a good response to the BMS drug.
-Julie raised over $10,000 for the Canadian Cancer Society for the relay for
life. Yeah Julie - big congratulations
-Rita started art classes and provided us with the idea (and championed the
project) of commissioning the portrait of Dr. Laneuville. Rita also
presented me with a pastel of "feverfew" I think this should be our "mascot"
flower!
-Dr. Laneuville was presented with a portrait of himself done by a local
artist. The gift was given with deep appreciation for all he does for us as
our Medical CML guru. He attends every one of our meetings and always stays
late answering our questions. We very much appreciate that he is "always
there" for us. He was very happy to receive the portrait.
Dr. Laneuville started off the learning part of the meeting by reviewing
CML, the components of blood, RBC's, Platelets and WBC's and the
Philadelphia Chromosome. BCR ABL is a protein tyrosine kinase and is found
on the shortened Philadelphia chromosome as a result of the translocation.
Gleevec (Imatinib Mesylate) works by fitting in the "pocket" on BCR ABL
effectively blocking the ability of ATP (an energy pack, like a battery) to
dock into the pocket.
Laboratory tests are important for monitoring the disease. Most of us are
familiar with the tests:
n CBC (Complete blood count)
n Biochemistry (liver, kidney, others)
n Bone marrow aspirate and biopsy
n Cytogenetics
n Fluorescent in-situ hybridization (FISH)
n Real-time Quantitative Polymerase Chain Reaction (RQ-PCR)
n Abl kinase domain mutation screening
FISH -
. Results blood = bone marrow
. Report % positive (Ph) cells
. Unreliable below 5%
RQ-PCR
n Real-time quantitative reverse transcriptase polymerase chain
reaction (RQ-PCR)
n Results reported relative to average newly diagnosed CML (log
reduction)
DNA Sequencing can help in the detection of ABL kinase domain (KD) testing
Definitions of clinical responses:
n CHR = complete hematological remission
l Normal CBC, normal exam
n MCR = major cytogenetic remission
l < 39% Ph+ve cells (cytogenetics, FISH)
n CCR = complete cytogenetic remission
l 0% Ph+ve cells (cytogenetics; FISH. RQ-PCR)
n MMR = major molecular remission
l BCR/ABL reduced 1000 fold = -3.0 logs (RQ-PCR)
n PCRU = undetectable by PCR
l Varies depending on sensitivity of the PCR assay
Quantitating Leukemic Cell Load
CML patients at diagnosis typically have a total body load of about 1012
cells. Patients in complete cytogenetic response (CCR) have no apparent
disease after a 2-log reduction of their disease burden, yet they may still
harbour up to 1010 cells. Q-PCR is the only technique that is sufficiently
sensitive to monitor disease response below a 2-log, down to about a 6-log,
reduction. Up to 106 cells may still remain at the limit of Q-PCR
sensitivity.
Estimated response to first line with Imatinib
(n= number of patients at 42 months with response)
CHR n=531 98% (96%, 100%)
MCyR n=487 91% (88%, 94%)
CCyR n=444 84% (81%, 88%)
More data was discussed on the IRIS trial, but we have already discussed
this here as it was published at ASH last year.
Dr. L continued on with a presentation/overview of the Canadian Guidelines
for the treatment of CML
Canadian Consensus Group for the Management of CML (CCGM-CML)
~ 80 Canadian Hematology Experts
Development of Treatment Guidelines
Standardization of RQ-PCR and Abl mutation Sequencing
He reviewed what the outcome of the consensus was and told us that the
guidelines will be published in a Canadian peer reviewed journal probably in
January. We will all get a copy of the guidelines when they are published.
He talked about data supporting dose escalation:
n Kantarjian H. (2003)
l Phase II, suboptimal response, DEIM to 600 mg (CP) & 800 mg (AP, BC)
l ~ 50% improved MCR rate, 65% improved CHR rate
n Cortez J. (2004)
l Phase II, two cohorts CML CP, 400 mg/d then later, 800 mg/d
l CCR 81% vs 96% (p=0.0002), MMR 47% vs 67% (p=0.0007)
n Hughes T. (2004)
l Phase II, Tidal Trial, CML CP DEIM 600 to 800 mg/d if fail milestones
l Compared to IRIS (IM 400 mg/d), CCR 69% vs 88.5% (p<0.001)
CML Trials in Canada - Dose Escalation of imatinib mesylate ?
n NCIC CTG (SWOG)
l Newly diagnosed CML CP
l Randomized 400 vs 800 mg/day IM
l Addition 3rd arm ? (BMS 354825)
n Novartis (Global)
l Newly diagnosed CML CP
l Randomized 400 vs 800 mg/day IM
n GLEEM (Novartis)
l CML CP, IM
l Randomized to 400 mg/d vs 800 mg/d IM
l MMR Control group
l Rate MMR primary end point at 12 months
BMS-354825 -Dasatinib
SRC kinase family inhibitor (includes Abl)
~ 200X more potent than imatinib mesylate
CML Trials in Canada - New PTKIs
n BMS 354825 (Dasatinib, BMS)
l First series phase II studies completed 07/2005
l New phase II studies, 034/035
l Relapsed, refractory, intolerant to IM
l CML CP, AP, BC
l SWITCH (BMS) - GLEEM study competitor?
n AMN107, CAMN107A201(Novartis)
l Phase IA/II, refractory/intolerant IM
l CML CP, AP, BC, Ph+ ALL, HES, SM
l
n Phase III Trials dasatinib and AMN107 scheduled first half 2006
Summary:
n Imatinib mesylate (IM) has changed the natural history of CML and is
indicated for first line treatment in doses up to 800 mg/day.
n Proper monitoring is essential for defining primary or secondary
failure of IM treatment, and for decisions regarding alternative
treatment.ASCT, dose escalation, new kinase inhibitors (dasatinib, AMN 107),
palliation.

? for the ladies (Alicia)

2007-05-27 11:59:13

Thanks Brenda,
Their web site says that any birth control pills are no-nos because of drug-drug
interactions. Hopefully I'll figure something out.
Thanks,
Alicia
View our family's newest photos at webshots
The time goes by so fast..

Re: ? for the ladies (Alicia)

2007-05-27 00:21:49

Alicia,
I had not heard a conflict between birth control pills or patches and
Gleevec but I bet you could contact Novartis directly and get it from
the horses mouth. Take care!
Brenda

Re: [cml 2] Happy Halloween, eat those seeds

2007-05-26 21:32:33

Nancy, I have two pumpkins ready for carving and cannot wait for those
seeds!! My daughter and I soak them in salt and dry them every year, make bread
out of the rest of the pumpkin, and we eat the seeds like candy, yum! Thanks for
all the nutritional facts about them, didn't know that. Happy Halloween to
you to! Lynne A.

Re: [cml 2] Zavie sorry not around much

2007-05-26 19:30:17

Hope you're feeling better soon!
:{
Alicia
View our family's newest photos at webshots
The time goes by so fast..

Zavie sorry not around much

2007-05-26 06:24:02

Just a quick note to tell you that
I am not around much for a while
platlets have gone down to 16,000
white down to 4.1 but hem ok at 129
bit tired so am not on computer much
thanks for caring
Skip

Happy Halloween, eat those seeds

2007-05-26 04:14:20

Pumpkin Seeds
Roast up some pumpkin seeds for a heart-healthy treat.
Pumpkin seeds are a good source of alpha-linolenic acid (ALA), a
healthy fat that reduces inflammation, improves blood vessel health,
and has beneficial effects on blood fats. For extra flavor, before
roasting toss the seeds with a tiny bit of olive oil and a few
spices, such as garlic, cayenne pepper, or lemon pepper.
Alpha-linolenic acid is a precursor of omega-3 fatty acids, and
linoleic acid is a precursor of omega-6 fatty acids. Modern diets
tend to be very high in omega-6 fatty acids but low in omega-3 fatty
acids. This imbalance may contribute to inflammation, blood vessel
dysfunction, increased blood clotting, and unfavorable blood lipid
profiles, all of which contribute to cardiovascular disease and
increased risk of life-threatening heart attacks and strokes.
Increase your intake of omega-3s by adding alpha-linolenic acid-rich
pumpkin seeds, flaxseed oil, walnuts, and canola oil to your diet
while cutting back on omega-6-rich corn oil.

photo?

2007-05-26 01:20:47

where can I see those photos of the group??

Re: Silly, But Maybe You'll Smile :-)

2007-05-25 18:02:16

That's a good looking boy you got there Renee! He looks healthy as a
horse too :) Thanks for sharing the pic.
Take Care,
Tracey

Re: Spam Subject Lines

2007-05-25 07:06:30

No Susan, I can't say that I've gotten anything like this. The only
spam I tend to get, has subject lines like "[re]7" or some other
bizzare line that is obviously spam. I don't even open them up.
Take care,
Tracey

Re: ? for the ladies

2007-05-25 01:14:32

Hi Alicia,
While I'm no authority on the IUD, I can tell you that for those of
us on Gleevec, who have achived CCR, we have a pretty normal immune
system. In other words, it's not compromised like it would be for
someone undergoing radiation or other more toxic chemotherapy
treatments. As long as your ANC is above 1, you shouldn't have
anything to worry about in terms of a compromised immune system.
Most of us will tell you that we get the same amount of colds and
infections that we got prior to CML. I have two kids and I've
surprised myself at how many colds they've gotten that I
haven't!......of course washing my hands 1000 times a day might have
something to do with that too :)
Take care,
Tracey

Silly, But Maybe You'll Smile :-)

2007-05-24 21:51:13

The new photo I have added to the group this morning is my son James
(19 yrs old, dxed 7/4/05). He won something-or-other last night at
Homecoming at Goergetown College, here in Kentucky, for his
performance as Jiminy Cricket.
Not only do I love the photo--he is, afer all, one of my three
"babies"!--but I love the point it makes that life is still a lot of fun.
Bless you all today!
Renee

Spam Subject Lines

2007-05-24 16:45:06

Hi All,

? for the ladies

2007-05-24 06:07:51

Hey girls,
TMI Alert!
I have a question for any ladies out there with CML. I am looking for a good
birth control option. Obviously being on gleevec I do not want to become
pregnant at this time but would like to leave my fertility in tact as I am
hopeful that modern science will find a way for me to have a baby in the next
5-10 years.
I have a loving husband and we are monogomous and have been with only one other
person each prior to being married. I do not like to use condoms, sponges or
diaphrams as I hate the level of interaction each requires. My oncologist said
that birth control pills and implants are a no-no with gleevec. I asked my PCP
and he said the IUD may be a good option but online I found that it is not
suggested for those with a compromised immune system as in the case of leukemia.
Does anyone have a good option that they use for birth control that doesn't
require inter-action each time you are intimate?
I look forward to hearing your input. I am making an appointment with a GYN to
discuss an IUD but figured you guys may have some more information.
Thank you,
Alicia
DX CML chronic phase 10/05
Gleevec 400 mg
WBC: 250K on 10/04/05, 6K on 10/27/05! Horray!
View our family's newest photos at webshots
The time goes by so fast..

ABCNEWS.com: Gene Discovery Could Broaden Cancer Research

2007-05-24 03:47:19

Very interesting.
Note the reference to Gleevec at the end.
Zavie
Gene Discovery Could Broaden Cancer Research
http://abcnews.go.com/Health/Healthology/story?id=1257138

RE: [cml 2] October 29th CML Meeting - Montreal

2007-05-24 01:12:01

Confirmed,
Zavie

OHSU professor receives major honor in Germany

2007-05-23 17:22:39

OHSU professor receives major honor in Germany
<http://www.bizjournals.com/search/bin/search?t=portland&am=portland&q=%22%2
2&f=byline&am=120_days&r=20
Brian J. Druker, co-director of the
<http://www.bizjournals.com/search/bin/search?q=%22Center%20for%20Hematologi
c%20Malignancies%22&t=portland
Cancer Institute at Oregon Health & Science University, is the recipient of
the Robert Koch Price for 2005, worth 100,000 euro (about $121,000 U.S.).
The Robert Koch Foundation in Berlin said Friday Druker earned the honor for
for his pioneering discoveries concerning the development and therapy of
chronic myelogenous leukemia, a type of blood cancer.
He received the prize in recognition of his research into the identification
and characterization of BCR-ABL oncogene substrates and the significance of
activated tyrosine kinases in signaling and cellular transformation.
In the course of his work, Druker discovered that the ABL protein tyrosine
kinase in the cell plays a decisive role in the development of chronic
myelogenous leukemia (CML), a malignant disease of the body's blood-forming
system. This discovery led to the development of the tyrosine kinase
inhibitor imatinib, which can inhibit the growth of the cells that cause
CML. Normal cells are not damaged during therapy with imatinib. These
findings were confirmed in clinical studies and led to a new, successful
treatment for this type of blood cancer.
Druker received the award Friday from Dr. Klaus Theo Schroder, Germany's
secretary of state, at the Federal Ministry for Health and Social Security,
at Langenbeck-Virchow House in Berlin.
The Robert Koch Prize, awarded annually, is one of the highest-ranking
scientific awards in Germany.

Talk by Drian Druker - An Oldie but a Goodie

2007-05-23 06:48:13

For all the newbies on this list. Us oldtimers have seen this before, and is
worth a reread.
Zavie
Dr. Brian Druker
[Molecules and Cancer Science: 30 Years of Discovery]
DR. BRIAN DRUKER: Thank you. It's a pleasure to be here to speak to you this
morning. What I want to take you through is a little bit of the past, a
little bit of the present, and what I see for the future.
Let me start with cancer. "Cancer" is a pretty frightening word. And perhaps
in our vocabulary, no words other than "terrorism" or "anthrax," strikes
such fear into our hearts. But for those who grapple with cancer, there's a
word even more frightening than any of those words, and that's
"chemotherapy." Although chemotherapy is remarkably successful -- it's cured
a number of diseases, such as childhood leukemia, Hodgkin's Disease,
testicular cancer -- when we think about chemotherapy, we think about the
devastating side effects. So when you walk into an oncology waiting room,
it's not uncommon to see patients who are thin, bald, or patients who are
sitting there with an emesis basin. Those are the images we have of
chemotherapy and what we do to our cancer patients.
I want to give you a glimpse of the future. And I want you to walk in my
waiting room, where we're treating CML [chronic myeloid leukemia] patients
with Gleevec. Patients like Judy. Judy came to me three years ago. She had
been diagnosed with chronic myeloid leukemia several years before, and had
been on treatment with interferon. Interferon had stopped working, and her
doctor had given her the dreaded speech. She told her, "'Judy, there's
nothing left we can do. You probably have no more than two years to live.
There's absolutely nothing we have to offer you."
She came to see me November of 1998. We were just beginning clinical trials
with, what in those days, was STI-171, and we talked about enrolling her.
She said, "'Well, before I do that, I want to take my family on a trip.
We're going to go to New Zealand and Australia, and it's the one last thing
that I want to be able to do with my family.'" We enrolled her in our
clinical trial in January of 1999 after she returned from her trip. Three
years later, she is here, doing well, and has no evidence of leukemia. She
and her husband just bought a new house. They're planning for their futures.
Sitting next to her, you might see Ladonna. Ladonna's a patient who came to
me with even more advanced disease. No one, including me, believed Ladonna
had more than days or weeks to live. Ladonna had a spleen --which normally
should be tucked up under the left side of your abdomen -- which was down to
her pelvis. It was pressing on her stomach such that she could barely eat
anything without throwing up. She was losing two or three pounds a week. She
had begun to plan her funeral and had even picked out the music that she
wanted played at her funeral.
We started her on Gleevec. Within a week, her spleen began to shrink. Within
a month, it was back to its normal size. Today, Ladonna's spending time with
her grandchildren, three of them here, including the youngest one, who is
named Will, because he was her will to live. Two years later, I still can
detect no evidence of leukemia.
This is what we've been able to accomplish with Gleevec. What I want to take
you through is how we got there by understanding what's broken in this
particular leukemia. I'm going to take you through the 40 years of cancer
research that got us to this point.
The driving force behind cancer research has been the simple mantra, if you
understand what's broken, you can fix it. Let me give you an analogy for
what we're talking about, and the analogy that I like to use is a
thermostat. Think about it: We're here sitting in this room, we're all quite
comfortable. The temperature of this room is very nicely regulated,
somewhere between 68 and 72. When the temperature falls below 68, the
thermostat turns on, provides a little bit of heat, gets to 72, then it
shuts down. Perfectly regulated. The body does exactly the same thing. Every
single day, we have to replace a certain number of cells through daily
losses. The body has a thermostat. When we need some cells, the thermostat
turns on. It replaces the exact numbers of cells we need. When it has the
right number of cells, it shuts off.
But imagine that the thermostat was broken and stayed on. The temperature
would start to climb. We'd get a bit warm and take our jackets off. The
temperature would continue to rise, and we'd get uncomfortably hot. That's
exactly what happens in a cancer. It's as though a thermostat gets stuck on.
The cells grow, they divide, they multiply, and form a tumor. That's what
cancer's all about.
So how are going to fix the problem? Well, we could replace the thermostat,
a pretty drastic measure. Our medical care system might not be able to cover
those kinds of costs. We could do something like chemotherapy. That would be
about like hitting the thermostat with a hammer, hoping it fixes it, but
probably leaving it pretty damaged.
But imagine now that you could take that thermostat apart, piece by piece,
and figure out which part is broken, and just replace that broken part.
Well, that's what we've done with Gleevec in chronic myeloid leukemia.
Before I get to that, let's think about this in a broader context. The year
2000 saw the completion of the Human Genome Project. That's like providing
us with a parts list. Now, the task for the future is going to be figuring
out how all those parts fit together, and which part is broken in which
cancer. So let me take you through how we did that with chronic myeloid
leukemia.
The story dates back to 1960. Two researchers, Peter Nowell and David
Hungerford , working in Philadelphia, were looking in the bone marrow's of
leukemia patients with this disease. They noticed a funny-looking
chromosome, a short chromosome. It ultimately became the Philadelphia
Chromosome, after the city in which they were working. Thirteen years later,
1973, Janet Raleigh, working at the University of Chicago, recognized that,
in fact, this shortened chromosome came about because of the exchange of
material between two chromosomes, Chromosomes 9 and 22.
In the 1980s, researchers recognized the consequences of that translocation.
This translocation has created what was called an oncogene. In the 1970s,
the field of oncogenes had been born. Drs. [Michael] Bishop and [Harold]
Varmus, Dr. [Robert] Weinberg, had identified that our cells contain genes
that, if they become mutated cause the uncontrolled growth of cancer
cells... If these genes are broken, it's like sticking the thermostat in the
"on" position.
Out of this field, it became clear that one of these genes had become broken
in this disease called chronic myeloid leukemia. As it turned out, it was a
member of a family of enzymes called tyrosine kinases. Tyrosine kinases are
known to regulate cell growth, and in this particular leukemia, it was as
though this switch had been stuck on, causing the uncontrolled growth of the
cancer cells.
About that same time, around 1990, animal models demonstrated that this
abnormal tyrosine kinase could cause leukemia in an animal model, and
absolutely conclusively established that this abnormality induced leukemia.
So as you think about this process, from 1970 to 1990, we had to develop
things like DNA sequencing, the field of oncogenes, the field of
understanding these chromosome translocations. All that had to develop. We
had to develop all these technologies for this to occur.
Then in the late 1980s, working in collaboration with scientists at
Novartis, a drug discovery program was initiated to begin to shut down these
abnormal tyrosine kinases, the enzymes that were causing the uncontrolled
growth of this leukemia. Out of this program came STI-571, or now Gleevec,
and we began testing this compound in 1998.
Within six months of starting our clinical trials, every single one of our
patients, taking now four pills once a day, had their blood counts return to
normal. One year later, those results, which we had originally obtained in
about 100 patients, were expanded to 1,000 patients. In May of the year
2001, Gleevec obtained FDA approval in record time. That announcement was
made by no other than Tommy Thompson, because of the excitement about
molecularly targeted approaches.
But people ask me, "Well, is this going to work in all cancers? Is Gleevec
going to work in all cancers?" In fact, Gleevec does work in one other
particular type of cancer, called a gastrointestinal stromal tumor. As it
turns out, this particular cancer is driven by a very similar abnormality.
This family of enzymes called tyrosine kinases comprise a family of about
150 different enzymes. When you think about a family, it's as if you went to
a family picnic and there are 150 people there, some of the family members
would look virtually identical; you could hardly tell them apart. Others,
you'd wonder, is that really a family member? Where did they come from?
As it turns out, these tyrosine kinase families are no different. Some of
them look almost identical, and Gleevec inhibits two or three of these
enzymes of this family, but no others. In this gastrointestinal stromal
tumor, one of these other family members causes this cancer and this family
member is also inhibited by Gleevec. And we've seen remarkable success in
this particular tumor. A cancer which had a response rate to chemotherapy of
less than five percent now has a 60 percent response rate. Patients with
massive abdominal tumors are having their tumors shrink, often within days
to weeks.
But the real issue is again; will Gleevec work in all cancers? We've got to
go back to our thermostat. If you think about it, in our thermostat there
could be hundreds of pieces that are broken. If you brought a thermostat to
me and I'd say, "Well, I can replace a part. I don't know if it's broken,
but I could replace the part," you'd say to me, "Well, why don't you figure
out what part's broken, first, before you go replacing anything?"
That's the issue we've got to get at with each and every cancer. In each and
every cancer, there's likely to be a different part that's broken. In each
and every cancer, we've got to figure out what part's broken before we can
fix it.
So as we look to this future, of cancer therapeutics, we've got to determine
what parts are broken. But I think it's also useful, if we think about the
future of cancer therapies, for us to look back and look at some other
analogies.
If you think about where we were in the year 1900, infections were the top
three leading cause of death in this country: pneumonia, tuberculosis, and
enteritis. Cancer showed up as number eight. [In] The year 2000, cancer is
number two, and it's projected that within several years, it's likely to
become number one leading cause of death.
So what happened in the 1900s to make a lot of infections become treatable
or eradicated? There were three major events in the 1900s. One event seems
pretty trivial, but it was actually improved sanitation and refrigeration.
The antibiotic era was born in 1900s. And the other thing that's happened is
vaccinations. Let's recast that slightly. If you think about improved
sanitation or refrigeration, [those are] preventative measures. I also
include early detection in that, as we think about trying to eradicate
cancer. Antibiotics are specific therapies, treatments like STI -571 or
Gleevec. Vaccination is harnessing the power of the immune system.
So when I think ahead to the 21st century, in trying to eradicate cancer and
make cancer a treatable disease, I think we take the same approach:
Preventive strategies, early detection, specific therapy, and harnessing the
power of the immune system. If we can combine those sorts of treatments, if
we can continue to provide the research dollars and the research along all
of those avenues, I think that in the 21st century, we should be able to do
what we did in the 20th century with infections.
As we look to this future, I want to share one last anecdote with you. This
is a patient who was the very first patient treated from Australia. Patients
traveled from around the world as the news of Gleevec was beginning to get
out, and this patient traveled from Australia. She had been on therapy now
for over a year and a half. Last year, she had to reschedule an appointment
because of an extremely important event in her life. As it turns out, she
was selected as one of the Olympic torchbearers that made its way through
Australia on its way to Sydney last year. She called, and she shared this
news with me, and said, "'Dr. Druker, there's no way I could have done this
on the interferon therapy that I was on for my leukemia. If it weren't for
Gleevec, I couldn't have done this.'"
To me, this just symbolizes where we are. It symbolizes to me what we can
accomplish when we understand what causes a particular cancer. But it also
symbolizes to me the great hope we have for the future. If we can do this
for one cancer, we can do it for all cancers.
Thank you very much.

Re: Talk by Drian Druker - An Oldie but a Goodie

2007-05-23 05:34:40

Hi Zavie,
Thank you for sharing Dr. Druker's talk with us. I have never seen
that one before.
I'm looking forward to meeting him with my appointment next month!
Sincerely,
Lynn

Re: new member looking to meet other leukemia folks

2007-05-22 23:11:25

Hi Jayne,
Sorry to hear of your diagnosis...it is not where any of us want to
be, but here we are anyway. I was diagnosed in May of 2005. I have
two girls (ages 1 and 4). I am sorry to hear you are dealing with
side effects of Gleevec. How many mg are you taking? I have been
fairly lucky in not having many. They come and go. This is a great
group of people and are always willing to answer your questions?
Jennifer

Re: [cml 2] possible myelodysplasia

2007-05-22 21:05:46

Hi Chris
I saw your message and thought I'd tell you what happened to me so you can
keep an eye on your situation. I achieved CCR on Glivec but with the help
of Neupogen but still Glivec suppressed my marrow extensively, low Hb and
low platelets all the way but still in CCR for three years. Then in March
of last year they discovered blasts in mymarrow indicative of possible MDS.
No one really knew at the time what was happening, my PCR was CML was still
very very low. I was followed very closely at the Hammersmith in London and
the blasts kept appearing in my 12 weekly bmbs, sometimes a bit up sometimes
a bit down. In January of this year, the MDS went crazy and turned into AML
and I was admitted for urgent chemo etc..... my diary is on the UK site
www.cmlsupport.org.uk - I don't want to alarm you but I just want you to be
careful, I delayed my treatment for this MDS because my daughter was
pregnant at the time and because also I felt really well - big mistake.
Anyway the long and short of it is that I had one round of Flag Ida chemo
followed by a mini allo SCT [mother donor - very rare].
Would be interesting to know what they actually found in your marrow to
think you may have MDS ....
I hope all this turns out not to be MDS and just glivec related. I was told
my case was very very rare and in fact unique at that time.
With best wishes
Elizabeth in London

Re: possible myelodysplasia

2007-05-22 05:14:53

Hi Chris,
You don't say why they think you have MDS but I'll assume it's
because your counts are extremly low? MDS is a syndrome that can
often look the same as the myelosuppression that Gleevec causes.
MDS causes the bone marrow to stop producing various cell lines
(usually all three....reds, whites and platelets) but sometimes it
can be just the red cells or a combination of reds and either whites
or platelets. Hopefully it'll turn out to be a Gleevec side effect
instead of MDS.
How low are your counts? I think in MDS, the red cells aren't only
very low but they also look quite abnormal.
Let us know what they find in the biopsy,
Tracey

Re: new member looking to meet other leukemia folks (Jayne)

2007-05-21 23:32:47

Jayne,
I'm sorry to hear of your dx and your struggles with side effects from
G. If you feel comfortable sharing some of your challenges we may have
some rememdies to improve those side effects. I know I've had great
benefit receiving helpful hints from veteren CML'rs and maybe it will
do the same for you. It is a struggle and it definately helps to have
this special CML family, they provide me with special strength I might
not otherwise have without them. For me after the first year things
improved greatly and continue to get better with time. I hope you will
find this to be true for you. Hang in there and let us know what we
can do. Take Care.
Brenda Morelli (44)
dx'd 5/04
Gleevec 6/04
PCRU 5/05

Re: [cml 2] new member looking to meet other leukemia folks

2007-05-21 18:08:24

Jayne, when I was first diagnosed I, too, was a single mom with two
daughters, and found it an enormous struggle. Back then, most of us did not
have
Gleevec yet, and had to be treated with Interferon, injecting ourselves with
shots that made us so sick, feverish. When Gleevec came I was able to do more,
and be with my girls more. I don't know what kinds of side effects you are
having? I was on Gleevec for 3 years before the side effects became disabling,
but I still get around enough to go see my daughter's soccer games, cook
meals, and go shopping with them.
I hope you can find solace in the fact that there are many of us out here
who can help get you through difficult times, answer questions and be there for
you. Sorry you have to be here, but it is comforting to have others to talk
to. CML is scary and I can only imagine what you are feeling....Lynne Andrews

possible myelodysplasia

2007-05-21 16:51:46

Hi everyone. does anyone know anything about myelodysplasia? I had a bone
marrow done yesterday, because they think I may have it. I've been in remission
since june of 04, but now it looks like something else is showing up. my fish
tests still look fine, though.
I'm scared.
any ideas/info welcome
chris in minn

new member looking to meet other leukemia folks

2007-05-21 07:45:23

Hi my name is Jayne. I was diagnosed with CML in Feb. 2005. I am
currently on Gleevec and struggling with the side effects. I am not in
remission as of yet. I am a single mom with a 5 year old daughter. I am
hoping to meet other people who are fighting the same battle, for
support, friendship and hope. Jayne

Test - Please Ignore

2007-05-21 05:32:17

Thu Oct 27, 2005 6:26 am

October 29th CML Meeting - Montreal

2007-05-21 03:15:17

Hello All,
If you haven't confirmed to me your attendance, please do so before Friday
October 28th
You are cordially invited to attend a special educational event on CML
treatment
The Canadian approach to the treatment of CML
Dr Pierre Laneuville, M.D. , M.U.H.C, Montréal, QC
Future Directions in the Treatment of CML
Dr Farhad Ravandi, M.D., M.D. Anderson Cancer Center, Texas, USA
Saturday, October 29th, 2005
Royal Victoria Hospital
687, Ave Des Pins Ouest
J.S. L. Browne Amphitheatre
Program:
12h00 - 13h00: A lunch will be served
13h00 13h05: Opening remarks, Cheryl-Anne Simoneau
13h05 13h50: Dr Pierre Laneuville
13h50 14h35 : Dr Farhad Ravandi
14h35-15h00: Q & A - Closing
RSVP Cheryl-Anne Simoneau at Cheryl.simoneau@...
This program is supported by an educational grant from
Novartis Pharmaceutical Canada Inc.

Re: [cml 2] urinalysis/Nancy

2007-05-20 16:07:14

Hi Tracey,
Dr. Druker added the standard urinalysis just once a year to monitor.....I
asked RN Carolyn what they would be looking for and she said just blood
cells in the urine.
I have a funny little 'urine' story.........after I first started Gleevec
and had an episode of pericardytis and/or pleural effusion, I was
hospitalized and my local oncologist was very thorough with testing
everything..........he was not finding much and said: "you even have
pristine urine!".....never had it described that way before!
Actually they only saw the bladder problems (?tumors) in mice....have not
seen any problems to date in people as far as I know.
Nancy C.

urinalysis/Nancy

2007-05-20 07:07:57

Hi Nancy (and everyone else),
I think it was you who mentioned that Dr. Druker is doing periodic
urinalysis now due to the increased risk of bladder cancer for us long
term Gleevec patients. Do you know if he's just doing the regular
urinalysis or if he does a urine cytology examine, or both? Also, how
often is he checking?
Thanks,
Tracey

Re:cholesterol/Lisa &amp; Teresa

2007-05-20 04:06:42

Yes, Gleevec has lowered many patients' cholesterol levels including
mine. There's an article about it here:
http://www.ohsu.edu/news/2003/041003druker.html
Mine actually went from dangerously high to below normal after a
year on Gleevec!
Tracey
dx Jan 2002

Re: FW: Fatigue

2007-05-19 23:45:38

Hi, i think i replyed to you once before mentioning that i suffer real
bad from the side effects of Gleevec. My friend who lost her husband
Oct 04 to AML. Has been searching the net and she also came up
with 'fibromyalgia syndrome'. im intereseted in finding out much more
if anyone has heard about it or anyone else suffering from it. Im
pretty desperate as they are trying to get me on the new trial drug in
australia.
HELP
Susieleech
dxd nov 02

FW: Fatigue

2007-05-19 12:24:49

Hi to everyone.I had a blood test and came back normal with the esception of
high cholestrol. I went through other tests such as sleep disorder test which
show that I have a mild apnea disorder may have cause this fatigue. Now I have
pain in my muscles which I don't think is Gleevec related. After reading about
all my symptoms, I think I may be heading for fibromyalgia syndrome. My fatigue
have stopped all my physical activity no matter what. I will discuss this with
my doctor this week to see if more test is required to explain my fatigue and
muscle pain before we blamed it on Gleevec. Does any one know about fibromylagia
syndrome that may fellow CML?
Teresa T
dxd 1/03
CCR 7/03

Re: Dane/DLI

2007-05-19 11:55:24

Dane,
Thanks for posting and letting us know how your doing. We're still
sending special thoughts and prayers your way. Keep on keeping on
good friend.
Take care,
Brenda

Re: [cml 2] Dane/DLI

2007-05-18 22:37:24

Good luck Dane. I hope you are able to get things back on track.
:{
Alicia
View our family's newest photos at webshots
The time goes by so fast..

Dane/DLI

2007-05-18 19:01:31

Hello all....
My October PCR showed a BCR-ABL of 7.7 (a considerable jump from previous
month), but still 100% donor cells.
I will be going back to Houston in the next week or so to have a DLI.
Regards and prayers
Dane

Re: flu shots

2007-05-18 12:14:39

Strongly in favor of taking. I have not missed since 1992 and have
done well. dxd CML in 2003 and doctors I see recommend it highly.
Red Cross nurse that gave me my flu shot the last two years has me
me on her must take list because of heart and CML and my wife &
daughter work in day care with babies less that six months old.
Today at the VA Cancer clinic where I get my meds was giving flu
shots to any patient that had not had theirs (Darn missed a free
one).
Richard H.
dxd 2/03
400mg Gleevec 3/03
PCRU 6/03
QPCR .001 9/05

Re: [cml 2] Rebecca--Flu Shots

2007-05-18 07:44:18

ha ha ha! I think you're right, Bob. It wasn't my doc, though. It was a local
"helping" organization that views us as unbroken eggs rolling around in the
paths of tractors. Sloppy with sympathy, short on solid information.

Rebecca--Flu Shots

2007-05-18 02:19:59

I know you said you've decided to get a flu shot but
thought I'd throw my two cents in. I've been
diagnosed with CML for 8 winters and have always
gotten a flu shot--a couple of times at my
oncologist's office.
Also, if a flu shot isn't to be given to people with a
compromised immune system, why is the top priority
group those people 65 or over?
I think your doc is shooting from the hip!
Bob Stewart, Granger, Indiana

Re: diet and joint pains and the versatile pumpkin/ Nancy

2007-05-17 19:53:05

Hello Nancy,
Thanks for this information. I love pumpkin and around this time of
year I am really happy that it is so abundant. I make my own Pumpkin
puree for Pumpkin pie. For a special treat that dresses up your
dinner plate, try buying the small pumpkins and making "Jack-be-
little" pumpkins. These are really easy to make. You just cut out
the top, scoop out the seeds (which are very tasty toasted) and get
creative filling them with all sorts of stuffing's. When my daughter
was small (she is 23 now) I would just put a small bit of butter and
a dash of brown sugar in the pumpkin (it was a good way to get her to
eat the pumpkin). Fit the pumpkin top loosely on top and bake them
at 350 F for about 40 minutes or so. You can also fill them with a
sweet potato & cranberry hash and bake as above.
I have also made pumpkin stuffed ravioli's and of course pumpkin soup.
Did you know that pumpkins store for up to 6 months if kept in a cool
dry place.
Gosh I am getting hungry!
Cheers,
Cheryl-Anne

Re: [cml 2] flu shots

2007-05-17 13:56:36

I did get one and was encouraged by my dr. to do so. Did they give you a reason
why they strongly discourage it? JEnnifer B
Rebecca Rosen-Lum <rrosenlum@...
and flu shots? I have been strongly
discouraged from getting one and strongly advised to get one from various
health care providers.
Thanks.

flu shots

2007-05-17 10:37:31

How does everyone feel about CML and flu shots? I have been strongly
discouraged from getting one and strongly advised to get one from various
health care providers.
Thanks.

Re: [cml 2] Good News At Check-Up

2007-05-17 02:03:09

Renee, that is wonderful news! Congratulations to
James and to you!
Dana

Re: Good News At Check-Up

2007-05-16 22:56:25

Dear Renee -- thanks for sharing your good news with us.
Congratulations to James! hugs & hope, Kathy (dx 5/03)

Good News At Check-Up

2007-05-16 13:36:39

My 19-year-old son James (dx July 4, 2005) saw the oncologist
yesterday, and all the news is
very good!
First off, he put on two pounds, for which I am
thankful.
Then, his blood test was all good; his anemia is all
but gone, and I can tell by looking at him. His color
is better, and he has more energy. His white blood
cell count (WBC) is still in the normal range.
What *really* made my day is the results of the
F.I.S.H. which was done on
his blood four weeks ago yesterday. When he had that done
in the hospital, back in July, it showed 97% positive; the F.I.S.H.
from four weeks ago shows FEWER
THAN SIX PERCENT!!! I am very happy, and so is James.
We are very thankful to have such a wonderful doctor,
and Gleevec!
Renee

diet and joint pains

2007-05-16 07:08:13

Some dietary health information that *may* benefit those with Gleevec
related joint and muscle pains......I always figure that at least
what we eat is under our control.
Nancy C.

CML Get together in Montreal - October 29th

2007-05-16 02:07:36

Hello All,
I am very excited to say that we have had a very good response from people
planning to attend the meeting.
A CMLer from Vienna, Virginia contacted me to say she would very much like
to join us but is wondering if there would be anyone else from her area that
would be interested in car pooling for the trip.
Please contact me directly and I will be happy to make the connection.
Stay tuned for more news,
Cheers,
Cheryl-Anne

Re: [cml 2] CML /patient meeting Montreal - Adrienne

2007-05-16 01:34:23

Hi Adrienne,
There will be a summary posted to this groups and others so as not to
miss anyone in sharing the information. You'll also be happy to know
that work is progressing on a series of meetings in the new year to
provide updates from ASH. Don't have all the details yet, but I will
keep everyone informed.
Cheers,
Cheryl-Anne

Man Behind the Cure, Cookies &amp; Fatigue

2007-05-15 11:59:14

Thanks, Zavie, for posting the article. Lord knows I thank God often
for Dr. Druker & his dedication -- and it's nice to read about what a
great guy he is, too.
Nancy C -- you are very thoughtful to bring Dr. Druker et al cookies --
and indeed lucky to have him as your doctor.
Re fatigue -- to combat my fatigue I try to stay away from cookies &
other sugary sweets (not always easy as I have a sweet tooth the size
of Texas), make sure I get enough protein each day, and I do exercise.
If I'm really feeling pooped after a full day at work, I snooze for
about 10 minutes when I get home and this helps, too.
Best to all,
Kathy
dx 5/03

Re: [cml 2] The man behind the cure

2007-05-15 08:04:00

Thanks for passing this along Zavie.
It is a nice article....once you get past the photo that refers to him as
Dr. "Brain" Druker and calls the drug Gleevac.....but we are glad he is a
'brain!'
It does show him in his somewhat cluttered (but tidy) little lab space. A
lot of building is going on now at OHSU...I am glad he will get a large new
area for cancer research. I was told he has about 18-20 post-doctoral and
MD researchers in the Druker Lab. Most visits I take a large container of
home-made cookies for his lab....I call it 'cookies for a cure!' I like to
cook but don't want them around the house...and he says they disappear in a
day.
Take care everyone,
Nancy C.

Re: Fatigue

2007-05-15 03:34:27

Dear Teresa:
Sorry to hear about your tiredness. How long has it been since you have had a
CBC? Could it be that your hemoglobin has tanked? Just a thought.
When mine drops below 10 I feel it and when it drops below 9 I can't make it
through a full day. But this is a chronic problem with me so I take 60,000
units of ProCrit weekly to keep the hemoglobin up and now I feel great. Last
year they tried to rotate me off of ProCrit and on to Arnesp. Although I only
had to have an injection every other week, it didn't work as well as the
ProCrit. Once I returned to ProCrit my counts rebounded and have been fine
since. But I'm lucky because my health care covers all but a modest co-pay.
Hope you find a remedy that works for you.
Kathie in Kentucky

Fatigue

2007-05-14 22:53:42

I have been feeling tired, fatigue and I am low in energy. I tried energy
drinks, did not work.I hardly do any activity or excersising.I am only trying to
keep my full time job, so I rest weekends and all afternoon and I am still
tired. I have been on Gleevec for more than 2 1/2 years. This mean side effect
should be the minimum. I wonder if any one experience the same or may be my CML
cells are coming back. I am not PCRU yet but my last QPCR show a slight increase
. I will see my doctor in November. I appoligize for sharing my problem with you
all hoping to find answers.
Teresa T
dxd 1/2003
CCR 7/03
#764 Zero club
400 mg Gleevec

Re: [cml 2] CML get together/patient meeting Montreal - October 29,2005

2007-05-14 11:51:46

Dear Cheryl-Anne,
I will not be able to attend but I hope that you will send the group one of your
excellent summaries of the proceedings. Sounds like you're one of the main
organizers, so you may not have time for summaries. But if you do, I'm sure I
speak for many in the group that anything you put together would be most
appreciated.
Adrienne
Cheryl-Anne Simoneau <cheryl.simoneau@...
Dear Friends and fellow CMLer,
Exciting news - we are finally able to confirm that we will have a very
special meeting on October 29th at the Royal Victoria Hospital - J.S.L.
Browne Amphitheatre, on October 29th, 2005. It will start at approximately
1:00 PM with a lunch and other refreshments being served followed by a
presentation by Dr. Pierre Laneuville, Hematology RVH and Dr. Ravandi,
Hematology MD Anderson, Houston Texas. Dr. Laneuville will provide an
update on the latest treatments for CML including information about the new
BMS drug, Dasatinib as well as what trial are continuing and upcoming at the
Vic. Dr. Ravandi will provide an update on AMN107 and other treatments in
the pipeline for CML. Dr. Ravandi is a partner of Dr. Francis Giles, who
could not join us in Montreal due to a conflict in his scheduling. However,
Dr. Ravandi will have all the information to present to us.
We will also be presenting Dr. Laneuville with a very special gift, a
portrait of himself, done by a local artist (Thanks to Rita Levig for
working on this for us). We will be presenting this to him to thank him for
his complete dedication to us in chairing our meetings and giving up many of
his Saturday's to continue to provide us with information and guidance.
If you would like to be part of the gift, we will be accepting donations.
Please consider car-pooling (for those from out of town) and seeing whatever
you can do to join us here in Montreal for a very exciting meeting.
More details will follow. Please write back to me and let me know if you
are planning to attend so that we have food/refreshments for everyone.
Please note, that other than a contribution towards the gift (which is
completely optional), the meeting is entirely free. Because I am a member
of the board of the Auxiliary, the room has been donated for free and we
would like to acknowledge and thank Novartis for sponsoring the cost of the
food/refreshments.
Free parking will be provided in the Doctors Parking lot (special VIP
privileges for all) which is conveniently located just outside the J.S.L.
Browne Amphitheatre were the meeting will be held.
More details will follow. Please confirm your attendance so that we have
food/refreshments for everyone.
If you have any questions, please do not hesitate to contact me.
Looking forward to seeing us all together again,
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
This e-mail and any attachments may contain confidential information. If you
are not the intended recipient, please notify the sender immediately by
return e-mail, delete this e-mail and destroy any copies. Any dissemination
or use of this information by a person other than the intended recipient is
unauthorized and may be illegal.Med Summit Inc. reserves the right to
monitor all e-mail communications through its networks for quality control
purposes. Ce message électronique et les fichiers qui y sont joints peuvent
contenir des renseignements confidentiels. Si vous n'êtes pas le
destinataire visé, veuillez en aviser immédiatement l'expéditeur en
répondant à ce message; effacez ensuite le message et détruisez toute copie.
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destinataire visé n'est pas autorisé et peut constituer un acte illégal. Med
Summit/Sommets Médical Inc. se réserve le droit de surveiller toutes les
communications transmises par courrier électronique par l'intermédiaire de
ses réseaux à des fins de contrôle de la qualité.

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The man behind the cure

2007-05-14 09:27:26

http://www.portlandtribune.com/archview.cgi?id=31991
Thanks to Marina for this link.
Zavie

Chat Reminder - Tuesday 9:00PM EST

2007-05-14 06:35:04

Chat Reminder - Tuesday 9:00PM EST

Re: [cml 2] RE:Newbie - Introduction Alicia

2007-05-14 01:07:09

Thank you Lisa! I appreciate your positive experience!
:}
Alicia
View our family's newest photos at webshots
The time goes by so fast..

RE:Newbie - Introduction Alicia

2007-05-13 19:12:23

Hi Alicia and welcome to the group. Sorry about your diagnosis but as you
may have gathered in this short time almost all of us on this support group
Also have CML or are caregivers for persons with CML.
This group is a wonderful group. Know that any questions you have regardless
of how irrelevant you may think they are there's almost always someone that
will answer you and or direct you to the best possible resource.
I cannot personally answer you question about pregnancy but I have seen this
topic arise on way more than one occasion. But I can offer a little about
myself when you ask the survival question.
I was 35 years old at diagnosis, mother of 4.
My first form of therapy was Hydrea with daily Interferon and ARC injections
for one year. (Horrible side affects to say the least) and although my CML
had not progressed with these drugs, it had not put me into remission
either.
After one year on that treatment, I started Gleevec 400 mgs. After only 60
days on Gleevec, My biopsy results showed no evidence of CML.
I have been on Gleevec for 4 and half years and I am a 5 and half year
survivor. I for the most part am very fortunate as I do not suffer from any
major side affects.
There are so many new treatments on the horizon that I live with CML as a
chronic disease and I hope that you will too!
Lisa Martinez
Tampa Florida
Dx 5-2000
Interferon/arc/hydrea
6-2001 Gleevec 400 mgs
8-2001 PCRU
essage: 1
Date: Sun, 16 Oct 2005 05:31:12 -0000
From: "Alicia Jaromin" <lunaemica@...
Subject: Newbie - Introduction Alicia
Hey all,
I am only reading posts on the group site right now. I am pretty
busy trying to keep awake and educated and keeping up with real life
but I wanted to post since I just joined.
I am a 29 year old woman. I was diagnosed 1 1/2 weeks ago with
CML. My WBC was 250,000 at diagnosis and 183,000 one week later.
My spleen was 18 inches below my lungs at diagnosis and 12 inches
one week later. I had 2 blasts at diagnosis and none one week
later. I am on Hydroxyurea 500 mg 2 caps 2xdaily, gleevec 400 mg 1
cap 1xdaily and Allopurinol, 300 mb 1 cap 1xdaily. I have one son,
20 months old and a loving husband.
My concerns right now are survival, of course first and foremost but
also, we do not feel that our family is complete and had planned to
have 3 children. I know that right now I should not get pregnant
but I was wondering what you know regarding possible future
fertility of patients with CML. I know right now my first concern
should be my health and it is but I need to know and prepare myself
if I will not be able to have more children.
Thank you,
Alicia

CML get together/patient meeting Montreal - October 29,2005

2007-05-13 12:30:37

Dear Friends and fellow CMLer,
Exciting news - we are finally able to confirm that we will have a very
special meeting on October 29th at the Royal Victoria Hospital - J.S.L.
Browne Amphitheatre, on October 29th, 2005. It will start at approximately
1:00 PM with a lunch and other refreshments being served followed by a
presentation by Dr. Pierre Laneuville, Hematology RVH and Dr. Ravandi,
Hematology MD Anderson, Houston Texas. Dr. Laneuville will provide an
update on the latest treatments for CML including information about the new
BMS drug, Dasatinib as well as what trial are continuing and upcoming at the
Vic. Dr. Ravandi will provide an update on AMN107 and other treatments in
the pipeline for CML. Dr. Ravandi is a partner of Dr. Francis Giles, who
could not join us in Montreal due to a conflict in his scheduling. However,
Dr. Ravandi will have all the information to present to us.
We will also be presenting Dr. Laneuville with a very special gift, a
portrait of himself, done by a local artist (Thanks to Rita Levig for
working on this for us). We will be presenting this to him to thank him for
his complete dedication to us in chairing our meetings and giving up many of
his Saturday's to continue to provide us with information and guidance.
If you would like to be part of the gift, we will be accepting donations.
Please consider car-pooling (for those from out of town) and seeing whatever
you can do to join us here in Montreal for a very exciting meeting.
More details will follow. Please write back to me and let me know if you
are planning to attend so that we have food/refreshments for everyone.
Please note, that other than a contribution towards the gift (which is
completely optional), the meeting is entirely free. Because I am a member
of the board of the Auxiliary, the room has been donated for free and we
would like to acknowledge and thank Novartis for sponsoring the cost of the
food/refreshments.
Free parking will be provided in the Doctors Parking lot (special VIP
privileges for all) which is conveniently located just outside the J.S.L.
Browne Amphitheatre were the meeting will be held.
More details will follow. Please confirm your attendance so that we have
food/refreshments for everyone.
If you have any questions, please do not hesitate to contact me.
Looking forward to seeing us all together again,
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
This e-mail and any attachments may contain confidential information. If you
are not the intended recipient, please notify the sender immediately by
return e-mail, delete this e-mail and destroy any copies. Any dissemination
or use of this information by a person other than the intended recipient is
unauthorized and may be illegal.Med Summit Inc. reserves the right to
monitor all e-mail communications through its networks for quality control
purposes. Ce message électronique et les fichiers qui y sont joints peuvent
contenir des renseignements confidentiels. Si vous n'êtes pas le
destinataire visé, veuillez en aviser immédiatement l'expéditeur en
répondant à ce message; effacez ensuite le message et détruisez toute copie.
La diffusion ou l'usage de ces renseignements par une personne autre que le
destinataire visé n'est pas autorisé et peut constituer un acte illégal. Med
Summit/Sommets Médical Inc. se réserve le droit de surveiller toutes les
communications transmises par courrier électronique par l'intermédiaire de
ses réseaux à des fins de contrôle de la qualité.

Re: Our Light The Night Walk Was Last Week!

2007-05-13 01:37:41

Hey Renee,
I hope that James continues doing well!
:}
Alicia

Our Light The Night Walk Was Last Week!

2007-05-12 21:19:23

http://www.winchestersun.com/articles/2005/10/11/local_news/news04.txt
It was very exciting for us!
My son James was dxed July 4, 2005, the day after his nineteenth
birthday. He is doing very well.
I have to say here, that reading the very encouraging posts in this ng
have helped me so much. I do a lot of reading, and the people who
stay upbeat and avoid the "slippery slope" as the previous poster put
it, are such a blessing to me.
Hang in there, all; there is a reason for everything that comes into
our lives.
God bless each of you,
Renee
http://www.active.com/donations/fundraise_public.cfm?key=BUSHBRIGADE
http://www.winchestersun.com/articles/2005/09/12/local_news/features/feature9923\
.txt

Re: [cml 2] Newbie - Introduction Alicia

2007-05-12 14:59:10

Hi Alicia,
Welcome to the list.....sorry of course that you gained membership.
It is not recommended that you get pregnant on Gleevec.....and Gleevec
is not a cure, but a drug you stay on long term. Gleevec has not affected
your fertility....but could cause harm to a developing baby. (The same is
not true for men taking Gleevec, it is OK for them to father a child).
I know there are some young women out there who have taken this approach.
First, see how you do on Gleevec (also called IM, which is easier)....if
you get
to a good level of remission....like molecular.....then go off the drug to
have a
baby. Maybe some of these women will respond on this list....if not there are
some other lists that I know they post on (try CML Discussion at
www.newcmldrug.com).
The other way of treating CML is with a bone marrow transplant....but that
does
take your fertility away with the high dose chemotherapy. It will be most
important,
as you say, to first treat your CML and see how you respond......then look
into
your pregnancy options.
You will find that folks on this and the other list I mentioned will share
their
information and experience with you.
Best wishes to you,
Nancy C.

Re: Newbie - Introduction Alicia

2007-05-12 13:13:36

Hi Alicia,
Welcome to the group. I want to first tell you that CML is no
longer the death sentence that it once was. Thanks to Gleevec and
other new drugs, life expectancy has greatly improved. We even have
one member here who's had it for 27 years!
You have responded fantastically already in just one week so this is
very promising. I hope you are getting blood tests every week at
this point because at the rate your counts are dropping, I suspect
that you'll have to stop the Hydrea very soon or your counts may
crash too low.
I understand all the emotions that go along with this diagnosis
especially at a young age. I was diagnosed almost 4 years ago at
the age of 31. Thankfully, I had already had 2 children when I was
diagnosed but the thought of not being alive to raise them was (and
still is) very heartbreaking. It's the unknown that plays on the
mind and once we start with the "what if's...", well, it's a very
slippery slope.
As Nancy said, there have been a handfull of women who have gone off
of Gleevec in order to have a baby and have had sucessful
pregnancies so this may be an option for you down the road. With
every year that passes, more and more information is learned which
will be to your benefit.
Since you're new, you may benefit from reading our CML FAQ's in the
file section of this website (on the left side you'll find "files"
in the list of clickable words). There is also a file called "CML
Glossary" which will explain some of the abreviations that we use
regularly.
Don't hesitate to ask any questions you may have. Someone will
likely have an answer for you. In the mean time, take care and
enjoy every day.
Tracey

Newbie - Introduction Alicia

2007-05-11 23:01:54

Hey all,
I am only reading posts on the group site right now. I am pretty
busy trying to keep awake and educated and keeping up with real life
but I wanted to post since I just joined.
I am a 29 year old woman. I was diagnosed 1 1/2 weeks ago with
CML. My WBC was 250,000 at diagnosis and 183,000 one week later.
My spleen was 18 inches below my lungs at diagnosis and 12 inches
one week later. I had 2 blasts at diagnosis and none one week
later. I am on Hydroxyurea 500 mg 2 caps 2xdaily, gleevec 400 mg 1
cap 1xdaily and Allopurinol, 300 mb 1 cap 1xdaily. I have one son,
20 months old and a loving husband.
My concerns right now are survival, of course first and foremost but
also, we do not