CML

Hey Newbies. . . FYI: as 'queen of the side effects', always remember that each
of us is an individual and therefore what works for one may make another ill.
One thing that I think we can ALL agree on is the right time to ingest our gold
is with your Largest meal of the day. It doesn't matter if the time varies daily
because our gold will not be out of your system within 24 hours. I tried
breakfast, lunch, dinner. and late night snack and found that in the middle of
the largest meal of the day was the best time for me. There are those who feel
that a late-night snack of 1/2 sandwich and milk or water just prior to retiring
is a great time. If you are one who can't go to sleep when your tummy's not
satisfied. . .this would be excellent for you. Those who eat meats, eggs, juice
and coffee at breakfast (which is the most important meal of the day) will agree
that this is the best time. Those of us like me "eats to live" and only has 1-2
meals a day will use the largest meal
daily and ingest our gold halfway through the meal to avoid tummy upset.
I am very happy to read the posts that the Newbies are 'not' having numerous
side effects; because the least you have to deal with after diagnosis, the
better. You are under enough stress acknowledging the bug without having to deal
with side effects. So, RELAX . . .let your body adjust to the gold and ENJOY. .
. your new life as a SURVIVOR!
All are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Hi Cam,
My husband was also diagnosed with 3 chromosomes. He has chromos - 1,
9 & 22 involved with a deletion (whatever that means) We were also
told it means a poorer prognosis and poorer response to treatment. I
know nothing of what this means nor did his hematologist give much
insight except to say its very rare. I appreciate hearing of someone
else who has the unfortunate results as such - but would love to hear
of anything you find or hear of. We are seeking a second opinion right
now. My husband went from not having or feeling any symptoms to 1
month later feeling very bad. He now feels faint after exercise and is
sleeping an awful lot. He begins Gleevec today - we will see with his
bloodwork in the next 2 weeks- how things are going.
Please let me know if you learn more.
Shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley

How do you sign on for the chat on Tuesday at 9:00 pm?
With warm regards,
Matt Maynor
Jacksonville, FL
Gleevec Since May 2005
mtmaynor@...

Hi everyone,
When I was first diagnosed they told me I had the philidelpia chromosome as well
as an
abnormality on an additional chromosome--I think it was 3. I have read on some
of the
posts that if 3 chromosomes are affected the prognosis is poorer. What does this
mean
exactly? Will the gleevec not work as well for me? I would really appreciate
hearing form
anyone who knows about this kind of stuff.
Thanks so much
Cam

Best wishes, Ms Muse. You will stay in my heart.
Margaret
muse_dwr <muse_dwr@...
Good morning Folk,
I want to say goodbye and thank you for all of your help to me. You know I had
not been finally diagnosed. The technician who did my bone marrow and bone
biopsy told me that it was CML.
However, I kept my appointment with my doctor, at the Uof C in Chicago and my so
far diagnosis is leukocytosis/polycythemia. My white and red blood cells are
multiplying too much and she will be watching them and took more blood. She also
said that she was sorry that that happened.
Anyway, since I don't have CML at all, I will be leaving the group. I do wish
each of you well. You have been so nice and helpful to me. Thank you, thank you,
thank you and God bless.
Muse
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Margaret Raymond,
mpraymond@...
margaret-raymond@...

Good morning Folk,
I want to say goodbye and thank you for all of your help to me. You know I had
not been finally diagnosed. The technician who did my bone marrow and bone
biopsy told me that it was CML.
However, I kept my appointment with my doctor, at the Uof C in Chicago and my so
far diagnosis is leukocytosis/polycythemia. My white and red blood cells are
multiplying too much and she will be watching them and took more blood. She
also said that she was sorry that that happened.
Anyway, since I don't have CML at all, I will be leaving the group. I do wish
each of you well. You have been so nice and helpful to me. Thank you, thank
you, thank you and God bless.
Muse
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Yusef,
Most of us have blood work once a month. Your WBC will vary each time. As
long as it doesn't go above 10,000 you should be fine. Mine varies from 4.2 to
6.9. I have been PCRU for about 5 years now.
Shelley

Thanks so much Zavie!
My husband has a fantastic GP - and now has a new Hematologist who is
dealing with the CML care though we do not feel she has enough
experience to do his care.
She has only had 3 CML patients and none with 3 chromosomes involved
or a deletion ( to be frank I do not know what this means but from
what we were told it just means a poorer prognosis and the disease
could get worse faster) We live in Vancouver, BC Canada. We have an
excellent Cancer Care Clinic but we were referred to this
hematologist. Can we ask our GP for a new referral and how does this
work? Thank you so much for all the help...I really appreciate the
encouragement and help...it is invaluable. I picked up his Gleevec
from pharmacy hospital today- weird but it was sad..I guess life won't
be the same was all I was thinking. People here may understand
this...thanks a lot!
Shalyn

Hello, Yusuf. I typically take my Gleevec around the same time
every day -- after my evening meal. Sometimes, if I have a big
lunch and I don't anticipate having a large dinner, I will take it
after lunch. (If I've had a large lunch, I don't like feeling
obligated to also have a big dinner.) For me, I have to take my
Gleevec after a good-size meal, along with an anti-nausea
medication.) My doctor has never addressed whether it's necessary
to take it the same time each day. Hope this helps. Warmest
regards. David (Dov)

And a problem i have,
My doctor wants blood test from me once in two months. But i want to make it
every week or mostly in about 15 days, i cant wait. I wanna see that everything
is ok. If i see that (for example) my WBC is getting higher than it was at the
previous test, it makes me panic and a few days later i make a new test to see
if it is still getting higher or not.
Do you think i have a psychological problem? How often should a patient who is
in remission make blood counts test?

Yusuf:
I am not sure the time of the day matters that much. I am of the philosophy
that it is more important to take it after a meal (full stomach), with a
full glass of water and at a time where you will be upright for the next
several
hours.
That is why I take mine after breakfast and at a time where I will be the
most active. The worst for me was taking it right before bedtime where I would
be laying down after I took the medicine, although I have read where other
people prefer it that way.
Ultimately, you will have to try the things that make it easier for you to
manage your side effects. How long have you been taking Gleevec?
Matt
In a message dated 10/30/2006 12:34:01 P.M. Eastern Standard Time,
ÿffffe7ipecipeyusuf@... writes:
Do you take gleevec at the same time everyday? Is it important to take it
always at the same hour? I'm trying to take it at the same hour everyday but my
doctor did not make me a warning about it.
Yusuf Cipe
Dx march 2006
400 mg gl.
Istanbul

Do you take gleevec at the same time everyday? Is it important to take it always
at the same hour? I'm trying to take it at the same hour everyday but my doctor
did not make me a warning about it.
Yusuf Cipe
Dx march 2006
400 mg gl.
Istanbul

Hang in there Margaret,
Gleevec side effects usually manifest themselves very early in the
treatment and then tend to go away. Give yourself a month on Gleevec and
then evaluate.
Keep your doctor informed of the side effects.
Go very easy on the Tylenol.
What was the reason for starting at the 600 mg dose rather than the
standard 400 mg dose?
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, 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
PCRU 5/02 at RVH
2.8 log reduction Sep/05
3.0 log reduction Jan/06
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi All,
I'm on my 4th day of Gleevec (600 mg) also taking Alloporinol (300mg) adn
Hydroxyurea (550mg).
I am feeling worse: I have bone/joint pain, dizzy, weak, shortness of breath,
slight fever, sinus drainage, and diarrrea.
Is it the CML or the Gleevec?
I'm taking tylenol for the pain and sometimes Darvocett once a day.
I hate to ask but is this what life is going to be like with CML and Gleevec?
Will some of these symptoms go away when my wbc is normal?
Thanks,
Margaret
Margaret Raymond,
mpraymond@...
margaret-raymond@...
Margaret Raymond,
mpraymond@...
margaret-raymond@...
Margaret Raymond,
mpraymond@...
margaret-raymond@...

Dear Charlotte,
I'm sure someone from the chat group will contract you. I'm a newbee and have
just been diagnosed with CML only 4th day on gleevec so I can't tell you much.
Hopefully you and your dad can find others here to help you through these
difficult times.
Margaret
charlotte kerwin <charcur12@...
Hello
I have never been a member to any type of chat before, however I feel the need
to talk with other people dealing with CML. I am not a person who has this
disease myself, but my loving step-father of 17 years has been diagnosed. He was
diagnosed with this disease 3 years ago and I supose for the most part, I spend
my days ignoring it and pretending it isn't happening. When first diagnosed, no
one in his family could be a possible donor, and with other health problems
inclkuding severe arthritis and ankylosing spondylitis ( arthritis and curvature
of the spine.) his chances of survival duing a bone marrow transplant would only
be 50%. So it was an option he had chosen not to take..Instead he went on
Interferion which did not work for him, so he switched to Gleevec. Which has
been working, but it is so costly and is fearing that it could stop working for
him within the next year..I am 21 years old and care about my father greatly.. I
have a wonderful boyfriend, however he
does not understand what I am going through, and lately I have been facing the
fact my father might not be around to see my graduate university or walk me down
the isle to get married. I am getting very stressed out and thinking of it
often, and he just does not understand. He figures I can't change anything so
when it happens, "it" happens..I am so close to my father, and he is such a good
person, working 6 days a week with this disease and his other diseases and never
complains a day in his lilfe..Eevn though you can tell he is constant pain. It
hurts me to see the father I love so dear getting more feeble each time I see
him..And no one seems to want to talk about it and no one understand why I get
so upset, when it's going to happen anyway. So I wanted to talk to other people
with the disease and who are dealing with loved ones having it for maybe some
advice.
thank you so much.
charla.

Hello
I have never been a member to any type of chat before, however I feel the need
to talk with other people dealing with CML. I am not a person who has this
disease myself, but my loving step-father of 17 years has been diagnosed. He was
diagnosed with this disease 3 years ago and I supose for the most part, I spend
my days ignoring it and pretending it isn't happening. When first diagnosed, no
one in his family could be a possible donor, and with other health problems
inclkuding severe arthritis and ankylosing spondylitis ( arthritis and curvature
of the spine.) his chances of survival duing a bone marrow transplant would only
be 50%. So it was an option he had chosen not to take..Instead he went on
Interferion which did not work for him, so he switched to Gleevec. Which has
been working, but it is so costly and is fearing that it could stop working for
him within the next year..I am 21 years old and care about my father greatly.. I
have a wonderful boyfriend, however he
does not understand what I am going through, and lately I have been facing the
fact my father might not be around to see my graduate university or walk me down
the isle to get married. I am getting very stressed out and thinking of it
often, and he just does not understand. He figures I can't change anything so
when it happens, "it" happens..I am so close to my father, and he is such a good
person, working 6 days a week with this disease and his other diseases and never
complains a day in his lilfe..Eevn though you can tell he is constant pain. It
hurts me to see the father I love so dear getting more feeble each time I see
him..And no one seems to want to talk about it and no one understand why I get
so upset, when it's going to happen anyway. So I wanted to talk to other people
with the disease and who are dealing with loved ones having it for maybe some
advice.
thank you so much.
charla.

Therese,
Just make sure to insist that they medicate you before getting the BMB. I
was given adivan,demoral, and finnigin.(I know I mispelled these..hehe) as
well as the standard local. BMB's are not fun but if they medicate you right
you will be fine. Take Care,
Terry

Hey Group: (FYI)
The FLU Shot is a 'must have' for each and every one of us Survivors. Due to
my health issues, I've had to have them each year for many years. One year I
forgot and had to be hospitalized, I thought I was gonna die from the side
effects. The shot will not give you the flu because the virus is dead. Our
immune systems are compromised with our bug and whether pro or con this shot. .
. PLEASE get it, believe me it is a 'necessity' for you! I also make sure I take
the Pneumonia shot when I need it, though Doctors aren't on the same page as to
3,5,7,10 year intervals (hehehehehe).
"K"
"I AIN'T FINISHED YET"!!!

I have safely arrived back home in Indiana. One thing I wanted to let
everyone know is that while I was still in Ohio Regina got into my email, I
have since changed my password so she cannot access it anymore. I do not
want to bad mouth her but that upset me big time. Anyway, I am safe at home
and am going to lay down. I might be online later tonight if anyone wants to
chat. It has been a very draining 7 days. Regina and I broke up 7 days ago
but we were forced to be in the same apartment for those 7 days until I got
my check. Now that chapter of my life is over. It was not all bad, but it
was a struggle. I guess now a new chapter begins. The sad thing is I am not
sure I am looking forward to it the way my luck has been going. Take Care
all,
Terry
--
"There is nothing ever wrong..but
nothing's ever right..such a cruel contradiction".

Therese,
I just had a bone marrow and bone biopsy and am through it. God will take you
through it too.
I'm waiting on my results now.
God bless you and I'm praying for you.
love Muse
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

I'm been reading a lot and it seems like quite a few people are diagnosed with
just blood test and not bone marrow or bone biopsy. Is that true?
Muse
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Safe travels, Terry. David (Dov)

Hi Pam,
PCRU stands for PCR Undetectable meaning that when they do the PCR
test, they find no bcr/abl transcripts. A good PCR test will look at
least 100,000 cells so if you're zero on that test, you're doing very
well indeed, it would be a complete molecular response.
Doctors don't typically use the word "remission" because it's
misleading. In other cancers, the term remission infers that the
cancer is gone and is no longer active whereas with us, we know that
the cancer is still there, it's just at a very low level and is being
kept under control with Gleevec. With CML, doctors usually use the
word "response" meaning the patient has had a response.
There are also different levels of responses. Firstly we have a
hematological response meaning that our blood counts have returned to
normal. Next is the cytogenetic response which means that our bone
marrow appears normal with normal chromosomes and finally there's a
molecular response which is what the PCR measures.
A FISH test only looks at about 200 cells so although it can give you
some idea of what your status is, the PCR test is really what you want
to have to track your molecular response. Most of us never reach a
zero on a PCR test, the best we can hope for is a 3 log reduction
which would qualify as a "major molecular response".
I hope that helps,
Tracey
dx Jan 2002

Hi al,
I am getting ready to head back to Indiana so I should be home in a few
hours. I will try and get on and let you know when the eagle has landed when
I get there, or at least in the morning. Take care,
Terry
--
"There is nothing ever wrong..but
nothing's ever right..such a cruel contradiction".

Hi Barbara,
Most oncologists and cml specialists recommend that you get a flu shot. The
shot is made up of dead virus, so it cannot make you sick.
Nancy C.

Hi, Barbara. I got a flu shot last year without adverse effects. I
never asked my oncologist. I had planned to get one this year, too -
- maybe I'll run it by him this time. Warmest regards. David (Dov)

Welcome to the board, Matt. I'm pretty new around here, too. Wow,
I admire your level of activity despite your side effects. I was
diagnosed in May 2005. I was able to continue working until this
past April, when my side effects put me out on disability. I'm also
a father, of two beautiful daughters. I have mixed feelings about
not working now, but I have to say I'm enjoying being a stay-at-home
Dad. I had the kind of job (along with 3.5 hours of commuting each
day) that prevented me from seeing a whole lot of my family, so it's
a blessing to be able to see my kids so much now. I've spoken a
little with my doctor about experimenting with Sprycel, but I'm not
pushing it right now and he isn't either. I reached PCRU this past
summer and, while it's been pointed out to me that Sprycel shouldn't
adversely affect my status, I'm still a little nervous about
changing what I've been doing. I'm also curious to hear from folks
who've changed to Sprycel for reasons other than sub-optimal
response from Gleevec. Best of luck to you. Warmest regards.
David (Dov)

I will chime in also. Flu Shots are a HAVE TOO at my house. I have
had one every year since my 1992 By-Pass surgery. I have yet to have
any reaction to the shot. The Red Cross Nurse that gives the shots at
my church has me on her "must check with list" and when there is a
shortage in vaccine calls me to get mine early. My Wife also has
medical problems and is a child care provider and she is treated the
same way. Please don't lower your immunity and energy levels by
exposing yourself to so preventable.
Richard H.

Hi,
Like the others on the list I have had a flu shot throughout my bout
with CML without any ill effects.
Zavie

I am new to this message board, however I am not completely new to
CML nor Gleevec. I was diagnosed in January of 2005, about two weeks
before our third child was born. I showed no symptoms at the time
and it was discovered with a routine CBC for a physical.
After a visit with several oncologists, I found one with experience
with CML and I begain a dose of 600 mg of Gleevec daily. I then went
for further testing at MD Anderson in Houston (Giles) and now return
their annually, although they prefer you to go every six months or
so. After my visit to MD Anderson, we increased the dosage to 800 mg
until my one year anniversary and have lowered to dosage to 400 mg
after that point. My last PCR showed .05%, down from the 99.1% that
I had originally at diagnosis.
I work full time, am a father to three wonderful children and am
active in the community. I even coach a few sports teams (football,
basketballa and baseball)although my energy is nowhere where it used
to be.
However, I, like many of you, experience a myriad of side effects
with Gleevec and am starting to research a request to change to
Sprycel. If you had trouble with Gleevec and switched to Sprycel, I
would like to hear from you. How has the transition been? How have
the side effects been in comparison?
Also, if you would like to email any specific data on things I have
done to cope with the side effects of Gleevec, I would be glad to
hear from you and will respond accordingly.
With warm regards,
Matt

It's absolutely not true that the flu shot is contraindicated in people with
CML! In fact, you *should* get it. The flu shot is NOT a live vaccine so it
cannot give you the flu or make you sick. Whoever tells you that you
shouldn't get it because of possible immunosuppression is wrong, and you
should get it because with a compromised immune system you are more likely
to get the flu and develop serious complications from it. And if you get the
flu, you also risk infecting people around you. Thousands of people die from
the flu every year, and these are often people who have chronic health
conditions. People with CML should also talk to their providers about
getting a pneumonia vaccine. It's so frustrating to see the myths
surrounding the flu vaccine continue to linger on; I certainly hope that
people here don't fall for these myths.
Here are the people who SHOULD get vaccinated each year; as you can see,
this list includes people with CML:
People at high risk for complications from the flu, including:
8 Children aged 6 months until their 5th birthday
* Pregnant women
* People 50 years of age and older
* People of any age with certain chronic medical conditions
* People who live in nursing homes and other long term care facilities.
People who live with or care for those at high risk for complications from
flu, including:
* Household contacts of persons at high risk for complications from the flu
(see above)
* Household contacts and out of home caregivers of children less than 6
months of age (these children are too young to be vaccinated)
* Healthcare workers.
Here is a list of the people who shouldn't be vaccinated without talking to
their doctor first:
* People who have a severe allergy to chicken eggs.
* People who have had a severe reaction to an influenza vaccination in the
past.
* People who developed Guillain-Barré syndrome (GBS) within 6 weeks of
getting an influenza vaccine previously.
* Influenza vaccine is not approved for use in children less than 6 months
of age.
* People who have a moderate or severe illness with a fever should wait to
get vaccinated until their symptoms lessen.
This information is from the CDC.
~ Jennifer G.
www.upstairswindow.org
www.cmlsupport.com

I have had a flu shot ever since my diagnosis 7 years ago, and have never gotten
sick from it. I have also never had the flu.
Shelley

Barbara:
I have been told both ways with the flu shot. I did not get one last year, my
current ONC said it was not a good idea for the reason you stated. Anyone else
got the word on this?
T Stone
barbara <barb521@...
I was dx in Jun 06 and my BMB showed an additional mutation between
Chromosome #22 & #1. My hem/onc sent me to Emory Cancer center for a 2nd
opinion and was also told they would just watch as it "may or may not"
affect me. My WBC returned to normal ranges within 3 weeks after starting
Gleevec. I found taking my pill in the middle of a large breakfast with a
large glass of water cuts down on side effects. The first 3 weeks, I had
slight nausea and joint pain, but now no nausea and some pain only in the
evening if I've been extremely active. A couple of Advil seems to help with
the join pain. I just had another visit and all are still in normal range
except potassium down a little.
For those just newly diagnosed, read all you can on the internet, get a copy
of your blood test and keep a record, ask your doctor as many questions as
you can. So few Onco are familiar with CML, so you really want to learn all
you can.
A question for the group. My dr recommended I take the flu shot, which I
have never had, nor have I had the flu. Since our immune system is down,
does the flu shot make you sick? I'll really a little scared to take one.
Thanks
Barbara from Atlanta
Dx 6-18-06
_____

1. Your name Andrea Leal
2. Your e-mail address: Andrea@...
3. Your hometown: San Jose, California.
4. The date you were diagnosed: Nov. 25, 2003
5. The date you started Gleevec: Nov. 26, 2003
6. The date you reached Zero (CCR): February 2004
7. The date you reached PCRU. January 2005
8. Age at diagnosis:22
9. Your Doctor's name: Dr Malone
10. Where you receive treatment: Stanford Medical Center
11. Clinical Trial:
12: Zero Club number:
13. A brief history/bio of yourself and CML:
I was Diagnosed in November 2003, after doing some blood work for
not feeling good and having a hard time breathing. Was hospitalized
with WBC 343,000. I was on 600mg Hydroxurea and 800 Gleevec while
in Hospital. I was released 9 days later after WBC dropped to
181,000 dropped the Hydroxyurea and lowered Gleevec to 600mg. After
February 2004 Gleevec came down to 400mg and have been on that dose
ever since.

I was dx in Jun 06 and my BMB showed an additional mutation between
Chromosome #22 & #1. My hem/onc sent me to Emory Cancer center for a 2nd
opinion and was also told they would just watch as it "may or may not"
affect me. My WBC returned to normal ranges within 3 weeks after starting
Gleevec. I found taking my pill in the middle of a large breakfast with a
large glass of water cuts down on side effects. The first 3 weeks, I had
slight nausea and joint pain, but now no nausea and some pain only in the
evening if I've been extremely active. A couple of Advil seems to help with
the join pain. I just had another visit and all are still in normal range
except potassium down a little.
For those just newly diagnosed, read all you can on the internet, get a copy
of your blood test and keep a record, ask your doctor as many questions as
you can. So few Onco are familiar with CML, so you really want to learn all
you can.
A question for the group. My dr recommended I take the flu shot, which I
have never had, nor have I had the flu. Since our immune system is down,
does the flu shot make you sick? I'll really a little scared to take one.
Thanks
Barbara from Atlanta
Dx 6-18-06
_____

I thought this was quite interesting. Unless I'm misunderstanding
this graph, it appears that there's a higher incidence of CML among
black men and women than there is among whites.
Then when you look at the expanded graphs, it shows that American
Indians (I assume this means Natives), Hispanics, and Asians have a
much higher incidence than even Black Americans. The jump in
incidence rates for Asians, Hispanics and Natives, seems to only be in
the last couple of years though which I find peculiar.
http://seer.cancer.gov/faststats/sites.php?
stat=Incidence&site=Chronic+Myeloid+Leukemia&x=19&y=16#trend

That's funny: I read just the opposite! Maybe I don;t get the charts...
_____
From: Tracey [mailto:traceyincanada@...]
Sent: Thursday, October 26, 2006 2:53 PM

Hey NEWBIES. . .1st of all, I want to WELCOME you to the Group that no one wants
to be a member; but glad that you found us early in your survival. Don't
hesitate to post any and all questions and/or concerns to the group. Your
brother & sister survivors have been there/done that and are here for you.
At diagnosis 11/2003, I was 800,000+ per Million, with 15 other
fatal/terminal/chronic diseases. . .all of which I call Chronic Illnesses. My
Oncologist gave me a referral to the Cancer Center in my area and 2 months
mortality. During my consultation, 12/18/2003 the Specialist at the UMCCC gave
me the stats on BMTs at 30%+ die in first 3 months and over 50% die in first
year. Due to my other health issues, I was not a candidate, thought I wouldn't
go that route if I were with the stats available today; and I was given 2-5
months morbid mortality. "Man points. . .GOD Appoints"! ! !
I came home, had a 2 1/2 week pity party and then I armed myself to fight the
battle of my life. . .for my life. I went through H**L as my body adjusted to
the Gold~Gleevec
I reached "0/Negative" on the FISH Test and became #811 on Zavie's list in
January 2005. On September 1, 2006; I received the results of my 2nd RT-PCR Test
0.00136,(1st~12/2005--I've come a 'long way' from diagnosis).
I guess the best advice I can give to a Newbie is. . .RELAX--let your body
adjust to our Gold & ENJOY--your new Life as a Survivor. If something doesn't
seem right. . .it isn't. Run, do not walk, RUN to your nearest ER, PCP or
medical facility. I had chest pains--ER--2 heart attacks--2 Stents implanted. I
shudder when I think of the 5xs that I took Maalox and laid down.
Dr. Drucker~Father of Gleevec stated at the ASH Conference in December that
our bug is truly a Chronic disease, much like Diabetes, with a newly diagnosed
person having a 25-year mortality; with only 51 months of scientific
documentation available. We now have the AMS & BMS medications, the Vaccine,
and 18 other medications on the horizon. Not to mention the BMT, which I don't
consider a 'cure' because GVHD is a Killer; it is my opinion that the cure's in
the SCT. (my 2 cents). Dr. Talpaz~Father of CML is at UM doing SC research.
As I begin celebrating the 4th year of my new life as a Survivor, I truly know
that 'every day is a Gift from GOD'!
I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! !
Take care. . . I have added you to my prayers.
*Note: I was able to email each Newbie years ago, now I post to the Group. I
pray its not that more of us are being diagnosed. . .that more of us are finding
the group. Has anyone seen any statistics on this, I was told my an Oncologist
in '04 that there were approximately 4,000 Survivors worldwide. (?)
"K"
"K"
"I AIN'T FINISHED YET"!!!

Hey NEWBIES. . .1st of all, I want to WELCOME you to the Group that no one wants
to be a member; but glad that you found us early in your survival. Don't
hesitate to post any and all questions and/or concerns to the group. Your
brother & sister survivors have been there/done that and are here for you.
At diagnosis 11/2003, I was 800,000+ per Million, with 15 other
fatal/terminal/chronic diseases. . .all of which I call Chronic Illnesses. My
Oncologist gave me a referral to the Cancer Center in my area and 2 months
mortality. During my consultation, 12/18/2003 the Specialist at the UMCCC gave
me the stats on BMTs at 30%+ die in first 3 months and over 50% die in first
year. Due to my other health issues, I was not a candidate, thought I wouldn't
go that route if I were with the stats available today; and I was given 2-5
months morbid mortality. "Man points. . .GOD Appoints"! ! !
I came home, had a 2 1/2 week pity party and then I armed myself to fight the
battle of my life. . .for my life. I went through H**L as my body adjusted to
the Gold~Gleevec
I reached "0/Negative" on the FISH Test and became #811 on Zavie's list in
January 2005. On September 1, 2006; I received the results of my 2nd RT-PCR Test
0.00136,(1st~12/2005--I've come a 'long way' from diagnosis).
I guess the best advice I can give to a Newbie is. . .RELAX--let your body
adjust to our Gold & ENJOY--your new Life as a Survivor. If something doesn't
seem right. . .it isn't. Run, do not walk, RUN to your nearest ER, PCP or
medical facility. I had chest pains--ER--2 heart attacks--2 Stents implanted. I
shudder when I think of the 5xs that I took Maalox and laid down.
Dr. Drucker~Father of Gleevec stated at the ASH Conference in December that
our bug is truly a Chronic disease, much like Diabetes, with a newly diagnosed
person having a 25-year mortality; with only 51 months of scientific
documentation available. We now have the AMS & BMS medications, the Vaccine,
and 18 other medications on the horizon. Not to mention the BMT, which I don't
consider a 'cure' because GVHD is a Killer; it is my opinion that the cure's in
the SCT. (my 2 cents). Dr. Talpaz~Father of CML is at UM doing SC research.
As I begin celebrating the 4th year of my new life as a Survivor, I truly know
that 'every day is a Gift from GOD'!
I AM A SURVIVOR. . .I AIN'T FINISHED YET ! ! !
Take care. . . I have added you to my prayers.
*Note: I was able to email each Newbie years ago, now I post to the Group. I
pray its not that more of us are being diagnosed. . .that more of us are finding
the group. Has anyone seen any statistics on this, I was told my an Oncologist
in '04 that there were approximately 4,000 Survivors worldwide. (?)
"K"
"I AIN'T FINISHED YET"!!!

Hi Cathy,
I did have it on line, but had to remove it because of problems. I will
put a list in the files section with minimum data e. g. name and Zero
Club number.
Zavie

Hey Jackie. . . haven't seen your posts, glad you are A-OK. . .FANTASTIC ! ! !
& the girls & your 'handsome' better half ! ! !
To: Andrea and Natalie. . .WELCOME. . .CONGRATS. . .RAH*RAH*RAH*! ! !
Group. . .all are in my prayers as always. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Dear Zavie,
I gather from your occasional "Zero Club" postings that you maintain
a running list of PCRU CML'ers. (It took me a while to figure this
out. I'm not too swift sometimes.) Anyway, I wanted to let you
know that I reached 0.000 per PCR this past summer, about 15 months
after diagnosis.
If I've misunderstood the nature of the list, just ignore me.
Warmest regards.
David (Dov)

HI Shalyn,
Your husbands WBC was most likely 100,000, because I was told by my doc that
10,000 is still in the safe range. I can tell you that Gleevec knocked my
counts down in only a month, so once he starts on that it should kick the
snot out of that pesky WBC..hehe.
It was funny you mention how your husband was joking about being a super
hero because of his mutation, I was joking with someone in the group that It
is a shame I couldn't get some sort of special power with my mutation. I had
been going through some crap with various companies over the phone, and
wished I had the power to send electical current through phone lines..hehe
I take my Gleevec at night before I go to sleep to help with nausea, just
make sure he takes it on a full stomach, and drinks plenty of water. Don't
worry to much just yet about side effects. There are many who have very
little or hardly none at all. Take care,
Terry

Hi Yusuf,
I am not totally sure, but it sounds like to me you are in remission. The
thing is, if I am correct there are I believe three stages of remission. I
am sure someone else in the group can give you better information, but
congrats on getting were you are with those counts now. Take Care,
Terry

Hey, Terry. I'm glad you gave us that update. I was wondering how
you were doing, but didn't want to pry and force you to dwell on
negative stuff. As for you and Regina, I just want to say that you
are, as they say in Yiddish, a "mensch" -- a very decent guy -- to
want to protect Regina against negative impressions right in the
midst of your own troubles. I'm also glad to hear that the
insurance company is not giving you a hard time -- it didn't make
sense to me that they would, but it must be a relief to have that
confirmed by them. Best of luck with your move to Indiana. Let us
know when the eagle has landed. Warmest regards. David (Dov)

Hello all,
I took my test results. BMB is 0/20. Fish test is 0/400. And my PCR is 0.0007.
I'm very happy for the things getting better.
And a question, should i have to be PCRU to say that im totaly in remission Or
can i say that i'm in remission now?
I'm praying for all of you every day, and i believe everything will be ok...
Best,
Yusuf Cipe
Dx March/2006
400 mg Gleevec
Istanbul

Hi Shalyn,
There are others who have different chromosome variations, instead of the
more typical translocation of 9 and 22. If his oncologist is not actually a
cml specialist, you could consider getting a 2nd opinion from a specialist.
Tell us where you live and we can mention some of the major cml centers.
Or, you doctor could consult for you with a cml specialist, like Dr. Druker
at OHSU. Only when someone has seen hundreds, thousands of cml patient, do
they know the significant of some of the variations...but with today's
treatment, it may be none.
My first elevated blood test was 21,000 and a month later it was 93,000
(without treatment).
And one last point, if you husband has siblings, he might want to have them
tested just to know ahead of any need if he will have a related donor for a
bone marrow transplant....this is pretty standard and easy to do. There is
usually a blood collection kit that he could send to his siblings and they
return the blood to the testing center (this is just blood out of the arm).
Nancy C.

Hi everyone!
I posted awhile back about my husband finding out he may have
CML....Well results are in and he does. No real surprise - but here is
what I know nothing about or haven't heard anyone in this instance-
The hematologist said my husband has the PH chrom. but that it is a
mutation of 3 chrom. rather than just 2...She said its a bit more
complicated and poorer prognosis but she said she will be on top of
things. As well- without treatment in chronic phase - how fast do you
WBC go up? His bloodtests showed they went up 10000 or maybe its 100
000 in 30 days. Anyone?? My husband is bad and funny....(depends how
you look at it) He says he is even a weirdo amoung other CML patients
and maybe it means he really is a super hero with an unknown ability
to fly or make things move...I think maybe the ability to feed the
children chocolate for dinner is more his superpower!
I would really appreciate any feedback - there seems to be so much
more info here than anywhere else- He begins gleevec tomorrow - so we
are praying the side effects are not too bad. Thanks so much!
Shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley

Just wonder where we can all peruse the "List". Is it posted
somewhere? I'd like to see those that are before and after my
induction in Oct 03.
Best Regards,
Cathy
PCRU
Zavie# 838

Terry,
I'm glad for you. Sounds like to me God is doing good things in your life. :)
(I sure do wish the group was set up for stationery)
love you,
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Hi all,
I just wanted to give everyone an update on some things since my last post
about how my situation has changed. First off, Regina is being great and
being very nice, so if I gave the impression she was mental, she is not, and
in fact has been making things allot easier on us both. Our breakup was not
only her fault, we in fact were both at fault. I may have made mention of
her having anger issues, well to be fair I think we all have some sort of
anger issues at times. In all breakups there are hard feelings, but overall
she is handling things very well.
I also had mentioned that the private insurance company that pays my
disability had called and were changing the definition of my disability from
not being able to perform my former job as a credit card fraud investigator
to being able to perform any reasonable job. Well I received good news last
night. I received a call from the representative and I have been *approved *to
continue drawing my benefits for the agreed upon term up to 2031. So that
was a major relief for me, and did take allot of worry and pressure off of
me. I have to say I was expecting them to give me more of a hassle, but to
their credit they didn't. Now if only I can get the Social Security
Administration to do the same..hehe. If I am approved for that I will
basically get the same amount as I have been, it just will mean I will get
two checks a month instead of one. One coming from SSD, the other from my
private insurance company to make up the difference to the set amount that
they were suppose to pay me. *major sigh of relief*
I am not waiting for my check to come and once some loose ends are tied up
here, then I will be going back to Indiana for good. Take care all and
thanks again for listening,
Terry
--
"There is nothing ever wrong..but
nothing's ever right..such a cruel contradiction".

Natalie,
If you need to vent this is the place to do it. We are all in the same boat
here and something I learned about 20 years ago is: 'A burden shared is
only half of a burden, a positive shared is twice as good'. I understand about
your need to be strong but more often than not we become bound by that need.
This turns to stress and so on and so on....let it all out here for we all
have the same feelings at times. It is OK!!!!!!!!!
Pat

Natalie
Dont ignore your symptoms, I belive thats the worse thing you can
do. I was 22 years old when I got DX with CML in Nov of 2003. For
me the first year was the worse I even went in to the ememergancy
room a few times for pain. I still get a little tired and some
nausea after taking the meds. I do think i am tired because I am
trying to hold up working full time and I jusy recently got married
in July and we are finally moving into our home, but I never ignore
when I am feeling down. I hope this helps
Andrea
400mg
DX 2003

I am 23yrs old, dx with CML April 2006 just a few days after my
son's first birthday. I have had to deal with a lot of medical
issues since he was born. I got DVTs in both legs while I was
pregnant, but they weren't discovered untill I was in lobor. I had
to take blood thiners and was on pain killers for a little over six
months. I'm free of blood clots (for now...)and I was able to enjoy
Thanksgiving and Christmas that year drug free! But now I am trying
to deal with CML. I feel tired all of the time! I think it's a
little from the Gleevec(400mg)I take and a little from the
depression I feel. Well I'm not sure if it's depression as much as
it's frustration. I think I have bad blood or something. I want to
beat this, but I am afraid that something else life threatening will
happen to me! I just want to focus on my son. I lost most of his
first year because I was over medicated, and so I have been lying to
my family and doctor about my pain as to avoid the same thing from
happening. I try to take over the counter drugs for pain...it helps
but the pain comes back before I can take another dose. My doctor
says that I feel tired because I am a mother of a (almost)2yr old.
But my husband helps out all of the time, so I don't think that's
it. I am sorry about the "complaining" I just feel I have to be
brave for my family so this was all kind of built up for the past 7
months.
Thank you for your time and for listening.
Natalie in Reno, NV

Hi Muse --
When I was diagnosed with cml three years ago, I asked the onc/hem what if I
don't take the Gleevec. They said that I would live about three to four years
max.
Please take the Gleevec and count it as one of the many blessings that God gives
us in this world.
chris in minn

Muse,
Cures are sold as Bone Marrow Transplants (so they say), but if you are
young the odds are greater, the older you get the odds drop.
There is no prevention because there is no explaining why the chromosomes
mutate the way they do.
My name is Pat Foundopoulos and I threw out some queries a week or so ago
about smoking, working around gasoline or anything that uses petroleum products,
because the speculation is that the mutation may occur from long exposure to
radiation, gasoline, cigarettes, and the list grows.
This is a rare disease, not common at all, but we have this web site and it
is great.
Pat

Hi Folks,
just asking ----
I know there is no cure, but is there a prevention? A reason? A Why?
I wonder.
Still learning and taking things in
Muse
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Hi All,
I received some very good news yesterday.
This time last year my Ph level was at 201%, chronic phrase CML, 800mg since
December 2005. Yesterday I received the great news that I am now at 0.33%. I
was informed that I have reached a 3-log reduction.
My consultant is not satified that I am 'in control of this disease' as his
words were, but that he wants 'complete erradication'.
There is a new study in Australia called 'Twister's'. Selected patients in PCRU
are undergoing trial by going off Glivec for a period of time, six months to a
year, to see how the body reacts. This was new to my ears.
Take care all,
Jackie Petropoulos
Melbourne, Australia

Hi Jackie,
I'm new and don't recognize all the rhetoric yet, but that sounds good to me.
Congratulations!
I can't send balloons like I wish I could, but sugar cane will have to do.
God bless,
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Hi Skip,
I'm on the internet site reading now, and I just read your note. You were
diagnosed with CML 30 years ago? WOW
(I would have inserted the graphic, but this service does not accept them).
I am a Christian woman believing in Jesus Christ as my savior. I'm doing a
little introduction now because I have been in and out of being a little crazy.
And your 30 years has excited me, telling me that I can live longer too.
However, I don't want to take the medication because I'm afraid that I will get
larger, as the side effects says. I'm already large, but I will talk to my
primary doctor about this because even though I haven't been truly diagnosed
yet, I was informed by the technician that I should start reading on this
disease.
I am so frightened of everything now. Even though I love the Lord and I think I
trust him, being diagnosed with this at this time shakes me. I do trust the
Lord because he has been so good to me. I know he supplies my daily needs. I
know many, many times he lifts me out of horrible depression. I know he never
leaves me or forsakes me. I know that I cannot stop leaning on him now.
I probably sound a little crazy. I'll accept that, but I have to get this stuff
out to someone. My family won't talk about disease and it's consequences.
Friends listen, but they get tired and don't know the answers or some of my
feelings.
So who shall I go to? Maybe I should go to the Lord and wait for answers, but
some things he put you guys here to tell me about. Oh yes, I know.
I need help. I do feel as if I am going crazy now.
sorry, but much love
Muse

Hi, Muse. I'm David. I was diagnosed with CML in May 2005. It
sounds like your encounter with your doctor was extremely
frustrating. Was it your general practitioner? Or was it an
oncologist/hematologist to whom you'd been referred. If it was your
GP, maybe he just didn't want to say too much because he doesn't
know that much. My GP is the one who first saw that I had a high
white blood cell count -- in the ordinary course of a regular blood
work-up. He didn't say too much, but did mention that I could
possibly have leukemia. So, he referred me to an
oncologist/hematologist, who did the tests necessary to determine
that I had CML. Either way, doctors should be as forthcoming and
comforting as possible. I'm sorry you had a negative first
experience.
It's understandable that you feel sad. We all felt sad and also
scared when we first got the news. But you should know that there
are amazing drugs now that can give most CML patients a pretty
normal life for a very long time -- and even more new drugs on the
horizon. If you do have CML, you got it at the best time you could
have gotten it. I know there's never a good time, but you know what
I mean.
Anyway, if you have questions, you can post them here. There are
also other discussion boards, which are largely frequented by
similar groups of patients and caregivers (although I'm sure there's
not total overlap). There's the Leukemia and Lymphoma Society
boards, the Google Groups board (cmlhope.com), the Asian group and
newcmldrug.com. Maybe someone else can provide links to the LLS and
Asian sites?
Best wishes to you.
David (Dov)

Hey Skip. . . "Hello~~My Hero ! ! !" I was getting ready to email you privately
because I hadn't heard seen your posts. Take care. . . I have you in my prayers.
. . "K"
D (FYI) At 91, with only those few side effects; I think the newly diagnosed
lady will be 'fantastic"; as I always say when asked "I AM FANTASTIC" with all
my side effects.
Take care all are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

I can understand your frustration. The first thing the doctor told me when I
was diagnosed with CML is that it could not be passed on to your children.
The second thing he told me was that it wasn't caused by anything I have done.
I have gone through a few phases, but now have calmed down. I listened to a
teleconference the other day with eight hundred other people. The doctor that
were putting on the conference were specialist from Texas. One of the things
I got out of the conference was that most people can live their natural life
span as long as they are taking there medications. I am not a practitioner,
but just a person with CML.
Maybe you should go to a different doctor. A second opinion really could
hurt.
Anyway please don't be too afraid. Try to take it one day at a time.

My name is Muse and I hope there is someone that can help me and support me. I
just found out that I quite possibly have the new to me CML. The doctor would
tell me nothing, but the technician told me to get a book called CML after she
did the bone graph and bone marrow biopsy.
Right now I'm sad and mad. Sad for myself because I have some decisions to make
and mad with the specialist whom I was referred to who did not tell me
anything.... would not tell me anything with all of my questioning.
I need help. I'm sorry to meet people like this, but right now I don't have a
choice.
Thank you and bless you for having some mercy on me.
Ms. Muse
"I believe that unarmed truth and unconditional love will have final word in
reality. This is why right, temporarily defeated, is stronger than evil
triumphant."
Martin Luther King, Jr.

Hi Skip,
There is already a group for AMN 107 that you could join. It is part of
Jerry's website
www.newcmldrug.com
on the left side, click on AMN 107 TALK
it is not real active, but you could post there instead of your own blog if
you want.
Good luck with this drug.
Nancy C.

I was DX 30 years ago. Was on Myleran for 28 of those
years. the last year I have been having a lot of
trouble with Gleevec I would receive blood products
about twice a week, platelets were down to 1,000 and
red 73,000. The Doctor I have asked if I would try a
drug AMN107 which I have started.. The reason for this
post is I have started a blog to follow my progress on
AMN 107. I am not good a keeping a diary so I will
try this for a time while my energy is still above the
basement where I have been for a while. If someone
else is doing this then I will delete the blog but if
it comes in handy for someone I will try to keep it
goin. According to the Dr;. and study nurse I am the
first in this area. the blog is at
http://skip-duffie.tripod.com/blog/index.blog Forgive
any errors my vision like a lot of you if very blurry.
Skip Duffie

Chat Reminder - Saturday 9:00 AM - Photos: Autumn near Ottawa
Images at Pink Lake, Gatineau

Hi all,
Well tomorrow is the big day. I am have my first appointment with a new Onco
here in Cincinnati. I did not want to leave my doctors in Louisville,
despite having problems with Dr. Montez, but the drive every month was rough
on me and my pocket book. So I really had no choice. I have to admit I am a
bit worried. I am hoping this new doctor is not going to want to experiment
on me, or want to change my treatment, because, despite the side effects I
have with Gleevec it is keeping my blood counts within remission guidelines.
They go up and down but have none of them have gotten into the danger zone.
So in my mind if it is not broke don't fix it.
I have been worried for the past week about this visit and honestly dreading
it, because every time I have seen a new doc(twice since being dxed) they
always want to do a BMB. I know I am being a sissy, but to me they hurt like
hell, and at CBC(where I was going) they were only going to give me a local
and not medicate me any other way, at least until I told Dr. Huber that
unless he wanted me to jump off the table it would be wise to give me
something to remain calm..hehehe. One thing I can say good about the first
doc that I fired was that he did a great job with my first BMB. Dr. Huber
stabbed me at least 10 times when he was giving the local for my second BMB,
and my hip was sore for weeks after. I guess I spooked him so much he wanted
to make sure the local took..hehehe.
My biggest worry to be honest is when it comes down to my disability
insurance company. I am not sure how many remember my recent post about
Aetna calling me, but they have me pretty worried. I don't discuss it with
Regina because she worries enough as it is about me. Not to mention I have
been having one of my "bad" spells. For the last week and a half I have felt
like crap, and the pain(the meds still help most of it) has been pretty bad.
I have had to lay down every day, and despite having more good times then
bad, when the bad times hit, it just reminds me of the fight I am in.
Anyway, this thing with a new doctor, and Aetna changing what their
definition of me being disabled is, has me very concerned. It is not that I
do not want to work. Trust me, I would love nothing better than to be making
the kind of money I was when I was able to work, and I loved my job. It is
just if Aetna finds a way to not pay me I will be totally screwed, and if
this new doc is one of those types that is not going to be supportive that
could really cause me problems. I may be over reacting, but it just seems
since Regina and I got together and I have tried to make a new life with
her, we have had one thing after another go wrong. The one good thing so far
is we are moving to a house, but there are worries there that we will be
having a rougher time making it there. I keep my game face on for Regina,
because she has Crones disease and does not handle stress well at all. She
knows I have been feeling bad lately, but I just tell her it is the flu
because I do not want her to worry to much. She told me a few weeks ago that
sometimes in the middle of the night she reaches over and feels my chest to
make sure I am still breathing, so I know she is worried about me allot. I
keep telling her if I go it will not be one of those over night things and
not to worry, but I know she still does.
I am sorry for such a long post, but since I have moved here to Ohio, I
really do not have anyone to rant to, my family(back in Indiana) were not
supportive at all about Regina and I hooking up, and even though my mom and
I speak on the phone, I can't talk to her about concerns because she either
goes into "I told you so" mode, or worries more than she already probably
does.
So I really do not have anyone here I feel I can talk to. Don't get me wrong
Regina is very supportive, it is just she has health issues herself and
worrying about me just makes hers worse. One good thing that happened
recently is I have gotten back in touch with my birth father. I call him
that because he and my mom divorced when I was young so I never really got
to know him. He lives in Colorado and works for the Air Force doing
something(classified) and seems to want to be in my life, but like I told
him, for now it is going to have to be through email and over the phone,
because I do not know when or if I will ever have the money to visit. The
thing is I now understand why things turned out the way they did between
us.(another story way to long to tell) I told him I do now understand, and
will not pull away from him like I use to in the past, so I guess we will
wait and see. Well I have to go, sorry for being so long, everyone take
care,
Terry

Dear Group Members:
The following article from the NY Times underscores the vital need for
government funding of embryonic stem cell research. Please send this article to
your representatives requesting support for this vital research.
If they oppose this funding, vote them out!
It's a matter of life and death for so many of us!
Best regards,
Carl
Carl
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HEALTH | October 20, 2006
Firm Reports Stem Cell Use for Making of Insulin
By ANDREW POLLACK
The work by the company, Novocell, based in San Diego, is a step toward using
embryonic stem cells to replace the insulin-producing cells that are destroyed
by the bodys immune system.
1. Good Girls Go Bad, for a Day
2. 36 Hours: Montreal
3. Op-Ed Contributor: The Universe on a String
4. Movie Review | 'Flags of Our Fathers': A Ghastly Conflagration, a Tormented
Aftermath
5. No Test Tubes? Debate on Virtual Science Classes
» Go to Complete List
Advertisement The Last King of Scotland
A powerful thriller that recreates on screen the world of Uganda under the mad
dictatorship of Idi Amin. Deftly mixing fact and fiction and startlingly
resonant with today's world, the film features a tour de force performance from
Forest Whitaker as Amin.
Click here to watch trailer
Do you love NY? Get the insiders guide to where to stay, what to do and
where to eat. Go to www.nytimes.com/travel for your NYC Guide now. Click here.
Copyright 2006 The New York Times Company | Privacy Policy

Hello All,
Just a reminder for Tomorrow's talk with Dr. Giles. We have changed the
room and time:
Date: October 17, 2006
TIME: 4:30 PM to 6:00 PM
PLACE: The Primrose Amphitheatre at the Royal Victoria Hospital - Room F3
Parking just outside the Woman's pavilion, sorry, you will have to pay.
Refreshments are provided for free as well as the talk.
Please confirm your presence if you haven't already done so.
We are looking forward to seeing you and bringing you up to date with the
activities of the CML Society.
Cheers,
Cheryl-Anne & Suzan

This is a powerful video demonstrating the human side of stem cell research.

This is a powerful video demonstrating the human side of stem cell research.
Here is the link:
http://www.youtube.com/watch?v=q4tFk9WLjwM

Hi Donna,
Honestly I am not sure a BMB would tell them anymore info than what they can
get doing regular bloodwork? I am not a doctor, or play on on TV..hehehe,
but personally if they never did another BMB on me I would not be unhappy. I
am glad to hear the VA decided in Jim's favor, and I hope that helps you
guys out. Take care,
Terry

Hey Group: (FYI)
Re: CHF & Gleevec, I know I had 2 heart attacks in 2004 because I went to the
ER and I shudder to think of the other 5xs that I took Maalox and laid down. I
always thought 'another darn gold side effect' or 'I'm stressed because of the
nasty divorce I'm going through'.
I take gold holidays and I say to myself: "This is chemotherapy--no matter how
benign my Oncologist says it is--it is Radiation". "I needed 400 mg daily, and
now that I am at my 'response' I don't need that amount anymore; and I don't
know the damage--my major organs; Heart, Liver, Kidneys etc., are absorbing of
the radiation".
Brothers & Sisters, I cannot stress enough; " 'If something doesn't seem
right, it isn't. Run. . .do not walk. . .do not pass go. . . "RUN to your
nearest ER, PCP, Oncologist'."
My 2 c-cents. . . take care. . . All are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Hey Group. . . I talked with Scott & Ora . . .he's had his 'Heart Appliances'
installed and should be home in a few days. Anyone wanna say 'hello', his email
is:
nnbaddog@... . . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Talking about possible causes of CML no one knows for sure why some
people get it and others don't. Jim's onc told us of possible causes
also. We did go back and filed a claim with the VA because Jim worked
on an aircraft carrier in the paint locker where he worked with a lot
of paint and solvents. Just one month ago the VA agreed with us and
said they could not say that this didn't cause his CML and now they
are going to award him some compensation. We have been getting his
meds through the VA so we have been very fortunate - otherwise we
would not be able to afford them.
Jim had a major heart attack in Nov. of 93 - 6 years before he was dx
with CML. Since then his heart has slowly gotten worse. Don't know
if gleevec has anything to do with it or not. He is on a tremendous
amount of meds for his heart. They say there is nothing more they can
do for him except keep him on meds.
The one side affect Jim had from Interferon has burned his nerve
endings in his feet. He has pain 24//7. He is on morphine because of
that. I haven't read where anyone else has had this severe of a
problem. The onc and his pain management dr. both say it is from the
interferon.
Jim takes very little gleevec now. Only 100 mg a day for two weeks
and then off for 2 weeks. His last 2 FISH tests have come back
positive but very low. The onc won't do a BMB at this time. That
kind of bothers me. Should we insist on one????
Donna, wife of Jim dxd 6/99

Hey Jennifer. . . No need to feel guilty, as Nancy stated 'YOU ARE THE CHAMP'! !
!
Your plate is overflowing right now; maybe its time for you to 'groom' someone
to take your place... or at least you need an 'Assistant'. Over the years, not
only did I get 'burned out' but now I 'can't'. . .don't let that happen to you.
As always, you are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hey Lynne . . . glad you are home, I have been saying Xtra prayer for you since
I saw Cammie's post. I've had Pneumonia 3xs; 2xs my family was told I wouldn't
make it. Don't rush your recovery, counts will adjust and you'll be right back
on track.
"K"
"I AIN'T FINISHED YET"!!!

Hey Group:
After my 1st auto accident in 1973 (none were my fault), I have ran the gamut
of pain medications from Aspirin & Tylenol Darvon/Darvocet/Empirin. Loracet,
Fiorcet, Tylox etc.; to Tramadol, Vicodin, Percocet, Percodan, Fentalyn Patches
(sp) Tylenol # 3 & 4s, to Demerol, Morphine Sulfate, MS Contin, Oxycodone,
Oxycontin for minor to maximum~~acute/chronic pain management. (Note: All these
medications are 'so-called cousins' with only different name-brand/generic
combinations~per Director of Nurses--major metropolitan hospital PM center).
Over the past 30+ years, I have been up the ladder and back down with my
surgery's and the Doctor's 'experimenting' to manage my pain. I have taken
Aspirin/Xtra strength Tylenol ~~ I have taken Oxycontin 80-120 m.g. when I was
bone on bone--working full-time before my 1st total hip replacement; down to
'no' pain medication at all. The Doctors, for the most part; go with the flow of
what the government's experiencing at the time. In 2004 with the DEA
investigations, arrests of PCPs; who gave Oxycontin to patients for 'headaches';
(I was given Imitrex for Migraines). During that time I went to my PCP for my
monthly refill, he gave me the article from the local newspaper & USA Today, a
2-week supply, and told me to find another Doctor. I eventually spent over a
year in ERs for pain shots, and finally got a PM Doctor who started me at the
bottom of the ladder and worked up again but in 2005; my pain is finally
managed.
This is my 2-cents (FYI) only~~From my past 30+ year PAIN experience, I know
that Acetaminophen is NO good for the Liver. The recommended daily dosage over
time for pain management is too much. In combination with our 'gold'~Gleevec,
both are processed by the Liver;and Aspirin aggravates/causes Ulcers over time.
I cannot stress enough that each of us is an individual, therefore the
medications will affect our major organs differently. Please get copies of all
your FISH/PCR Tests and monitor your Liver & Kidney Function Test variables
every 6 months if you are taking Acetaminophen and/or Aspirin combinations for
Pain Management over time.
Note: (The information on Acetaminophen & Aspirin became available within the
past 2-5 years. I was told by an Ortho Surgeon in the early '90s to monitor the
amount of Acetaminophen I ingested over time; due to long-term effects on
Liver/Spleen/Major Organs~~I have Ulcers and my Liver's ruined.
Take care, all are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

That is great news Susan, hope things continue in that direction, thanks for
keeping us updated. Take care, and congrats,
Terry

Indian Court Begins Hearing Patent Dispute Over Popular Cancer Drug
Associated Press WorldStream - Sep. 26, 2006
NEW DELHI--A southern Indian court began hearing a case Tuesday in which
Swiss pharmaceutical giant Novartis seeks a patent for its popular
cancer drug Gleevec.
The trial is seen as a test for India's new patent law, which has been
criticized by public health activists for favoring multinational
companies.
Earlier this year, Novartis filed multiple writs at the Chennai High
Court after Indian patent authorities rejected its application for a
patent on the anti-leukemia drug Gleevec.
Several Indian pharmaceutical companies make generic copies of the drug
and sell it at almost a tenth of the price charged by the Swiss drug
maker. A month's dose of Gleevec costs about US$2,500 (euro2,000).
Aid groups say tens of thousands of cancer patients in India will suffer
if Novartis wins its case and Indian firms are banned from making
generic copies of Gleevec.
It will also set a precedent for other pharmaceutical companies seeking
patent protection for essential medicines, especially those making
antiretroviral drugs used in the treatment of AIDS, said Leena Menghaney
at Medecins Sans Frontieres, or Doctors Without Borders.
MSF and other aid groups have since come in support of Cancer Patients
Aid Association, which offers treatment to some 40,000 patients in
different parts of India and has challenged Novartis' claim for a patent
on Gleevec.
India's new patent law, which came into force Jan. 1, 2005, allows
patents for products that represent new inventions after 1995--the year
India joined the World Trade Organization, which regulates patent rules
for member countries.
Indian drug companies and aid groups say Gleevec is a new form of an old
drug--imatinib mesylate--that was invented before 1995.
India's earlier patent regime allowed domestic drug companies to make
low-cost copies of expensive Western medicines and helped create an
affordable market for medicines in this South Asian country with an
annual per capita of income of about US$700.
When patent laws were changed, the Indian parliament agreed to include
several safeguards into the new legislation to protect public health and
redress concerns raised by aid groups and the domestic industry.
Under the new law, patents must be only for basic molecular structures.
That gives a company just 20 years to make its profits before the
initial drug--and any spinoff--could be legally copied and thus prevents
what is called "evergreening" of a patent.
This safeguard is being tested for the first time since India's new
patent regime came into force.
"The issue is people should have access to the medicines they need,"
said Loon Gangte, who heads a New Delhi-based group of HIV-infected
people.
Gangte said his group challenged patent applications for 13
anti-retroviral drugs, including Combivir from GlaxoSmithKline Plc and
Tenofovir made by Gilead Sciences. Some applications have since been
withdrawn, he said.
If Novartis gets away with a patent for Gleevec, it will boost the
morale of such multinational companies that plan to enter the Indian
market with their patented drugs for AIDS, he said.
Not many people in India can afford buy those drugs, said Gangte, who
has AIDS and spends about 1,000 rupees (US$220) a month on generic drugs
used in his treatment.

Troy,
A very good question indeed. When I was first dxed in 04, the first doc I
went to(which I fired very shortly after seeing him) told me I could not
take Tylenol at all, or Aspirin. Well shortly after going to my present
doc(which I am changing from them only because of my recent move) they
advised me Tylenol was fine but Aspirin was still off limits. In fact they
put me on Tylenol 3's for pain. You might give them a try, they are I think
a bit less than darvocet so you might be able to tolerate them better. They
really were not strong enough for me and upset my stomach so I am now on
Loritabs.
If your having to take allot of Tylenol for pain I suggest you do try some
other form of pain med, I am not sure what the acceptable dosage is with
Tylenol, but from what I can gather we can take it just like those that do
not have CML. I can't take darvocet for the same reason I had to move off of
Tylenol 3's. Darvocets really mess with my stomach.Take care,
Terry

CML Chat Reminder - Tuesday 9:00 PM EST
I was in NYC last weekend visiting with my daughter Mara. We had a ball
and naturally I took many photos to document the event. These are just a
taste. We visited with Erin Zammett Ruddy of Glamour Magazine. Check out
her blog. http://www.glamour.com/lifestyle/blogs/editor
Zavie
1 - Sunrise From 20,000 Feet - DSC_6818.JPG
2 - Approaching NYC - DSC_6833.JPG
3 - Mara-Zavie-Erin DSC_7025.JPG
4 - Zavie-Erin-Mara at Glamour DSC_7028.JPG
4.5 - Times Square - The Naked Cowboy - DSC_6969.JPG
5 - Dinner before the show - DSC_7286.JPG
6 - Pastrami Sandwich - DSC_7292.JPG
7 - The Play - DSC_7317.JPG

Hi Everyone,
More good news! My second BMA yiielded 0 cytogenetics, 0 FISH and marrow qpcr
of 0.0002 and blood qPCR at 0.0004. I was hoping for PCRU but maybe next time.
Smiles,
Susan L

Hey Group!!!
As I stated in a recent reply, I am a newbie in the CML arena. Seems
I learn something new every day and thankful for it!! Here is a
question I have that always seems to get a different response from
everyone I ask. My question is: What is the accepted dosage of
Tylenol/Acetaminophen I can take in a 24 hour period? I get an array
of responses from "don't go near the stuff" to "1500 - 2000 mg in a 24
hour period is ok". I am allergic to the otter "non-acetaminophen"
products out there. My oncologist has prescribed darvocet with 625 mg
of acetaminophen to take when the bone pain is just too much to
handle. So young people, what is the word on the acetaminophen?
Take care of yourselves!!!!!
Troy

Hey Group (FYI). . . each of us is an individual; I don't take my Iron with my
gold; which I take with dinner (largest meal). It is possible that some may
have a problem absorbing Iron or other supplements such as Potassium, Calcium,
Magnesium, etc., with the gold. My diagnosing Dr. told me that our gold is a
very benign drug; even so it is a Cancer~chemotherapy drug.
"K"
"I AIN'T FINISHED YET"!!!

I've been taking plenty of vitamins on Gleevec. I haven't had any
problems and don't think there is anything to worry about in terms of
drug interaction. Vitamins and minerals are required for proper body
function and in my book, a good regimen to get on.
Not sure if I'm just lucky, but I've taken vitamin supplements and
excercised religiously and haven't had any side effects from Gleevec.

My doctor phoned and told me that my WBC was too low and I would need to hold
the
gleevec for a while. I have been off it for two weeks and was just wondering
about those of
you who went off gleevec for a while. How long were you off before you went back
on? What
things should I be concerned about if I am off Gleevec? Are there any early
signs of
intolerance I can look for?

Thanks so much for all the info. One thing I would like to mention as
I am not a person who can tolerate Ferrous Sulfate at ALL - very hard
on the system and on the stomach- so I took to taking natural iron -
Flora Dex...the absorbtion seems better than the ferrous sulphate
tablets...You can get the capsules or liquid Flora Dex at a natural
health food store. Just an alternative for those who can't handle the
iron pills. I take the liquid (2 Ts a day ) and it tastes like prune
juice..My husband likes the capsules better.
shalyn

Hey Group: (FYI)
For Iron Deficiency, in addition to the multi-vitamins; Ferrous Sulfate 325
m.g. which is inexpensive OTC at approximately $2.98+ per 100 at Wally World
(Wal Mart Pharmacy) when written as a prescription by your PCP. On the shelf it
costs less than $10.00 (go figure). After surgery's, 'me being a person who eats
to live' and totally against hospital food. The Doctor added either Boost or
Ensure to each meal for me and I continued it at home. Shortly after my
diagnosis, my son ordered Prosure
(especially formulated for Cancer patients). At that time he had to order it
online through Ross, and it was rather expensive at $50.00+ per case almost 3
years ago. I heard later that Wally World was going to stock it. I don't know if
any stores currently carry Prosure, I decided to discontinue due to the expense
and the thickness/awful taste, even when diluted with other tasty liquids.
Ensure & Boost are available at a much lower cost and are much tastier as a
supplement to vitamin intake, lack of nourishment through meals, and substitute
for meals during weight loss.
Some of you may be given Tylenol, Vicodin, Percocet etc., by your
PCP/Oncologist for bone or other pain. I cannot stress enough to watch closely
your intake of Acetaminophen the (non-narcotic) pain reliever in these and other
pain medications. Over the years (30+) I have taken more than my share; please
monitor your intake of them with your Gleevec as both are processed by the
liver. Doctors will prescribe them for the pain, make sure that you don't take
the recommended daily dose of acetaminophen; because its too much for the liver
without the added Gleevec.
That's my 2cents, take care all. . . in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hi Margot,
For some reason I couldn't get through on Reply to your kind message. Thanks so
much for your good riches. I'm getting antsy now hoping for pcru!
Hope you're well and I'm sure you are. So glad we're still in touch
Susan L

Susan,
I'm gald to see that life is making a positive turnaround for you. Sprycel
seems to be doing it's thing for you, and the job sounds promising as a foothold
in the D.C. area.
Shelley
Susan Loewenkamp <loewen1@...
Hello Everyone,
Decided to report in with information since I have now been on 100 mg Sprycel
for more than 6 months. I had my most recent BMA about 2 weeks ago and it was
negative for FISH and cytogenetics. I'm waiting for my qPcr. Three months ago it
was 0.0042 which was down from 5 when I entered the trial.
I got into the trial literally on the last day. I had 3 BMBs at Georgetown
University and they all varied widely and they wouldn't let me in the trial. So,
through Bristol Myers I found a trial at Greenebaum Cancer Center at the
University of Maryland in Baltimore. My test BMB showed that cytogenetics were
12, FISH 5 and qPCR 5. I got in the trial immediately.
I also have news about my life here. After my odyssey across the country I'm
still working temp jobs but beginning Monday I have a 3-month temp job with
better wages at a non-profit for the homeless. I'm a Project Assistant for the
holidays making sure that this center for the homeless (82 beds) and the
surrounding community get some relief from abject poverty for the holiday
season. It's good because it gives me stability for 3 months and also gives me a
toe in the door of development in DC. I was a Director of Development in
California.
The traffic patterns seem to change everyday around here so it's hard to read
the best way to go. When I arrive I do get free parking which is a HUGE plus in
DC.
Now I have the time to really research other non-profit opportunities for when I
leave this job.
Hope everyone is doing well. I scan the posts but do not keep up like I used to.
Sprycel has obviously been good for me but I do have side effects of fatigue,
general body aches and occasionally it's hard to get a deep breath but that has
improved. Other than that I'm doing fine.
Best of everything,
Susan L

Hi Jennifer,
You are a champion for raising funds for the L&L Society....with
your marathon runs, etc. This sounds like a fund raiser that just did not
take off.....and the amount of time you put into it is not worth the money
you raise. Sometimes it is easier to try something new than it is to
improve something that is not working well. I would have a grand finale 5th
Anniversary and let people know this will be the last time for this
event.....sometimes that brings more support! and if that should happen,
then maybe you do an encore!! Your friend who is partly responsible
for making you feel guilty doesn't sound like much of a friend to me! There
are always lots of people who like the fun part...but are not there when
there is work to do. If you want a community fund raiser, I would consider
what else has been done in your community and worked well.....and then how
you could put your own spin on it. Sometimes you have to find a social
organization t