CML

Welcome Rick
I hear ya. The cancer support groups around here center on breast
cancers mostly.
I was diagnosed in Sept of 2001. Takeing meds every day was odd to me
too. I'd take a birth control pill in the mornings but found that I
had fewer side-effects on gleevec if I took it at night.
They have a few other meds in the works that might be better. Who
knows for sure huh?
It's great to hear your doing so well. Maybe we'll both catch a Chat
session one of these days and we can BS.
*hugs*
Emy G

Hi Friends,
I¹m back to working on my ASH notes and summaries, though as I¹ll have
limited blocks of time for this over the next week or so, my reporting will
probably remain sporadic.
I thought I¹d be writing long reports on the two remaining ³Corporate Friday
Symposia² which I hadn¹t gotten around to summarizing previously, but after
reviewing Cheryl and Suzan¹s notes I find that I don¹t have that much to
add. One point that does stand out from me from the talk on ³New CML
Agents² by Kantarjian, Sawyers and Guilhot was the amount of
myelosuppression experienced in the Phase II trial of dasatinib (the BMS
drug): 100% of these patients became anemic, 96% experienced
thrombocytopenia (low platelets), which was moderate to severe (grade 3-4)
in 79%. The incidence of neutropenia (low white blood count) was also high,
though I failed to copy down the number.
Most of this toxicity occurred early in therapy and tended to improve over
time. Further, although myelosuppression was frequent and quite severe in
many, it¹s unlikely that patients treated earlier in their disease would
suffer the same consequences. All the Phase II patients had either failed IM
or were intolerant to it, and most of them had pretty advanced disease. So
as with IM in newly diagnosed CML patients, low cell counts can be largely
attributed to the killing of leukemic cells while few healthy normal
precursors remain to repopulate the marrow.
Still, it¹s my impression that marrow toxicity is worse with dasatinib than
with IM. This makes sense given that it inhibits two enzymes rather than
just BCR-ABL alone. I browsed through Jerry Mayfield¹s site to see if I
could shed more light on this, but was unsuccessful. Do any of you know how
dasatinib and IM toxicity (hematologic or otherwise) compare in patients
whose CML is not so advanced?
Best,
Richard R

Hi Lynn,
It sounds as if my periods have been similar to yours, even before diagnosis.
When I think back my periods were 'spotting' for several days before I had a
normal period and my wbc were high also.
I'm sure this is to do first with the CML and now Glivec, and this last month
was crazy. I commented about it to my haemotologist who said that there was no
firm evidence to relate this to Glivec, but he also knows that I am on this
support group so know what others are going through too.
It doesn't stop me from worrying though and quite frankly I am dreading my next
period ... I am going to see what happens next month and if the same things
happens again take myself off to the GP and see if there is some other
underlying factor. There is no way I would consider a hysterectomy, drastic to
say the least unless absolutely necessary. I am not on any other pills either,
no birth control.
Seems that something changes hormones? I have been on Glivec for just over 7
weeks now and am pleased to see that a similar thing is happening to other women
too, it doesn't stop me from worrying though.
Jackie

Here¹s a short post on a talk that Australia¹s Tim Hughes gave on the TIDEL
(IM dose intensity) trial. I won¹t say that much about it because a lot of
the info isn¹t new, such as that patients on higher doses of IM reach the
various response levels faster, and that toxicity (mostly non-hematologic)
increases with higher doses.
In fact, the one new and interesting thing he had to say was in response to
a question: that is, whether they looked at the relationship between body
mass index and patient response to any given dose. They said that they did,
and could see no relationship. I believe Novartis concluded the same thing
in their original trials, but it was interesting to see it confirmed. I
still suspect that effective serum levels of IM may vary somewhat, and that
basing dose on serum level would be a good idea but in any case, we can¹t
use body mass index as a means to guess the appropriate dose.
Richard R

Hi Ladies,
Lynn, my story is similar to yours. Prior to diagnosis, my periods
were getting much lighter and I noticed that the colour had even
changed. It was more "white" than red. I suspect this was because
of the CML.
After I started Gleevec, they were very heavy and very red which I
suppose is what they should have been all along but I had the CML
for so long before, that I had forgotten what "normal" was.
After about a year my cycle normalized (to the 28 day cycle, as
opposed to the 21 day cycle that had started with Gleevec) and since
then, I seem to alternate between a heavy cycle and a light cycle,
much like you Lynn.
By fluke, I found out last summer that I have fibroids now which
probably influence my cycle in a benign way (they did an ultrasound
to look at my spleen, kidneys and gallbladder but noticed the
fibroids in the process).
No one has ever suggested a hysterectomy to me and frankly, I would
never consider it myself as long as there was nothing seriously
wrong with my uterus. There are consequences from having a
hysterectomy so the decision shouldn't be taken lightly and I
suspect you'd have a hard time finding a doctor willing to operate
for no other reason than your period has become a nuisance or
unpredictable. If you're hemorrhaging and passing out from the loss
of blood, then that's obviously another story.
Some people have found sucess with taking ferrous gluconate (iron)
to boost the hemaglobin that we lose every month so if you're at all
anemic, you may want to ask your doctor about that.
Take care,
Tracey
dx Jan 2002

Hi Kelly,
It the time of my diagnosis, I was 41. I had been sick for quite
some time before finding out about the CML. My white count was
305,000 and I was very anemic. My periods were getting very faint,
almost like "spotting" more than a "period."
When I got on Gleevec and my counts returned to normal, everything
changed. I alternate between heavy and normal. It still lasts my
average time. I have not even considered a hysterectomy. I am not
on birth control either.
If you are worried, by all means see your OB/GYN. They can determine
if there is something secondary going on with you.
Sincerely, Lynn (Snickersunny)
Dx'd 12/03
PCRU
Hi Ladies,
I am new to this site and I am still working my way around on it,
through it and in it but i noticed your posting about irregular
periods. I was dx in aug. 2005 and I am 36 years old and I have
noticed my periods changing alot over the last five months. they are
much heavier, last longer than my "normal" and quite honestly I can't
keepup with it sometimes and this last month's came a week early. My
oncology dr. has referred me to an OB/GYN to have my ovaries checked.
I think it has to do with the medicine, gleevec becasue prior to
knowing I have CML my periods were different and gleevec is the only
new thing or drug I take.
have dr. ever talked to you about a hysterectomy? not that i want one.
I would almost just deal with my period for now. I haven't had any
night sweats etc.
well let me know if you have any advice or "magic" answers. thanks,
kelly

Hello All,
The final countdown is on for the meetings of this weekend. We have quite a
few people confirmed for both events in Montreal and Toronto, and I am
looking forward to seeing everyone again.
Saturday, January 28, 2006 @ The Royal Victoria Hospital, J.S.L. Browne
Amphitheatre. 11:30 - 3:00 - lunch will be provided.
Dr. Pierre Laneuville, Medical Chair for the meeting
Sunday, January 29, 2006 @ The Marriott Eaton Centre, Toronto, Ontario,
Salon 1 & II 11:30 - 3:00 - lunch will be provided.
Dr. Jeffrey Lipton, Medical Chair for the meeting.
CML Society News:
Dr. Brian Druker has agreed to be one of our "Experts" for our "Ask the
Expert" section. Visit the site to see our first Q& A www.cmlsociety.org .
We will also Dr. Laneuville from Montreal for Canadian patients and I am
working on a few more Dr's - so stay tuned.
Cheers,
Cheryl-Anne & Suzan McNamara

Hi
My name is Rick Abbott and I just discovered this support group.
I was diagnosed with CML Feb 16 2004 and having been taking 400 mg
gleevec every day since May 2004. I first started in March but after
10 days developed a rash over my whole body so I stopped it for 2
weeks and started back up 100 mg at a time for a week then up to 200
mg etc. So far so good so major rashes just the side effects , tired
etc you know them all. My counts are all good and I guess I'm in
moloceular remission. I go for regular blood once a month and to
Halifax( I live just outside Bridgewater, Nova Scotia, Canada) once
every 3 months for BCR=ACL blood work which my doctor is using to
track how the gleevec is working and once a year for bone marrow.So
far I have been resonding well to it,but like all of us I'm sure we
all are wondering how long can we take this medication. I have never
taken any medication regularly in my life so it was a big adjustment
for me to get in the daily routine. I'm 52 years old and would like to
hear from anyone. There are no support groups around here for CML.
Thanks Rick

I just wanted to congratulate both Giora and Lynn on the amazing
progress they've made in losing weight. It's not easy but it is
worth it.
I gained about 40lbs after my diagnosis and although I'd like to
blame Gleevec, the truth is that it was all the crap I started to
eat that caused me to gain weight. I took on an attitude of "well
I'm dying anyway, why deprive myself of goodies".
At some point I realized that I wasn't infact dying that fast and
that there was a good posibility that I could go on to live for a
while longer so it was time to do something.
I didn't want everyone to remember me as being fat and I was tired
of making clothes to wear since I was outgrowing even my fat
clothes. Lucky for me, I know how to sew so I made clothes for
cheep rather than buying them but I got fed up of elastic waist
bands and stretchy material and I wanted to look good again.
So I finally joined Weight Watchers in the summer of 2004 and made
the commitment to do something. I lost the weight and although I
bounce around with 5 pounds now, I look good and feel better.
One of the biggest treats after I lost the weight was going shopping
for "real" clothes. No more elastic waist bands :)
I wish everyone the best of luck. It really does make a difference
to your outlook when you look good.
Tracey

I have always questioned increasing the dose of Gleevec in order to get
a quicker response. This study seems to say that it doesn't matter.
Zavie
J Clin Oncol. 2006 Jan 20;24(3):454-9.
Comparison between patients with Philadelphia-positive chronic phase
chronic myeloid leukemia who obtained a complete cytogenetic response
within 1 year of imatinib therapy and those who achieved such a response
after 12 months of treatment.
Iacobucci I, Rosti G, Amabile M, Poerio A, Soverini S, Cilloni D,
Testoni N, Abruzzese E, Montefusco E, Ottaviani E, Iuliano F, Russo D,
Gobbi M, Alimena G, Martino B, Terragna C, Pane F, Saglio G, Baccarani
M, Martinelli G.
Institute of Hematology and Medical Oncology "Seragnoli", University of
Bologna, Bologna, Italy.
PURPOSE: Imatinib mesylate is a potent inhibitor of BCR-ABL, the
constitutively active tyrosine kinase protein critical for the
pathogenesis of chronic myeloid leukemia. PATIENTS AND METHODS: We
reviewed 284 patients with late chronic-phase Philadelphia chromosome
(Ph) -positive chronic myeloid leukemia treated with imatinib 400 mg
daily after interferon-alpha failure. In a retrospective study, we
evaluated the pattern and rapidity of the response to imatinib,
comparing the cytogenetic and molecular responses, progression-free and
overall survival rates in patients who obtained a complete cytogenetic
response within 1 year of treatment (early responders), and in patients
where a complete cytogenetic response was detected after 12 months (late
responders). RESULTS: After 3 or 4 years of treatment, the molecular
response of the late cytogenetic responders was similar to that of the
early cytogenetic responders. At 36 months of treatment the amount of
residual disease measured by standardized quantitative
reverse-transcriptase polymerase chain reaction was 0.00047 in late
responders versus 0.00022 in early responders, and at 48 months it was
0.00019 versus 0.00026 (median values, P value = nonsignificant). The
estimated 4-year progression-free survival rate was 88% for early
responders and 100% for late responders, while the estimated 4-year
overall survival rates were 92% and 100% for early and late responders,
respectively. CONCLUSION: The sensitivity and the response (cytogenic
and molecular) to imatinib may require 1 year or more. Long-term
follow-up results continue to improve in terms of rates and durability
of the complete cytogenetic response, major or complete molecular
response, and progression-free and overall survival.
Zavie Miller (age 67)
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
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Do you have a treadmill in your home? It sounds like that's worth having.
Is it a big outlay?

Weight is a big issue<pardon the pun
lose weight badly. I am looking into a Gastric Bypass, but Dr.
Kantarjian is not to keen on this idea. I know if I don't lose a
significant amount of weight I will die soon and not from CML. CML
has become the "least" of my problems. I diet, and gain, I exercise
and gain. I feel the bypass is one of my only options left. Risky,
YES, but in the long run I think it will be worth it. Just putting my
2 cents in. This is not something I am doing lightly, I am
researching and talking with all my docs. Thanks for listening!
Amy B.

Hi Rebecca!
Yes, you are right. Many people struggle with their weight while on
Gleevec. Some gain weight and some lose.. It's weird.
Dr. Druker feels that we will live a long life with CML. If that is
true, I want to do everything possible to make that happen. I want my
heart strong and healthy, mind, bones, muscle and everything else sound
and fit.
The weight gain will cause other problems down the road if I can't find
a way to nip it in the bud and lose it. I don't want diabetes or other
cancers to sneak in on top of the CML.
I have recently started an antidepressant, after 2 years on Gleevec. I
didn't know if my fatigue was Gleevec related or depression setting in,
so I have started and I feel great! Maybe it was a little of both. I
still get cold and shiver, and I get fatigued still, but not to point
of having to take a nap. So, I'm getting more accomplished. I still
go easy on myself somedays.. and I have learned to pamper myself and
give back to myself, things that I haven't done for awhile.
I am eating very healthy, and have dropped all white flour and sugar
out of my diet.. and coffee too. I have stepped up the exercise
significantly. Even if I don't feel like it, or feel sluggish, I still
do it. I just set the treadmill to a slower speed, put on my favorite
tunes, and zone out and go to my happy place and get it done. Then, I
feel so much better that I did.
This is a topic I think we need to discuss on this group.
Sincerely,
Lynn (Snickersunny)
DX'd 12/03
PCRU
I've completely lost hope that I can lose weight on Gleevec. It is
constant work just not to gain more and sometimes despite my regimen it
creeps up anyway. I'd be grateful for any and all advice! It sure is
crummy for the morale.
Rebecca

The Seattle SeaHawks are in Superbowl XL. Go Hawks!
John M

Hello All,
I am delighted to tell you that we have received lots of positive replies
for these two meetings. Dr Laneuville, Dr. Lipton and Susan Kamel-Reid are
looking forward to meeting us and I cannot thank them enough for giving up
their day to be with us - we are so very fortunate to them on our side.
That being said, there is still time to confirm your attendance so that we
can make sure we have enough food for everyone.
The CML Society of Canada invites you to our winter meetings
January 28th in Montreal and January 29, 2006 in Toronto
Information for the Montreal Meeting:
Date: Saturday, January 28, 2006
Place: J.S.L. Browne, Amphitheatre Hopital Royal Victoria de Montréal
Time: 11:30 h to 3:45 PM (Lunch will be provided)
Free parking in P2 Doctors parking located just outside the amphitheatre
Free Admission
Information for the Toronto Meeting:
The CML Society of Canada invites you to our winter meeting
January 29, 2006
Date: Sunday, January 29, 2006
Place: Marriott Eaton Centre, 525 Bay Street, Toronto, Ontario
Time: 11:30 h to 3:45 PM (Lunch will be provided)
Free Admission

This is a story about patients making choices individually - what if these
patients could unit with other patients?
Going Broke To Stay Alive
Rising prices for cancer treatments are making patients -- and doctors --
balk
Avastin is one of the most important cancer treatments to come along in a
decade. Developed by Genentech Inc. (DNA <javascript: void
showTicker('DNA')
months to the lives of the sickest patients with colon, lung, and breast
cancer, a triple crown no other recent cancer drug can claim. Still,
Genentech announced this month that Avastin's recent sales are running about
10% lower than many Wall Street analysts had expected.
The reason isn't hard to figure out. Avastin costs anywhere from $4,400 to
$8,800 a month. The drug has Food & Drug Administration approval only for
the treatment of colon cancer, so many insurers are refusing to pay for its
use against breast and lung cancer. "It is naive to think that a patient's
ability to pay wouldn't affect the practice of medicine," says Dr. Neal J.
Meropol of Fox Chase Cancer Center in Philadelphia.
Cancer has always been an expensive disease, but the stratospheric prices of
the newest drugs are injecting cost into treatment decisions to a degree
rarely seen before. As a result, some doctors, patients, and even whole
nations are beginning to reject the latest treatments, no matter how
effective.
Drug companies argue that the high prices are necessary to offset
development costs of these complex drugs. They also note that the newer
products are more effective and safer. Before these were available, "the
patients died quickly, so their treatment didn't impact the cost of health
care," says Ian T. Clark, head of Genentech's commercial operations.
"SOMETHING HAS TO GIVE"
Now the impact is obvious. Most of the newest treatments are taken along
with older chemotherapies, and some are even taken in combination with one
another, adding pricey drug on top of pricey drug. Dr. Leonard Saltz of
Memorial Sloan-Kettering Cancer Center in New York says that 10 years ago
the drugs used to treat colon cancer cost about $500. Today, the tab is
$250,000. Over the same 10-year period, the average life expectancy for
colon cancer patients increased from 11 months to a little more than two
years. "We're excited about these drugs," he says, "but not everyone can get
them. Something has to give."
Avastin is far from the only cancer drug raising such concerns. ImClone
Systems Inc.'s (IMCL <javascript: void showTicker('IMCL')
$30,000 for eight weeks of treatment. Gleevec, a Novartis (NVS <javascript:
void showTicker('NVS')
indefinitely. Herceptin, a Genentech drug for breast cancer, runs $3,200 a
month. And antinausea drugs to relieve side effects can cost $100 a pill.
Insurers are watching this trend with alarm. Most drugs are only prescribed
for FDA-approved uses, but oncologists routinely administer cancer drugs for
unapproved, or off-label, uses if supported by clinical trial data. Medicare
is required to pay for most off-label cancer treatments, and private
insurers used to follow suit, but recently they have started to balk. Morgan
Stanley (MWD <javascript: void showTicker('MWD')
oncologists in December and found that their off-label use of Avastin for
breast and lung cancer was very low, even though clinical data showed the
drug could improve survival for those diseases. The doctors said they expect
to step up their use of Avastin once they are assured of reimbursement.
"We're finally beginning to see some pushback on off-label uses,"says Dr.
Steven Harr, a Morgan Stanley analyst.
Even so, drug companies have little incentive to lower prices. New cancer
drugs have patent protection, there are virtually no me-too drugs, and
desperate patients have been known to mortgage their homes to pay for
treatment. Plus, Medicare is forbidden from negotiating prices with drug
companies. "You might see some pressure in three to five years to moderate
prices, but there are no forces at work now," says Eric Schmidt, analyst
with S.G. Cowen & Co.
That leaves oncologists and patients with tough choices. Doctors say many
breast cancer patients routinely refuse a new class of drugs known as
aromatase inhibitors, which prevent the disease from recurring, because they
can't afford them. Herceptin is also effective at preventing recurrence, but
a Belgian study released last month calculated that Herceptin would cost
European governments $42,000 per patient if used for that purpose. "It is
possible that present budgets will not be able to bear the extra expense,"
the authors warned.
In America, even patients with generous insurance policies are struggling
with the expense. H. Wayne Thornton of Albuquerque, a supervisor with the
U.S. Forest Service, was shocked when he was diagnosed with breast cancer in
1996. The 59-year-old has gone through surgery and numerous rounds of chemo.
He is now trying to survive on a combination of Herceptin, Avastin, and
Abraxane, a new chemotherapy from American Pharmaceutical Partners Inc.
(APPX <javascript: void showTicker('APPX')
a month.
Thornton pays a premium of $388 per month to cover his wife, Betty, and
himself. Still, his co-pays total hundreds of dollars each month for these
three drugs. He also has co-pays for pain killers, antinausea medication,
and doctors' bills. "I try to stay focused on my health, but it's easy to
slide into depression," he says.
Oncologists are also fighting despair. Because they administer most cancer
drugs intravenously, the docs usually buy the drugs themselves and bill
their patients at a razor-thin markup. "I am in an incredible bind," says
Dr. Barbara L. McAneny, Thornton's doctor. She would like to give patients
state-of-the-art treatment every time, "but you have to live in the real
world. When the patient says 'I can't afford it,' I start to think about
what is second-best."
All drug manufacturers have programs that provide medicines free of charge
to uninsured patients. Last year Genentech spent $200 million on such
subsidies. But that doesn't address all the problems of the underinsured. "I
have patients who refuse treatment all the time because they cannot come up
with the money," says Dr. Craig Hildreth, a St. Louis oncologist. Hildreth
says he does not believe any of his patients have been denied a chance at
prolonged survival because of an inability to pay. Yet.

Hello,
Does anyone else have experience with PCR
testing by Genoptix? How reliable are the scores?
ho

In a message dated 1/23/2006 4:57:46 A.M. Eastern Standard Time,
giora1@... writes:
healthy eating and almost daily work out in the gym and in the last 6 months
i have lost 30 kilos. (66 pounds). i feel ofcourse much better and the most
important my sugar has become normal and i stopped all medications
Why Giora that is wonderful! I met a man at the gym who told me that he lost
100 pounds over the course of 32 months, so you made tremendous strides! Do
you have a trainer to help you or did you do your own routine? Also, did you
do any special type of diet or just what you thought would be good for you?
Honestly, I do not eat a lot of fat. I do not eat a lot of sugar either.
Salt is my downfall. I love salty things, and this of course leads to edema.
Thank you for sharing your story with me. I have faith - if you can do this
so can I! Shalom, Lynne A.

Hi Lynne,
Sounds like right now, you just need to rest and get over the flu.
Just eat healthy, and drink lots of liquids, and rest. You will be
good as new soon, and then you can start back on your program.
I have young children, age 6 and 10, and they are always picking up
things from school, especially Kindergarten! My last cold lasted 2
months, and I didn't think it was EVER going to go away.. but it did,
but slowly. I feel for you! ;-)
One reason I bought a treadmill for home, is that I wanted to use it
whenever I wanted. I live in rainy WA state, and I love to walk
outside, but not when it's rainy or cold.. So, the treadmill is set
up and always ready to go! It's awesome to not be a slave to the
gym.
Take good care of yourself, and I'd love to hear your progress after
you get better.
Sincerly, Lynn (Snickersunny)

Hi Nancy and everyone else who wrote to me (off list)
I started to write this reply, then I hit a wrong button, and lost
it - grrr. I will try to recall what I was saying...
Oh, yes, how could I forget, I was going to say a word or two on the
price situation and BMS. As I already said, there was a significant
price increase here in Canada a few months ago, I think it was
probably during the summer, but I am not exactly sure. I am aware
that the price of Gleevec was increased in the states too. So, while
I am excited over the entrance of BMS into this market, I have to
say, that as a marketing person, this recent price increase of
Gleevec has me concerned. This might mean that Dasatinib can come
out on the market at the new arbitrarily inflated (as if the price of
Gleevec wasn't arbitrary enough, read the book magic cancer bullet,
the price was set based on Interferon pricing, not on other normal
things like manufacturing, research, etc.but I digress) price. Or,
much to our horror, it could even be just a bit more expensive, well
after all, it does something better than Gleevec (for those who are
intolerant/resistant).
That being said, I can tell you and others that Christine and I met
with BMS a little while ago. They wanted to meet CML patients and
find out what our lives are like with CML. It was not only
a "moving" experience for us, it was also very moving for the BMS
Dasatinib team - there wasn't a dry eye in the room and there were
close to 15 people there. We tried very hard to convey what life is
like for us. We explained the stigma we feel sometimes because of
this disease and the high cost of the drug and the hardships many of
us go through to get the drug. Then of course, there are the side
effects. Everyone tells us to "suck it up" at least we are alive
right? However, these side effects make it very difficult to live
a "transparent" life with this disease on this drug. In the end
everyone in that room promised us that they were going to do whatever
they could to help us. We can only hope that they are successful.
Nancy, you asked me what you and others could do, well here is my
suggestion. All of us together should work as hard as we can to make
our voices be heard. We have to hope that BMS takes the initiative
to implement programs that do not require people to go begging to
charities and loose all their worldly possessions to access this life
saving drug. Each of us should do something, write a letter to your
congressman or the heads of the pharmaceutical companies in whatever
country you are in to bring a message to them and humanity about what
we must go through. "Marketing" dollars should be re-directed to our
doctors to improve PCR testing and directly help us, the patients, or
reinvested into research to find an affordable cure for this disease.
If somebody really wants to be a leader in this disease category,
then they should figure out what and how they can get this drug
better classified so that it is fully covered and accessible to
everyone. Increasing the drug price at this time is like adding
insult to injury.
I am so happy that you are doing so much better on Dasatinib and my
fingers are crossed that you will achieve a cytogenetic response. We
are all so grateful to you and the rest of the Dasatinib warriors.
Thank you for everything you do for us Nancy and I am looking forward
to following your journey.
Love and all good things,
Cheryl

In a message dated 1/23/2006 8:14:26 P.M. Eastern Standard Time,
leechys@... writes:
Wow that is awesome that you lost that many pounds in such a short time!
Unfortunately, I have two problems. One, I don't own a treadmill and have to go
a gym, which is half hour away, so going twice a day cannot do it for me.
Also, I tried to skip the gym and went for a walk outside three days ago. I am
now in bed with flu again. I don't know if it had anything to do with it,
since my husband brought the flu into the home AGAIN and I just cannot resist
the
germs.
So out of the window flew my great exercise program. They want me in the
hospital by the end of the week if I don't get better. I am on Z-pack and this
is day two, so we'll see how it goes. See, this is always the way with me. The
minute I get on "track" with my health, something blows me out of the water.
The only good thing about being ill is that you lose weight sometimes. It's
just that like you, I was getting up to a 5-mile walk on the treadmill and
eliptical machine (sp?) and it stinks to have to give it up for a week or so
while I heal from this stupid flu.
You are giving me hope though, with what you wrote, and as soon as I get
well, I will attempt more exercise and by the way, your diet plan sounds very
good. I had forgotten about Jello as being a great filler if you have a sweet
tooth. Thanks ! - Lynne A.

Hi Richard and All,
We are indeed having oddly warm weather here, too, but no sunsshine at all.
It's gloomy like I remember the Ohio River Valley when I was growing up.
"Smooth cloudy" my mother would call it. And I swear that the weather
forecasters in DC are the worst I've ever seen. Unless this anomaly in winter
weather is just too weird to forecast properly! I'm really sick of the
gloominess!
Susan L

One more thing....
Drink water, water, water.. and then some more! ;-) I got off of
coffee too. I allow myself a cup of coffee, once a week. Also, eat
fruit instead of drinking juice.
Lynn (Snickersunny)

hallo lynn
i agree with you 100 %. the weight gain is a question of self determination.
i took myself into strict healthy eating and almost daily work out in the gym
and in the last 6 months i have lost 30 kilos. (66 pounds). i feel ofcourse much
better and the most important my sugar has become normal and i stopped all
medications for the high blood presure .
as someone who was heavy weight all my life, i can testify that everyone can do
it even on gleevec.
shalom
giora

Hi Lynn!
I have also had alot of weight gain since being dx'd and put on
Gleevec.
I think a big part of it was due to inactivity and fatigue,
especially in the beginning. Also, I learned that I was a stress
eater. Getting a CML diagnosis causes stress, and stress creates
weight gain.
So, for me, after 2 years of being on Gleevec, I had a 40 lb weight
gain! I also have edema in my extremities for which I am on 40 mg
Lasix, but it doesn't always do the trick. I have to take it
everyday. I even eat low salt, but it does not eliminate my need for
Lasix.
So, this New Years Eve, I made a vow to get this weight off, once and
for all! I didn't use any weird quick fix. I have focused on eating
super healthy, balanced, low portion, more often foods. Such as
salmon, chicken breasts, tuna, lean meat, egg whites, veggies, some
fruits, and whole grains, like oatmeal, kashi, skim milk, lowfat
cottage cheese, yogurts, and sugar free jello for my sweet tooth.
I have also been using my treadmill everyday, twice a day. Break up
your workout if you can't do alot of time in the beginning. It
doesn't matter, as long as you put in the time. In the beginning of
Jan, I was only able to walk a 1 1/2 miles. It was pathetic! lol
Yesterday, I walked 4 miles, and I have gained much more stamina in a
short amount of time. I still have days that I feel sluggish. Some
days are better than others, but I don't beat myself up about it
anymore. It is what it is, and I have to remind myself to go easier
those days. I still have CML.
I have lost 10 lbs since Jan 3. I didn't think my scale could move
down on Gleevec, but since pushing hard to rev up my metabolism, it's
working! My pants are getting loose! It's a great feeling! You can
do it... just push, push, push! We are fighters and we are strong!
Best of luck!
Lynn (Snickersunny)
Dx'd 12/03
400 mg Gleevec
PCRU

Hey MJ,
Sorry you're dealing with diverticulitis. I've had it several times since
starting IM five years ago, virtually always late in my IM breaks. I'm
pretty sure I know why this occurs: I had diverticulosis prior to my CML
diagnosis, which put me at risk for diverticulitis to begin with. As you
probably know, -osis means a collection of something, while -itis means
inflammation. Diverticulosis is a collection of outpouchings in the colon
wall due to heredity and low fiber diet. Feces can get into one of these
and get stuck long enough to set up an infection, which becomes
diverticulitis.
Anyway, my hypothesis is that prolonged loose bowels due to IM weakens the
muscle in the gut wall. Then when I stop IM and my stools firm up, the
weakened gut isn't able to push them through so effectively, I become
constipated and the less mobile feces get caught in the tics (medspeak for
diverticulae) and set up an infection. Since my first episode I maintain a
high index of suspicion for the condition and treat it at the very first
sign - that is, when I experience a sensation of bloating and slight
discomfort in the left lower quadrant of my abdomen, with Cipro 500 mg twice
a day. When I catch it this early the symptoms are usually all gone within a
couple of days, though I always complete the 10 day course.
If course, this is not to say that's what's causing your diverticulitis, if
in fact that's what you have. Good luck, in any case!
Richard R

Thankyou Nancy and also your reply Ursula. Im not sure what Doctor
your under Ursula but im under Tim Hughes in Adelaide and ive also had
problems with Gleevec even at the very beginning when they said i
wasnt responding to the drug. And now i have responded but not as well
as theyd like plus i to have terrible side effects that ive had to
come off Gleevec for 8 weeks. Tim told me that if id lose response it
has to be up to 35%Philly and then they would then put me on one of
the new drugs that is on trial at the moment and if i didnt respond
and up with 35% which he conciders accelerated then they would then
give me back gleevec. So in his views Gleevec is avaliable in most
cases but as i said im not sure who your under maybe you need to get a
second oppinion not at any stage has Tim given me the view that I
would be left stranded without any drug.
Susie Dx Nov 2002

Thanks lots Cheryl-Anne. I had a lovely birthday with my sister in New
Hampshire - in this strangely warm January New England weather!
Richard R

In response to your post I wanted to ask if your concerns are due to weight
gain on Gleevec? I have gained an enormous amount of weight in the 6 years on
Gleevec. At first it was slight, but as the fatigue and other side effects
took hold, I was unable to keep my metabolism at the rate it used to be. I
was unable to maintain the energetic life I once led. I was also forced into
menopause earlier than I expected. Although I have a decreased appetite, I
continue to gain.
I asked my doctor if there would be any special diet I should be on at the
beginning of Gleevec treatment. She said No! Later on I was told to
supplement with Potassium, Calcium, and Magnesium. But that was through the
support
group.
Recently I asked the doctor if I could do anything to stop the weight gain.
The doctor said really nothing except changing my diet and exercise. I
explained my diet, lots of fruits, vegetables, and I do not eat junk food. Nor,
do I
eat large portions, but rather eat small portions of low-fat foods broken
into 5 little "meals" per day. I was told it would raise my metabolism if I
ate more often but less portion.
I blame Gleevec for my weight, but the doctor said no it was not Gleevec. I
just don't understand it at all.
While I did join a gym last week and having been doing the treadmill for 25
mins. per day as well as lifting small weights and using other machines, I
have felt better but have not noticed any weight loss as yet. It probably is
still too early to expect that.
However I have a question. Does anyone know if it would be safe to take
weight loss pills or use products advertised on television like Slim Fast or
anything like that? I am going to ask my doctor this week but I wonder if
anyone
on the lists have tried weight loss products. Thanks, Lynne A.

I hope it works out well for you Ursula. I had heard your story before,
about being cut off the drug, but maybe the situation is changing. Even if
you don't get a cytogenetic response, the drug is still keeping you alive
if it is controlling your blood counts. I have many old cml friends who are
still 100% ph+ after being on Gleevec for years.
Also, some people do not need to be on 400mg and do just fine on 300mg. All
this is not totally understood.
Let us know how your bmb results come out.
Best to you,
Nancy

hi gang ,
after being on this site for 2 weeks, i was wondering if any one
was taking a different approach to cml as far as their food intake,
has any one changed their eating habits as they are concerened to
increase certain foods while eliminating others
also are their any web sites that can lead mein that direction ?
all replies would be appreciated
thanks
richie

It about the same here In Nova Scotia, my insurance is
first pay
of 80%, after the initial 100 per family deductable.
Then the Province will pay the rest which is about
$700 per month at 400 mil a day. Now I have to pay a
deductable to the Province of 740
dollars.. this is called co-pay. But my regualar
insurance with dental medical and private room and
coverage for away (like in the US)this covers the wife
as well. cost me about 80 per month.Which all boils
down to around 1700 or 1800 a year. I feel lucky at
that.. For I have friends in the USA who are in a fix
due to all their medications. not necessary Gleevec
but all other drugs.. Where my wife is from people
from the mid-west states come across the border and
fill their drugs once a month so I am told they have a
special tour bus..just called drug run...
So I feel lucky to be covered and if Gleevec is
supplied to people who cannot afford it by the company
and we pay a bit higher then I say its worth the
extra. We are all in this leaky rowboat together...
SkipD
--- Cheryl-Anne Simoneau

Hello Everyone,
The price of Gleevec is always an interesting topic to discuss and has been
a bit of a nightmare for me these past few months. Let me give you some
background: Here in the Province of Quebec in Canada, the maximum anyone
will pay for Gleevec is $800.00 per year (the cost of Gleevec is about
$37,000 based on my current pharmacy cost), regardless of your income. The
provincial government has allowed Gleevec to be placed in a special category
of drugs. My private plan covers 100% of the cost of my drugs. If you have
a plan that only covers a portion of your drug costs, then the Government
subsidizes the rest. If you do not have a drug plan you are fully
subsidized. However, my drug plan is maxed out, so I no longer get dental
and eye care coverage. So, that means that 100% of my health plan is
dedicated to paying for Gleevec. This also means though, that since the
government is subsidizing the cost of this drug they can place certain
requirements as far as pricing is concerned. From my perspective, I think
the plan here in Quebec is fairly good and is definitely a step in the right
direction. My feeling is that any patient with a catastrophic disease (and
this disease can certainly be in this category) should not be so severely
penalized with healthcare costs, after all it is not like we chose to get
this disease in the first place.
But back to my nightmare. In October I went to have my prescription filled.
The pharmacist advised me (and painfully so, we are good friends) that the
cost of this already expensive drug had just recently been increased. I
said, impossible, this category of drug cannot have a price increase
according to the provincial formulary laws. So, the investigation into the
price increase was launched (by me of course). I work in the healthcare
industry.. Anyway, I found out the drug distributor was putting an increase
on the drug. Why? because Gleevec was not available at their warehouse in
Quebec (which the law clearly states it should be, but that is another
story). The importance of this is that Novartis has implemented a price
increase on Gleevec of 3% for patients in Ontario and 4% for patients in the
rest of Canada (except Quebec). So, the drug distributor, probably wanting
to get in on the action passed along the 4% drug increase to my pharmacy,
who was obliged to pass it along to me - or try to anyway. I have been
holding off telling everyone about this as the blame is flying all around.
I spoke with the VP of the drug distributor who absolutely deny this. They
(the drug distributor and Novartis agrees) want me to report the name of my
pharmacist, which I am not going to do as he is a small independent family
owned business. Eventually I paid my usual price for Gleevec.
In the meantime, back in the early part of September, Novartis approached me
to participate as an editor on a CML patient magazine. Actually it was the
communications company who contacted me. According to a marketing survey,
patients surveyed said they would like to have a magazine and website that
would provide good information for patients. So, I agreed to review the
contents from the patients perspective. I didn't really give much thought
to any of it.
UNTIL I HEARD ABOUT THE PRICE INCREASE! I wish I had much more finesse in
dealing with issues like this, but I do not. I am really disturbed by this.
I am very sure that if patients were surveyed and asked what they want they
would have said no to a magazine if they would have known that the price of
the drug would be increased. Additionally I have heard that adherence
(replaces the word compliance) is a big concern these days. Novartis would
like to make sure that everyone takes their prescribed amount of Gleevec.
To that extent, they have sent letters out to pharmacists and of course they
are also working very close with our doctors. If Novartis is really that
concerned about keeping us all "adherent" to the drug then they certainly
should have provided our doctors with the appropriate methods for
determining drug serum levels. This would help patients who are getting too
much in their system or not enough. Additionally, I cannot understand how a
price increase would help with "adherence".
You cannot imagine the amount of flak I am taking on this as I have been
having discussion with lots of people and it has not been all very nice.
Anyway, I am not saying that profits are sinful, after all this is a
capitalist society we live in. I just find it very disturbing to know that
we are going through hardships with this disease in paying and accessing
this drug, while the drug company spends money marketing to us and
"educating" us. Furthermore, I am not sure that this disease category
should be handled so "commercially". Even though I work in marketing in the
health care industry I find it inappropriate to conduct any "marketing"
activities to patients like us or patients with other life threatening
diseases for that matter. We are a captive audience, unfortunately. I
think it is adding insult to injury to market to us. Do we actually need a
drug company telling us and reminding us that we have a life threatening
disease? If any drug company is so intent on spending our drug money (well
we pay for it from our drug plans or tax dollars, don't we) then they should
put it back into research so that we can find a cure that we will be able to
afford.
With all this being said, the meetings next weekend of the CML Society are
open to everyone. Neither the doctors, nor Suzan and I are being paid
anything (as has always been the case) for organizing and conducting these
meetings. The easy part in organizing these meetings has been working with
Dr. Pierre Laneuville and Dr. Jeff Lipton. I really enjoyed meeting Dr.
Druker and many other doctors as ASH. We are very fortunate to have doctors
like this.
If anyone has any thoughts or comments on this, I would gladly welcome them.
Peace,
Cheryl-Anne

Thank you Lisa. Health and happiness are definitely the most important birthday
presents anyone can get.
Love,
Susan L

Dear Regent,
The best thing I ever did when I joined a group four years ago was to
tell my story. How I found out and my first days with it.
It is a realy confusing and odd new world view. After that I just
floated untill I had something to say. What foods made me sick, News
I found or heard about treatments and new drugs. Even if I just had a
crappy day.. like the when I got stuck 7 times by four different
people for a blood smaple... Usualy replying to new members and
helpping them to feel that there is true hope and they are being heard.
Just hang with us and treat us Like buddies you can talk to when you
need to who realy do know what it is your going through.
*HUGS*
Camarilla/V:TM player?
hehe

:)
I was on Ortho-tri-cyclin, oral pills. It was what I was useing
before the cml and what I've been put back on now. No ones ever
batted an eyelash and Dr.Hendrey even wroe a refill for me once a
few years ago if memory serves.
*hugs* EmyG

Hi
I have recently been diagnosed (Nov 05) and am a bit confused about
the whole new world I have entered. I joined this groupalmost
immediately but have had no luck with really participating in the life
of the group because I don't really know how to. I live in South
Africa so yr chat times and my awake times don't conincide...any
suggestions?

Hi,
Most of us don't use chat.....we just write a message, our questions,
concerns, etc.....and others will
respond to you. You can get individual e-mails or read on the website. So,
you just did your first post
and I am your new CML friend! easy as that.
Let us know what questions you have.
Nancy C.
Eugene, Oregon, USA
dx 9-1998

Dear CML Family,
Hello all. I hope this finds everyone doing well. I am still
waiting for my mid-December results from MDAnderson and will update
everyone as soon as I have them. What's the old adage? "Patience
is a Virtue?" Sigh : - )
I want to share an e-mail I received this morning from my good friend
Anthony and his wife Gloria. Last year they found out their little
grand daughter April had AML. She is being treated at UNC here in
North Carolina - and is doing well. However, Tony sent the
following note out and I want to ask for your prayers and thoughts
for this family who now have another case of leukemia to do battle
with . . . Hard to fathom that this disease is so insidious.
Read on . . . Love and hope to all of you . . . Barb from Raleigh
*************
Friends,
Last year at this time we learned our Grand Daughter April, age nine
was diagnosed with leukemia. It was the longest, most difficult year
for us. But, it was also the most rewarding too. We got to meet some
great dedicated doctors, nurses, therapists
and volunteers who were tireless in their efforts, and abundent in
their generousity.
We are also thankful for the time we spent with April. We watched her
for the first three months before she was allowed to return to
school. This was when she was under the heaviest meds. She was such
an inspiration for the entire family. She was the perfect patient,
even when the meds. took away her normal high- spirited personality.
But, she endured, and understood the road to full recovery
was a day at a time.
We are glad to report April is well on her way to full recovery,
although continuous monitoring is essential for five years to make
certain all signs remain normal.
I sincerely believe April would not have been as far along in her
recovery if itwasn't for the great medical support AND your prayers.
Gloria and I knew you where "with us",and placed April in your
prayers, and we'll forever be thankful.
Before closing I want to tell you we just learned Gloria's sister's
GD Hailey, age four has also been diagnosed with leukemia. As you can
imagine, their family is as devastated as our's was.
I hope you will add Hailey to your prayers, as you have April.
Thank you once again,
Tony and Gloria

Hi all,
FYI:
Research News from the Howard Hughes Medical Institute
Studies Reveal How New Drug May Overcome Deadly Mutation that Causes
Leukemia
HHMI researchers have discovered how a new generation of drugs thwarts a
deadly mutation that causes chronic myelogenous leukemia.
Using x-ray crystallography, the scientists produced detailed molecular
images that reveal how VX-680, a drug developed by Vertex
Pharmaceuticals and Merck, deftly sidesteps a deadly mutation that
blunts the effectiveness of Gleevec and a second generation drug called
dasatinib.
Research published in the January 15, 2006, issue of Cancer Research.
John Kuriyan, Ph.D., HHMI investigator
University of California, Berkeley
Charles L. Sawyers, M.D., HHMI investigator
University of California, Los Angeles
For the full story, go to
<http://www.hhmi.org//news/kuriyan20050115.html
http://www.hhmi.org//news/kuriyan20050115.html
Jennifer G.
Please support the Leukemia Society by making a donation here:
www.upstairswindow.org

Thank you Richard. I'm anxious to get the BM results. The cold/infection
slowed me down a bit as it took it's course, but perhaps & coincidently, I'm
feeling great & full of energy after drinking grapefruit juice for past 2
days.
R/
Bob
_____

--
Dearest Cheryl:
Thanks so much for your good wishes for the birthday. Yes, I sure
hope the diverticulities resolves itself. Once again, many thanks,
MJ

Happy Birthday Mary Jean,

Hi Susie,
In the US, for people who have no health insurance (it is supplied by some
employers, otherwise you buy it yourself).....Novartis has an assistance
program, and provides Gleevec free for some people and subsidized for others.
A lot of us do have health insurance, and we might pay a $$-amount copay
(like I pay $15 a per Rx) or a percentage.
We do have gaps in our health coverage, that is for sure.
But before you brag too much about Australia, I believe (and think we just
had a person post about this the other day).....you are cut off from access
to the drug if you do not have a certain cyto response to it!! that is
pretty appalling really. There are people who have been maintained on
Gleevec, with stable blood counts and no disease acceleration for years,
but have always been 100% ph+. In Australia this treatment would be taken
away from them. What are these folks supposed to do in your country?
Gleevec is not a cure, it is a maintenance drug.....in my mind it is
successful if it is keeping blood counts steady and not allowing CML to
progress. So, Australia is only going to pay for Gleevec for those who have
a better response to it.
It's always important to look at both sides of the coin.
Nancy C.

Hey there im just asking a question..? are you saying in america you
guys pay over a thousand dollars for your month supply of Gleevec?
wow..i cant imagine the straign that must put on your family. In
australia we realize that it cost alot of money we were told $53,000 a
year to keep someone on Gleevec but thankgoodness for a good medical
system. And no you dont have to have private health ... we pay a
normal parscription cost which is around in its $20.00 and if your
lucky like I am because they put me on a pension due to my side
effects from Gleevec i only pay about $3.60... We are in a lucky
Country.
susie Dx 2002

Happy Birthday again:) !!!!!
May you have many more and may God blessed you both with good times and good
health!
Lisa Martinez

For the last 7 years I have to pay for mothers prescriptions and every new
prescription I check around again. Wlamart is always the cheapest in my Area
for everything. Now she has medicare but it appears it won't be any better.
Lisa Martinez
Tampa Fl
Message: 5
Date: Thu, 19 Jan 2006 15:35:00 EST
From: vegasrnjen@...
Subject: Re: High Priced Gleevec!
I am going to check out a different pharmacy this month and see if that
makes a differance. At walgreens were I usually get it, it was told to me
that
it would be $2230. I am going to make a call to walmart and cosco today.
Thanks for the help. Jennifer CML 5/13/05 Gleevec 600 mg

Richard,
Thank you for posting this information and Bob, thanks for bringing it up.
This very, very interesting...
Lisa Martinez
Message: 3
Date: Thu, 19 Jan 2006 10:14:14 -0500
From: rrockef1 <rrockef1@...
Subject: IM and Grapfruit - Bob
Hi Bob,
There are a couple of questions here, and I'll try to answer them both.

Dear Richard and Susan, a very Happy Birthday to both of you from me as
well. I hope this year finds you blessed with good health and many joyous
occasions. - Lynne A.

Mary Jean, what exactly is diverticulitis? I know someone that had it and I
remember it was no fun, but she had some operation to help it and she is now
working again and in seemingly good health.
The only thing I am plagued with from time to time is pancreatitis and
that's only if I indulge in something very rich, like ice cream, before bed
time.
It is excruciatingly painful and once had to be hospitalized for it, but now
I know not to do the things I did that bring it on.
Hope you find a way to relieve this problem. - Lynne A.

I wish you both the most happiest of happiest!
Peace, health, love and all good things the whole year through!
Love,
Cheryl-Anne

Hi:
I'm probably dealing with diverticulitis but will have a catscan
tomorrow. It's not at all fun. A quick way to lose weight as the
appetite has left. Any experience with this among list members? Thanks

hi everybody,
I'm not posting much here but would like to just comment on the high
priced Gleevec shortly.
I have been diagnosed with CML February 2005 and since then I am on
Gleevec 400, subsidised from our Government.
The original price of Gleevec is AUD 3927,97 per Month.
I pay AUD 28,60 on prescription.
After the results of my Bone Marrow Biopsy on January 9th this year (
the 2nd since diagnosed with CML) I will know if I still get Gleevec
subsidised.
I am off Gleevec since January the 8th, had a blood Test done 6 days
ago, have not heard anything from my doctor, I assume so far all is ok.
I will have another Blood test done this sunday and then meet with my
doctor on tuesday to hear the news.
After having been on and off Gleevec constantly because of strong
headaches, I believe that the 400mg are too strong for me, but..who knows.
I had the doseage reduced to every second and then third day and now
have some 6 full packs left.
Should the subsidy not be granted I have at least a little time to
look for an alternative.
Let's hope for the best;-)
With my best wishes for all my fellow CMLer,
Ursula in Australia

Hi,
Boy, stuff has changed quick here? Is this where everyone is that was

Hi Bob,
There are a couple of questions here, and I'll try to answer them both.
This question was very current when IM (Gleevec) was first approved because
a lot of American insurance companies weren't covering it right away. Taking
liver enzyme inhibitors might have been one way to get more bang for their
out-of-pocket buck. Grapefruit seemed an especially cheap and healthy way to
do it (taking erythromycin should work even better, but doing this over a
long time period would not be cheap nor necessarily safe). Now the question
is coming up again because Medicare and a lot of insurance companies are
starting to reduce their coverage of expensive drugs like IM.
The problem was and is that Novartis has never made available its assay for
testing IM serum levels, and without this it's impossible to know whether
enzyme inhibition is working sufficiently to achieve therapeutic levels on a
lower dose. That's why I was excited to see that a French team has come up
with a new approach to monitoring levels (see below, where I've reprinted my
email from ASH on this), which may get around Novartis' senseless embargo of
their own test.
In your own case it's not a matter of taking a lower than normal dose, of
course, but of whether grapefruit might boost your level even higher on an
already high dose.
A WBC of 22,000 is pretty high for even a bad sinus infection, so I'm glad
you have a BMA in the works. If you really have suffered a loss of
hematologic remission, then the options you cite are probably the way to go;
however, given the fact that the WBC started to climb AFTER you stopped
eating grapefruit raises another possibility. Granted, the relationship
could be merely coincidencidental, but it's also possible that your body has
an unusual way of processing IM - either that you absorb it poorly,
metabolize it fast, that your Ph+ cells take it up too slowly, or that they
spit it out too fast. If any of these are true, then all it might take to
get you back into good remission would be a higher EFFECTIVE dose of IM
(which, in this hypothetical scenario, the grapefruit was providing). An IM
serum level would useful, at least for telling what the level in your blood
is and I'd recommend you work to get this done. I believe a couple of the
CML centers in the US are actually able to do IM serum levels now - my
recollection is that it's available at Druker's lab at OHSU, and Sawyers lab
at UCLA, but I'm not certain of this. Maybe others on this list can help
here?
If your blood level is therapeutic there's still the question whether IM is
getting into your leukemic cells and staying there long enough to block
BCR/ABL. There are theoretical ways of testing for this, but I'm not sure
whether any of them are clinically available. If your BMA results show a
need for action, please let me know and I'll query one of the CML experts on
this point.
Best of luck with your results,
Richard R

My Gleevec this month will be $2230.oo. What do I do, I have to pay it, I
need the medication. Hopefully, the cost will go down in the future.
Jennifer

Hi Gang,
I've been on 800 mg IM since 2002 but a few months ago, for the first time, I
had an abnormal FISH and a BMB revealed 7 bad cells out of 20. That BMB was
done as part of the BMS trial protocol and I was turned down because I needed to
have 8 bad cells which would have put me over the magic number of 35% bad cells.
Also, the BMB was the worst I've ever had -- extreme pain, two tries plus the
biopsy and I ended up with a bruise that covered my right buttock, hip and up
towards my shoulder blades.
I had a second BMB at the same hospital where the results should have just been
thrown away because they were so far from anything I've ever evidenced but I got
a Fellow to do the BMB and he was great.
I have now let the Clinical Research Nurse know that I will not allow the first
doc to do another BMB and canceled an appointment when I heard I was scheduled
for him. So, next week I'm going in and I have the Fellow again.
You must speak up and let people know that there's something wrong or you'll
just keep getting treated badly as some patients are. Tell people in charge
when you are being treated badly whether it's a verbal insult, a tone or
physical discomfort. I'm no shrinking violet.
Susan L

In a message dated 1/17/2006 6:51:08 P.M. Eastern Standard Time,
loewen1@... writes:
You must speak up and let people know that there's something wrong or you'll
just keep getting treated badly as some patients are. Tell people in charge
when you are being treated badly whether it's a verbal insult, a tone or
physical discomfort. I'm no shrinking violet.
Susan, bravo to you. I had the MOST horrible bmb I've ever had out the 14 I
have endured during 6 years. It was last year, this so -called "oncologist" at
the hospital where I am treated did a job on me. I felt the most horrendous
pain and instinct made me try and get away. In doing so, I turned the wrong
way and twisted a muscle that seems to have never healed. I called 2 days
later to complain, and the nurse that was there at the time said to me, "OH, I
didn't know you heard anything we said." What they said to the doctor was,
"Doctor, you put the needle in on the wrong side, the one that was not
numbed!!"
I should have sued, because to this day I am afraid of bmb's now, and when I
turn to the right my muscle cramps up and causes pain. I fired that doctor
and never want to see her again. The oncologist I had since then left the
hospital and guess what? They gave me my next appointment with HER. I refuse.
So, I went last week to another oncologist whom I really don't want to be
treated by either, but he is the lesser of two evils. My March bmb will be the
test for this new onc. I made it clear to everyone there that if I ever, ever
have another bmb like that one, I'll sue. I mean it. We have enough to deal
with as it is. Thanks for sharing your experience and encouraging others to
speak out. - Lynne A

The CML Society of Canada invites you to our winter meeting
January 29, 2006
Date: Sunday, January 29, 2006
Place: TBD
Time: 11:30 h to 3:45 PM (Lunch will be provided)
Free Admission
On the agenda:
* Introduction of The CML Society of Canada - Cheryl-Anne Simoneau
and Suzan McNamara - co-founders.
* Dr. Jeffrey Lipton, Hematologist/Oncologist, Princess Margaret
Hospital
Updates from ASH (American Society of Hematology) from the
clinicians perspective
* Dr. Susan Kamel-Reid - Director of Molecular Diagnostic,
University Health Network
Associate Professor of Laboratory Medicine and Pathobiology
"Minimal residual disease monitoring and mutation detection in
CML. What does it mean?"
* Cheryl-Anne Simoneau & Suzan McNamara,
News from ASH (American Society of Hematology) and the patients
perspective
Please join us for information and socializing on Sunday January 29,
2006
For more information please contact:
The CML Society of Canada
As a lunch will be provided please RSVP and obtain room information
at: info@...
Tel.: 905-477-0913 or 416 654 6111
Please visit our web site:
www.cmlsociety.org

Hi Emy,
You both look very cozy in the picture - congratulations once again.
It sounds like you have a good health care team looking after you.
I know how you feel about hoping that CML never comes back. For now
though we know that there have been only a very few patients who
have been able to stay off of Gleevec for a length of time without a
relapse. We know that Gleevec isn't a cure but it really helps most
of us lead a normal healthy life, in spite of the side effects.
Good luck to you and keep us posted.
Cheers,
Cheryl-Anne

Hi Richie,
Welcome to the group.
Was your white count high when you started Gleevec? if yes, that is the
first result that you will see, the white count dropping and going back to
the normal range (or even a little below it). When your blood counts are
back in the normal range....this is called a hematological response to
Gleevec. It usually occurs pretty soon, or at least in the first 6 weeks or
so.
By 3 months or 6 months, you need to do some follow-up testing to see how
well Gleevec is working for you.......either a bone marrow biopsy (to
determine how many cells have the Philadelphia chromosome).......or a FISH
test.........or a PCR test. Do you know what your ph+ % was at
diagnosis......often it is 100% leukemia cells in the marrow. With
treatment this % should decrease.
Hope I have not already overwhelmed you...........there is a glossary of
terms on the webpage and a FAQ (facts and questions) that will get you
started. People here are more than willing to answer your questions. Also
let us know if you are having any side effects......and someone might know
a good remedy.
Best wishes................plan to be around with your family for a long time!
Nancy C. (dx 11-1998)

hello
my name is richie ,50yrs old,live in pa
i just started taking gleevec and i am wondering when i will see some
results from this med.i have a thousand questions but don't know where
to start, i hope everyone out there will have patience with my asking
questions .i want to be here for my family thank you for any responces
you may have
richie

I should talk to my family doc here in town or take out an add. I
know of a few cases of CML in my town as well.
*frowns* I like to blame the 20 year old super nuk-em industeral
microwave I use a work. Stupid thing doesn't always stop right away
when you open the door.
I grew-up near some farms that used some nasty sprays and us kids were
always running around in the crop fields and playing on and near folks
equipment.
My sister has cervical cancer that has progressed, my little brother
just died of a genetic disorder of the heart that we had no idea he
had. He was my marrow donor when and if I needed one. It hurts. It
all makes you wonder.
*sighs*
*smiles anyway*
Emy G

Jan,
A months supply at full price is about $2500, we get three months at
a time... over $10,000 for three months... $40,000+ a
year....yeah... My pharmacy LOVES me. Good insurance is a MUST. (I
tell ALL the new young kids at work to get on the plan because you
never know when you'll need it.)
Every year my co-pay goes up but it's better than paying full price.
We had to fight to get them to pay at all the first few months
because the drug was so new when I started it that it wasen't
something they had heard of and didn't want to pay for.
You can apply and fight to get Gleevec included in the plan or an
acception made for her... the law might be on your side for them to
extend current coverages.
I'd look into some of the independant advertivsed RX plans out
there. If their membership fees are less than $400 a month and co-
pays are less as well it can't hurt.
I'm not sure of any of this working or my advice being sound but I
hear you.
*HUGS*
Emy G

Actually, Emy, grapefruit INCREASES the Gleevec in your system, rather than
decreasing it. Something in the grapfruit competes with the enzymes that
break down the drug, so it stays in the system longer - that is, yesterday's
dose is still there when today's dose comes along!
Richard R

Hi Susie,
I don't think it is that bizarre. If they did an environmental
assessment of the area they will probably find the reason why.
Try this one for bizarre.
There are 3 members of the Zero Club in Harpers Ferry, WV.
Harpers Ferry has a population of 307.
Something is going on there.
Zavie
Zavie Miller (age 67)
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
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hello Emy,
Congratulations to you! How wonderful that you have a brand new baby
girl. That is great news.
So you have been off of Gleevec for close to 10 months now? Where
are you getting treated? I ask, because this year at ASH there were
a couple of posters about women who had gotten pregnant and went back
on Gleevec afterwards and completly regained their remissions.
I'll admit that being off Gleevec for that length of time probably
isn't for the "faint of heart" shall we say - but good for you.
Keep us posted on your situation, and maybe if you get around to it,
send us a picture.
Blessings,
Cheryl-Anne

Hey guys...i just thought id post a message as ive chatted with zavie
many times about stastistics of Leukeamia in our little small town in
SA Australia where there is only 12,000 people. Can you believe that I
know of 5 new Luekeamia cases in 3 months, isnt that bizare...i wonder
whats happending down here in this little town of ours thats well
known for our Olympic Gold Medal (weightlifting) Dean Lukin and our
winner race horse Mkyve Deva.
Susie Leech
DX Nov 2002

Good news!
Paper in Cancer Research Further Validates Ambit Biosciences'
KinomeScan Kinase Profiling Platform
BIOWIRE2K
SAN DIEGO--(BUSINESS WIRE)--Jan. 16, 2006--Ambit Biosciences today
announced the publication in the January 15, 2006 issue of the
journal Cancer Research of a crystal structure that explains why the
Aurora kinase inhibitor VX-680 is active against Gleevec(R)
(imatinib)-resistant forms of the kinase BCR-ABL, including the T315I
mutant variant. The T315I mutation is the most common drug-resistant
mutation in chronic myelogenous leukemia (CML) and confers resistance
not only to Gleevec, but to all second generation BCR-ABL inhibitors
currently in clinical development. The interaction between VX-680 and
BCR-ABL variants was initially identified using Ambit's proprietary
KinomeScan kinase profiling platform.
The Cancer Research study was published in an article
entitled "Structure of the kinase domain of an imatinib-resistant Abl
mutant in complex with the Aurora kinase inhibitor VX-680" (Matthew
A. Young, et al.) and is available online this week. The binding
profile of VX-680 across a large panel of kinases including ABL
(T315I), determined with KinomeScan technology, was published
previously by Ambit scientists in the August 2, 2005 issue of the
Proceedings of the National Academy of Sciences (PNAS) ("Inhibition
of drug-resistant mutants of ABL, KIT, and EGF receptor kinases"
(Todd A. Carter, et al.)).
"These data demonstrate that KinomeScan's profile of VX-680 was right
on target," said Scott Salka, Chief Executive Officer of Ambit. "This
study also highlights the versatility of KinomeScan, which rapidly
identifies, characterizes and quantifies kinase-small molecule
interactions. It can be utilized throughout the drug discovery and
development continuum, from specificity and lead optimization to the
identification of new indications for clinical compounds such as VX-
680. Additionally, Ambit has used KinomeScan to discover next-
generation kinase inhibitors, which we are currently evaluating in
preclinical studies, including a compound that specifically targets
the T315I mutation."
The Cancer Research study was led by Matthew Young, Ph.D., and John
Kuriyan, Ph.D., of the Howard Hughes Medical Institute, University of
California, Berkeley, in collaboration with Neil Shah, M.D., Ph.D.,
and Charles Sawyers, M.D., of the Howard Hughes Medical Institute at
the University of California, Los Angeles, and Ambit Biosciences. The
study describes the crystal structure of VX-680 bound to the
catalytic domain of BCR-ABL containing a mutation that causes Gleevec
resistance but is inhibited by VX-680 in vitro. The paper also
demonstrates that VX-680 inhibits BCR-ABL activity in cells derived
from patients carrying the T315I mutation and that it retains
activity against T315I in vitro. VX-680 is currently being evaluated
in a Phase 1 clinical trial for cancer by Vertex Pharmaceuticals and
Merck.
About Ambit Biosciences
Ambit Biosciences is a privately-held biopharmaceutical company
engaged in the discovery and development of small molecule kinase
inhibitors for the treatment of cancer. Ambit plans to initiate
clinical trials for oncology in 2006. Ambit's proprietary kinase
screening technology, designed to expedite the drug discovery and
development process, has been validated through collaborations with
Roche, Bristol-Myers Squibb Company, GlaxoSmithKline, Pfizer and
others. Ambit has raised a total of more than $50 million from
investors including Perseus-Soros Biopharmaceutical Fund, Forward
Ventures, Roche Venture Fund, Avalon Ventures, GIMV NV, MDS Capital
and Genechem.

Hi Emily,
Nice to see you posting again.
A hearty congratulations to you on the new addition. You wouldn't happen
to have a photograph of Brianna that you would like to share with us?
LOL
Zavie
PS You are #226 in the Zero Club.

Hi Tracey,
Since I have been on Gleevec, my heart rate runs between 95-110, and I
have even checked it at 125. Not sure if it is Gleevec or not, but
wasn't like that before.
Amy B.

Everytime I eat one I throw-up. Doc says that the liver enzimes that
break down the fruit also break down gleevec so when you eat the fruit
your liver makes more enzimes to break it down and so there are more
enzimes in the system to break down the gleevce... causeing me to get
a bigger dose of the gleevec than I would normaly absorb.
GARP! lol
:) It sounds like the doc knows what he's talking about.
Emy G

Good morning everyone,
I'm not new to the cancer, I was diagnosed in Sept of 01, but I AM a
new mom. YaY!
I was sitting here thinging today that I haven't had contact with
any of my groups for litteraly years and my ego and pride in my new
little girl prompted me too find a group.
For us good news and hope should be shared! I just happen to have
some to share. :P
I've been on gleevec for three and a half years,BRCA/ABL at 0 for
three. I got preggers 'cause I was lazy and didn't get a birth
control renewal fast enough about this time last year.
Early March I found out I was preggers, I was taken off the gleevec.
This November Brianna was born, alittle early but bright, healthy
and happy.
My BRCA/ABL stayed at 0 and 1 counts the entire time. I breast fed
her for two and half months but caution is haveing me start the
gleevec again this month soi she's on formula now.
So that is my ego boost as I brag of my little one and I hope that
if any of you were feeling cruddy today that it helps.
There is always hope and there is always new life!
Emy G

ER can cause alot of stress lol
I remember my first bonemarrow biopsy and what I had to base my
expectations of it on.
On ER they had this kid... Scared out of his mind and when
the "biopsy" took place. Doc handsome seated in a chair by the kids
side, no masks or equipment beyond a blood draw needle and gloves,
nurse cutie pie holding the kids hand and no Lab tec or tray in
sight.
Doc handsome, cool and still seated, did the stick and the kid
screamed and thrashed like he was a calf getting branded.
I don't know about you all... but my bone marrows have ALWAYS been
well numbed-up affaires where I'm offered all sorts of neat happy
drugs and the Doc is suited-up as if for a minor surgery and
sweating by the time he's cork-screwed a hole into me. Never any
real pain... Some poor soul I KNOW saw that episode and freaked
when they had their first one only to be, like me, happily
dissapointed.
Emy G

Hi Everyone,
Has anyone been diagnosed with tachycardia (fast heart rate) since
being on Gleevec?
I have my doubts that Gleevec is causing this because I hate to blame
everything on Gleevec so I thought I'd ask if anyone else experienced
it. I never had any problems prior to Gleevec but then again, I never
had any problems during the first couple of years on Gleevec either so
I wonder why now.
Take care,
Tracey

Hi Amy
I have been reading about Stephen recently and we keep him in our
prayers.
Love
Annette

Hi Jackie
It is my husband, Rich, who has cml, so obviously no problems with
periods...... however, we know many female cml'ers and a great
number of them report period changes... either stopping altogether
or getting much heavier and more frequent.
God bless,
Annette

Hi K
I believe you have to have a pre-disposition in your cells for any
sort of cancer to develop, but am convinced Benzene is responsible
for the development of Rich's cml.... He has worked as a motor
mechanic since a few years after leaving college... the last 24
years running his own garage.... so always around the nasty stuff.
Love
Annette x

Hello,
My sister was diagnosed with CLM last February. She is a member of Kaiser
Senior Advantage.
When she went to pick up her monthly supply of Gleevec last week, her bill
was not $30.00 but $440.00 and will cost $3600.00 a year! Gleevec is not
going to be covered in the new Medicare
plan. Has anyone else had to face this costly realization?
Thanks, Jan

Stephen is in the hospital again and could sure use some extra
prayers. Here is his Caringbridge site:
http://www.caringbridge.org/tx/stephenthompson/

Hey Annette & Group:
I have missed seeing your posts, as always Richard & you are in my prayers,
but I will be saying Xtra special ones at this time.
Regarding the CML & Heredity, I believe our 'gene pool' plays a very important
part; as cancer will 'run in a family'. In addition relatives also maintain
similar diet and overall lifestyle predisposing us to the same illnesses and
diseases. As a teenager when questioned about associates, my cousin would always
remark 'I can pick and choose my friends, but I'm stuck with you guys.
"K"
"I AIN'T FINISHED YET"!!!

Hello All,
The final details are being put together for a meeting in Montreal, on
January 28th and Toronto on January 29th with a complete agenda being
available shortly.
The meeting in Montreal will held at the Royal Victoria and will be chaired
by Dr. Pierre Laneuville and co-chaired by Suzan McNamara and me.
The meeting in Toronto will be held at the Princess Margaret Hospital and
will be chaired by Dr. Jeff Lipton who will be joined by Dr. Susan
Kamel-Reid and co-chaired by Anita (a CML patient in Toronto) along with
Suzan McNamara and myself.
Save the date and stay tuned.
Cheers,
Cheryl-Anne

http://ajrccm.atsjournals.org/cgi/content/full/171/1/35
Original Article
Treatment of Cockroach Allergen Asthma Model with Imatinib Attenuates
Airway Responses
Aaron A. Berlin and Nicholas W. Lukacs
Department of Pathology, University of Michigan Medical School, Ann
Arbor, Michigan
Correspondence and requests for reprints should be addressed to Nicholas
W. Lukacs, Ph.D., University of Michigan, Pathology, 1301 Catherine St.,
Ann Arbor, MI 48109-0602. E-mail: nlukacs@...
In the present study it was determined whether a pharmacologic approach
to blocking receptor tyrosine kinase-mediated activation during allergic
airway responses could be beneficial. To examine these responses,
allergic mice were given a single oral dose of imatinib at clinically
relevant concentrations, ranging from 0.05 to 50 mg/kg, by oral gavages
just before allergen challenge. The reduction in the allergen-induced
responses was significant and centered on reducing overall inflammation
as well as pulmonary cytokine levels. In particular, the treatment of
the mice with imatinib significantly attenuated airway hyperreactivity
and peribronchial eosinophil accumulation, and significantly reduced Th2
cytokines, interleukin-4 and interleukin-13. In addition, chemokines
previously associated with allergen-induced pulmonary disease, CCL2,
CCL5, and CCL6, were significantly reduced in the lungs of the
imatinib-treated animals. Together these data demonstrate that the
pharmacologic inhibitor imatinib may provide a clinically attractive
therapy for allergic, asthmatic responses.
The identification of effective therapy for patients with
moderate-to-severe asthma has been relegated in recent years to
developing more efficient delivery of steroids to the airway (33, 34).
These nonspecific compounds decrease the production and release of a
wide array of immune/inflammatory mediators and significantly limit the
effect of the overall immune response. However, the ability to
specifically block certain critical activation pathways utilizing
signaling blockades may prove to be beneficial to alleviate long-term
chronic responses. In the present studies, on the basis of previously
published data from our laboratory and others (23-25, 27, 32), we
initiated an analysis of whether we could alleviate responses in our
preclinical model of cockroach antigen-induced asthma by blocking
receptor tyrosine kinases related to c-kit. Imatinib has been shown to
inhibit the c-kit and PDGFR activation pathways as well as arginine
kinase pathways, but not other receptor tyrosine kinase pathways
examined (18, 35). The data from the present study have been striking,
as not only was the development of AHR significantly reduced, but also
the inflammatory response was nearly abrogated. In particular, the Th2
cytokines that dominate the allergic airway responses were reduced in
the lung postchallenge. Although it is not clear which specific tyrosine
kinase pathways were altered with imatinib, these studies demonstrate
that this approach and, more importantly, this drug may provide a viable
therapeutic option for blocking certain aspects of asthmatic responses.
However, further studies also found that although AHR and inflammation
were reduced after a single treatment of allergic mice with imatinib,
neither serum IgE levels nor airway mucus expression were reduced,
indicating that not all aspects of chronic asthma are alleviated. This
latter issue will surely need to be addressed in additional studies
focused on longer term treatment with imatinib during the development of
allergic airway responses.
A striking aspect of these studies is the reduction in eosinophils
within and around the airway. Recent studies in patients with
hypereosinophilic syndrome have established a role for imatinib in the
reduction of eosinophil numbers and the associated pathophysiology of
this often devastating disease (19-21, 36-42). Although it is not
completely clear by what mechanism imatinib is operating during
hypereosinophilic syndrome, it has had an extremely beneficial effect in
a significant number of patients related to a mutation in PDRFR-{alpha}
(37, 38). The data from the present studies suggest that imatinib may
have an overall effect on the immune/inflammatory response during
antigen-specific reactions. Others and we have established that
inhibition of SCF in the airways of allergic mice can significantly
attenuate the inflammatory/immune responses (23-25, 27,