CML

MY P.V.C was .4 and my stomach still on the bigger
side and i am on sprycel .it reduced my count and
make me vomit and anemic .

Has anyone heard from Amy. How she is doing?

Hi Everyone,
Chris's recent experience has caused me to go back and check a few
drugs to see how they metabolize and I have found some interesting
things.
For anyone who wants to read the technical information regarding
Gleevec, you can find a good synopsis here:
http://www.drugs.com/pro/gleevec.html
Where it lists the drugs that may have their plasma levels altered by
Gleevec you'll see that Acetaminophen (Tylenol) is specifically
listed. We've known for years that we weren't supposed to take
Tylenol because it can "compete with Gleevec for metabolization" but
this was the first time I read that when taken together, the plasma
level for Tylenol can actually increase. So in other words, a 500mg
pill of Tylenol, could potentially be double or triple that in your
system. Having higher levels of Acetaminophen in your blood will
obviously make the risk of toxicity greater which is something we
want to avoid if at all possible.
Another interesting site I found:
http://www.medscape.com/viewarticle/444804_5
Describes the CYP3A4 isoenzyme (the one that Gleevec uses for
metabolization). It says that about 50% of drugs use this isoenzyme
including exogenous corticosteroids. I often use Hydrocortisone for
eczema but I never thought that it could interact with Gleevec. I'm
not sure how much cream would need to be used in order to cause a
significant interaction, but it's something to think about I guess.
Also of note, I found that plasma levels of Diphenhydramine
Hydrochloride (AKA Benadryl), can be increased when taken with
Gleevec because the Benadryl uses the P450 2D6 isoenzyme to
metabolize which Gleevec can inhibit.
http://www.nhtsa.dot.gov/PEOPLE/injury/research/job185drugs/diphenhydr
amine.htm
The theraputic range for Benadryl is fairly wide so I'm not sure how
significant this finding is but it's made me realize that when it
comes to taking a dose of Benadryl, size can matter and smaller is
better :)
I guess the moral of my story is that it's very important to check
out each drug we take to know exactly how or if it will interact with
Gleevec.
Tracey

Barbara, Doctors like any other human should not be resistant to change or
added support form either another Dr. or their patient. If you find that she
doesn't show any interest in your input or Dr. Druker's, then I would
suggest you find another one. Although it can be tough, do not let your Dr.
intimidate you. It's your life.
Dr. Druker is wonderful isn't he? I remember a while after I was dx'd in
2000 I was looking on the net everywhere for support.
I found a support group that we old timers use to belong to and there I
learned of Gleevec still in trial phase (STI571 was its code name). I found
Dr. Druker's e-mail address and proceeded to e-mail him afraid of just
taking advice from people who weren't doctors on this list.
I explained my circumstances to him and the fact that I felt as if I were
being pressured into a BMT and he responded so quickly. I was amazed! He was
in Europe at the time and it was very early in the morning when I received
his response ( 2 am) but It was then that I knew this man cared enough about
us to respond to one little individual like me when so many people all over
the world have cancer.
It was also then that I realized I needed to be part of the online group
because the others had so much to offer that I could not afford to rely on
just my doctor. Who better to learn from then someone with the first hand
experience like our fellow CML'rs
Lisa Martinez

Chris, I'm so glad that you found the culprit and now know what to
avoid to ensure that your Gleevec is being metabolized ideally.
I'm a little disturbed though because according to www.drugs.com
(which I use all the time to look for interactions with Gleevec),
there is no mention of any interaction between Gleevec and Topamax.
Clearly there is an interaction (as Tim was so kind to point out) so
I'm now left wondering just how accurate www.drugs.com is and why it
didn't pick up this interaction.
Tracey

****************************************************************************
****************
Dear Barbara,
The problem with PCR testing is that it is not well standardized. I would
generally follow cytogenetics for prognosis and if you were Philadelphia
chromosome negative by cytogenetics, then I would be very pleased with your
response. I would then follow PCR to make sure that you maintained your
response, but would not worry if the PCR test remained positive. My
interpretation of your PCR is that you likely are Philadelphia chromosome
negative and accordingly, I would not change your dose. This also means that
your risk of relapse is quite low.YIPEE)
I have been working to make a kit for PCR testing that will be standardized
and allow much better interpretation of test results. This should be
complete by the end of this year.
Best wishes for continued good health.
Brian Druker, MD
****************************************************************************
******************
I sent my PCR test to Dr. Druker in hopes of his replying with his
recommended protocol. Imagine my surprise when I got a response back so
quickly. Above is his response and I have highlighted the issue about a
standardized test I think all would be eager to see. However, I do have a
question as the what test is used to .."follow cytogenetics for
prognosis"..? I had a PCR and FISH - either of those?
Hope my oncologist is not offended when I show her this, as she wants to
increase my Gleevec, but I think I'm tolerating as much side effect as I can
handle at 400mg level. I can't understand subjecting my system to stronger
doses than necessary.
Thanks
Barbara

Hello All,
After a month and a half of worrying about my WBC rising, it is back in the
normal range today at 7.2. I had been trying to figure out how did I go from
"complete hematological remission" to an ever rising WBC? The only thing
that I was doing differently was the introduction of Tompamax to battle the
headaches I refer to as "Gleevaches." Well, I stopped the Topamax for the last
two weeks and wa-la! WBC back in normal range. Is there a correlation I
asked? Could be? SO, I am going to stay off the Topamax and see what happens.
Anyhow, I really needed to great news today!
Chris
************************************** See what's free at http://www.aol.com.

Wendy,
I don't think you were complaining at all. You were just worrying about
having to take the new step so soon and any one of us would have the same
concerns. Even me 7 yrs later! It's just the way the human mind works.
But once you think things through and find the positives as you and Joel
have done, you just get on the bus and go with the plan that God has for you
and your family.
Ecclesiastes Chapter 3 (to everything there is a season)
It's hard to remember when you really need to, but you don't think this
group wasn't planned already too do you?
Lisa Martinez

I don't post often, but read all the posts. Here is my
predicament. I was diagnosed in May 2005 and started on 400mg of
gleevec. My first oncologist yo-yo'ed with my dose between 400mg
all the down to 100mg. Not knowing at the time what I know now, I
realize he shouldn't have done this and I switched dr.'s after about
5 months with him. It took me almost 2 years to reach FISH negative
(0%). I reached MCR (major cytogenic response) after 6 months, but
just could not reach that zero. My dr. increased my dose in 2/07 to
600mg hoping to push me into CCR. My FISH results in Feb. 2007 were
zero and pcr was 0.020. FISH (June '07) just came back at 2.5%
and pcr was up to .125%. Plus, since the increase, I have had
excessive swelling/fluid retention in my legs, ankles, abdomen.
Talked to the dr. yesterday and he wants to switch me to sprycel
because of the swelling and increase in pcr/fish. I am just
wondering if this is the right thing to do? I was hoping to get
more than 2 years out of gleevec. Any thoughts on this?
Jennifer
DX 5/05
600mg gleevec

Hi Jennifer,
It is time to see a CML specialist and get a second opinion. My suggestion
would be to see Dr. Moishe Talpaz in Ann Arbor.
In the meantime I would ask your doctor to redo the PCR test. A FISH result
of 2.5% is the same as a 0 %.
I don't understand why he increased your dose to 600 mg. You were already at
CCR. Did he want you to get to PCRU?
Zavie
Dr. Moishe Talpaz
Associate Chief, Division of Hem/Onc
Dept of Internal Medicine
Associate Director Cancer Center
Translational Research Program
Ann Arbor MI
734-764-8195
mtalpaz@...
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi Wendy,
Sorry Joel is not able to tolerate Gleevec as it seems but prior to Gleevec
many of us didn't tolerate Interferon very well either. Then came Gleevec
the miracle drug!
Now who's to say that sprycel isn't going to be Joel's miracle drug and the
miracle drug for all of us in the future for that matter.
The great thing here is that there is an alternative now.
Thank God!
And please let us know how Joel does on the new drug. Believe me were all
anxious to hear about it.
Lisa Martinez

Once again---all of you out there are so amazing and uplifting with your
responses - thanks so much! We feel that everything happens for a reason, so
we are ready to walk down the Spyrcel path. And many of you "old timers" are
right...I know many of you probably would like to say "Stop your complaining
- you have options these days!!!" And, you all have every right to say
that...so once in a while--you should say that to us newbies!!!! We cannot
imagine what you all went through before the Gleevec days....you all are
very strong, and it is always so great to hear from you seasoned veterans.
Joel and I had it in our heads that CML is all about buying time...since new
drugs are in trials and coming out frequently it seems. We had it in our
heads that we would maximize the time on Gleevec (hopefully years), then
switch to Sprycel if need be...then....hmm...AMN-107...then the latest and
greatest new drug. So, here we sit...Joel couldnt get even 1 year out of
Gleevec, but we now know there have been many others who couldnt even get 5
months out of it. We are already heading down the Sprycel path...and
hopefully that will last for a little while. I must admit (as I think I have
stated before), Joel takes all of this in stride and always has a positive
attitude and always has such a good perspective on all of this, and figures
why worry about tomorrow, as long as we get through today!
All in all, God has a plan for all of us, and this is his plan for Joel! And
yes--we are seeing the Grand Daddy of CML on July 26th...so we are very
excited.
Thanks again for all of your encouragement---I hope each and every one of
you knows how much I really truly mean that.
Regards,
Wendy

Hi all,
I will be relocating to Dallas from Detroit in the next month or so.
Does anyone know of a great oncologist (a CML expert) in the Dallas
area they would recommend?
Thanks in advance for any information.
Regards.
Wayne

Sorry to hear that your husband is unable to tolerate Gleevec Wendy. I guess am
very fortunate, after reading all these horror stories on this site re. Gleevec.
I was diagnosed with CML over three years ago. They put me on 400mg of Gleevec,
and I have only minor problems with the drug i.e. occasional nausea or muscle
cramps at night in my calves. Other than that, my white count has maintained a
normal level since starting this med. I feel strong (I'm 63) always. Believe me,
I am not bragging, just very thankful! I wish your husband all the best and God
bless him!
To: CML2@...: weez_555@...: Mon, 18 Jun 2007
20:54:21 +0000Subject: [cml 2] Joel going off Gleevec
Well, my husband Joel went off Gleevec for 4 weeks waiting for his liver to
"recover" (it was at 6x the normal toxicity rate). It did recover to the
"normal" range and he resumed Gleevec last week at a 300mg doseage (100 less
than his normal). He has been on 300mg of Gleevec for 7 days, and his liver shot
back up to 4x the toxicity rate...in just 7 days. It appears that he will have
to go off Gleevec due to these liver issues and onto Sprycel, although we are
awaiting a call from his doctor to discuss all of this...but we sort of already
discussed that if his liver did not "tolerate" Gleeevec, we would start looking
at Sprycel. We have an appt July 26th with Dr. Druker, and until then, will just
follow the directions of Joel's oncologist....He was only on Gleevec about 9
months all together and he felt quite well, so we are disappointed that he is in
the less than 5% of people who have to go OFF of it due to these liver issues.At
this point it does seem like this is a huge indication that his liver cannot
tolerate Gleevec--after having been off of it, his liver returning to normal,
then once Gleevec started again, his liver jumps back to high toxicity
levels....right? Has anyone else on this forum had these same type of
issues?Regards,Wendy Cerverawife of Joel Cervera, age 34diagnosed 06/2006,
400mg/Gleevec

Well, my husband Joel went off Gleevec for 4 weeks waiting for his liver to
"recover" (it was at 6x the normal toxicity rate). It did recover to the
"normal" range and he resumed Gleevec last week at a 300mg doseage (100 less
than his normal). He has been on 300mg of Gleevec for 7 days, and his liver
shot back up to 4x the toxicity rate...in just 7 days. It appears that he
will have to go off Gleevec due to these liver issues and onto Sprycel,
although we are awaiting a call from his doctor to discuss all of this...but
we sort of already discussed that if his liver did not "tolerate" Gleeevec,
we would start looking at Sprycel. We have an appt July 26th with Dr.
Druker, and until then, will just follow the directions of Joel's
oncologist....He was only on Gleevec about 9 months all together and he felt
quite well, so we are disappointed that he is in the less than 5% of people
who have to go OFF of it due to these liver issues.
At this point it does seem like this is a huge indication that his liver
cannot tolerate Gleevec--after having been off of it, his liver returning to
normal, then once Gleevec started again, his liver jumps back to high
toxicity levels....right? Has anyone else on this forum had these same type
of issues?
Regards,
Wendy Cervera
wife of Joel Cervera, age 34
diagnosed 06/2006, 400mg/Gleevec

Hello All,
We have a unique opportunity to test out a new web cast program.
Thanks to Dr. Pierre Laneuville, Dr. Jeffrey Lipton and Dr. Bence-
Bruckler
who will be providing us with an update on the latest news about CML
and
current treatments and a special educational grant and benevolent web
cast
company.
This event will take place on Wednesday evening July 25th between the
hours
of 6:30 to approximately 8:30. Fellow CMLers in Montreal, Toronto and
Ottawa - mark this in your calendars and please respond via e-mail to
confirm your presence (refreshments will be provided).
We will be testing this program between three locations in Canada:
Montreal,
Toronto and Ottawa. A meeting room will be provided in each location
for the
patients and their doctor to hear and interact with the patients and
doctors
from the other cities.
Since the CML Society is patient driven, we are asking patients to
provide
us with topics they would like to be updated on.
Please confirm your attendance and send your suggestions for topics
via
email to: cheryl.simoneau@...

Hi Jane,
Only new members are moderated, meaning their first message can be
delayed by a day or so but this doesn't apply to you so I'm not sure
why your message didn't show up.

Hi all
I am a bit confused. I posted a thread on Saturday and I still don't
see it. What is the usual turn around time these days? When I joined
more than a year ago,it used to be much quicker than this but I haven't
posted for a while so perhaps things have changed?

I have lurked for 3 years. I am not sure what Zavie's zero club means?
Is that once you hit remission?
Thanks,
Germaine
dxd 10/2003
gleevec 800mg 11/2003-1/2006
dasatinib 100mg 1/2006-still taking

Hey Marcos. . .
I am truly enjoying the great photos at length, using my imagination and my
relaxation CDs; I was so relaxed that I actually fell asleep at the 'puter which
never happened with the cds alone. Now all I need is a laptop, and my sleep
problems will be over. (hint/hint I hope my kids read this) 'hehe'.
As always, ALL are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Tracey,
Why not try Lunesta, since the warning says it is ok for long term use? It
maybe ok for you.
I just want to follow my MD's warnings as he has had a LOT of experience and
is VERY open minded.
My cousin is addicited to Ambien. So, I really wouldn't chance long term use
on Ambien.
Perhaps, asking others rather than simply relying on manufacture's labels is
the way to go.
Just a suggestion!
Take care!
K
Kat McAllister <irshgrl500@...
Thanks Tracey.
I did not know that about melatonin. I took it years ago and perhaps,
missed the warning or it was not there, at the time.
As far as Lunesta goes, I was told it could be addictive by my MD. I
don't care what the Lunesta info says, if my MD said it could be
addictive, then I am not going to take it long term. OK?
Sorry, I wasn't previously clear.
K

Thanks Tracey.
I did not know that about melatonin. I took it years ago and perhaps,
missed the warning or it was not there, at the time.
As far as Lunesta goes, I was told it could be addictive by my MD. I
don't care what the Lunesta info says, if my MD said it could be
addictive, then I am not going to take it long term. OK?
Sorry, I wasn't previously clear.
K

Though both Ambien and Lunesta are addictive, I have taken Lunesta
and like it. I don't recommend either, for long term use, as they are
supposed to be short-term solutions for sleep deprovation.
I have taken Melatonin and don't remember EVER reading it
shouldn't be taken by anyone who has leukemia.
K

http://online.wsj.com/article/SB118168968368633094.html?mod=googlenews_wsj
The Growing Clout Of Online Patient Groups
THE INFORMED PATIENT
By LAURA LANDRO
When researchers at Harvard University were looking for a gene mutation in a
group of rare blood cancers, they turned to Joyce Niblack, who put the word
out to an online patient mailing list she manages, spurring more than 300
members to send in mouth swabs and bone-marrow samples.
Later, Ms. Niblack mustered 1,179 participants from 30 countries for a Mayo
Clinic-led study of how the cancers, known as myeloproliferative disorders,
affect quality of life. The Mayo researchers are now running the
clinical-trials page on her foundation's Web site, mpdinfo.org, to keep
participants up to date on developments.
Online patient groups have become an increasingly powerful force for
health-care consumers over the past decade, raising funds for research and
offering patient information and support. Now, as the cumulative power of
their memberships grows, these groups are becoming invaluable partners to
researchers and physicians searching for cures.
Patient groups are stepping up their participation in medical and
public-health research and entering far-reaching collaborative efforts with
researchers, scientists and drug developers. They are raising funds and
taking part in studies to evaluate the impact of online patient sites. They
are even conducting their own studies on side effects of medications, and
working with researchers to recruit clinical-trial participants, provide DNA
samples and start tissue banks.
In the case of Ms. Niblack's efforts, the results of collaboration are
already apparent. The DNA gathered from the group's mouth swabs and
bone-marrow samples helped researchers identify a genetic mutation that
could be a target for new therapies. The finding could lead to new drugs or
other substances that attack specific cancer cells without harming normal
cells.
"Groups like those led by Joyce immensely serve the needs of patients," says
Ayalew Tefferi, a Mayo physician and researcher who works with the group.
Her foundation's Web site is "one-stop shopping for clinical trials and
breaking news in research."
Other online groups are having a similar impact. An online group for
patients with a rare cancer known as leiomyosarcoma sent more than 300
tissue samples to researchers at Stanford University for a tissue bank that
is being used to study genetic and molecular changes that occur in the
disease.
The International Myeloma Foundation conducted an online survey of patients
that helped identify jaw bone deformities in some patients taking the
Novartis drug Zometa, which is used to reduce or delay bone damage that may
occur with the disease. Novartis now advises patients to avoid invasive
dental procedures while taking Zometa.
Spreading the Word
To spur more widespread collaboration, a group of experts in patients' use
of the Web just launched a new Web site and blog, e-patients.net, originally
developed by Tom Ferguson, a physician who received funding from the Robert
Wood Johnson Foundation and the Pew Charitable Trusts. Following Dr.
Ferguson's death last year after his own 15-year battle with multiple
myeloma, his cohorts completed his study, "e-Patients: how they can help us
heal health care," which is available free on the site.
Co-authors of the blog include Daniel Hoch, a neurologist at Massachusetts
General Hospital, and Susannah Fox, a researcher at Pew's Internet and
American Life Project.
Another member of the team, Gilles Frydman, founder of the Association of
Cancer Online Resources, recently launched a patient-focused "wiki" -- a
collaborative Web site that visitors can add to and edit -- called
lo-wiki.acor.org. The site helps consumers build and maintain online
discussion groups and aid researchers who want to study such online
communities or use the online groups to conduct research. Mr. Frydman, who
started ACOR more than a decade ago when his wife was diagnosed with breast
cancer, is also developing other sites, including one that will provide
links to medical research papers for patients.
ACOR, which offers access to 159 mailing lists for cancer and other
disorders, including the one managed by Ms. Niblack, had about 110,000
cancer patients and caregivers using the online communities over the past
year, according to Mr. Frydman. But there are tens of thousands of such

Kat, I'm sorry you took my "Be Happy" as a suggestion. It was referencing my
signature and what ever you like to feel, if that makes you happy then "Be
Happy". I don't have the right to judge or lead if someone wants to go there own
path. Please excuse my verbaige for that was not my intent. So, we're now moving
on...
Kat McAllister <irshgrl500@...
to feel the way I want to feel, yet you end your
message by telling me to be happy.
Thanks but I now am a bit sorry I have posted as much as I have. I
would like to move on from this topic.
K

Hey Irshgrl,
It's okay to feel as you do. It's your life and one can feel about it how they
please. All I would ask is this: Does feeling the way you do improve your
condition? What ever the answer is we should always think about the
possibilities of what could be.
Be Happy..
Kat McAllister <irshgrl500@...
Jeanny, I am sorry but either your message is not clear or it did not
come through clearly, or at all. Nonetheless, "The hardest thing to
say to someone", wasn't what I wanted to see on my email, coming from
a CML group.
I have never posted about my experiences with CML but for the last 10
years, I have struggled and gone through more hell than I wish on my
worst enemy. I am grateful, more than anything to be alive but
possess more anger than I care to admit or care to acknowledge. My
relationship with God at one time, was so good, I seriously
considered becoming a member of the clergy, and devoting my life to
him. Now, I barely attend Mass, and when I do, it is as sporadically
as my prayer commitments.
Every Cancer survivor, I have ever met, has such an incredible
attitude towards life. I commend them and praise their heroic
attitudes, and envy them, as my attitude is so very different. In the
short few days, I have been a member of this group; I have received a
couple of lovely emails, and read some wonderful posts. It would
appear most members of the group also possess the same great attitude
about life and being alive. I just wish I could find someway to have
this attitude.
I wish everyone, the best, and a long and happy life.
K

You say I am allowed to feel the way I want to feel, yet you end your
message by telling me to be happy.
Thanks but I now am a bit sorry I have posted as much as I have. I
would like to move on from this topic.
K

Hi Carolyn,
It sounds like you're describing Overactive Bladder Syndrome. This
is very common in women and has nothing to do with Sprycel. If you
do a Google search using "overactive bladder", you'll get a ton of
information.
Take care,
Tracey

Dear kat,
I M surprised to see your note. My dear I m also
patient of CML since Nov 2003 & proud to say this is
the best side for CML patient.
Being a member I can say sorry.
Be possitive & enjoy life.
GOOD LUCK
J P Tiwari

Dear Group,
Has anyone on Sprycel been bothered with frequent urination and
pressure? Been to Dr. and bladder infection was very minimal. Had a
neg Gyn exam. So I guess it is something that I have to live with
until it goes away.
Thanks to all.
Carolyn

Jeanny, I am sorry but either your message is not clear or it did not
come through clearly, or at all. Nonetheless, "The hardest thing to
say to someone", wasn't what I wanted to see on my email, coming from
a CML group.
I have never posted about my experiences with CML but for the last 10
years, I have struggled and gone through more hell than I wish on my
worst enemy. I am grateful, more than anything to be alive but
possess more anger than I care to admit or care to acknowledge. My
relationship with God at one time, was so good, I seriously
considered becoming a member of the clergy, and devoting my life to
him. Now, I barely attend Mass, and when I do, it is as sporadically
as my prayer commitments.
Every Cancer survivor, I have ever met, has such an incredible
attitude towards life. I commend them and praise their heroic
attitudes, and envy them, as my attitude is so very different. In the
short few days, I have been a member of this group; I have received a
couple of lovely emails, and read some wonderful posts. It would
appear most members of the group also possess the same great attitude
about life and being alive. I just wish I could find someway to have
this attitude.
I wish everyone, the best, and a long and happy life.
K

Hi Karin,
Welcome to the group. When new members join our group, they are put
on "moderated" status automatically so their posts don't show up
until a moderator can approve them. This sometimes happens within
minutes while other times it can take a few hours. The reason we do
this is to cut down on spam.
Once a member has been verified as being a legitimate member (as
opposed to someone looking for a hot date on Saturday night or
someone trying to sell the latest magical, cure-all elixir), then
their status is changed and they can post freely.
I'm sorry you found it frustrating to wait to see your messages
posted but we do this to ensure the board runs as smoothly as
possible.
Tracey

Hi Ceil,
You were close. You got all the numbers right, but in the wrong order.
Your Zero Club number is 1006.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hello,
I joined this group so I could participate and communicate with others
about life with CML. Since my messages do not seem to get posted, I
think it is best if I discontiune my membership.
All the best and a happy healthy recovery to all.
Much love,
Kat

Thank you Bil. I will select one for the Zero Club logo.
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Dear Hassan,
It will be an honor to use one of the logos for the Zero Club.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi,
Haven't posted in a while, but I read all the postings. Just want to
add my 2cents worth that I think both Logos are great and would accept
either one. I am very proud to be part of this 0 club. I think my
number is 1060 but I am probably wrong. I didn't write it down and at
my age (74 young) I get some senior moments.
Love, hugs and good health to all.
Ceil
DX 6/06
400mgs Gleevec
still working 3 days a weeks
some side effects especially being tired and bone pain. Other than that
I am grateful for every day. I look at it as a gift.

Hi,
I think these logos are great! The one with the yellow background and
the Z is very European..
They both look great!
Zavie want to make one of them your official logo?
Bil in the UK

ok Tim
I have survived when there were no drugs for CML,
or at least just one which was Myleran, and I never
did
understand nor did the doctors how I survived over
all these years.. So for me to say any drug was better
or more effective would be a lie. All I know is that
I am still around.. Still taking new drugs
ie. Exjade and nilotinib..BTW nilotinib is still the
name that my onc uses as well as the people from my
trial and Novartis.
thank Skipd
my diary of blood counts on AMN107
http://easyskip.tripod.ca

SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

Hi Everyone,
At Hassan's request, I've uploaded the designs he created for Zavie's
Zero Club. You can view them either by clicking on "photos" at the
left of the screen or by clicking on the link below.
Take care,
Tracey

Tracey and Marcos
From Tracey's note:
The Introduction page has this statement.
Homeostasis, the maintenance of blood cells, is maintained throughout
life by a rare cell type residing primarily in the bone marrow (BM),
where it makes up less then 1 in 104 to 105 cells [1]. This cell type,
the hematopoietic stem cell (HSC), gives rise to all blood cell
progenitors through differentiation.
Using this ratio and the body's total blood cell count in the trillions
(10e12), this arrives at an estimate for the total HSC population in
the body of about 10 to 100 million cells.
I recall a graph I saw once that estimated the residual disease in a
CML patient in PCRU, which means only quiescent leukemic stem cells are
left, at somehwere around 10,000 to 1 million. I'll see if I can find
that figure. Dr. Tessa Holyoake's lab has done a lot of studies on the
leukemic stem cell. I'll see if she wrote on this subject

Thanks for this explanation Timothy. It clarifies what the FISH test
does. My FISH was 100% at dx (7% 6 months later, 0% at 12 months). I
think I have read a few posts with people reporting 100% FISH results.
I do not think 100% on a test (FISH ot cytogenetics) means 100% of the
cells are leukemic, I argued enough with my first oncologist about
that, and I actually served her the same argument you are giving, I
wouldn't have had a normal cbc 3 weeks after starting gleevec if it
was the case. Just from a statistical point of view, a limited sample
is unlikely to show rare events. The same applies for PCRU not being
equivalent to being disease free.
To come back to the question about how many HSCs are ph+ at dx
(assuming 100% FISH, 100% cc), what you mention about the cc looking
at progenitors or HSCs seems to me be the core of it. If it looks only
at progenitors, assuming the ph+ HSCs are producing more progenitors
than normal HSCs, the cc result about how many progenitors are ph+ is
overestimating the number of ph+ HSCs. If the cc looks only at HSCs,
then it should be a fair indicator of how many HSCs are ph+, assuming
cml is diffuse and the bone marrow sample is representative. No wonder
I can't get straight answers from my different drs ;)
Marcos.

--
Marcos Perreau Guimaraes
Suppes Brain Lab
Ventura Hall - CSLI
Stanford University
220 Panama street
Stanford CA 94305-4101
650 329 9920 x 305
650 630 5015 (cell)
marcospg@...
montereyunderwater@...
www.stanford.edu/~marcospg/

I just thought I'd chime in since I have some experience with the
common tests for CML.
The FISH test involves 2 DNA probes that have a fluorescent dye
attached. One probe for BCR (green) and the other for ABL (orange).
The test can be performed on blood or marrow but peripheral blood
access is easier and the cells are pretty hardy and can sit around
for
a couple days if needed. You take the blood and add a chemical that
puts small holes in the cell surface thus allowing the probes to get
insidewhere they bind to the DNA. Turn off
the lights and look under a microscope. Only nucleated cells (all
the
white cells and hematopoietic progenitors) will have dye in them so
the
tech starts counting with a clicker. Cells that appear to have
orange
and green in proximity or appear yellow (fusion of color) are Ph+.
If
dyes are apart, the Ph-. Counting takes 15 minutes and the FISH
takes about 2 hours in total to
perform. The cells that are seen as Ph+ would be any blast cells but
also many of the white blood cells also. The disease often presents
as
proliferation of myeloid cells (neutrophils, basophils, eosinophils)
but lymphocytes and monocytes can be Ph+ also. As I recall, in a
newly
diagnosed CML patient, 100% of the the myeloid lineage cells are
Ph+.
That's about 70-80% of the white blood cell population right off the
bat. The lymphocytes tend to be Ph- and and the moncytes are about
hafl Ph+.
To Tracey's comment, I have seen high FISH counts (90+%) but never
100%. There is always a few normal cells (probably lymphocytes) in
the
sample.
Now the Conventional karyotyping Cytogenetic (CC) test is similar in
sensitivity and provides similar results as the FISH test but there
is
a big difference. The CC has to be done on a marrow since you are
only
counting the cells in metaphase. This is a step in the cell division
process just before the cell divides and these cells are only in the
marrow. Why a metaphase? Because its easier to discern the
different
chomosomes banding patterns and shape in a cell in metaphase (short
chromosome 22 = Ph+) than the other steps in the cell cycle. After
the marrow is drawn, the sample
is sent to the lab where they incubate the cells in a culture media.
The next day the techs remove the cells with many of the mature cells
having died off. Dark room again with a microscope and a tech
counts 20 metaphases in a 3-4 hours. Quality of the sample and lab
time limits the number of metaphase that can be counted in a fairly
routine manner to 20. I've seen samples (non-CML) where we struggled
to find 5 metaphases to count.
A cell in metaphase is likely a normal Ph- Hematopoietic progenitor
or
a Ph+ leukemia cell. Its impossible to tell right now if the
metaphase
is a progenitor or a HSC. I'm not sure if it matters. Most new
patients are 20/20 positive thus
100%. Tracey is right that in reality the marrow is not 100%
leukemic. If it was, a patient responding to Gleevec would become
dysplastic (empty marrow) so the normal HSC must still be there to
later regenerate normal blood cells. The reason the CC test is often
100% Ph+ is probably due to the fact that the leukemic HSC are
dividing
more often and the resulting progenitors are also dividing faster
than
there normal counterparts. By the time a person is diagnosed with
CML,
more than 95% of the cells dividing in the marrow are PH+ and since
the
sensitivity of the CC test is 5%, the normal metaphases don't get
picked up so the test result is 100% PH+.
To use the analogy of an assembly line, the CC test is counting the
cells at the begining of the line and the FISH test counts the end
product. Still, they are linked so that as a person responds to a
therapy, the results for both test decline.
I hope this helps. I think that many of the posters on this board
already have a fantastic knowledge of CML.

Hi Hassan,
Unfortunately the CML site doesn't let you post pictures so we didn't
get to see your Logo for Zavie's Zero Club.
You can either upload the picture into our "photo" section or you can
email it to me and I'll upload it for you.
Take care,
Tracey

hi every body
i am hassan from abadan . i since cml 1999. so i
design a logo for zavie zero club . zavie is my best
friend in world wide . i like he alot . i design this
logo for he with my brother . please look and tll me
your idea . it is a symbol of oure club there are alot
hope in club .n this is persent to zavie a person is a
hope and lucky cmlers . aperson that we like and love
he.
hassan
abadan

Hi Marcos,
Thanks for the great sites. I've never seen the "hierarchy" of blood
cells so clearly put before. You didn't happen to come across anything
definitive regarding how many HSC's we have did you?
Those diving pictures were pretty neat too. Some were nothing short of
spectacular while others were amusingly creepy :) Thanks for sharing
them.
Tracey

My Onc Doctor, received from the company,
permission to increase my dose of AMN107
to 800mg, I have been on 400 for quite a while.
In fact the study nurse said they now can increase
or decrease the drug as need be.. So I assume from
that they are close to having it approved..I hope
so for a lot of people.. She did not know when
but I guess they are not holding the rope so tight,
and allowing some leaway..I must, in MY case, admit
it has been easier to take SO Far, not as bad as
Gleevec or Myleran...
SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

I hope everybody had a good week-end.
First, following up on last week long thread here a chart of blood
cells and they relation to each other (it's a large file, watch out if
you have a small connection) :
http://tinyurl.com/33xtb4
or
http://upload.wikimedia.org/wikipedia/commons/6/69/Hematopoiesis_%28human%29_dia\
gram.png
The wikipedia on HSC has a few strange things but the chart is nicely
done and may help reading some of the cryptic cml papers.
Erythrocytes = red blood cells
Thrombocytes = platelets
For those who had a number indigestion from last week thread, here a
few pics of last week-end to show there is hope to enjoy nature with
cml :
http://stanford.edu/~marcospg/log.html
Cheers,
Marcos.

Chris
A BMB is not recommended until the 6 month mark after starting Gleevec
so your doc is not out of line. It could be done before that but there
has not been a lot of studies on looking at results at an earlier time
frame so you doctor would not have anything to compare to.

Lisa, sorry for the slow reply on the BMB. I had been out of town. I have
not had another BMB and am at the 100 day mark of the Dx. I see the Onc in
one week. He had a blood test sent off to determine how much of the Ph
chromosome I have in my system. I really did not understand it all. But,
seemed
like he knew what he is doing. Also, stated from the beginning he worked with
Dr Druker in past years and knows him, confers, seems like he knows what he
is doing. The center I go to in Pensacola is very well respected. When I
asked about the BMB, he said, not yet. I will quiz him on that at the next
appt, not that I enjoyed the first one all that much. In fact, the BMB made me
sort of look forward to the spinal tap! ha
Chris
************************************** See what's free at http://www.aol.com.

Hello all,
My name is Karin and I'm new.
Looking forward to being part of the group.
Thank you,
Karin

not sure how you read my e-mail, but I used me.. as
the operative word. I never try to say one is better
than the other. I never try to get to technical, I
just give my own experience. How medication works on
me.. I leave everyone to their own experince. If
asked I will respond but never volunteer any
information, only on my web site which shows my counts
and how I respond.
SkipD

SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

Hi Tim,
Thanks for giving us a great summary of the side effects for AMN-107.
Can you give any more detail about the anomalies that were found
regarding the pancreas? Which lab tests did they do to monitor it? I
assume that pancreatitis wasn't the issue since you said that most of
the patients didn't have any physical symptoms? Do you know if the
patient's lab results returned to normal after they discontinued taking
the drug?
Thanks for your input,
Tracey

Timothy,
Thanks for paying attention to your ol man. I am following this very close
myself. It is due to come out late this summer/fall, final trial. I guess from
what I see it would not be a choice, it would be perhaps be another option
should sprycel decide to take a shit. As you read it is not a cure and same side
effects. I guess if you got to be sick it is nice to know there seems to always
be another option. I think I'll be jamming along for the the next twenty years
this way.
Love DAD
Timothy <timothyfarley16@...
side effect profile for AMN-107 is both similar and different to
Gleevec. To say its safer is a bit of stretch to conclude.
AMN107 is a modified version of Gleevec to bind better to the BCR-ABL
protein and focus more of its activity vs. the BCR-ABL structure.
The follow-up for AMN-107 is not as long and its really not tested in
the same population since the people in the study were resistant to
Gleevec. Thus a direct comparison may not be fair.
The results so far show that for the many of the standard Gleevec
side effect (rash, nausea, fatigue, cramping, etc) the serious Grade
3/4 and overall side effects profile for AMN107 is basically the same
as Gleevec.
The amount of peripheral edema in people taking AMN107 may be less
than seen in Gleevec. Also, almost none of the people who had a
serious side effect while taking Gleevec experienced the same side
effect on AMN-107.
Unexpectedly, serious lab test abnormalities indicating liver and
kidney toxicity was several times higher in the people taking AMN107
as compared to the experience with Gleevec. Something that had never
been reported with Gleevec was serious lab test abnormalites of the
function of the pancreas in the AMN107 group (
of the people experiencing these abnormalities did not have any
physical complaints but they had to stop taking AMN107 once the
abnormal test was observed. Also, a few people taking AMN107
experienced some cardiac problems so their may need to be greater
precaution with regard to taking AMN107 in people with a heart
problem history.

I managed to find one link that says we have 25 trillion blood cells
and it goes on to say that 2 million of them are made every second to
replace those that die.
http://www.shirleys-wellness-cafe.com/stemcell.htm
Frankly, I find this a bit much so I'll keep searching for more
links....hopefully I'll find ones that are a bit more credible than
this one :)
Tracey

Hi Liza
well as you know everyone's experience is different
but as far as I am concerned AMN107 is a blessing
hardly any effects at all, bit of itching etc
sometimes a sore back.. but all in all great
best thing since sliced bread as for me that is..
it is supposed to be 5 time stronger than gleevec
yet I had tons of problem with gleevec..
Hope this helps
Skipd

SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

Hi Marcos,
I did realize that you were talking about hematopoietic stem cells.
What I'd like to see is a link showing how many we have. Since we
now know how many are leukemic on diagnosis (aprox. a trillion), we
could say exactly (more or less) what percentage that is if we knew
how many there were in total. I'm usually pretty good at finding
articles on the web but I've been having difficulty finding one that
explains this. Do have any links?
Have a great time in Monterey,
Tracey

Hi Tracey,
There are blood cells (like red blood cells,WBC, platelets) and blood stem
cells (HSC). The later makes the former. BMB cytogenetics, FISH and PCR
looks only at HSC. It's the CBC test that looks at the blood cells that are
not stem cells.
I probably read somewhere how many blood stem cells (HSC) we have but I
can't remember it now, I ll have to check later. If we look at the blood or
at the bone marrow ( where the drug actually works), I would bet that when
the BMB says 20/20 ph+, and the FISH 100/100 ph+, there are more than 95% of
HSC cells that are ph+ in the blood or in the bone marrow. I should have
said HSC in blood or bone marrow from the beginning, I apologize if that was
unclear.
This time I am going to have wish an excellent week-end to all, I have
meetings at the lab and then I take off to Monterey.
Cheers,
Marcos.

Hi Mario,
Can you give a link that shows this?
Tracey

The number of blood cells has been estimated at 1 trillion.

Hi Marcos,
Yes you're right, not all cells are blood cells. I've heard one of
the experts refer to the number of blood cells in our body as being
in the neighbourhood of 3 trillion but I couldn't find a link for it
so I didn't quote it in my earlier post.
If this is the case, then 1 trillion cells at diagnosis compared to a
total of 3 trillion in the body, does not come close to being 95%
right? Am I missing something here?
Tracey

Forgot to thank you for the link, I don't think I have read this one.
May even print it for my local hemato :)
Marcos.

Here you are comparing apples and oranges ;)
100 trillions is approximately the total number of cells in the human
body, not the total number of blood stem cells (hematopoietic stem
cells or HSC). Only HSC with ph+ translocation are cml cells (but for
a small percentage of patient who have a ph- cml). Skin, bone, and
other stem cells do not become leukemic. Neither all the other cells
in the body that are not stem cells.
When I refer to the fraction of ph+ cell in my body I am referring to the ratio
(number of ph+ HSC) / (total number of HSC)
What all these test try to estimate is, among the cells that are
susceptible to be ph+, how many are. When a BMB, a FISH or a PCR is
performed, only HSC are studied.
I think (can't check it right now) that 1/100000 cell in the blood is
an HSC, and something like 1/15000 in the bone marrow. But the
proportion (ph+ HSC) / (normal HSC) is I think considered to be about
the same in blood and bone marrow.
Marcos.

Hi Barbara,
I would ask your doctor why she wants to increase your dose at this
point. What is her goal and does she have any evidence to suggest
that your long term survival will improve with the increased dose.
I have not seen anything to indicate that being PCRU has any
advantage over having a 3 log reduction so if it were me personally,
I wouldn't want to risk getting more side effects for nothing in
return.
Take care,
Tracey

Hi Skip,
I haven't seen much on the list regarding the side affects of AMN107. But
maybe I missed it during a period where I wasn't able to read.
I heard initially from the doctors locally here that they were less than
Gleevec?
Is that true and what is the side affects of AMN107 is there a list
somewhere?
Lisa Martinez

Hey Group. . .
I hope that the 'Newbies' igged the posts that Marcos (Stanford U & Paris)
sent and Zavie & Tracey answered; I certainly did. Brother & Sister Survivors
have to know that the FISH Test examines 200 cells and the PCR Test examines
1,000; 10,000; 100,000 and 1,000,000 cells for Philly Chromosomes at
diagnosis/BMT (we have 3Trillion cells in our body). All we really have to know
is that once we reach '0'/Negative on the FISH Test; they are virtually obsolete
for us and we begin the PCR Test. Yes, Tracey~~GF he's comparing apples to
oranges, etc.
THANX for posting, Renee; I am updating my prayers for you Sweetie.
Take care, ALL are in my prayers. . .HAVE A FANTASTIC WEEKEND ! ! !
" WE ARE SURVIVORS ~ ~ WE AIN'T FINISHED YET ! ! !
"K"
"I AIN'T FINISHED YET"!!!

Hello Fellow CMLers,
We are planning a trekking expedition to the summit of Mt.
Kilimanjaro in
Tanzania Africa and there is room for a few more trekkers. The trek
will be
followed by a 3 day safari to the cradle of Africa.
Our expedition is leaving from Canada on December 28th and returning
January
9th. If all goes as planned we will be on the summit of Kilimanjaro
on
January 4th.
The group is comprised of CML patients and Doctors. The patients and
Doctors are paying their own way and are using the trek as a way to
raise
funds for the continuing work of of the CML Society of Canada in
providing
educational and emotional support to CML Patients in Canada.
Watch our web site soon for information on the Trek and opportunities
to
provide a charitable donation for this cause.
Please join, Dr. Pierre Laneuville, Cheryl-Anne Simoneau and Susanne
Aucoin
along with fellow trekkers on this exciting adventure to find out
more:
Www.cmlsociety.org
kili@...

Follow up to my own question by digging around the internet... I read
somewhere (an obscure place, maybe a stock insider analyst?) that
Novartis hopes to have it approved by the FDA by July 29th, 2007.
Can't confirm this with any other source (FDA, federal register, etc.)
but at least it gives me hope that it will be approved soon barring
any monkey wrenches dropped into the cogs. If someone else can
confirm, please post it. Regards, Tracy

I find this so interesting--the normal cost for my regular PCR test is
$845--which thankfully insurance covers.
Recently, I started to receive reimbursement checks directly from my
insurance provider (BC/BS) for my April PCR test. Normally this is sent
directly
to the lab. For some reason they sent it to me. First check came to me for
$463, then another one for $5505, then another one for $752.. I wondered what
was going on and who was standing to make some money here. I called the lab
(Genoptix) and asked them to send me the invoice for April vs January (last
2 tests). The April test came to a whooping $9655!!! I called the doc's
office who said they didn't ask for anything different. I called Blue Cross
who
said they were just responding to what the lab sent them. Another call to
the lab, then finally today, a call from my doc's office. They had checked
some wrong boxes on the lab request form--thus additional tests were done which
were not really needed (I have been pcru since January). Lordy. So, I will
send the reimbursement checks to the lab since they are legit tests. Hard
to believe that checking some wrong boxes led to an additional $8000 plus in
expenses.
Blessings to all,
Bonnie
************************************** See what's free at http://www.aol.com.

Hi Barbara,
This very same thing happened to me last year.and my doctor wanted to
increase my dose.
I did some research and found out that in fact Genzyne Genetics (the lab
that did the test) had just upgraded all their equipment to the latest and
greatest technology only a few months before.
So, this is what I told my doctor.how do we know that there wasn't a minor
detection previously but their equipment was not as sensitive as it is now
so for the first time we are seeing more accurate results?
Even with what appeared to look like an increase, I was still in the 4 log
reduction category so why jump the gun and add more meds to my regime which
would obviously have a physical affect on me with increased side affects?
Why switch my regime now when I may have to one day. I don't know about you,
but I believe in saving all the things that are now available for when and
if I really need them.
He still felt a bit nervous about not doing nothing so I asked him to
consult a few other scientists to see what they said using my theory. He
did and they agreed that I still had a 4 log reduction so there really was
no need to adjust meds.
I continued my 400 mgs and we monitored my PRC by peripheral blood through
the year.
This year in March my PCR results from my annual BMB which was evaluated by
the same lab, was undetected.
I know that my doctor was just worried that I was showing MRD but if you
think about the theory it makes perfectly good common sense and my doctor
was not aware of Genzynes equipment upgrade.
Check and see what lab your doctor has been using and if it is the same one
used previously. This very important as you can tell by the other threads
going on board today.
And again' from what I know' your results do look good.
PS.I hate to discourage any one but I no longer use LAB Corp for anything
other that CBC's since their results were always no detection even when
Genzynes did show a bit.
Even my peripheral PCR is now sent to Genzyne Genetics.
Lisa Martinez
Dx 5-2000 hydrea/interferon/arc
6-2001 Gleevec 400 mgs
8-2001 PCRU

My oncologist called me today about my PCR and FISH test. My FISH test was
negative and my PCR was:
Results: Positive Major breakpoint (0.006%)
Interpretation=this result is consistent with minimal residual disease
BCR_ABL transcript
Major a13a2=.006%
Major e14a2=not detected
Major combined=.006%
Minor e1a2=not detected
When I shared this report with this group a few weeks ago, everyone says
this was a good report. However, my oncologist wants to increase my Gleevec
to 600 MG. Does this match protocol with these readings? I thought she
would just continue me on my 400mg. I've been able to tolerate the side
effects at 400, but really scared what 600 will do.
Thanks

Hi Renee,
You can check out my son's caringbridge page and history here:
http://www.caringbridge.org/wi/tomneddo
You can also check out Martyn's caringbridge page. He just ran a marathon:
www.caringbridge.org/visit/martyncoyne
Barb Neddo

Hello All...
I am having the Stem Cell Transplant soon at MD Anderson. They are searching
for an unrelated donor at this time, due to my brothers not being matches. I am
ready to go for it, but still feel the need to hear a few success stories. I
just need a little encouragement right now. I'm 38, a single mother of two and
desperately want my active life back. So...if there is anyone out there who has
made it thru the transplant and is back to your normal life, I would like to
hear your story.
Renee'

If people didn't already think that PCR numbers were confusing, I
think we all confirmed it for them yesterday :)
It would really be nice if PCR's were standardized and less confusing
but then it would be even nicer if we didn't have CML and didn't have
to worry about them at all.
The lab I use now doesn't give any numbers, not a whole number or a
percentage, it just gives the bottom line which is the log reduction
and that is quite easy to understand. It's too bad that other labs
don't make it easier to understand.
The best thing I could suggest to people who get obscure numbers
reported to them, is ask your doctor (or the lab), what the end
result is. In other words, let them to the calculations and tell you
what kind of a log reduction you have. They should have all the
information they need (what the baseline figure is etc) so they
should be able to figure it out. All you really want to know is what
your log reduction is and from that you can gauge how well your
treatment is going.
Tracey

Hey Jeanny. . .
NO. . .you aren't 'depressed'. . .you do have a 'legitimate' reason to cry and
feel like you do. I read your post, and I will email you privately later.
I'm glad you found the group so early in your daughter's survival. Don't
hesitate to post to the group any questions/concerns you may have; we've all
been there/done that and are here for you and yours.
Take care, I have added you & your family to my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Well I will try again this time using acrobat reader..
Every time I try the list of side effects were cut
off. I am not sure why.. but with a PDF file no
problem acrobat readers are free on the net..

Hi Efrem,
When I say "baseline" I mean the baseline that that lab has
determined to be the average PCR score for a newly diagnosed
patient.
Most patients didn't have PCR's done at diagnosis so this is why they
use the average for a newly diagnosed patient and the three log
reduction is calculated using that original number from the lab, not
your personal number.
Your current PCR result won't mean anything unless you can find out
what your lab's baseline is. If their baseline is 300.00 your score
would mean something very different than if their baseline was 3.00.
Tracey

Boy I sure wish these posts had an "edit" feature. Ok, so once again
I've screwed up. Please excuse my sleep deprived brain that
obviously isn't functioning very well.
The difference between 30.00 and 3.55 is NOT 1.5 logs, it's not even
a full log. After going over the numbers with Zavie, we finally
figured out that the difference is actually .98 of a log.
The rest of what I said is accurate (as far as my sleep deprived
brain can figure anyway :)
Sorry for all the posts and the confusion,
Tracey

Hi Again,
I just re-read my post and realize that I lost a half a log in
there. So to clarify...each decimal point is "a log" but obviously
the number itself has something to do with it as well.
The difference between 30.00 and 3.55 is actually 1.5 logs not just 1
log.
The difference between 1.0 and 0.9 although technically qualifies as
being in the "moved a decimal" category, is really only 1 tenth of a
log difference because of the numbers themselves.
I hope I haven't confused you even more.
Try not to get too hung up on the numbers though, it's the trends
that are important and they take time to develop over several tests.
Tracey

Thank you for your response.
When you say "baseline" , what do you mean.
Do you mean my first test is base line or that each lab has the same base
line for everyone they test.
also, should not this number, in of itself, mean something?
It's a ratio of good cells to bad.
Therefore, I would thing that there are high and low ratios for that.
Tracey <traceyincanada@...
Hi Again,
I just re-read my post and realize that I lost a half a log in
there. So to clarify...each decimal point is "a log" but obviously
the number itself has something to do with it as well.
The difference between 30.00 and 3.55 is actually 1.5 logs not just 1
log.
The difference between 1.0 and 0.9 although technically qualifies as
being in the "moved a decimal" category, is really only 1 tenth of a
log difference because of the numbers themselves.
I hope I haven't confused you even more.
Try not to get too hung up on the numbers though, it's the trends
that are important and they take time to develop over several tests.
Tracey

Hi Tracey,
I also use Lorazepam! I find I need only 1mg and I get a nice easy
feeling sleep like a log. No hangover effect if I take it before 9:00pm
Bil in the UK

Hi Efrem,
The number means little without knowing the baseline of the lab. Since
all labs have their own numbers, you need to find out what your lab's
baseline value is, then you can compare your number to see what kind of
a log reduction you've had.
Each time the decimal point moves, it's one log so if your lab's
baseline was 30.00 then your count of 3.55 would be a one log
reduction. If your lab's baseline was 300.00 then your count would be
a two log reduction.
It can take time (sometimes even years) to get to the magical three log
reduction so don't worry if you're not there yet.
Your next PCR in three months will be important because it'll give you
something to compare this one to. In the end, it's the trend that's
important, not any one single test.
Tracey

I was diagnosed on 1/4/07 and have been on since late January.
I recently had my first PCR test and I tested positive with a number of 3.55.
Does anyone have any insight to what that means.
I did not do a PCR when I was diagnosed only a FISH test..

Chris,
I don't remember if you answered this question already but did you only have
one BMB at dx and none since?
New patients should have them done every 3 months until they reach PCRU.
I am sure your doctor knows what he is doing, but remember this...
Not all doctors are yet familiar with patients being involved with their own
care, having knowledge about their diseases and making decisions for their
self. Especially when they find out we've been on the internet?
It took a while (almost 2 yrs) for my primary Oncologist to get use to me
"negotiating with him" that's what we call it so that neither of us feel
like were in that power struggle.
After that he declared me his favorite patient. He explained how nice it was
to have a patient who had enough knowledge to share with him so that we
could decide on things together. He said it relieved a lot of stress for him
not to worry about me like he does his other patients.
In the trial stages of gleevec everyone was skeptical even with such
promising results. He and Moffitt Cancer center pushed me harder than I
wanted to be pushed for a BMT. Obviously I opted to wait for gleevec
regardless of their opinion.
Just last year on my 6the anniversary I asked him while he was doing my
annual BMB "hindsight" if you were me would you have made the choices I
made? Very quietly he whispered" I don't know. but I would wish that I did.
I have another doctor too at Moffitt. Very well known.I trust him and I like
him, but he sometimes is over confident and I feel like he's just blowing me
off to be in control. Like the pushy sales guy who knows it all, but could
care less how much his customer knows. I take this personal sometimes
because it feels like he's trying to make me feel like an idiot because he's
the doctor and I'm not. Maybe it's just me and my own personality but
none the less that's how I feel with him.
My other Oncologist had a bit of a time adjusting, but never made me feel
less than.
I'm telling you this because if you haven't had another biopsy since your
initial dx, you should and he should know this not to mention you do have
the right to make the decision for yourself.
The increase in your WBC's doesn't have to mean that you've become resistant
to gleevec, but the BMB can tell a lot more than a simple CBC.
Besides its time to have one again if you haven't already and WE know it's
best to be proactive :-)
Lisa Martinez

Lorazepam! It always works like a charm for me and I wake up feeling pretty
OK.
Ambien just turned me into some kind of creepy pod person, and trazedone
works but involves an extended hangover that lasts half the day.

Hi Everyone,
I'm curious to know if any of you have tried anything to help you sleep
better and if yes, did it work?
I've been sleep deprived pretty much ever since I can remember (which
I'm sure contributes to the fatigue and mental fog I have that I
sometimes blame on Gleevec).
I was ready to try Melatonin but then I read on the box that it
shouldn't be taken by anyone who has leukemia. Geez (insert frustrated
sigh here), I never saw that on anything before, such a specific
warning, I figured I better not take it.
So anyone try anything that works?
Tracey

Hi Jeanny,
First I want to tell you that I have lost many close loved ones in my life
due to many different traumatic reasons.
For 2 years I cared for my only sister when she was terminally ill and then
passed in 1994 at age 34.
In 1998 I lost my sister in-law at age 27 who was also my best friend. I
adopted 2 of her children and shortly after I was diagnosed with CML. I
didn't understand ..I was very depressed.
Then in 2001 I lost my son at age 19 because he was depressed about his
mother being sick and decided he couldn't live without me.
It was then that I realized that grieving is depressing and depression is
part of grieving. They did try to overmedicate me and I would not let them.
I knew I needed to feel the pain because death is part of life and grieving
is a normal reaction to loosing someone you love. However, I do take xanax
for anxiety which does not make the pain go away but helps when I feel that
everything is too overwhelming for me.
Actually I take it daily now and have been taking it for a few years because
I have to.
It doesn't get me high or make me feel like I don't know what's going on it
just helps me feel mentally stable if that makes any sense.
As for the CML Leukemia - I take 400 mgs of gleevec everyday and I am doing
great. I live pretty normal with the exception of I am a brunette with a
blondes brain:-) thanks for the laugh and I mean no offense to anyone
reading this post. \
Believe me; I sometimes wonder why there aren't more brunette jokes. Because
God knows I can be a real ding bat!
Anyway, what I want to say is that I am sorry you lost your mother. That is
painful for most anyone.
I am also sorry about your daughter's diagnosis but I just celebrated my 7
year anniversary and looking forward to living a long time.
Its scary at first but it will be ok. As time goes by and your daughter and
yourself communicate with people on message boards like this you will soon
find that the both of you are feeling more in control.
I suggest you take your doctor up on the medication offer but ask for
something very mild to help you rest your mind and heart a bit while going
through these difficult times.
Lisa Martinez

Chat Reminnder - 9:00 PM Eastern
Photos: Rideau Canal - Ottawa

Hi there--
I, too, want to let you know how much hope there is, even though it may not
seem that way now. My husband was diagnosed with CML last July--and our
first son was just 2.5 months old. Both of my parents died of cancer--my mom
when I was just 20, my dad when I was 32. Then, to have my husband diagnosed
with cancer when our son was just 2.5 months old, I never ever ever thought
I could get through that. And for the first little while, I too, thought I
was on my way to yet another death from cancer..and thought I was about to
become a single parent...a widower. But we got through all of that, it was a
rough couple months last summer...and now he is doing great. He takes
400mg/Gleevec daily and other than being a little more tired around the time
he takes his medication...he is doing excellent. In fact, it has almost been
a blessing in disguise--he now stays home 3 days a week with our son, and he
probably would not have done that before he was diagnosed with
leukemia--that right there shows you how good he feels most days...he is
chasing around a 13-month old!! Sure, he sleeps a little more, watches what
he eats a little more, and basically cherishes each day...those are the
things that has changed because he has leukemia. But, he is basically the
same ole' Joel...
So you hang in there, and visit this forum often...it is filled with
positivity and hope, and any time you have a question--just ask, everyone is
here to help.
God Bless your family...and it really will get better...I will keep you in
my thoughts and prayers.
Wendy Cervera

Hi Chris,
When is you BMB ? If you have a 3 month BMB scheduled that should be in the
very near future and it makes a lot of sense to wait and see how that goes.
If you are on your way to CCR then everything's good, otherwise you'll
probably get more gleevec or another drug. Try not to worry too much, I know
it's easier said than done. My personal discipline is a 2h a
week allowance to worry (to stay current with things), the rest of the time
I don't have CML. I hope you are getting the side effects under control,
keep good spirits.
Cheers,
Marcos.

--
Marcos Perreau Guimaraes
Suppes Brain Lab
Ventura Hall - CSLI
Stanford University
220 Panama street
Stanford CA 94305
650 329 9920 x 305
650 630 5015 (cell)
marcospg@...
montereyunderwater@...
www.stanford.edu/~marcospg/

Hi Chris,
I know how easy it is to worry. I really believe that not knowing
what's going on is worse than knowing, even when it's bad.
There are a few reasons why your white count could go up. If you
have some kind of infection, your white count will go up, if you're
on any kind of steroid treatment, it'll go up and it's been my
observation that bigger people have higher white counts than smaller
people. Are you a big person by chance? Did you ever have a blood
test before you got CML to see what a normal white count for you is?
Some people have higher counts than others and it's perfectly ok.
Like you already know, even if this is a sign of early resistance,
there are a multitude of options right now so try not to worry.
Take care,
Tracey

So my WBC was up again today.
3 weeks ago it was up to 12.9 from 6.5 over a 4 week period. Today we were
at 16.4 over a 3 week period. My Onc was still not loosing sleep, but did
have another blood drawl to send off. He told me he would let me know when it
was time to worry and reminded me about the other drugs out there.
So, I am not as upset as I was 3 weeks ago, thank to many of you all
reassuring me that is normal to roller coaster a bit the first many months. I
am
only Dx'd 1 March this year, so not even 100 days out.
Chris
400mg Gleevec per day
************************************** See what's free at http://www.aol.com.

Hi Jeanny,
Welcome to the group. I'm glad that Joelle gave you this website.
You've come to the right place for support. I know you're going
through a terrible shock right now but I can assure you that it does
get better.
The first thing you need to know is that CML is no longer the death
sentence it once was. We have many new drugs to try and many more on
the way. There is nothing but hope when it comes to CML and there's
every reason in the world to believe that Natacha will be fine and
live a long life to raise her son.
Please consider your doctor's advice to try an antidepressant.
You're right that it won't make you forget about your daughter's
illness but it can help you to cope a bit better with it. Many of
our members take antidepressants and find them helpful. It can only
help right?
As you learn more about CML, you'll see that it's not the worst thing
in the world. Right now you need to give yourself some time to
grieve your mother's death and realize that you and your daughter
will be ok.
We have members here who have been around for many years and when
they were first diagnosed, they didn't have any of the great new
drugs that we have now. We even have one member who's had CML for
close to 30 years and is still doing well!
Don't hesitate to ask any questions you may have. We are here to
help you.
Take care,
Tracey
diagnosed with CML in Jan 2002

im the mother of a 18 year old daughter, that have leukemia, and i just lost
my mother last month,, i took care of my mother for years and years, she had
cancer of the stomack , diabetique and then cangreen and then dialisiss, ect
ect,, it never ended for her,, and 4 days after her death, i found out that
my daughter have leukemia, im having a very hard time dealing with all this,
Natasha have a little boy,, he is only one year old, I cant take her behing
sick and suffering true this, doctor taking bone marrow,, ect,, dam, i feel
so hopeless,, im a mother hen, i protect my kids like no tomorow, i love
them so much, i give them every thing, but i cant change this and i feel so
bad , so hopeless,,
im sorry if i do lots of mistake writing in anglish,, but i do have a good
excuse,, im french and to top it all off, im blond,, lol,, see i can still
laugh a bit,
Doctor is trying to put me on depression pills and relaxe pills, but i do
not take any pills,, i dont believe that a pill will make me forget all this
and starte a new life,, i have to deal with this, im having a hard time ,
but i will make it , im sure, im crying for a reason,, i lost my mom, and
now my daughter have leukemia, im not crying for nothing, i have a reason,
it doesent meen im on a depression right?

When I first started AMN107, within less than two
weeks I could not go at all, I was on 800 and it got
so bad I ended up in the hospital for about a week
until they got it fix. They cut me back to 400 a day.
there is a high presentage of constipation with AMN107
I have the list of side effects. If you did not get a
copy from your trial people I could post the side
effects here if you like? I gave Zavie a copy
also.
SkipD

SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

Terry,
I have recommended this in the past but no one has ever mentioned if they
tried it.
Chamomile tea!
I had problems with loose stool at first but I was kind of grateful because
I use to be someone that would go once a week or so. I remember this all my
life and it really was something I hated.
One day a friend introduced Gleevec to me and this was after CML treatment
with loose stool issues.
She said that It had a calming affect which was why I wanted to try it as my
anxiety is so bad and I don't want to take anything more than I already do.
The taste was great and it did feel very calming so I started drinking about
3 cups a day at work.
A few weeks go by and I realize I can't go to the bathroom.
I researched the tea because it was the only thing I was doing differently
then and found out that the Chinese use Chamomile tea to stop diarrhea.
Obviously it works! I drank so much that it really had me bound up.
I don't know if it will work the same for you but you know nothing beats a
failure but a try.
It may take a few days but again you'll never know if you don't try and its
natural and not medication.
Just a thought!
Best wishes to your new regime!
Lisa Martinez

Hi Group,
I know this sounds like a silly question but has anyone on Sprycel had
trouble with the sensations of hands and feet falling asleep. It is
mostly at night and does go away with movement. I see Dr. next week but
this is weird feeling.
Carolyn

Carolyn, I am not on Sprycel, but I am on gleevec and I have been
experiencing the exact same thing for about the past 4 months. It's
very annoying, but like you stated, it does go away with movement.
Kris

Hi Stef,
Magnesium can be great for reducing muscle cramps and it can also
help with the mental "fog" that some of us have. Magnesium can also