CML

Welcome newbies!!! Sorry you have to join this list but glad that it is here
for you. I am 31, living in Braintree, MA with my son and husband. I was dx in
Oct of 05.
:}
Alicia

Was it this group that posted last week about a meeting held in Mass. with
CMLer's? There are two of us in Central Mass that would like to find out when
the next meeting is. Lynne A.
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Hi Again,
You will continue to be amazed at how nice people are. I remember when
I was first diagnosed, I told one of my friends and told her to tell
the rest of our friends because it was a bit hard for me at that time
to go over the story over and over again so I had her do my "dirty
work" for me.
Well not long after everyone found out, I started receiving cards,
phone calls and meals for my family. I actually had a freezer FULL of
meals from everyone who wanted to help out. I was totally
flabbergasted at how kind everyone was...some who I barely knew. It
was very heart warming.
Ask your doctor about going out and being with your friends because as
long as your ANC (absolute neutrophil count) is above 1, you shouldn't
have any issues with your immune system at all. Obviously if one of
your friends has the flu, you'll want to avoid them for a while but I
don't see any reason why you should restrict your social life as long
as your counts are in the safe range.
Keep up the great attitude!
Tracey

Wow I'm like completely surprised at how nice people are. Thank you
for all of the responses. And I do feel honored to be the youngest
posting member =]. Three hours after I found out I had a crying
session with my mom but after that I was optomistic. I'm very involved
in my church so my faith helped me soooooooooooooo much. I also
surprised everyone with my attitude. It just became hard when I got
home from thehosptial though because I am a teenaged girl. I love
hanging out with my friends from youth group. I'm a social person. So
you can imagine that it's hard for me to have to sit in my home while
my immune system builds up again. So right now my biggest problem is
patience. But I have a lot of things to keep me busy like
scrapbooking, reading my Bible and doing devotionals, support groups,
and eventually a tutor for school. So the time should pass.
Thank you all so much!

Hi Adrienne,
Welcome to our group, although I'm sorry you have CML. You may have
the dubious honour of being our youngest posting member but rest
assured that you're not alone. There are a couple of parents who
post for their teenagers so although CML is quite rare in young
people, they unfortunately aren't exempt from getting it (as you've
found out).
The good news is that Gleevec works FANTASTICALLY for the vast
majority of people and the even better news is that there are several
new drugs out (or about to come out), for the few who don't respond
to Gleevec.
There is every reason in the world to expect to live out a normal
life span, even the top doctors in the world have said this. CML is
no longer a death sentence, but rather a chronic condition that can
be treated and controlled. We have a member here who has had CML for
close to 30 years and this was before all these great new drugs were
available so try not to worry too much.
If you have any questions, please don't be shy. I'm sure there will
be someone in the group who can help.
Take care,
Tracey
dx Jan 2002

Hi Chris,
Having your WBC go lower than normal is totally normal. It means the
Gleevec is working! Especially knowing that you are fairly newly
diagnosed, this is actually to be expected.
The Gleevec is killing off all those bad cells and the new, healthy
cells take a little while to re-populate, hence the low counts.
It's very possible that your counts will remain low or on the low
side and this too is usually nothing to be concerned about. Your
white count isn't as important to look at is your Absolute Neutrophil
Count (ANC). As long as your ANC stays above 1 (or 1000, depending
on how your lab reports it), then you're perfectly fine.
I've been on Gleevec for 5 years now and my WBC is often in the 3
range. Last September it went as low as 2.5 but my ANC varies
between 1 and 2 so I don't worry about it.
Hope this helps,
Take care,
Tracey

Dear Adrienne, I am so sorry you are now one of us, but you have come to a
good place for help, support, and loads of information on CML. When I was
diagnosed I thought it was an immediate death sentence, but I know people who
have had CML for many, many years and live fairly normal lives, so don't totally
freak.
I am glad you got on Gleevec, it is a good drug but has some side effects,
but you will learn to manage those with the help of your doctors and this
group.
I can not imagine being 15 and having CML, but you have youth on your side.
I think it is harder when we are older to manage some of the side effects.
I, too, had the same exact symptoms that you had, and for a whole year my
doctor told me it was stress. Well, finally they found out my WBC count was
almost 100,000 so they started taking me seriously.
I have two daughters and watch them like a hawk for any signs of cancer, it
runs in our family. Right now, my 21 year old daughter is showing precancer
cells in her pap smears.
There are a few younger people on our lists, so maybe you can get together
with them online and chat. They'd probably be really happy to share with you
their story and how they deal with it.
We are all pulling for you, so no matter what you have a huge, caring
support group. Hugs, Lynne A.
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Hello,
I had a CBC Friday and my WBC was now low, 3k. I was really shocked as I
was diagnosed just a month ago and was at 544k and one week ago it was 19k.
Has anyone else had an issue with the WBC getting real low like that? My red
count is still just a bit low and platelets are great. Anyhow, my oncologist
had cut me back to one CBC per week, and now I will be back Monday to double
check things.
Chris
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Hi my name is Adrienne. I was diagnosed with CML march 9th so about
two weeks ago. I'm a 15 year old girl so that is pretty uncommon.
I've been having dizzy spells since november. My doctor originally
thought it was stress. I continued getting dizzy spells so on march
1st we called the doctor to get an appointment. The day after we got
the appointment, I noticed that my whole left side of my stomach was
hard when I pushed on it. I thought it was a tumor. Well we went to
the doctor and as soon as he felt my stomach he wanted me to get
blood work done and a catscan. I gave the blood and went to a
hospital to get my catscan. The catscan showed I had an enlarged
spleen. We had no idea why so we waited for the bloodwork to come
back. Meanwhile I went home. My parents and I were watching a movie
and I fell asleep. At 11 PM the doctor called and wanted me to go to
the hospital immediately. I was freaked out. On the way, my parents
told me that the blood work showed that I had way too many white
blood cells. I'm a sophomore in high school. I knew that meant
cancer. So I became scared. The next morning it was official. I have
CML. Thank the Lord for Gleevac though. When I went into the
hospital my WBC count was 265,000 and two days ago it was 30,000. I
was in the hospital for about a week and a half. I'm home now
though. It's pretty hard to adjust though. It's really weird to
think "I'm a cancer patient".
I just need people to talk to who understand what I'm going through.

In a message dated 3/24/2007 12:13:45 P.M. Eastern Daylight Time,
leukie2002@... writes:
shoes that fit. They don't make too
many long, really narrow shoes anymore.
I am more endowed than I had ever wanted to be and my
neck looks like it belongs to a chicken! My eyes look
like baggage is being carried underneath them in
little puff balls.
I just had to write this to poke fun at the weight
gain. It's not funny, but if I don't laugh I'll
probably cry.
Have a great day everyone - I hope I at least got one
person smiling at the vision I tried to portray.
Dear Judy, you are making me laugh so hard I almost fell off the chair. I
too look like that, and am just about at the end of my rope with the weight
gain. WHAT Is it from????? Does anyone know?
I'd love to find a way to get rid of it, then I'd feel so much better. Got
any ideas? Love, Lynne
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This subject is always near and dear to my heart and
my curves, which are really getting well padded. I
have gained about 40 pounds and refuse to stand on a
scale. The clothes tell the tale. I have ALMOST
resigned myself to the fact that maybe I should
advertise myself as the "Michelin Lady". My once
small waist has all but disappeared, the furniture
bumps into my once not too big hips when I am in small
spaces. My posterier looks like it's the shape of a
basketball when I flex my "cheek" muscles; the seats
on airplanes have shrunk; the only skinny parts of my
body are my feet! I wish some of the weight would
shift to those lower extremities as it would be much
easier to find shoes that fit. They don't make too
many long, really narrow shoes anymore.
I am more endowed than I had ever wanted to be and my
neck looks like it belongs to a chicken! My eyes look
like baggage is being carried underneath them in
little puff balls.
I just had to write this to poke fun at the weight
gain. It's not funny, but if I don't laugh I'll
probably cry.
Have a great day everyone - I hope I at least got one
person smiling at the vision I tried to portray.
Hugs, Judy
Hugs,
Judy P. in Calgary

Chat Reminder - Saturday 9:00 AM - EDST

Go to this site and click on launch. Tanya Suterman is a GIST patient.
http://www.msnbc.msn.com/id/17760785/
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
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

In a message dated 3/23/2007 12:01:24 P.M. Eastern Standard Time,
lisa_adan@... writes:
alone in this experience and the side effects of taking gleevec. i
started taking the medicine November of last year.i just wonder if its
normal to gain weight drastically?normal to gain weight drastically?<W
CML...please can anyone recommend a natural way?? also i am
experiencing gas pains and was advised also not to engage in too much
strenous activity that is why i dont think it is possible for me to
work out on this extra pounds i have..i used to be 108 pounds when i
was diagnosed 5 months ago and now i am 128 pounds..please
help...thanks so much...
Dear Lisa, I am so sorry you are having side effects from Gleevec. I don't
know how old you are but I was 42 when dxd with CML and when I started Gleevec
it put me into menopause. My metabolism slowed, and also I was down from the
fatigue and pain from Gleevec, so I was inactive a lot. I have had CML for 7
years now, and sadly, I went from a size 2 to a size 16W. I am not myself at
all.....I have had a hard time adjusting to the weight gain, and I am still
confused as to why I gained so much.
I used to walk about 4 miles a day, work out in a gym, do yoga, plus ride my
horses. The fatigue stopped me from doing many of those things, and also I
found I did not have the balance to ride like I used to so I had to give up
strenuous riding activities, like jumping, and such.
I wish there was something I can do to help you but if I knew I would not be
this heavy today. There was a bit of relief from taking a diuretic, Lasix,
but that only led to muscle cramping so I gave that up.
As for "flatulence" it is an affliction that has bothered me very much
lately. My stomach just will not settle down. I do take Compazine and Prilosec
OTC
but sometimes even that does not work.
I hope we all can figure out a way to get rid of these side effects!!! I
just wish there was something I could tell you to do to avoid gaining more
weight. - Lynne A.
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Hi Melisa,
Welcome to our group. You're definitely not alone and I can assure
you
that we all understand how you're feeling.
To answer your question, yes it is quite common to gain weight on
Gleevec. There are a few possible reasons for it.
One of them is water retention (edema). Gleevec has a tendency to
make
us retain water which will obviously make the scale go up. Drinking
lots of water can help with this.
Another possibility is that Gleevec may increase your appetite and
with
an increase in appetite, comes an increase in food which obviously
can
cause weight gain. Snacking on low calorie foods can help with this
problem.
A third possibility is that Gleevec is causing you to be more tired
which is restricting your activity level so if you aren't as active
as
you were but are eating the same amount of food, well voilà, once
again
there can be weight gain. Some people say that even when they're
tired, if they force themselves to exercise, they end up feeling much
more energized than if they didn't do any exercise although I have to
admit that I've never found it to be true for me. I'm usually just
as
tired after I've exercised as before.
I'm not sure why you were told not to engage in any strenuous work,
perhaps you can clarify with your doctor why this would be
recommended
for you because it's not the norm. Many of us exercise regularly
without any problems. I believe we even have some marathon runners
in
the group. I, myself, try to walk a minimum of 5 kms a day (approx 3
miles) and I've recently started using a stationary bike a couple of
times a week as well. This has been a huge help in losing weight and
maintaining it.
A few years ago I joined Weight Watchers and was able to lose 30
pounds.....30 pounds that I gained after I started taking Gleevec so
if
you really can't exercise, this may be something you could look into
as
well.
The gas pains are quite common as well. I've taken Gas X and found
that to be helpful in the past.
Take care for now,
Tracey
dx Jan 2002

hi!im a new member and it made me feel better to know that i am not
alone in this experience and the side effects of taking gleevec. i
started taking the medicine November of last year.i just wonder if its
normal to gain weight drastically?? i want to feel good despite of my
CML...please can anyone recommend a natural way?? also i am
experiencing gas pains and was advised also not to engage in too much
strenous activity that is why i dont think it is possible for me to
work out on this extra pounds i have..i used to be 108 pounds when i
was diagnosed 5 months ago and now i am 128 pounds..please
help...thanks so much...

Good morning,
Last Sunday I attended a brunch with 4 other CMLers. The brunch was
in Natick, MA, and was just a whole lot of fun. We will probably get
together monthly but not necessarily in Natick. We will probably mix
it up with different locations. If you are interested in meeting
others face to face, please let me know so you can be put on the email
notification list. I'm not actually the organizer, but am helping
out by reaching out.
Kathy
dx 5/03

Hey Judy:
Glad to see your post to Holly, so many Newbies are led to believe that a BMT
is the Cure; and we know that we are in this Survival our entire lives. I am
adding you to the updated 'Newbie Letter' per your longevity post BMT.
ALL are in my prayers, always.
"K"
"I AIN'T FINISHED YET"!!!

Holly
For me and mind you this was almost 7 years ago. I looked at the statistics
for the different hospitals that did BMT's.
I had all my testing done at Moffitt here in Tampa and backed out at the
last minute since during that time I was researching the outcome of the
Gleevec trials. (Obviously I decided to wait for Gleevec to be approved) but
had I moved forward I would have went to MD Anderson in Texas.
Even though all the testing was being done at Moffitt, I was not very
comfortable AT THAT TIME with their ability.
I love my Oncologist and he is still my primary Oncologist to this day. He
was affiliated with Moffitt then also but would not have been the BMT Doctor
although I am sure he would have participated in whatever happened.
Hopefully someone else here in the group will be able to better direct you
but I thought I would let you know that your concerns about which facility
to use are very valid and they should be.
As a matter fact I remember that I had to be assigned a special care
coordinator through my insurance carrier at the time.
They had to get an approval for the BMT as the insurance companies put a lot
of money out for something like this.
Once it was approved she called me and said "you know if you want you could
use another hospital in another state if you like, maybe MD Anderson in
Texas" She also told me that the insurance company's would rather it be done
at a hospital that had better outcomes because they didn't want to spend all
that money and the transplant not be successful.
Hope that helps!
Lisa Martinez

In a message dated 3/20/2007 2:02:37 P.M. Eastern Daylight Time,
leukie2002@... writes:
I'm not alone with the thinning of
the eyebrows - what a relief. I'm even to the point
of getting a free consult with an eyebrow "colorist" -
not tatoo - permanent color. I'm getting tired of
trying to see what I am doing without my glasses. I
have not followed the right path at times and don't
realize it until I have my glasses on - quite a site!
Take care all of you eyebrow-less CML'ers out there.
I did not know you could permanently color eyebrows, who do you go to for
this, I don't know of anyone around my rural area that does it. I use a paint on
type that I bought for $50 at a store, it looks real, not lined, kind of
bushes your eyebrows for you if you don't add water to it. - Lynne A.
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Hi Holly,
You can start by researching center at the National Marrow Donor
Program website:
http://www.marrow.org/ABOUT/NMDP_Network/Transplant_Centers/
US_NMDP_Transplant_Centers/tc_list_by_state.pl
BMT info net also provides some resources:
http://www.bmtinfonet.org/centers/index.cfm
We used our insurance company caseworker to research centers. (she
did the research for us). The center that does the most transplants
in the US is Fred Hutchinson in Seattle.
http://www.fhcrc.org/patient/treatment/process/
When researching the center, you want to ask how many patients like
you (with your disease/phase) have they transplanted in the last few
years? How many survived? What are your housing resources at this
center? Transportation to the clinic/ hospital? Feel free to email me
privately again if you want.
Barb

Whew, I'm so glad I'm not alone with the thinning of
the eyebrows - what a relief. I'm even to the point
of getting a free consult with an eyebrow "colorist" -
not tatoo - permanent color. I'm getting tired of
trying to see what I am doing without my glasses. I
have not followed the right path at times and don't
realize it until I have my glasses on - quite a site!
Take care all of you eyebrow-less CML'ers out there.
Hugs, Judy
Hugs,
Judy P. in Calgary

Dear Holly
I don't post often either but read this and other lists daily. I am 55 years
old and had a bmt in 1993, from my brother. The transplant was difficult, but
manageable. I spent around 3 months in hospital and probably another 9 months
recovering at home. I returned to full-time teaching 18 months later. I had 11
years cml free, but unfortunately relapsed in 2004. Even so, Glivec now is
working for me, and because of the transplant there is some chance that I may
eventually become cml free again. My quality of life is excellent, and has been
for most of the 14 years since transplant. I am happy to discuss any of this
with you privately, or here on the list. BMT is not first choice now because
Glivec is so effective for so many, but it is curative for many and when and if
the time comes you need to look upon it as the means to save your life. You
have already made the most difficult step of deciding on transplant, now
surround yourself with positive people who will
support your journey through this process. I am praying for you Holly, you
will be fine, begin with the belief that this is the best thing for you right
now and know that the outcome for you is cure.
JudyTelford Melbourne Australia

I am sitting here with tears streaming down my face I am so touched by
the responses. First of, I want you all to know that I emailed Zavie
and told him that I know by reading his posts over the years that he
didn't mean to upset anyone. But, maybe it is good that that thread
upset me like it did or I may not have written and experienced the
outpouring of caring I have. There are some amazing people here. I
am planning to go on and read the caringbridge sites you all have
directed me to and I plan to start one.
I do have a question that maybe someone can help me with. All along I
have felt very comfortable with my doctor and transplant center, but
last night I stumbled on some statistics that made me wonder. How did
you who have been through this choose a center? Could it be my mind
messing with me because I am so emotional already? Any help would be
appreciated. By the way, I am in the Pittsburgh area and currently go
to The Western Pennsylvania Hospital (West Penn).
Thank you all so much,
Holly

This seems to be the million dollar question Iris. As far as I've
seen, there doesn't seem to be any medical articles to support early
menopause or any hormonal problems with women on Gleevec however if you
ask the women who are on Gleevec, there are just too many that are
having one issue or another to ignore the fact that there does seem to
be some hormonal issues going on.
Over the years I've seen plenty of women complain about irregular
periods, heavy periods, and missed periods so I can't help but think
something hormonal must be going on.
I went through a period of about 18 months where my prolactin level was
very high and I went through extensive testing to try to figure out why
but nothing was ever found that could cause it to rise the way it did.
The only studies I've seen that come close to dealing with hormonal
issues are ones that were done on men who had developed breasts while
on Gleevec (gynecomastia). The theory is that Gleevec can reduce
testosterone levels which can then cause men to grow breasts but I
haven't seen any studies done on women. Testosterone isn't really
something that women have a big problem with even if it does go a bit
low :)
So I guess what I'm saying is that no one can say for sure that Gleevec
causes hormone problems but if you go by anecdotal stories, there's no
doubt in my mind that there is a link.
Take care,
Tracey

Yes, absolutely--I've noticed the same thing. Now having to use an
eyebrow pencil when I have never even thought of doing this in the
past--I've always had very thick dark eyebrows, and now they are bare
in places out toward the outer edges. Weird.
Vicki

Does anyone know whether CML/ Gleevec can bring about early menopause?
Iris

Hi Holly,
There is good and bad to every decision as well as reasons for every
decision. For various reasons we opted for a MUD BMT for our son
Adam, who will soon be 14. We contacted Dr. Druker as well as
others and did not come to this decision lightly. Adam is just over
two years post transplant and like Barb's Tom, has had his ups and
downs. No one can tell you what to do or not to do, only you and
your doctors can make that decision. A comment I would make is that
I find in general, people post here to seek answers to problems they
are encountering. When everything is going well there are no
questions to ask. In support of your difficult decision I would
like to offer my prayers and give you what I believe is a transplant
success story. Sure Adam still has hills to climb and consequences
of our decision to face but I can get to look at him everyday. Once
your decision is made look forward, not back. Feel free to contact
me or check out Adam's carringbridge site.
With Prayers
Suzanne (Adam' mom)
CML dx'd March 04
MUD BMT Feb 05
www.caringbridge.org/canada/adam

Lately I've been noticing my eyebrows starting to get thinner from the
outside in. Anybody else experience this?
Thanks.

Thank you Holly for your e-mail, I am so happy I did
not discourage you about BMT. I pray that you have
the sucess that I have seen in our Med Day Unit.
They seem to be healthy and happy, there is so much
more out there to make it easier than when I first
became aware of CML.. be safe I will keep you in my
thoughts
SkipD

Holly,
I wish you well in the treatment of your CML now that you've advanced into
accelerated. I hope you find the right drug or have a successful bmt. I'm
sorry if something I said caused you to feel badly, but you must know that we
all feel like we hope we never have to resort to transplant. When you say you
lost your Gleevec response, that scares me. We're all open to words we
might not like to hear when we read the list. I'm not sorry that I feel I would
only go to transplant as a last resort. I need to be realistic about it, I
know too many people from the list in my few years here who were not successful
with transplant. Of course, there are also many with wonderful successful
bmt's.. That's what I wish for you and any of us who, unfortunately, have to
take that route.
Nancy in NY
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Holly if you read my e-mail again you will see I
said that years ago BMT were not working well but
you will see I said I see BMT patients in Med day
all the time now and they seem to do very very well
I hope anything I wrote did not bother you..
SkipD
Repeat"
Hello Tracey and Nancy,
Tracey thanks..I do not post often only if I think
I can add something to the group. I read all....
no I never had a transplant, when I first took
CML that was not an option. Nor was a lot of things
we have today. I think after being on Myleran it
spoiled the chance of a transplant, I am not sorry
I think I would not have survived so long if I had had
one. In fact after a few years on Mylerand (
BUSULFAN)many of the folks that had various forms of
leukemia had not survived with a BMT. Now they seem
to survive just fine I see BMT patients all the time
in med day and they do just fine. Your right Tracey I
never had ccr either, in fact never heard of FISH PCR
or any of the other names until last couple of years
thanks to you and Zaviem and this wonderful group.
I have started a log of my low counts so that others
with either low or high counts know that they are just
another blip on the road and not to be overly
concerned."
SkipD
Dx'ed 1978
http://easyskip.tripod.com
for my counts and story

Dear Holly,
I'm sorry your situation has changed and that you are now facing a
transplant. I'm also sorry that there were comments made that hurt
you. I can totally understand how scared and upset you must feel.
Please know though, that the people in this group (including those
who made the comments that hurt you), have always supported people
who chose to go to transplant or who were forced to go to transplant
for one reason or another.
I will admit that many of us feel as though transplant should be the
last option but it is infact an option, sometimes the ONLY option and
many times it is indeed a very successful option.
I want you to know that we will be behind you 100% during this
journey and I really hope that you'll choose to stay here to keep us
updated as we route for you. Your experiences will be of great value
to others who may be in the same boat as you. As you said yourself,
you never know who may be reading this board and there could very
well be someone that your experience will be of value to.
Best wishes,
Tracey

Hi all. I have been a member here for a pretty long time. I don't
post often but I like to read the posts for information and usually
feel encouraged and hopeful after leaving. However, after reading
this thread I don't know that I will be back. After 7 years of
remission on Gleevec I have suddenly, with no warning, advanced to
accelerated phase. I am on Sprycel at the moment but my numbers
keep crashing with it, and because there is no way to know what will
happen with sprycel long term, I really have no choice at the moment
but transplant. I came here to see if I could find any encouraging
info on bmt and found this. This site has been helpful to me in the
past but I feel like I just got punched in the stomache. Please,
please, in the future, think about how your words might affect
someone else reading them.I'm sorry to post something so negative
but I just had to remind everyone that you don't know who might be
reading or what they might be going through.

Hello Tracey and Nancy,
Tracey thanks..I do not post often only if I think
I can add something to the group. I read all....
no I never had a transplant, when I first took
CML that was not an option. Nor was a lot of things
we have today. I think after being on Myleran it
spoiled the chance of a transplant, I am not sorry
I think I would not have survived so long if I had had
one. In fact after a few years on Mylerand (
BUSULFAN)many of the folks that had various forms of
leukemia had not survived with a BMT. Now they seem
to survive just fine I see BMT patients all the time
in med day and they do just fine. Your right Tracey I
never had ccr either, in fact never heard of FISH PCR
or any of the other names until last couple of years
thanks to you and Zaviem and this wonderful group.
I have started a log of my low counts so that others
with either low or high counts know that they are just
another blip on the road and not to be overly
concerned.
SkipD
Dx'ed 1978
http://easyskip.tripod.com
for my counts and story

Nancy,
I was just diagnosed a few weeks ago. My Dr did tell me if I responded to
Gleevec he saw no reason I would not live out a normal life span. I am 41 and
have a 13yr old so was concerned as he is young and what if!! Anyhow, I am
hanging onto what he told me, keeping it real close!
Chris
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Hey Tracey! Thanks for reminding me of Skip! I read a post of his once,
and was shocked at the length of time he's had CML! Great news! He never had
a transplant did he? I feel that as long as we can avoid transplant, we can
hopefully stick around.
Nancy in NY
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Chat Reminder - Saturday 9:00 AM DST
Photos - Happy St. Partick's Day

Thank you for summarizing the teleconference with Dr. Nimer. It sounds like
he has a sense of humor, warning us about looking before we cross the
street! I was interested to read that he thinks most of us may reach normal
life
span. My dr. is a colleague of Dr. Nimer at MSKCC, and won't say that. My
dr. tends to be somewhat of a downer when it comes to long-term survival, and
I'm doing well. I'd like to hear someone tell me I may reach normal life-span
age.
Nancy in NY
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Hi Chris,
Your results are fabulous.
The experts say that you should test every 3 months.
I like to have them every 3 months and always from the same lab. This way I
can see a trend much better.
Is your doctor suggesting that you test every 6 months now?
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
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

Folks,
I am a big college basketball fan, but their March
Madness is nothing compared to the weather in New
Jersey this week. It was 75 degrees here on Wednesday
and by Saturday morning we will have at least 5 inches
of snow and sleet.
I have a question for the great group of consultants
we have here on our "team".
I got my December PCR tests back this week. I got
lazy and did not ask for them until I went to my
quarterly visit. The results were good.
My September results from LabCorp had me with a
reading of 00.030 (b2a2) and 00.004 (b3a2). My
December results were 00.019 (b2a2) and undetectable
(b3a2) once again from Lab Corp.
I also had July results from my visit to Dr. Drucker
visit which were undetectable for all break points and
positive for a follow up nested PCR test. The Year
before I was also undetectable at OHSU.
Based on the drop in the LabCorp #s from September to
December my Dr elected to skip this round of PCR. I
was hesitant but agreed as they showed a down trend.
My question is should I have agreed to skip it?
Thanks,
Chris

=== message truncated ===

Zavie,
Thanks for sharing this information. This is very interesting and I hope more
studies are done on this subject!
Jennifer B
Dx 5/2/05
600 mg
Zavie miller <zmiller@...
Here is the text of the paper.
A pdf version has been added to the files section of CML2.
Zavie
Correspondence
To the editor:
Imatinib concentrations in human milk
Imatinib substantially changed the course and prognosis of chronic
myeloid leukemia (CML). As a consequence, several female CML
patients decided to become pregnant. In this setting, an unsolved clinical
question regards the potential exposure of the offspring to therapeutic
doses of imatinib through breast feeding. We report here the results
obtained in a 40-year-old CML patient who delivered a healthy male
baby after 38 weeks of gestation. The patient decided to breastfeed her
son. During the fourth week of lactation, plasma and milk samples were
obtained from the patient, after receiving written informed consent, and
collected immediately before and at 1, 2, 3, 4, and 9 hours after the daily
oral administration of 400 mg of the drug. Imatinib and its main active
metabolite N-desmethyl derivative (CGP 74588) were extracted from
milk and plasma using a protein precipitation procedure with acetonitrile1
and quantified by a liquid chromatography coupled to tandem
mass spectrometry method (HPLC/MS/MS). The mass spectrometer
was operated in the multiple-reaction monitoring mode, and following
HPLC separation, the peak areas corresponding to the mass-charge ratio
(m/z) 494_394 reaction for imatinib and m/z 480_394 for CGP 74588
were measured. The limit of quantitation in milk samples was 30 ng/mL
for both analytes, and the recovery rate was greater than 85%.
Figure 1 reports the concentration profiles over time obtained in
plasma and milk. Imatinib and CGP 74588 achieved plasma
steady-state concentrations ranging from 3.0 to 3.2 and 0.8 to 1.1
_g/mL, respectively.
Both the parent drug and the metabolite distributed in human
milk. The milk-plasma ratio reached 0.5 for imatinib and 0.9 for
CGP 74588. Therefore CGP 74588 showed relatively higher
concentrations in milk, reaching a steady-state level of 0.8 _g/mL,
quite close to the concentrations of the parent drug, which ranged
between 1.1 and 1.4 _g/mL. Similar results were obtained in
samples obtained during the second month of breastfeeding.
Milk intake in infants is known2 to average 728 to 777 mL/d
(with a range of 450 to 1165 mL/d). Considering the combined
concentration of imatinib and CGP 74588 and the maximum milk
intake described, it is unlikely that infants will receive more than 3
mg/d. Even when considering infant weight in the first months of
life, this amount is quite far from therapeutic ranges, and the
exposure might correspond to about 10% of a therapeutic dose.
Therefore, these results, although obtained in a single patient and
needing confirmation by larger series, suggest that mothers with CML
could safely breast-feed their children. Given the important biologic and
psychological value of breast-feeding, such information will be useful
for CML patients considering a pregnancy and for the hematologists
caring for them. However, the effects of even low-dose, chronic
exposure of infants to imatinib are not known. Accordingly, in such a
case mothers would want to discuss this option with their pediatrician.
Carlo B. Gambacorti-Passerini, Lucia Tornaghi, Elena Marangon,
Anna Franceschino, Enrico M. Pogliani, Maurizio D'Incalci, and
Massimo Zucchetti
Correspondence: Carlo B. Gambacorti-Passerini, Internal Medicine, University
of Milano Bicocca and San Gerardo Hospital, via Cadore 48, 20052 Monza,
Italy; e-mail: carlo.gambacorti@....
Conflict-of-interest disclosure: The authors declare no competing financial
interests.
References
1. Parise RA, Ramathan RK, Hayes MJ, Egorin MJ. Liquid chromatographicmass
spectrometric assay for quantitation of imatinib and its main metabolite
(CGP 74588) in plasma. J Chromatogr B. 2003;791:39-44.
2. Committee on Nutritional Status During Pregnancy and Lactation, Institute
of
Medicine (IOM), National Academy of Sciences (NAS). Nutrition during
lactation.
Washington, DC: The National Academies Press; 1991.
Figure 1. Concentrations of imatinib and CGP 74588 in plasma and milk at
steady state.
1790 BLOOD, 15 FEBRUARY 2007 _ VOLUME 109, NUMBER 4

Jennifer Bosse
District Manager
Independent Consultant, Arbonne
618.259.2285 or 616.792.3413

Thanks for sharing that with us Zavie. What great timing for Amy too!
It's too bad they don't mention whether or not this patient continued
to take her Gleevec throughout the pregnancy or if she resumed it only
after delivery but either way, it sure does give hope to women who may
want to get pregnant.
Tracey

Hi
I just started Sprycel today, I did real well on Gleevec but it has stopped
working after 6 years,I was very sick on Interferon for 8 years but it did keep
me alive,so I'm very thankful.
Peggy

Hi all,
Attached is a paper that suggests mothers on CML can safely breast feed.
Zavie

Here is the text of the paper.
A pdf version has been added to the files section of CML2.
Zavie
Correspondence
To the editor:
Imatinib concentrations in human milk
Imatinib substantially changed the course and prognosis of chronic
myeloid leukemia (CML). As a consequence, several female CML
patients decided to become pregnant. In this setting, an unsolved clinical
question regards the potential exposure of the offspring to therapeutic
doses of imatinib through breast feeding. We report here the results
obtained in a 40-year-old CML patient who delivered a healthy male
baby after 38 weeks of gestation. The patient decided to breastfeed her
son. During the fourth week of lactation, plasma and milk samples were
obtained from the patient, after receiving written informed consent, and
collected immediately before and at 1, 2, 3, 4, and 9 hours after the daily
oral administration of 400 mg of the drug. Imatinib and its main active
metabolite N-desmethyl derivative (CGP 74588) were extracted from
milk and plasma using a protein precipitation procedure with acetonitrile1
and quantified by a liquid chromatography coupled to tandem
mass spectrometry method (HPLC/MS/MS). The mass spectrometer
was operated in the multiple-reaction monitoring mode, and following
HPLC separation, the peak areas corresponding to the mass-charge ratio
(m/z) 494_394 reaction for imatinib and m/z 480_394 for CGP 74588
were measured. The limit of quantitation in milk samples was 30 ng/mL
for both analytes, and the recovery rate was greater than 85%.
Figure 1 reports the concentration profiles over time obtained in
plasma and milk. Imatinib and CGP 74588 achieved plasma
steady-state concentrations ranging from 3.0 to 3.2 and 0.8 to 1.1
_g/mL, respectively.
Both the parent drug and the metabolite distributed in human
milk. The milk-plasma ratio reached 0.5 for imatinib and 0.9 for
CGP 74588. Therefore CGP 74588 showed relatively higher
concentrations in milk, reaching a steady-state level of 0.8 _g/mL,
quite close to the concentrations of the parent drug, which ranged
between 1.1 and 1.4 _g/mL. Similar results were obtained in
samples obtained during the second month of breastfeeding.
Milk intake in infants is known2 to average 728 to 777 mL/d
(with a range of 450 to 1165 mL/d). Considering the combined
concentration of imatinib and CGP 74588 and the maximum milk
intake described, it is unlikely that infants will receive more than 3
mg/d. Even when considering infant weight in the first months of
life, this amount is quite far from therapeutic ranges, and the
exposure might correspond to about 10% of a therapeutic dose.
Therefore, these results, although obtained in a single patient and
needing confirmation by larger series, suggest that mothers with CML
could safely breast-feed their children. Given the important biologic and
psychological value of breast-feeding, such information will be useful
for CML patients considering a pregnancy and for the hematologists
caring for them. However, the effects of even low-dose, chronic
exposure of infants to imatinib are not known. Accordingly, in such a
case mothers would want to discuss this option with their pediatrician.
Carlo B. Gambacorti-Passerini, Lucia Tornaghi, Elena Marangon,
Anna Franceschino, Enrico M. Pogliani, Maurizio D'Incalci, and
Massimo Zucchetti
Correspondence: Carlo B. Gambacorti-Passerini, Internal Medicine, University
of Milano Bicocca and San Gerardo Hospital, via Cadore 48, 20052 Monza,
Italy; e-mail: carlo.gambacorti@....
Conflict-of-interest disclosure: The authors declare no competing financial
interests.
References
1. Parise RA, Ramathan RK, Hayes MJ, Egorin MJ. Liquid chromatographicmass
spectrometric assay for quantitation of imatinib and its main metabolite
(CGP 74588) in plasma. J Chromatogr B. 2003;791:39-44.
2. Committee on Nutritional Status During Pregnancy and Lactation, Institute
of
Medicine (IOM), National Academy of Sciences (NAS). Nutrition during
lactation.
Washington, DC: The National Academies Press; 1991.
Figure 1. Concentrations of imatinib and CGP 74588 in plasma and milk at
steady state.
1790 BLOOD, 15 FEBRUARY 2007 _ VOLUME 109, NUMBER 4

Hi Christine
I was on a Sprycel trial out of Hamilton last year(I had to stop it),
and am now on Interferon. It is exciting that Sprycel will now get
approval, although disheartening that so many will now have to pay
for the drug. Have they given you an idea of the cost? How does it
compare to Gleevec and Interferon(500/week).
All the best
Susanne

Hi Skip,
Regarding your question about when they will kick you off a trial -
there is no definite answer. You can be kicked off a trial at any
time - at the discretion of the drug company and/or the doctor
overseeing you. A trial patient has the right to stop a trial at any
point as well.
Generally speaking, once a drug is approved, the drug company is still
required to collect data for several more years (I believe its 5 but I
may be off.) so a certain number of patients must be followed. If it
chooses, the drug company can continue to collect data beyond the
required data for as long as the drug company wishes and as long at it
has patients to follow. :-) The decision as to who they keep on the
drug after it is approved is also at the discretion of the company.
I was on the STI trial via NYC but was not kept on trial after the
drug was approved.
I am now on Sprycel via Montreal. I have been on the trial since it
began in Canada, March 2005. The drug is about to be approved (this
week or next) and it appears that myself and many Canadian patients
will not be continuing on the trial so I will soon have to be paying
for the drug!
If you continue to do well on Tasigna (AMN-107), you will likely stay
on the drug until it is approved. Then you may continue to be
followed or you may end up purchasing it.
Hope this helps,
Christine
dx 11/98
Ottawa, ON
(formerly from Halifax) I love your neck of the world!

Thanks Zavie for the information about the talk today
I had forgot it completely, I must admit that Dr. was
great he explained things I had not heard about even
though I have had this bug for almost 30 years.
I should have tried to talk to him, I had questions
but they did not come until the end of the talk.
I was wondering when they will kick you of a trial
drug, even though I feel great, my counts are up and
down like the weather here in this province. Guess we
are in for a bit of a storm. I have to see my Onc
Tues and then see surgeon Wed for a portacath. have
a great day up in cultured Ottawa
SkipD
Dx'ed 1978
26 years on Myleran
then on Gleevec now Nilotinib
http://easyskip.tripod.com
my running comment on my counts

Jenn:
Thought you might find this interesting.
Matt
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Just a few things to add as I do have notes:
"prc is positive in most patients, even if FISH is normal.."
"..if patient presents with accelerated or blast phase the disease ,
the disease presents more aggressively...Imatinib will treat part of
the problem, but will not produce a long-term response-In this case
SCT/BMT needs to be done earlier, not left to later because of this
disease process...'
there was no mention that fewer BMTs are being done, but that is
obvious from the number of us on other meds
..although 400 mg was the dosage initially recommended from the IRIS
trial,may achieve a more rapid or profound response with higher (600
or 800 mg) doses

Thank you for sharing Tracey. Its always reassuring when new talks and
statistics come out. I am happy to hear that everything is looking bright and
hopeful for our futures. It is nice to hear that we have several options in
our corners should we need to resort to them.
Gleevec has brought a lot of reassurance to the CML world and has opened
many doors for us all.
Thanks for sharing the conference data.
Hugs-
Jennifer 35 (just had a birthday)
CML 5/13/2005
Gleevec 800mg
Wife and mother of 3 (11,8,6)
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Thanks very much Tracey, I appreciate you taking those notes and sharing them
with us.
:}
Alicia

Hi Everyone,
For anyone who wasn't able to listen to today's teleconference, (CML
Treatment: Measuring Your Progress with Dr. Stephen Nimer of MSKCC),
here are some notes that I took. Please note that this is the way I
heard it and may or may not be accurate as I didn't actually record
the talk.
He started out the talk with an overview of CML explaining that CML
is a myeloproliferative disease of the stem cells. It causes an
increase in white cells, platelets and sometimes can also cause the
Hgb to rise in patients. CML is easy to diagnose, they look for the
presence of the Philadelphia chromosome using either cytogenetics,
FISH or PCR. As soon as a diagnosis is made, treatment begins
(unlike some other leukemias like CLL where they can sit and watch
the disease for a while without treating it).
He mentioned that 400mg Gleevec is still the standard dose (although
600mg does appear to give more patients the 3 log reduction) but
studies are on going to compare the various doses. He said patients
can start the 400mg right away, there's no need to work up to it. He
also said that because the Gleevec kills off the bad cells quickly
and the healthy cells take a little while to grow, it's very common
to have to take a break from Gleevec in the first month or two. He
stressed that lowering the dose is not recommended, that it's far
more appropriate to take a break from the drug while the counts
recover.
He went over the data from the IRIS trial. Relapse rates in the 5th
year were less than that in the 4th year which indicates that Gleevec
works better and better over time.
He explained that the way to monitor responses is with FISH and PCR
every 3 months. As long as there is improvement, it doesn't really
matter how long it takes to get a zero FISH. Some patients who still
hadn't achieved CCR at 12 months, have gone on to get there at 18
months so the speed of getting there may not be that important, as
long as you get there.
He said that reaching PCRU is very rare and the goal of therapy is to
get a 3 log reduction which he explained is a thousand fold decrease
in bcr/abl transcripts. Although 93% of patients who get a 3 log
reduction, have managed to maintain their response over 5 years, it's
still important to monitor with PCR every 3 months so that if a
resistance develops, it will be identified early.
If a patient's response starts to slip, he suggested that it would
probably be better to switch drugs than to increase the dose of
Gleevec.
He mentioned that most mutations are responsive to Sprycel and he
also mentioned AMN-107 saying that it binds more tightly to bcr/abl
which makes it active on some mutations that Gleevec doesn't work on.
He talked about the famous cardiotoxicity report that caused such a
flap last year. He said that he hasn't seen any evidence to suggest
that Gleevec can cause heart problems or if it does, it's certainly
not a significant number of patients.
He talked about the dosing of Sprycel, mentioning that the two
standard doses are 70mg twice a day and 100mg once a day. He said
that the 70mg twice a day was causing more pleural effusions so there
is a trend towards the 100mg once a day dose which is less of a
problem.
He mentioned that very few patients are getting transplants now that
there are so many successful drug therapy options. He did suggest
however, those in accelerated or blast phase, should consider
transplant as an option because drug therapy in this group of people
doesn't seem to give durable responses.
At this point, the telephone lines were opened and people were given
a chance to ask questions.
The first question was about surgeries and should patients take any
precautions if they are planning for a surgery. He said that if
there is a high risk of infection from the surgery, then it would be
acceptable to stop taking Gleevec 1 week before the surgery to allow
the white count to rise a bit (which will help if the patient gets an
infection) but he said that for the majority of people on Gleevec,
they manage surgeries the exact same way any normal person does.
The second question was about resistance. He said that clinical
decisions shouldn't be based on one test alone. It's the trend over
time that matters. Especially with PCR's since they tend to bounce a
lot. He said that if the PCR rises significantly on one test and
then rises again on another, it should be watched closely.
Resistance can usually be confirmed in about 6 months time.
The third question was about myelodysplasia. He said that
myelodysplasia basically means "funny looking cells in the bone
marrow". He said that there are a significant number of Gleevec
patients who appear to have "funny looking cells in their bone
marrow" but that they don't really have myelodysplastic disease and
the presence of these "funny cells" doesn't seem to have much
significance.
The fourth question was about survival expectations. He said that
after 5 years, only 5% of patients have actually died of CML, another
5% have died of unrelated causes such as car accidents so he
encouraged us all to look both ways before crossing the street
because he thinks there's a good chance that we can all live out a
normal life expectancy.
The fifth question was about using Hydrea in treatment. He said some
people still get Hydrea to start out if they have very high counts
because it can reduce the counts quickly but Hydrea shouldn't be used
long term as a means of controlling CML. Patients should either be
on Gleevec or one of the other new drugs. If a patient is resistant
to a current dose of Gleevec, there is no sense in continuing with
that dose. It should be increased or changed for another drug.
And the last question was about the various transcripts that the
PCR's detect. He said most patients have only one transcript (ie
B2A2 or B3A2 which I think he said was the most common) but a few do
have more than one. He didn't really elaborate more on that.
And that was that.
Take care,
Tracey

Hey Group:
Per my 'Welcome Newbie' letter, I always give my best advice to 'RELAX~~let
your body adjust to the Gold. . .ENJOY~~your new life as a SURVIVOR!
As 'queen of the side effects'. . .I add my #1 experience was ignoring chest
pains. The 2xs I went to the ER, I'd had heart attacks. I now have CAD~~Coronary
Artery Disease and 2 stents. I shudder when I think of the 5xs I took Maalox and
laid down. #2 attributing shortness of breath as a side effect; I now have
COPD~~Chronic Obstruction Pulmonary Disease. #3 regarding bone pain, due to the
numerous Chronic Orthopedic illnesses that I have; I can truly say that our bug
has increases my pain level yearly. For my brother & sister survivors who
previously had no Ortho issues, I know that you are experiencing bone pain as a
side effect of our gold.
I cannot stress enough to you, if something doesn't seem right. . .it isn't
right! RUN. . .do not walk. . .do not pass Go. . .RUN to your nearest ER, PCP
office, or medical facility.
I have ALL in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hey Amy. . . CONGRATS! ! !
Your post caused 'My happy tears'. . .
I have you and yours in my prayers. . .will email you privately from time to
time.
As always, ALL are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Dasatinib may be effective option for pediatric leukemia
by Walter Alexander
Hem/Onc Today CORRESPONDENT
March 2007
ORLANDO, Fla. - For pediatric and adolescent patients with both Philadelphia
(Ph)+ and Ph- leukemias, dasatinib may be an effective and tolerable
treatment option, according to preliminary dose-finding study data presented
at the 48th Annual Meeting of the American Society of Hematology.
Dasatinib (Sprycel, Bristol-Myers Squibb) has demonstrated efficacy in
imatinib-resistant or -intolerant Ph+ disease and is approved in the United
States and Europe for adult chronic myeloid leukemia and Ph+ acute
lymphocytic leukemia.
Few effective treatment options for pediatric patients with relapsed or
refractory leukemias are available, said Christian M. Zwaan, MD, pediatric
oncologist at the Sophia Children's Hospital in Rotterdam, The Netherlands.
Even though pediatric study of pharmacologic agents generally starts at 80%
of the adult recommended dose, children can often tolerate higher doses than
adults because they are healthier and lack the cardiac and renal problems
which often limit adult dosing, according to Zwaan.
The intent of Zwaan's study is to determine a recommended dasatinib dose by
disease stratum in children and adolescents with relapsed or refractory
leukemia.
[bar]
Patients and dosing
The study included 22 children (aged 1 to 20) with imatinib-resistant or
-intolerant CML, post-imatinib relapsed Ph+ ALL or Ph- ALL or acute
myelogenous leukemia in more than two relapses. Eleven patients had prior
imatinib therapy; 16 of the patients had received prior chemotherapy; and
nine had prior stem cell transplants.
Patients were stratified into four groups according to disease severity,
with the first stratum including patients with chronic phase (n=2) and the
fourth stratum including those with more than two relapses or refractory
disease after more than two prior induction regimens (n=11).
"What we want to do is to give dasatinib up-front on top of chemotherapy to
try to improve overall survival before the patients relapse."
- Christian M. Zwaan, MD
The median daily dose, with dose escalations proceeding at the time of this
report, is 77 mg/m2, and the median duration of therapy is 0.72 months.
Initial doses were 80 mg/m2 per day in six patients and 60 mg/m2 per day in
the rest.
Among the 11 patients in the first three strata, six had hematologic and/or
cytogenetic responses, four of them with complete hematologic and
cytogenetic responses. Three patients in the second stratum achieved
clearance of cerebrospinal fluid blasts. Two of eleven in the fourth
stratum, one with Ph- AML and one with Ph- ALL, achieved a significant
decrease in white blood cells.
Response duration ranges from 21 to 217 or more days. Time to response
ranges from 21 to 63 days, with time to best response between seven and 98
or more days.
Zwaan noted that two patients have been responding for longer than seven
months, and others have relapsed after as little as two weeks. "While there
were some complete remissions, all patients are expected to relapse because
this is monotherapy," Zwaan said in an interview.
"What we want to do is to give dasatinib up-front on top of chemotherapy to
try to improve overall survival before the patients relapse," he said.
Some activity, Zwann said, was observed for dasatinib in Ph- leukemias. "So
we think the indication may be broader than just Ph+ disease."
Dasatinib was generally well-tolerated and had a favorable safety profile.
Nonhematologic toxicities were mostly mild to moderate in severity. One
patient had a pleural effusion that responded to diuretics, steroids and
drug interruption. Cytopenias were infrequent, occurring in only one patient
who had been heavily pretreated (including stem cell transplant).
"In this preliminary analysis, dasatinib showed efficacy in pediatric
patients with Ph+ and Ph- leukemias," Zwaan said.
The next studies will be conducted with dasatinib in conjunction with
chemotherapy.
For more information:
* Chromik J, Pfeifer H, Wunderle L, et al. Sustained molecular
responses to dasatanib (SPRYCEL) in patients with Philadelphia
chromosome-positive (Ph(+)) acute lymphoblastic leukemia (ALL) or lymphoid
blast phase (LyBP) chronic myeloid leukemia after imatinib (IM) failure: a
single-center experience. Abstract 285. Presented at: 48th Annual Meeting of
the American Society of Hematology. Dec. 9-12, 2006; Orlando, Fla.
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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

Thanks to all how responded to my question.
Terry -- the article was very interesting.
Tracey, Zavie & others -- thanks for the help with opening the link.
Lynne -- I had forgotten (!) about that Harvard study -- thanks for
the reminder.
I had my testing yesterday. I think I've proved my point re memory
loss & lack of concentration, etc., but time will tell. In fact the
psychologist said the time would be 2 weeks to process and get it all
to social security. I still wonder if there are no tests pre-gleevec
how they know how impaired I am. And this point was mentioned in the
MDACC article.
In addition to the tests, the interview part asked if I had problems
with drinking, thought people were always talking about me behind my
back, and if I ever had thoughts of hurting myself. <sigh
Take care --
Kathy

Playing with rubber gloves is one thing, but watch out
if he reaches for the Auger!

Hey there, Matt. I'm glad your brother was there to provide moral
support . . . and entertainment. David

Dear All:
I just returned from my most recent visit to MD Anderson in Houston, Texas.
According to them, AMN 107 should be approved in a "few months from now".
They seemed to think that AMN 107 had less severe side effects than Sprycel
and counseled me that if I opted to switch to Sprycel to closely monitor the
build up of fluid in the lungs. (I am considering switching from Gleevec
because I work 60+ hours per week and the fatigue and side effects wear me
down.)
They strongly counseled me to no switch and that as long as my numbers
continue to come back strong, to stay the course as long as I can put up with
it.
Then they gave me a litany of reasons to stay on Gleevec and not switch.
BTW, the person who normally does my BMB was on vacation and the newbie that
was doing it only started four days previously. Youch.
And if David is reading this, my brother did come with me and yes he
constantly introduced himself as my "life partner". Don't even get me started
on
him playing with the rubber gloves in clinic room. I think you attorneys all
have really warped senses of humor.
Peace to all.
Matt
Jacksonville, FL
Dx January 2005
<BR
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.

In a message dated 3/14/2007 12:36:20 P.M. Eastern Daylight Time,
deh12@... writes:
That's really interesting, Lynne. Thank you for mentioning it.
Were you one of many being tested? I'd really be interested in what
the study found. Warm regards. David
Dear David, I am unaware of the number of patients tested in that particular
trial. I do believe the researcher's last name was Dr. Nancy Chang, a
female. (but don't hold me to that) The information would have been in the
archives
of the old CML support group listed by Rob O'Neill and I don't know if
anyone on this group has access to those files. As I said, you might contact
Harvard Med School in Boston and inquire about the trial, which I believe is
still
ongoing. I opted out of it because it was too much for me at the time
medically. I think it was called CML and Memory Loss/Retention Trial. See the
results clearly for yourself, I cannot even remember the specifics, haha!!!
And I am wondering if JAMA would have any info on it, in old issues. Perhaps
you could Google it? I hope you get the information you seek. As I said,
when some of us started Interferon and Ara-C, we definitely complained of having
"chemo brain."
I remember questioning the researcher at our session about Gleevec. She
said the trial was based on CML only, and I wondered about the results because
some patients were treated with Gleevec, some with IFN and other drugs. Good
Luck, Lynne A.
<BR
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.

Hi and welcome to the group. As you've already found out, CML is
indeed a roller coaster ride and I'm not sure that ever changes. With
every test and every milestone, we have worries and doubts in the back
of our heads. The dreaded "what if's" can be vicious but we need to
remind ourselves that there is every reason to be hopeful no matter
what a test shows. There are so many options and things to try now,
it's not like it was just 5 or 6 years ago.
Your husband's FISH didn't go up that much and FISH tests do have a
margine of error so I'm not sure how significant the change is (if at
all) but it's wise to re-do the test anyway. Let us know how the next
one goes.
Tracey
dx Jan 2002

Hi Tracy,
Although I don't know the answers to your questions I wanted to let
you know that you are not alone in worrying about the numbers game. I
posted earlier regarding the FISH results. My husband was diagnosed
with CML in July 2006. His initial WBC was 241. Huge Spleen no other
symptoms. He has responded well to the Gleevec therapy but we also
still worry about all the results. Every month a new test!!! I guess
what I read in all these posts is reassuring. The bottom line is to
be comfortable with your oncologist and continually do research on
your own. Even though the answers can be scary, all in all I find I
sleep better at night after reading all the positive posts here. Good
luck!!!!

Hello --
I'll be changing my email address to sandmac@... as of this coming
Friday. Please make the change in your address book! Thanks

I have alot of questions for all of you. At 42 I was dxd in Oct 2006
abd started 400mg Gleevec. WBC was at 381K at diagnosis. After 6
weeks on Gleevec WBC normalized (fluctuates between 6 -12K). My
question - is it suprising or NOT for my FISH to come back at 87%?
My Dr seemed quite surprised at that number, he expected to see a
bigger change, although they have not done o FISH on me until this
time. The indication was given at diagnosis that with a WBC so high a
FISH would certainly be 100%. Wouldn't a theoretical drop of
only 13% be quite disappointing?
Is there a need to be alarmed? Should I insist on an increase in the
Gleevec (dr did say that in MAY they will retest and do PCR and if %
has not changed significantly would increase to 800mg) -- should
increase be aggressive or moderate (600mg vs. 800mg)?
What are the findings on someone with WBC so at diagnosis? Is it more
difficult and a longer process to see a favorable result? Is the
prognosis less promising?
Things just seemed so promising on the surface with the earlier
superficial testing. Now I am just so discouraged and frightened
right now. Am I just expecting too much too soon?
Until my spleen begin hurting in October (which eventually lead to the
dx) I have felt fine. Oh yeah -- and the 40 lbs that I seemed to drop
effortlessly over about a 5 month period. I have not felt nor looked
"sick". People don't seem to actually believe I am sick -- "people
with cancer waste away"-- I am still over weight! The reality is the
initial dx was scary, but now the scariest thing is that so early in
the game I may have to really get down and dirty with this leukemia.
The outlook my Dr presented at my diagnosis is not holding up its end
of the 'bargin".
I am scared, worried, frustrated, confused, angry, lonely, and
exhausted.
Thanks in advance --
Tracey

Hello, I am new to this message board. My husband was diagnosed with
CML in July of 2006. He was put on Gleevec and has responded
tremendously. His FISH levels initially were 189. His FISH at 3
months was 124 and at 5 months was 14. Last month the FISH was
repeated and the level rose to 22. The dr. wants to repeat the test
but of course we are concerned. Has anyone else has wavering levels.
This is such a roller coaster ride and I have not had anyone else to
ask. Thank you for any help or advice.

Hello Amy
My name is Andrea and I am 25 years old, my doctor advised me
not to get pregnant while on Gleevec. You need to talk to Erin she
is pregant but she got off Gleevec until the baby is born. She is
due in August and so far so good. Check out her Blog.
http://www.glamour.com/lifestyle/blogs/editor
Andrea

Amy, discontinue taking your gleevec pill immediately and call your
oncologist!!! There are success stories out there of people who stopped taking
gleevec after finding out they were pg and didn't take it again until after the
baby was born. I don't think there are any of people who continued to take
gleevec. Just make sure to get off of the gleevec ASAP and talk to your onc
about other treatments (I've heard you are supposed to stay off everything and
get tested monthly and if your WBC rises you get on interferon until delivery).
Congrats, best of luck!!! I'm so happy for you!!!
:}
Alicia

Hey everyone, I know this has been asked before, but does anyone know
of any females who where on Gleevec and got pregnant???? Seems the
storke wants to visit my house, and I want to know if there are any
success stories out there, all I am hearing is gloom and doom!
Thanks,
Amy B.

HI Kathy,
I have noticed, as has my family, that my memory seems to be very
poor. I think that it is the drugs and have done some research on it.
Here is a pdf that might be useful:
http://www2.mdanderson.org/depts/oncolog/pdfs-issues/06/oncolog2-06.pdf.
Hope this helps.
Regards,
Terry

Cognitive impairment can definitely be a side effect of gleevec
therapy, and I appreciate all information to support this; however,
what I'm wondering is if anyone else has undergone cognitive testing
for insurance purposes? I'm curious as to how I'll be testing.
thanks for any information.
peace,
Kathy

I've applied for disability due in part to cognitive impairment with
gleevec therapy. Has anyone had this testing? Just curious as to
what to expect. Of course, I did ask the woman at social security how
she would know how bad I am if she didn't know how good I was. She
said she'd be able to tell. ???
peace,
Kathy
dx 5/03

Hi Renee I am sorry that you have had a rough road of things so far.
Your Doctor(a cml specialist preferably) is the best one to help you
manoever through this. People can give you their personal opinions,
but after all they are just that -personal.
In the end you will have to decide what is best for you and your
family. I too could not tolerate gleevec, or sprycel, and am now
taking interferon with wonderful results.
All the best

Take the gleevec on full stomack If I get nausa I take a mint or candy the sugar
helps me I'm on 400 dx 12-23-05 Paul Tn.

Hi Renee,
My name is Lynn and I was dx'd Dec 2003.
I'm sorry Gleevec has given you intolerable side effects. Would you
be willing to share which ones? There are always meds that you can
take to help with side effects.
I'm not sure where you live, but before considering transplant, has
your Hem/Onc considered putting you on one of the new second
generation drugs, like Sprycel?
While I think it is good to at least have HLA tissue typing, to see
if you ever needed at transplant at last resort, I'm not sure you
have used up all your options.
Since you are a single Mom, you are very needed by your child, and
you won't be able to mother from a hospital bed. Transplant is very
serious and there is no guarantee of cure or survival.
I am a mother of two young daughters and a wife, and have had a
transplant consult at the Fred Hutchinson Center in Seattle. After
learning about all the complications and GVH that come after
transplant, I personally chose to not have transplant.
I'm hoping that these tough drugs we take will buy me some time.
Time to raise my daughters.
Don't give up. If you are in doubt, make sure you have a consult
with a CML specialist first.
We are all here to help. Take Care,
Snickersunny (Lynn)
Dx'd 12/01
PCRU-not without complications and lots of side effects

I was diagnosed with CML on 12-22-06 and started on Hydroxurea and
Allopurinol. My oncologist then switched me to 400mg of Gleevec on
Jan. 4, 2007. I recently had a follow-up visit with my oncologist on
March 7th. He said my numbers are fine but switched me to 600mg of
Gleevec. According to him, studies show that treating someone with
Chronic CML at 600mg is better than 400mg. I haven taken my new dosage
for three days and am experiencing some severe bone pain/body aches,
upset stomach and fatigue. I prefer to be on 400mg, as my body got use
to the small side effects with that dosage (bone pain, fatigue, and a
rash). How long should I try the 600mg? Is there any aspirin or pain
medication you all recommend? Can I drink chamomile tea to help with
the upset stomach? Any help would be much appreciated, as I am still
new at all this and learning every day.

hey chris
i too went to er for a internal hemarage in my left leg on fathers
day 06, then found out i had cml. doc tells me im doing well as far as the cml.
gleevec does have some truly enjoyable side effects (lol) but seems to work well
at least for me. Was just informed i also have MS. so just remember life can be
cruel but beats the snot out of the alltinative. just hang in there it will get
better...
david willingham Dx june 06 400mg gleevec

Thanks David! Yea the side effects are fun. I feel like I am hearing a
kids bicycle helmet on my head made out of bowling ball material weighing 15
pounds. Wife asked me what it felt like............haha
She has been a real trouper. She had female type cancer 6.5 years ago. I
swear, me watching her deal with that was harder than what I am experiencing.
That is one reason I am really worried for her.
Today, our best friends mom was dx with stomach cancer. Oddly they were in
the hospital room for my consultation with my Dr who is now her mom's Dr.
Odd coincidences.
Chris
dx 03/01/07
<BR
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.

My placebo works for me.
Gin-Soaked Raisins for Arthritis
Half a chance it will work for others.
Halff
ceils401@... wrote: I too have joint pain,
mostly in my hands. I Have CML since 6/06. I am on 400
mgs of Gleevec, am in Zavie's 0 club and hope I stay there after my
cytogenetic blood test on tuesday. My doctor told me to take calcium which I do
but not
every day. Since I am taking it every day the I don't have the pain as much
or as often. I will be 74 in April. I thought the pain was arthritic but it is
strictly a side affect .
Ask your doctor for his advice.
Ceil
Bronx, NY<BR
free email to

I cannot agree with Lisa more---getting your wife to be part of this forum
would be the best thing for her...I hope that can be soon. My husband was
diagnosed with CML last July (06), and I dont know what we both would do
without this forum. The amount of insight, education, and overall positivity
we have both gotten from this group is amazing. Please let your wife know
she very well may lead almost the same life she was leading up until the
diagnosis,...yes, she has cancer...but thank God, she has one of the most
treatable forms of cancer...and the treatment is evolving every day. I feel
so much for both of you...when we got the news of my husband's diagnosis,
we also got the triple whammy that he had CML, he also had a blood clot in
his brain, that was causing him to have a stroke. Talk about shocking news!
But--he is alive...he is doing excellent...we have a new baby...and if
nothing else, in some strange way, sometimes we actually feel like CML might
be a blessing. Only in that we appreciate life and eachother so much more,
we have developed closer friendships, have met tons of new friend with CML
(through this forum!). Not to mention...we just thank God for each day we
get to be with our new son.
Your wife will get through this, and so will you....just know that everyone
on this forum is here to help.
Regards,
Wendy

Stef-
Great attitude! I know what you mean about the chemicals as I started on
600mg and am currently on the 800mg. I was offered that trial at OSHU but I
felt 400mg was too low and 800mg was too high, little did I know I 'd end up on
the 800mg. But, I am happy to say I am doing fine and have reached the 3
log reduction last December. I am confident that you will find the drug and
dose that works best for your body. The positive attitude you have is an
important part.
I wanted to let you know about a web site that I look at sometimes to get
additional information or suggestions from other CMLers.
_www.newcmldrug.com/bms_discuss_ (http://www.newcmldrug.com/bms_discuss) .
Maybe this will be
beneficial for you.
Best of luck with the new drug if you take that road. Stay healthy.
Jennifer 34
CML 5/13/05
Gleevec 800 mg
Wife and mother of 3 (11,8,6)
<BR
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http://www.aol.com.

Hello & welcome to the group even though I am sure you wish you didn't have
to be here.
As much as you are concerned about her and what she is going through right
now I bet you want to know what you can do for her. My advice is get her to
participate in this group.
She will start by just reading and learning from those of us who were once
in her shoes with the shock of the initial diagnosis.
Most of us if not all of us felt just like she does now and our spouses,
family members and caregivers felt just like you do now. Pretty darn scared!
Thank God I found an on-line support group with people who were LIVING with
CML.
It gave me the hope and inspiration to get up and go on.
Almost 7 years later and I am still here and living a very normal life
(whatever normal is:-) )
If you cannot get her to the site right now then print out the responses you
have received so far and give them to her to read.
Believe me, she'll read them.
Lisa Martinez

Hi there, I am 38 yrs old, writing from Melb Australia and was
diagnosed in Sept 05 with CML. Started at 400mg glivec and have
pursued alternative treatment in conjunction with glivec t'ment.
Meditation, acupuncture, chinese herbs, yoga, organic food, fresh
vege juices. I'm currently involved in a trial "400mg vs 800mg
Glivec" to see which works best. Quite relieved I was put on 400mg
as I hate the fact I'm putting so many chemicals into my body
without really knowing what effect it's going to have long term on
the other organs. I've had considerable fatigue issues on glivec as
well as the puffy eyes, considerable wind (lovely, if you're out to
dinner somewhere...lol) etc but hasten to say overall, I am really
positive I can beat this. On the glivec, my results went to zero by
March06 but after that I went through enormous emotional upheaval,
hideous breakup etc and currently after the last bone marrow biopsy
in Feb07, the cells are sitting at 3%. Not as good as the zero I was
hoping for. But the dr is now advocating going onto this new drug
called disatinib. As it's far more potent, again I hate the idea of
all the chemicals but I was wondering if there's anyone else out
there who has been taking this and how they are finding it?
thanks, Stef

Wow I must admit I was taken back by this post myself. Although the request
was made not to take offense to the questions and comments, I really was
offended for entire group...
The golf Club statement was rude and tasteless as were most of the other
questions and comments.
I personally am not retried yet. I was diagnosed at age 35 with 4 children
to care for. Now age 41 and soon to be 42, I can't tell you how grateful I
am to be part of the zero club # 111 and this is something that we all hope
& pray everyone achieves.
I have been fairly successful in my life too depending on what part of life
JM is referring to?
As for CML being part of my successful life... well that depends on how one
chooses to look at it. No. I wish I never had it but the overall affects has
added to my character and how I choose to live and treat others. So I would
have to say that yes it has contributed to my success in life. And to be
quite honest I'd rather have it then one of the little children in this
world who have to endure such illnesses.
I have a career and a family with no time to join any hobby clubs, but I am
grateful I am healthy enough to say so.
Lastly' I would like to add that if it weren't for people before me almost 7
years ago sharing their personal experiences along with all the positive
feedback, I may not be alive today to have a career, a family and yes the
benefits of success!
Because of that I choose to share whenever I can with whomever I can and
that includes information about me, my health or whatever.
Privacy? Just imagine what it would have been like if Gleevec and the other
drugs were kept private???
Where would we all be? I don't recall anyone on this group or any other ever
asking for our social security #
As for the thought that this could be someone who may have been part of this
group previously returning under a phony identity just to antagonize? That's
very sad...What's even sadder is the thought of this individual being one
who has so much information to share with all of us and the newbies that are
searching for help.
I really hope this is not the case and if it is I pray that the individual
can set aside any personal differences as there really shouldn't be any
here.
One of the quotes that have contributed to my success for many years is and
will always be
" You never loose when you share"
To whoever wrote that post: you really sound like a highly intellectual
individual, which means you obviously have a lot to contribute not only to
this group but yourself too?
Maybe you should step back and reevaluate your post as it really did come
across as very rude whether it was meant to or not.
Also, please note that in no way am I meaning to offend you or any one on
this group.
Have a great day!
Lisa Martinez
dx 5-2000 Interferon, hydrea & ARC
6-2001 Gleevec 400 mgs
8-2001 # 111 Member of the Zero club and proud of it!
PCRU & holding

Hello all.
I watched intently to all the messages in regard to the hypo-
pigmentation caused by gleevec, as I was getting ready to go to sunny
Mexico for a vacation. Well, I am back now, and what I have to
report is "man, this gleevec makes my skin weird".
My skin colour changed from slightly tanned to white as a ghost in a
matter of hours every day. I used lots of sunscreen, starting with a
45 and working my way down to an 8. I did manage to get colour...but
it faded almost as quickly as it came. I did the sun bed thing
before I went in order to get a base. I did not burn in the sun-bed
as I was very careful. I halved the time recommended everytime I
went in. For