CML

Most people with cml did not know they were sick....it was often discovered
with a routine blood test. They can be pretty sure from the blood test that
it is cml......but it takes a bone marrow biopsy to confirm it (to actually
see the chromosomal change, the Philadelphia chromosome).
Most of us are dx in the chronic phase. Those who have had symptoms for
some time, like night sweats or fatigue, are sometimes in accelerated phase.
Gleevec is a 'home run' of a cancer drug....this is actually what Dr.
Druker (who developed Gleevec) told a TV news program in the early days!
You will find lots of information and support on this list....
and also at www.newcmldrug.com
Best wishes,
Nancy C.
Eugene, Oregon

The fall 2006 issue of cure magazine lists a website for Noavartis
that is new, at least to me.
http://www.livingwithcml.com/index.jsp
It seems to be very informative and could be very good for the newly
diagnosed as well.
John

Medicare Insurers to Offer More Options in '07
By ROBERT PEAR
Published: October 1, 2006
WASHINGTON, Sept. 30 Medicare beneficiaries will have access to more
options for prescription drug coverage in 2007, with many insurers
offering better value and a larger number of medications, the Bush
administration said Friday. But the potential for confusion may also
increase.
The administration said beneficiaries who were satisfied with their
current drug coverage would not have to do anything when the six-week
open enrollment period begins Nov. 15. Consumer advocates, however,
said beneficiaries should carefully review the options because prices
have changed, often by significant amounts.
Insurers can begin marketing their 2007 options on Sunday.
The drug program got off to a chaotic start in January. But the Bush
administration, realizing that health care could be a potent issue for
Democrats in midterm elections this fall, appears to have solved many
of the biggest problems.
Many experts had predicted a shakeout in the market for drug coverage,
which is offered through dozens of private insurers subsidized by the
government. But it did not occur.
In most states, Medicare beneficiaries had a choice of slightly more
than 40 free-standing drug plans this year. In 2007, every state but
Alaska and Hawaii will have more than 50 drug plans, and 23 states
will have 55 or more.
The number of national drug plans offering coverage in every state
will rise to 17 next year, from 9 this year. In New York, 61 drug
plans will be available, up from 46 this year.
John K. Gorman, a former Medicare official who is now a health care
consultant, said, "Over all, Medicare beneficiaries can expect to see
low drug premiums and higher levels of benefits."
To support the assertion that drug plans will offer better value,
Medicare officials said the average premium for drug coverage next
year would be $24 a month. That is the same as this year and 40
percent less than first estimated for 2007. But, the officials said,
the average number of drugs covered by insurers will increase by 13
percent, to 4,390 next year.
Monthly premiums in 2007 will range from a low of $9.50, under a drug
plan offered by the HIP Insurance Company of New York, to a high of
more than $110 under plans offered by Sierra Health Services in New
Jersey and some other states.
Francis B. Olsen, senior vice president of HIP Insurance in New York,
said his company was now charging $40.70 a month for "virtually the
same coverage" that would cost $9.50 a month next year. Clearly, he
said, "it will be a better bargain for beneficiaries." Humana has the
lowest premium this year: $1.87 a month in a seven-state region that
includes Iowa, Minnesota and North and South Dakota.
The number of drug plans available in 2006 and 2007 far exceeds what
members of Congress expected when they created the program three years
ago. The existence of so many plans provides some evidence to support
the theory that the federal government can stimulate fierce
competition among private insurers regulated and subsidized by the
government to help control health costs for beneficiaries and taxpayers.
"As a result of robust competition and smart choices by seniors, plans
are adding drugs, removing options that were not popular, and
providing more options with enhanced coverage," said Dr. Mark B.
McClellan, administrator of the Centers for Medicare and Medicaid
Services.
But Deane R. Beebe of the Medicare Rights Center, a counseling and
advocacy group, said beneficiaries should not be lulled into complacency.
"Your drug plan might have worked for you this year, but you can't
assume that it will be affordable or cover the drugs you need next
year," Ms. Beebe said. "You should go back to the drawing board to
determine whether your current plan or another one would best meet
your needs."
Congress defined a standard benefit, which includes a significant gap
in coverage, also known as a doughnut hole. Medicare officials
encouraged insurers to help close the gap in 2007, and many companies
responded. For premiums ranging typically from $40 to $50 a month,
beneficiaries can enroll in plans that provide extra benefits,
including coverage in the gap for generic and sometimes for brand-name
drugs.
While many companies are in the market, enrollment is concentrated in
drug plans offered by just a handful of companies. Two companies,
UnitedHealth and Humana, attracted almost half of the people in
prescription drug plans this year, but that could change.
Humana, which offered the lowest premiums in many states this year, is
raising some of its charges in 2007, and other companies have cut
their premiums to compete more effectively.
To illustrate the need for caution in the marketplace, Ms. Beebe
pointed to changes in the most comprehensive plan offered by Humana.
In New York, the premium for this plan, known as Humana Complete, will
be $82.10 a month in 2007, up from $47.93 this year. But the plan,
which covers both generic and brand-name drugs in the gap this year,
will cover only generic products in the gap next year, according to
data provided by the government and the company.
Thomas T. Noland Jr., a spokesman for Humana, said other companies
were lowering their premiums "in response to our leadership."
Even though UnitedHealth often charged higher premiums than other
insurers this year, it won many subscribers because it had a product
endorsed by AARP, the lobby for older Americans. UnitedHealth offered
one drug plan under the AARP name this year, but in 2007, it will
offer three, including a so-called saver plan priced below the
cheapest Humana plan in several states.

Jean-
I have been diagnosed since May 05 and I am on Gleevec 600mg daily. Yes, I
too have the neuropathy that you mentioned. My legs go to sleep the longer I
sit and I often have "sleeping" arms and legs at nighttime when I lay down. I
have slept on my side and have woken up with that side of my face and arm to
the side I am sleeping on asleep. I also get the tingling in my hands during
the day.
My biggest problem besides the flair ups of gastritis is the fatigue and bone
pain in my legs.
Thanks for allowing my to vent.
Jennifer
Las Vegas
34 mother of 3 (10, 7,5)

Hi to all!
My husband was told 10 days ago that he likely has CML (routine bloodwork with a
new GP
revealed high levels of WBC and various differentials) He goes for the BMB next
week so we
will know for sure what the deal is then. It feels a little unbelievable as he
is the healthiest
guy I know- he is crazy athletic, and never seems tired or anything.
My questions are-
Is it normal to feel so totally healthy and have CML? - Does that mean its in
the chronic
phase?
What else could it be? I mean, the hemotologist said they have to diagnose it
this way- what
would he have if it wasn't CML? We read about Gleevec and are so excited at the
results in
patients.
Thanks so much in advance- I am trying to read up on everything but find it very
particular to
each person and how they tolerate the drugs, and overall health I suppose..
Have a wonderful day everyone!
Shalyn

Chat Reminder - Saturday 9:00 AM Eastern
Zavie in Avonlea PEIDSC_3277.JPG
Cavendish, PEI DSC_3291.JPG
PEI DSC_3342.JPG
Coffee Break on the Ferry DSC_2931.JPG

Hi
I am new to this group and would like to know does anyone have numb
toes and a tingling sensation in your hand and ankles. I have had cml
since jan. 2003 and have been on gleevec 400 mg. since my diagnosis.
Thanks for all the info from everyone.
Jean

Hi Jean,
I was on Gleevec for about 5 years and I did not have any peripheral
neuropathy with that drug, but others have posted that they did. I am now
on Sprycel (the 2nd generation 'gleevec') and I do have some neuropathy,
mostly fuzzy feeling toes and sometimes tingling on the top of my feet and
into the ankles...........but this is ALL much better with the alternative
supplements that I take. My onc is Dr. Druker at OHSU and he has no problem
with what I do with either Gleevec or Sprycel....it does not interfere.
Here is a tea that is good for nerves. Try to get organic bulk tea
leaves.....50% chamomile and 50% oat straw (also called aveno)......steep
for 15-30 minutes and drink. I like it both hot and cold.
The other thing is a supplement.......300 mg alpha-lipoic acid. This is a
known treatment for diabetic neuropathy.....the dose can be 300-600 mg. It
is generally a good supplement to take....a good antioxidant, good for
blood glucose, etc. This was also approved by OHSU. I think this is what
has made the most difference for me.....when I skip it for a couple days,
my symptoms are more noticeable. Don't expect your western medicine doc to
know much about this....it is not on their radar screen. I am treated by a
naturopath with an oncology background.
If you try either of these, let us know if it makes a difference for you.
Nancy C.
Eugene, Oregon
treated at OHSU

Hello All,
Just a quick note to let you know that in spite of Toronto traffic and
holding this talk on a work day the turn out was quite good!
We were about 20 to 25 patients at one time.
I will not share all of my notes until after Dr. Giles speaks in Montreal,
but I will share this:
Dr. Giles mentioned a cure and gave a definition - he and his fellow
colleagues define the word cure as "eliminating the disease without on
going drug therapy".
Does he think we will see this in our lifetime? Yes, he does, and probably
sooner than later.
He reminded us that there are many people, people we don't even know about
who are working to find a cure.
That was the most positive aspect of his talk!
See you in Montreal!
A big thank you for the patients and their carers who came forward to be
part of the patient advisory board of the CML Society. The meeting in
January will be quite exciting.
Cheers,
Cheryl-Anne

Congradulations, this is strange thing, but for sure excellnet.
jamal

Cancer Drug May Be Remedy for Rheumatoid Arthritis, Stanford Study Finds
Thursday September 28, 12:29 pm ET
STANFORD, Calif.--(BUSINESS WIRE)--The potent cancer drug Gleevec,
used to combat leukemia and some gastrointestinal cancers, may be
useful in treating rheumatoid arthritis, according to a team of
researchers at the Stanford University School of Medicine. Their
findings will be published in the October issue of the Journal of
Clinical Investigation.
Although the study shows that Gleevec worked well in mice, the
researchers cautioned against doctors using Gleevec for treating
rheumatoid arthritis until clinical trials are completed demonstrating
its effectiveness and safety for people with the disease.
Rheumatoid arthritis is a painful, chronic autoimmune disorder,
characterized by inflammation of the lining of the joints. It affects
more than 2 million Americans; up to half of those with the disease
are disabled after 15 years due to disfigured joints. Standard therapy
for rheumatoid arthritis now includes agents that suppress the immune
system, but many patients do not benefit from such treatments. They do
not get adequate reduction in the symptoms and signs of disease; they
may also continue to have damage to their joints or develop side
effects that make continued use of such therapies impossible. Thus,
new approaches are needed.
Bill Robinson, MD, PhD, assistant professor of medicine and the
study's senior author, led a team that set out to find drugs that
might provide additional benefit to rheumatoid arthritis patients.
They screened a range of drugs in mice that have a condition similar
to human rheumatoid arthritis.
Ricardo Paniagua, an MD/PhD student and the study's first author,
explained that they looked at every drug approved by the U.S. Food and
Drug Administration, considering which ones might modulate the immune
system and thus be effective in combating an autoimmune condition,
regardless of the drug's FDA-approved use. Paniagua chose several
drugs to test, including an antihistamine, a platelet modulator and
other approved drugs with known effects on cells of the immune system.
"It was the combination of rational selection and serendipity that we
found that Gleevec worked better than anything else," said Paniagua,
who works in Robinson's laboratory at the Geriatric Research,
Education and Clinical Center of the Palo Alto Veterans Affairs Health
Care System.
In their study, Gleevec almost completely prevented the development of
the rheumatoid arthritis-like disease in the mice. The drug also
halted the progression of established disease, significantly reducing
the amount of inflammation and bone destruction around the joints. The
researchers also tested Gleevec on the cells of human rheumatoid
arthritis patients and found that it reduced the processes associated
with inflammation and abnormal growth in the joints.
Gleevec is the brand name of imatinib, a drug produced by the
pharmaceutical company Novartis AG. It is part of a class of drugs
called kinase inhibitors, which act by blocking communication signals
between cells. These signals, when they go awry, are often at the root
of diseases such as cancer and autoimmune conditions.
Gleevec targets kinase gene mutations seen in chronic myelogenous
leukemia or CML (a bone marrow cancer) as well as certain types of
stomach cancers. The same kinases turn out to play a critical role in
rheumatoid arthritis.
Robinson said that the field of autoimmune disease research has been
trying to develop kinase inhibitors for more than a decade. "We were
very surprised that Gleevec worked as well as it did," said Robinson.
"It just seemed too simple." The results are especially encouraging
since the drug is already FDA-approved, and has relatively few side
effects. None of the authors in the study has any affiliation with
Novartis.
"We have taken a very potent kinase inhibitor and discovered that it
works very well for an autoimmune disease," said Robinson. "The
significance is twofold. First, it might provide insights into the
mechanisms underlying rheumatoid arthritis by figuring out what
Gleevec inhibits." Second, he added, it might represent a new
therapeutic approach to rheumatoid arthritis and other autoimmune
diseases. The kinases the drug inhibits likely play a role in other
autoimmune diseases, such as scleroderma, psoriasis and inflammatory
bowel disease.
Gleevec's potential in humans is buoyed by two published case studies
of rheumatoid arthritis patients with CML; both experienced
significant improvements in their arthritis symptoms after taking
Gleevec to treat their cancer. In addition, there has been a published
case study of Gleevec alleviating psoriasis in a cancer patient.
Robinson said he hopes that in the near future, clinical trials will
be conducted that look at the drug's effectiveness for a range of
autoimmune diseases.
Others who contributed to the study are associate professors of
medicine Mark Genovese, MD, and Paul Utz, MD; professor of orthopedic
surgery Stuart Goodman, MD; assistant professor of pathology John
Higgins, MD; professor of neurology and neurological sciences and of
pediatrics Lawrence Steinman, MD; research associate Peggy Ho, PhD;
research assistants Orr Sharpe, MS, and Beren Tomooka, MS; MD/PhD
student Steven Chan; medical fellow Jason Song, MD; Stanford
undergraduate Anna Chang, and visiting undergraduate Fiona Thomas.
Stanford University Medical Center integrates research, medical
education and patient care at its three institutions -- Stanford
University School of Medicine, Stanford Hospital & Clinics and Lucile
Packard Children's Hospital at Stanford. For more information, please
visit the Web site of the medical center's Office of Communication &
Public Affairs at http://mednews.stanford.edu.
NOTE: Reporters may download a copy of the paper, which has been
posted in advance of publication, by visiting http://www.jci.org and
searching the site using the term "imatinib mesylate."
Contact:
Stanford University Medical Center
Mitzi Baker, 650-725-2106 (Print Media)
mabaker@...
M.A. Malone, 650-723-6912 (Broadcast Media)
mamalone@...
Source: Stanford University Medical Center

I, too, have periods of dizziness & light headedness. Thought I
was just becoming a dizzy broad in my old(er) age. I think it has
to do with water buildup in my ear canals -- head edema from the
Gleevec. My primary care doc and my oncologist don't seem to be as
concerned as I am, however, and I'm thinking about seeing a
head/nose/throat doctor.
Kathy

Hello All,
I am looking forward to meeting up with the Toronto CML Patients later today
at the Dr. Giles talk in Toronto.
It is nice to know that so many people will be attending as I will have a
special request to make. The CML Society is preparing to set up a patient
advisory board and we would like patients form every province in Canada to
be represented. The advisory board will be responsible for helping to
determine the direction of the CML Society in the future with regards to our
objectives and educational programs. The patient advisory board will be
assisted in their work with the medical/scientific advisory board which will
include key CML doctors from across Canada (we do have more than a few
experts here, there are close to 3,000 CML patients in Canada and counting).
We will also be asking for patients to join the patient advisory board at
the Montreal meeting as well, so stay tuned.
See you later on today:
Toronto location and time:
September 28, 2006-at the PMH, Princess Margaret Hospital-Room 605, 7th
floor
3:30 PM-5:00 PM

Hi Yusuf,
Often when someone has this kind of change early on (like at 6 months) it
may mean that you have a mutation to treat. Here is how it happens.....the
Gleevec kills off all the typical cml ph+ cells and then you are left with
just the 'abnormal, mutated' cml cells and they are uncontrolled by
Gleevec....so the WBC count would then increase.
Where are you treated? what you need is a mutation test, which is done
mainly at research centers, so they can determine if and what mutation you
have. The new drug Sprycel (BMS) will treat most of the mutaitons. There is
one mutation (T-315I) that is harder to treat.
There scenario might not be what is happening to you......but it needs to
be checked out.
My best wishes to you. Let us know what your doctor is suggesting.
Are you in the US and can you get to one of the cml specialty centers (like
OHSU, MDACC or UCLA among others).
Nancy C.

Hello to all;
I'm using Gleevec for 6 months. Everything was ok. My blood counts were
normal, my PCR was 0.0068 three months ago. It was 0.145 when i was diagnosed.
Today i went to the hospital for the 6th month tests. Doctor took sample from
my bone marrow and wanted blood test. I've just learned the blood test results
and i'm totaly shocked.
WBC= 27.7
PLT=101
others are normal
What does that mean? Did i loose my Gleevec option? Should i begin to look for
a donor for the transplantation? I'm really afraid, and waiting for your
answers..
Thnx..
Yusuf Cipe
Dx 01/03/06
400 mg gleevec

Check out Dr. Mauro's message on Erin Zammett's blog in Glamour
Magazine.
http://www.glamour.com/lifestyle/blogs/editor
Zavie

Dear Rolf,
I'm so sorry to hear of Peter's passing. I have removed his email
address from the group. May you soon find peace.
Tracey

Hey, Welcome to the group. (but Sorry your here)
I know you are getting great information from these people on this site that
have walked in your shoes. This diagnosis kind of whacks you upside your head
and turns your life upside down. At least in the beginning. Please
understand that once the dusts settles, you will be living, some what, of the
same
life as before, minus a few side effects depending on your individual effects.
I was 33 last year and the mother of 3 small children when I was diagnosed.
This was life changing for us. Everyone has to go through some sort of
griefing process as you learn all you can about your situation.
I too had the elevated white blood count and an enlarged spleen. I went in
with ankle pain and came out with CML. Go figure!
I was told I had 3-5 years to live. I fired that doctor and found a doctor
who specialized in Leukemia. I too took hydrea and am now on Gleevec 600 mg
daily, ($4700 monthly) soon to go to 800 mg, just waiting my most recent PCR
results.
If I can tell you the most important things I have found, educate yourself,
find a top Leukemia doctor and most of all keep your faith, hope and a POSITIVE
attitude!
This will most likely be a chronic condition like diabetes for you, instead
of a fatal disease.
Better days ahead-
Jennifer
Las Vegas
34, wife and mom to 3 (10, 7,5)
CML 5/13/05
Gleevec 600mg daily

Chat Reminder Saturday 9:00 AM
I will not be participating, Zavie

Hi all. I continue to experience bouts of dizziness on Gleevec too. I
have heard that others 'enjoy' the same symptom. It comes and go's
however, I have developed a fear of high stairs due to the dizziness. I
feel very unsteady and unbalanced. Hope this resolves itelf for you!
Barbara Heathcote
bheath@...

Thank you for reading my CML encounter and your kind words. I now
know I am not the only one who is dealing with this disease. I just
saw my Oncologist this morning. He is very happy with my blood test.
My counts are within the normal range. But liver test is okay (sounds
like it should be better). Since I have been taking Gleevec for 3
weeks. He is extremely happy with the result. But it may take some
time to see if the drug actually works on me. I asked him what the %
leukemic cells at diagnosis. It was 96%. That's pretty high.
It was a very good doctor visit. It brightened my day.
Thanks for you all replied to my email.
SHY

This sounds like low blood pressure to me. I get the same thing
occasionally. Do you know what your BP is? I've had mine go as low
as 90/50 at the doctor's office so I can only imagine how low it goes
when I'm sleeping or sitting quietly at home.
Tracey

Hi,
If you have some anemia, this could contribute to you getting light headed.
Also, changing positions from lying to standing also contributes. It would
be better in the middle of the night to first sit on the edge of the bed
for a couple of minutes to allow your blood pressure to adjust to the
position change before standing up. And at night, you might want to pee
from a sitting position?
Nancy C.

Hello Shy. I was diagnosed August 3, 2005 with CML I had turned 37 a month and
a half prior to this. I couldn't believe that I had cancer either, I was too
young. In the past year I've had a lot of ups and downs. When I first started
taking gleevec for the first 3 weeks I had flu like symptoms about an hour after
I would take my 400 mgs. I learned to take motrin with it and I was fine. I
lived on motrin for quiet some time for the pain, I just ached all over,
especially in my breast bone. I had broken it 19 years ago in a car accident
and the pain always seemed to go to that spot (strange). I respoded well to the
gleevec, brining my white count down and my huge 22cm spleen almost shrank back
to normal size (it took until June 2006 for it to completely go to normal size).
By November my FISH showed that 3.4% of my cells were leukemic, (98% at
diagnosis) but I became neutropenic so my doc took me on and off the 400 mgs.
So by the middle of December I was freaking
out because I hadn't been on the med because he was waiting for my white count
to rebound. So he put me on 300 mgs a day and my counts started to go up. So
in January he put me back on regular dose of 400 mgs and they started to fall,
so he had me take 400 mgs every other day. My counts started going up, but so
did my platelets. The hospital that I go to hadn't been faxing my weekly labs
to Mayo clinic like they were suppose to so out of the blue in February my Mayo
doc called me and told me she hadn't seen any result since November, could I fax
them to her. Well, I did and she was so freaked out at my platelets being so
high that she wanted me to have another bmb so by the time I got this scheduled
it was March. My FISH at that time showed 28% so we started the 400 mgs every
day, I had another FISH in May and it showed 68% so we started me on 600 mgs for
a week to see if I could tolerate the med, I did as far as the neutropenia was
concerned so I then started 800
mgs a day by June. At the end of June my FISH showed 26%, July it was 12.4%,
August 8.6%, September 3.8%. I'm scheduled again October 4 for my next one. My
counts look good except for the neutropenia. I've been averaging a neulasta
shot once a month, but the last couple of months my hemoglobin level has been
kinda low too, this hasn't happened since before I was first diagnosed, so I
don't know what's going on with that, I need to ask my doc. So, as you can see
there's been a lot of ups and downs with me. I just finished reading My
So-Called Normal Life by Erin Zammett. I wish I could have read that book when
I was first diagnosed, maybe I wouldn't have felt so "Crazy"! Hang in there,
things will be fine. It's taken me over a year to feel that way!
Sheila
dxed 8-05
800mgs gleevec
Hi,
My name is SHY(my initials) living in Cleveland area. Just learned
that I have CML last month. Right now, I am on 400mg Gleevec(4 100
mg). I have been doing good with Gleevec with very little side
effects like bone pain and tiredness. Alot better than I was on
Hydrea. My spleen still tendered and ached sometimes. But it comes
and goes. I would like to share my story with you on how I found
out I have CML. Sorry for the lengthy story.
SHY

Hey SHY, fellow Clevelander here. CML definitely doesn't look at age
or health in who it picks. I'm 33, never smoked, excercised and been
active my whole life and it picked me. I was dx'ed in July, my spleen
was HUGE. You aren't alone.
Having the Gleevec option is truly a blessing for us. Not to mention
the great drugs on the horizon that are even more effective. We have
lots of options. I don't plan on going anywhere or changing a thing.
Sure there are some discomforts, but you can't let it get you down.
The mind and Gleevec are a powerful combo.
Check my blog when you get a chance, I've written how I found out...
http://strengthtoday.blogspot.com
James

The other night I woke up in the middle of the night to pee. As I stood
there I started to get light headed and before I knew it I was laying
on my back on the floor. I just blacked out for a couple seconds.
I've felt mild dizziness when standing up quickly and have felt
slightly light headed getting out of bed in the middle of the night
before.
Is this something to worry about?

I thought I'd chime in on the weight issue too. When I was put on
Gleevec 4.5 years ago, I had an appetite to choke a horse. I gained
40 pounds and enjoyed everything I put in my mouth.
About two years ago, I was tired of being fat so I joined Weight
Watchers and lost the weight. It took a lot of effort but I managed
to do it.
Now that I've switched over from the capsules to the pill, my
appetite has taken a sharp dive, I'm nauseous most of the time and
with no effort, I've lost 10 pounds in the last month. I have to
force everything in my mouth, nothing tastes like anything and for
the first time im my life and I can say that I'm eating to survive,
not surviving to eat. I suppose that is a good thing but, I find
the pendulum has swung too far back in the other direction now.
I suppose like all the other side effects, it's a small price to pay
to stay alive but I do worry sometimes about getting all the
nutrients I need when I can't put anything in my mouth without the
threat of vomiting.
Tracey

Hi,
My name is SHY(my initials) living in Cleveland area. Just learned
that I have CML last month. Right now, I am on 400mg Gleevec(4 100
mg). I have been doing good with Gleevec with very little side
effects like bone pain and tiredness. Alot better than I was on
Hydrea. My spleen still tendered and ached sometimes. But it comes
and goes. I would like to share my story with you on how I found
out I have CML. Sorry for the lengthy story.
SHY

Chris,
I just had a bone mass density test done and the results weren't
terrific. I have lost weight and of course that makes you even more
fragile. Since we have a disease of the bone marrow I guess it makes
sense that the disease doesn't promote good bone growth. I try to
take into account age as I just turned 60. However no one should have
to be (constantly) concerned about broken hips etc. at that age. I
keep active and whatever will be, will be. I did give up downhill
skiing though when I got CML a few years ago.
Wayne

Hi:
I had quite a painless bmarrow test yesterday. However, I did glance
at the blood test, and the platlets continue to fall, now at 44000, and
lymphocytes way low about.68 or something like that. Does anyone know
why this would be happening? I have called the doc aobut further
clarification.
I'm black and blue in so many places from nothing. The Aranesp seems
to be helping the red blood, hgb, and so on. I have to go back on
Friday to see if I need another shot or not.
Thanks so much, Sincerely MJH

I just wanted to ask if anyone could remind me about the issue with CML,
gleevec, and broken bones. I recall vaguely some past discussions/comments
about this, but I can't remember what was said.
I was dx dec 03, remission june04 and in the past two years have had three
broken bones. Prior to my diagnosis I never had any breaks.
Any thoughts on this?
chris in Minn

http://today.reuters.com/news/articleinvesting.aspx?view=CN
<http://today.reuters.com/news/articleinvesting.aspx?view=CN&storyID=200
6-09-19T054732Z_01_L19714190_RTRIDST_0_HEALTH-NOVARTIS-UPDATE-1.XML&rpc=
66&type=qcna
&storyID=2006-09-19T054732Z_01_L19714190_RTRIDST_0_HEALTH-NOVARTIS-UPDAT
E-1.XML&rpc=66&type=qcna
Tue Sep 19, 2006 1:47am ET253
Novartis's Glivec gets new EU leukaemia approvals
ZURICH, Sept 19 (Reuters) - Novartis (NOVN.VX:
<http://today.reuters.com/stocks/overview.aspx?symbol=NOVN.VX&WTmodLoc=I
nvArt-C1-ArticlePage1
<http://today.reuters.com/stocks/CompanyProfile.aspx?symbol=NOVN.VX&WTmo
dLoc=InvArt-C1-ArticlePage1
<http://today.reuters.com/stocks/ResearchReports.aspx?symbol=NOVN.VX&WTm
odLoc=InvArt-C1-ArticlePage1
treatment had received additional EU approvals to help patients with a
rapidly progressive form of leukemia as well as a hard-to-treat solid
cancer tumour.
Glivec has now received European Union approval for use in adult
patients with newly diagnosed Ph+ acute lymphoblastic leukaemia (ALL) in
combination with chemotherapy.
It also has approval as a single agent for patients with relapsed or
refractory Ph+ ALL, Novartis said in a statement.
The EU also approved Glivec for treatment of adult patients with
unresectable, recurrent and/or metastatic dermatofibrosarcoma
protuberans (DFSB) who are not eligible for surgery.
DFSB begins as a hard lump found in the skin of the chest, abdomen or
leg and progresses to invade nearby tissues.
The approval was expected, as the European Medicines Agency had already
given the drug a positive opinion as a treatment for the rare tumours.
Glivec, or Gleevec as it is known in the United States, was was approved
five years ago for patients with chronic myeloid leukaemia (CML) and has
grown to be Novartis's second-biggest selling product, with sales last
year of $2.2 billion.
The drug has transformed life expectancy for people with CML and a type
of stomach cancer called GIST. Five years of use shows patients taking
Glivec have a 90 percent survival rate.

Margot thought that this would interest you.
* * *
~ PERSONAL MESSAGE FROM Margot ~
Interesting development in cancer treatment.
* * *
~ FROM WEBMD HEALTH ~
Cancer Deaths Continue to Drop
Fewer Americans are dying of cancer, even though the number of people being
diagnosed with the disease remains the same, according to the latest figures
from the nation's top cancer groups.
Click here for more: http://www.webmd.com/content/article/127/116586.htm
* * *
~ LEARN MORE AT WEBMD ~
We invite you to visit WebMDHealth, designed to help you and your family
enjoy healthier lives.
At WebMDHealth you'll find instant support and feedback for your health
concerns, Live Events and Chat hosted by Medical Experts, the latest
Medical News and more! Visit us online and become a member of the WebMD
community! http://www.webmd.com
WebMDHealth is committed to your privacy. For more information please
visit - http://www.webmd.com/about_webmd/privacy.htm
WebMD's Address:
WebMD Inc., c/o WebMD Office of Privacy, 1175 Peachtree Street
100 Colony Square, Suite 2400, Atlanta, GA 30361

Hi,
Hi I had the same issue about 1 1/2 years ago. I went in with a
lump in my left breast and the doctor, was in no hurry, to test it.
So what did I do, I went to 3 different doctors until I found one
that would. Since then I have done, the biopsy, MPI, ultrasounds,
Pet Scans adnd even though they all came back benine, she still
check's me every 3 months, 2 make sure nothing has changed. Maybe
you need to go see a different doctor.
Andrea
DX NOV,2003
Age 25
Gleevec 400mg

Dear Shari,
I have no answers for you, but I wanted you to know someone in cyberspace cares
- try to be brave - you already have a lot on your plate. I think I would make
the same choice as you - the needle biopsy - to save 3 months of worrying about
something that may not be as bad as it seems now.
With much hope, Debbie

I went for my annual mammogram today. Everytime I have one I also
have to have a sonogram with it because I have alot of cysts. It
looks like this time it is more than a cyst. The radiologist came
in while I was still laying on the exam table and said I had
something suspicious and its not a cyst. He said I could come back
in 3 months or have a needle biopsy. He did say it had blood supply
going to it. To me that means a tumor. It is very small I think he
said 4mm or 4cm I'm not sure. He said it is tiny. Now needless to
say I am very upset about this. My Dr. should recieve it next week,
and I think I will probably have the biopsy. He said it was my
choice. If that isn't enough my Husband just got a promotion and we
are being relocated from Kansas to Tulsa, OK. We just put our house
on the market and everything is happening so fast. I was already
worried about finding a new Hem/Onc and now this to worry about. I
guess what has scared me is him saying it has a blood supply going
to it. If anyone knows what that means I would appreciate some
input. I'm terrified.
Shari from Kansas
dx feb 03
last pcr 0.04 MDACC

Hi fellow CML'ers and Family,
Just wanted everyone to know that due to all the recent findings
regarding Gleevec and Congestive Heart Failure possibly linked to
Gleevec, I went ahead and had an Echocardiogram done.
I wanted to have a baseline and also had concerns because I have
edema issues that aren't remedied with Lasix or Cholorothiazide and a
low salt diet. I take both pills! Crazy Crazy. I think I'll have to
take this stuff forever!
Well, good and surprising news! My ECHO came back completely NORMAL!
That's my good news for the day!
Sincerely, Lynn
Dx'd 12/03
PCRU
400 mg Gleevec

I did the same thing 2 weeks after starting Gleevec. Clean bill of
health... well, I'm assuming as nobody ever contacted me with the
results.

Hi MJ,
The LDH is usually part of the liver work up but it really isn't
specific to the liver because it's found in many different organs
including muscles.
If the LDH is elevated, it can indicate liver damage but it can also
be as a result of tissue damage which may or not be significant. What
was your count? 50 points higher than before doesn't sound very
significant to me, it could just mean that you strained a muscle from
lifting something heavy or perhaps you strained a muscle with a cramp,
I've done that before. It doesn't take much to raise the LDH a little
bit. I've had mine sway around 40-50 points or so with no
significance.
As long as it isn't hundreds above normal, I wouldn't worry about it.
Take care,
Tracey

http://www.nlm.nih.gov/medlineplus/ency/article/003471.htm

Hello,
The LDH had been a bit high but it has recently jumped 50 some points.
That along with other developments is making me a bit anxious. Can
someone explain more about LDH, and what that might show about advancig
CML and/or gleevec not working so well? Thanks, MJH

Hey Group: FYI . . .
I have been emailing off list and chatting via phone; sooner or later I am
always asked about BMTs. All of my brother & sister survivors know my opinion
regarding this . . . but here it is again:
At diagnosis, with 15 fatal/terminal diseases. . . all of which I call Chronic
Illnesses. I had 800,000+phillies per Million and was given a morbid mortality
of 2-5 months on 12/18/2003 by the Cancer Center in my area. Side effects. . .
been there/done that. . . and still having them. I spent the children's
inheritance, and lived my lifetime. I'm broke but I AM SURVIVING (hehehehehe).
In fact with our Gold; my 2nd RT-PCR is 0.00136. Thanx God, Dr. Drucker, & my
brother & sister pioneers.
My personal opinion on the BMT, which I was never a candidate; is that it is
being 'tooted' as a Cure by Transplant Doctors and some Hematologists &
Oncologists. Which I don't believe, with BMT survivors relapsing and being put
back on our Gold to survive and GVHD is a KILLER. The statistics aren't in on
the BMTs, I was given +30% die in the first 3 months and +50% die in the first
year. That was for 2003, and in 2005 the same Doctor told me that the rate is up
.05% for 2004. This information is from a Hematologist/Oncologist Doctor at the
cancer center in my area. I know just as the pioneers were there for our gold;
someone has to be a pioneer/guinea
pig for the BMT. I guess I am being selfish because I don't want to lose
another brother or sister who would otherwise be a survivor. The patient I
personally talked too, told me that the 'darn thang' last a total of less than 9
months and she was back living the Gleevec life after surviving GVHD when the
CDC Doctor had told the family that she wouldn't survive and was out-of-pocket
+$90,000.
Dr. Drucker stated at the ASH Conference in December that a newly diagnosed
person has a 25 year median and our bug is truly a Chronic disease (much like
Diabetes). We have our Gold, the AMS & BMS medications, the Vaccine, and other
medications on the horizon.
I urge any brother or sister considering the BMT to research all information
pro and con; your personal family issues, talk to BMT survivors, your
quality/quantity of life, etc. After all is considered, remember the stats
aren't in and we are Surviving on our Gold and the other medications available
pre-BMT.
Take care, I have all in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Very well stated! I think Gleevec and the other new drugs and vaccines that
we now have and still coming, has definitely changed the old opinions of BMT
being "a cure." It certainly doesn't cure everyone. The mortality rate
itself and then the GVHD. I guess all in all its a personal choice.
I am looking forward to 25+ years with a chronic disease and hopefully a
real cure down the road. There is lots of opinions on the horizon.
Keep the positive attitude and lots of hope.
Jennifer 33
CML may 13, 2005
Gleevec 600 mg

Just wanted to clarify that IF I reply to your message it post with a
differnt name then my own. It will say michelle instead of Tracy. I
don't know why, I think I messed up or something when I applied for the

Hi Tracy,
These are definitely Gleevec side effects for some people, but at the
extreme. You might ask your doctor about switching to Sprycel (approved
now) and see if that is a better drug for you. Some folks who had a lot of
problems on Gleevec are doing much better on Sprycel.
Did the GI doctor do an endoscopy to look at your esophagus, stomach, etc.
to see if Gleevec has caused any damage. I had a lot of acid reflux when I
was on Gleevec but did overcome it (with lots of juicing to offset the acid
in the drug).........now I am on Sprycel and it is much easier to take and
easier on the stomach.
Nancy C.

Hi Tracy,
What dose of Gleevec are you taking? Have you ever tried splitting
up the dose throughout the day? Say, if you were on 400 mg.. taking
200 at lunch and 200 at dinner.
It's very important that you eat a well balanced meal with Gleevec.
Some people can get away with a light meal, but I always feel crummy
unless I take it with my largest meal of the day. I always drink a
lot of water with it too.
Hope this helps.
Lynn
Dx'd 12/03
PCRU 400 mg.

I am a lurker to this group, I read post and I don't question very
often but I have a concern. I have been on gleevec since 2002 and have
had a wonderful response. Last fish and quantative pcr has been
negative. The difficutly is that I struggle with nausea, vomiting and
and other side effects of gleevec, somedays it is so bad I can barely
eat or I have to force myself to eat something. This past year I have
dropped 35 + pounds without trying. My Dr. feels that gleevec is not
the cause and that other things are causing it. Has anyone else
expereinced this? I have seen a GI dr and everything is always normal,
they have no explanation for any of this.
I don't feel depressed, nor do I think it is psychological. I just fell
so ill somedays and it is hard. Any one have any comments or
suggestions that could help me? I am at a loss and really fustrated
with the whole bit.
Thanks for listening
Tracy in Pa

Please join us for a special presentation by: Dr. Francis
Giles in Montreal and Toronto
The CML Society of Canada
Please join us for a special presentation by: Dr. Francis Giles in
Montreal and Toronto
The topic is :
Updated IRIS information from ASCO and current work in immuno-therapy and
vaccines in treating CML
Q& A follows talk.
Toronto location and time:
September 28, 2006-at the PMH, Princess Margaret Hospital-Room 605, 7th
floor
3:30 PM-5:00 PM
Please note final date change for Montreal:
October 17, 2006-at the RVH-JSL Browne Amphitheatre
4:30 PM-6:00 PM
-
Mission Statement
-
The CML Society unifies and brings the voice of survivors to the management
of Chronic Myelogenous Leukemia and the improvement of care and quality of
life issues through patient support, education, research and advocacy.
This program is made possible through an un restricted Educational
Grant from Novartis Oncology

Hi Germaine,
The FISH test isn't the most accurate test in the world and there
are errors with it. There are many variables that can affect the
FISH test....the type of cells analyzed, the stage of division, the
age of the sample etc. Many doctors don't even do FISH tests anymore
for these reasons. The BMB on the other hand, is accurate so if
you're going to believe one test, that's the test to believe.
You've shown a definite improvement over your last test (going from
11 positive cells to just 2) so it looks to me like you're on the
right path.
If you had any type of chromosomal abnormality, they would have seen
that in the BMB. Do you know if they found any? If not, I can't
see there being any problem with chromosomal abnormalities.
All in all, it sounds like you're going in the right direction.
Take care and let us know what they say on the 25th,
Tracey

Okay here is my story:
In October 2003 I was diagnosed with CML PH+. In November I was
put
on Gleevec, 400 mg. In May of 2004 I changed doctors and he put me
on
800 mg. My blood work after that was okay still a little high, well,
right outside of the normal margins. I stayed on Gleevec till
January
of 2006. I started the trials for Sprycel in Jan. I was put on 100
mg
daily. My BMB's all along still showed the PH+. My recent results
were:
FISH:negative
Cytogenetic: 2 of 20
BCR/ABl: Positive
and
for the fish to be negative. She told me that they think that there
is
a chromosonal abnormality, and they were going to research it and I
have an appointment on the 25th. This was the first time a fish and
a
bcr/abl has been done. The BMB before this one was 11 of 20. So it
looks like there has been improvement, but it freaks me out now that
they are saying there is an abnormality. I am currently seeing a
local
oncologist and a specialist at Emory Medical Center in Atlanta. I
have
been type tested and have a 9 out of 10 match for unrelated BMT. My
local oncologist said "you won't survive a transplant", so now I am
really worried.
Now here's the question.... Should I try and go to one of the
major
cancer centers for a second opinion on my choices? I thought about
trying to get into see Dr. Druker or Mauro. I have Medicare and
state
Medicaid. I just think that I need to try all choices before having
a
BMT.
I feel like I am running into brick walls. Please any advice.....
Thanks,
Germaine
age 29
dxd 10/2003
PS

Hello All,
There has been a change to Dr. Giles speaker tour, please note:
Montreal - Talk with Dr. Francis Giles - Montreal, CHANGED to October 18th,
2006
Please contact us to let us know your preferred time of the meeting. We
would suggest anytime after 4:00 PM
Toronto - Talk with Dr. Francis Giles - Toronto, September 28th, 2006 at
4:00 PM - CONFIRMED
Room location will be confirmed very shortly. The meeting room will be at
the Princess Margaret Hospital. Refreshments will be provided. Please
contact us if you will be attending and if you have any special dietary
needs. Please RSVP by e-mail and list number of guests attending with you
The CML Society of Canada
The program is made possible through an un-restricted educational grant from
Novartis Oncology

Hi-
My name is Patti and I was diagnosed in January 2003. I have been on gleevec
since my diagnosis and also have issues with nausea at times. I find that
Zofran 4 mg in a dissolving tablet form works very well. I do not need to take
it with every dose- just when the nausea strikes (always immediately after
taking the gleevec) I always take the gleevec with my biggest meal of the day
which also seems to help but certainly not always!
Best of Luck!!
Tracey <traceyincanada@...
Hi Everyone,
I'm curious to know how many of you take anti-nausea drugs, which
kind and how well they work.
Most of you newbies probably aren't aware of this but Gleevec used
to come in capsule form but was changed to the pills we get now,
some time ago. Well in Canada, it took us a very long time to get
the new pills but we have finally made the switch, much to my
chagrin.
I never had any nausea issues with the capsules for the 4 years I
was taking them but being on these pills for the last 6 months or
so, has resulted in severe nausea with occasional vomiting.
Thankfully the nausea only lasts about an hour but that hour is
extremely uncomfortable and I'm curious to know if anti-nausea drugs
would help at all since it's only for a short period of time.
Anyone care to share their experience?
Tracey
dx Jan 2002

Hi Everyone,
I'm curious to know how many of you take anti-nausea drugs, which
kind and how well they work.
Most of you newbies probably aren't aware of this but Gleevec used
to come in capsule form but was changed to the pills we get now,
some time ago. Well in Canada, it took us a very long time to get
the new pills but we have finally made the switch, much to my
chagrin.
I never had any nausea issues with the capsules for the 4 years I
was taking them but being on these pills for the last 6 months or
so, has resulted in severe nausea with occasional vomiting.
Thankfully the nausea only lasts about an hour but that hour is
extremely uncomfortable and I'm curious to know if anti-nausea drugs
would help at all since it's only for a short period of time.
Anyone care to share their experience?
Tracey
dx Jan 2002

Do you get the nausea shortly after taking the pill or does it arise
at random?

What a wonderful story. Thanks for sharing that with us!
Tracey

Nancy:
Thank you for your prompt reply!
My husband has been on Anagrelide HCL and Hydroxyurea will be 3 years next
month.(Been off these two for one month) The Gleevec made him so ill he
couldn't keep food on his stomach and he lost so much weight that he got down to
102 pounds, platelet transfusions and also, blood. But in July 2006 he has
started Spycel twice a day, now he is off it counts got too low. He gets a shot
every three weeks, Aranesp. He has a lot of night sweats and legs hurt so much
he can hardly walk. We don't know how far this has progressed and what prognosis
is; or what to look for in the near future.( I have been on the Internet and
been to the Library, maybe I am looking in the wrong places.) He is losing his
ability to remember so we don't know all the time if he is in a lot of pain or
not. Is there anyone else like this? He was seeing a cancer Dr. here but he
moved away and we lost his health insurance when he could not work anymore, so
now he sees a Cancer Dr. through the VA.
Thanks Again,
Anna
Nancy Cogan <ncogan@...
Hi Anna,
How has your husband been treating his CML since 12-2004?
What were his side effects with Gleevec? maybe someone can tell you what
they did for those particular side effects.
There is a new approved drug and some who did not tolerate Gleevec are
doing much better on this drug....it is called Sprycel and it just got
approved by the FDA. Where is your husband treated?
Only the new inhibitors can slow down the progression of CML or put you in
remission. If he is being treated by hydrea (hydroxyurea).....this will not
usually prevent the disease from progressing. No diet is going to make a
difference for the CML......it might help with side effects.
People need a bit more information to be helpful to you.
Nancy C.
dx 9-1998
Anna

i am looking for someone to help me with info on CML; my husband has had it
since 10-2003; he took Gleevec for 1 yr.(10-2004 to 12-2004) but couldn't
tolerate the many side effects. He is too ill for bone marrow transplant, anyone
out there who can give me some encouragement?? Any suggestions on diet or good
reciepes??
Thank You-All
Anna
free62ann@...
Anna

Hi Anna,
How has your husband been treating his CML since 12-2004?
What were his side effects with Gleevec? maybe someone can tell you what
they did for those particular side effects.
There is a new approved drug and some who did not tolerate Gleevec are
doing much better on this drug....it is called Sprycel and it just got
approved by the FDA. Where is your husband treated?
Only the new inhibitors can slow down the progression of CML or put you in
remission. If he is being treated by hydrea (hydroxyurea).....this will not
usually prevent the disease from progressing. No diet is going to make a
difference for the CML......it might help with side effects.
People need a bit more information to be helpful to you.
Nancy C.
dx 9-1998

Hi Sheila,
The FISH test always overestimates the number of CML cells it finds. You
need to know what the error level is at the lab that is doing the
testing. A simple phone call should get you the answer.
The labs that I have seen range anywhere for 2% to 10%. If your lab has
an error of 6%, then a result of 3.8% would mean that you qualify for my
Zero Club.
You need to remember that it is my Zero Club and I created the entry
requirements to this club. My standard is: 0 out of 20 cells by BMB gets
you into the club. Chances are that with a FISH test of 3.8% you have
made it into the club. Make the phone call and let me know what their
tolerance level is.
Once you hit this value, you have to move to the PCR test to monitor how
well you are doing. The PCR test can have a sensitivity of 1 in
1,000,000 cells.
At your stage in the disease, I would insist that they start doing PCR
testing on your blood. Because the test is very sensitive, you can now
track your progress. Because the BMB and FISH tests look at so few
cells, they will always report as Zero and you will not know at what
level of remission you are at.
The best level of remission you can achieve is to be at PCRU. This means
that the PCR test was unable to detect any CML cells in your system.
The results of the PCR test are reported as a % or a log reduction. The
correlation between the two reporting methods are roughly like this
1.0 = 1 log reduction
0.1 = 2 log reduction
0.01 = 3 log reduction
I hope that this helps. Get back to me and I expect that you will
qualify for a number in the Zero Club.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
PCRU 5/02 at RVH
2.8 log reduction Sep/05
3.0 log reduction Jan/06
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hello-
Sorry to hear about your flair up. Gout is pretty painful. I haven't had
trouble with gout since diagnosis but I have had pretty intense bone and joint
pain since. I have ben dx since May 06. I am on 600mg soon to go to 800mg.
Sorry, not much help here. Hope the meds give you some relief!
Jen

Yes. Swelling in my legs, ankles and aching joints. These are
common side effects. Some can expect a weight (mostly water)of 20
to 30 lbs. Gleevec eyes are common also (puffy tissues around the
eye making them look swollen). Go to a good medical site and type
in Gleevec and read about the side effects they list. Most of us
experience a large number of these, they seem to come and go as we
acclamate to the various dosages. Just remember that this is better
that the alternatives we have been giving. I was diagnosed Feb.
2003 and have been negative since June 2003 thanks to Gleevec. I am
able to maintain a full 40 hour work schedule and just turned 67.
Good luck for continued success with Gleevec and hope all the
changes are controlable and that you do well.
Richard H.
dxd 2/o3
400mg Gleevec 3/03
PCR-U 6/03
Q-Pcr .001 11/05 and holding.

Hello Zavie! I dopn't post too often but have in the past and have e-mailed you
directly. I was just curious how low you FISH has to be to get in the zero
club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and
started 400mgs of gleevec. I have the problem of nutropenia and my local
hemo/onc started playing with my dose and by Christmas I was on 400 mgs every
other day. By March my cells started rising they were at 28% and Mayo clinic
ordered another bmb. I then started taking 400 mgs every day and repeated the
FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my
Mayo doc) and have tolerated it very well, other than the netropenia so I've had
a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to
have another draw Oct. 4. I'm just glad things are going in the right direction
again. In Nov. of last year my FISH showed 3.4% but that's when my local doc
started messing with the dose.
THANKS! Sheila
dx 8/3/05
Zavie miller <zmiller@...
Chat Reminder - Tuesday 9:00 PM
I'm back.

Shortly after being diagnosed (7/19/06), my doc prescribed 300mg
Allopurinol to prevent potential gout after my WBC's started dropping.
Gleevec brought my WBC from around 195 to 7 in about 3 weeks. At the 1
month on Gleevec mark (this past Thursday), gout like symptoms set in.
My toe has been killing me!
Has anybody had or heard of gout after Gleevec? I had it looked at by a
doctor at the walk-in clinic today and he suspects it is gout as well
and prescribed 50mg Indomethacin. If it's not substantially better by
Friday, I'm supposed to come in again and they may suspect infection.
Thanks.

PLEASE NOTE MY NEW E-MAIL ADDRESS

Hey Group. . . I am still lurking out here and sending personal welcomes to the
NEWBIES. I am getting the impression that the Hematology & Oncology Doctors are
steering our Newbies to the BMTs. I understand that the Transplant Doctors need
US as (pioneers/guinea pigs) to UP the statistics; but with our Gold, the AMS &
BMS medications, the Vaccine, and new medications on the horizon. I personally
don't feel that a BMT is the CURE that the Transplant Doctors have been
'tooting' it as with over 30% of us not surviving 3 months and over 50% not
surviving 1 year.
Dr. Drucker stated at the ASH Conference in December that our bug is truly a
Chronic disease now (much like diabetes) and a newly diagnosed person has a 25
year median. I personally feel that the BMT is a 'last resort option' to be
considered only when all has failed. GVHD is a KILLER and I personally don't
want to lose another brother or sister, who would be SURVIVING on our Gold.
BTW. . . I got the results of my 2nd RT-PCR on September 1, 2006 and I am
holding at 0.00136. I've come a long way from 800,000+phillies per Million and
2-5 months to live on December 18, 2003 to "0/Negative" on the FISH Test on
January 1, 2005 to my 1st RT-PCR on December 27, 2005.
My 18 fatal/terminal diseases. . . which I call CHRONIC ILLNESSES are being
managed by my PCP and 5 Specialists. I have ALL in my prayers!
I'M A SURVIVOR. . . I AIN'T FINISHED YET! ! !
"K"
"I AIN'T FINISHED YET"!!!

Hi, all,
If you would like to see a history of a teenager with CML who had a
matched unrelated donor bone marrow transplant (MUD BMT), you can go
to this site:
http://www.caringbridge.org/wi/tomneddo
Dr. Druker gave our family higher survival rate statistics for
pediatric CML patients who had a BMT. Other factors which influence
BMT survival are phase of CML at diagnosis, time since diagnosis,
age, etc. A good CML specialist will take you through all of your
options and give you all the pros and cons of each option.
K- I am certainly glad that you are surviving all of your chronic
illnesses. Best of luck to you.
Lisa M. - K's message was the one I was talking about (same message
posted Dec. 2005).
Barb Neddo,
Mom to Tom, dx CML 8/13/04, MUD BMT 5/05/05
http://www.active.com/donate/ltnBrookf/1828_BNeddoLTN

Cheryl,
I also just returned from holidays and was disappointed to see your
note. In case you were not aware, the Jewish High Holiday, Rosh
Hashanah, begins at sundown on September 22 and ends at nightfall on
September 24. Secular activity is completely prohibited on these
important days.
I do not think that just because the LLS and Bristol Meyers chose
September 22 to hold the Montreal LTN event is a reason for the CML
Society to go along with these dates for their meeting.
Unfortunately that precludes my attendance and that of any other
observant person of the Jewish faith. Send my best regards to everyone
who will be there.
Zavie

Hi Richard,
Always nice to have you looking in on the list.....and great to have you
offer your more complete insight about these issues. I wonder then if this
is true of all cancers...that somehow the mutation occurs in 'primitive'
cells that can't be easily defeated??? I think that naturopaths generally
think that cancer occurs because your immune system fell asleep on the job
or was over-whelmed somehow (like too many free radicals to deal with,
etc). The appealing thing to me about the weaker immune system is that you
can influence that in various ways....but if it is primitive cells that are
just out of reach.....I guess we have to leave it to science to solve the
CML dilemma. My goal is to be the healthiest CMLer that I can be!
Hope you have had a great summer.
Maui Nanc

I'll add to Nancy's excellent (as usual) response that the reason some
people who experience the 9/22 chromosomal translocation get CML and others
don't may be because the vast majority of these mutations occur in cells
already destined to die. They and their offspring may live longer than
normal cells (BCR/ABL confers upon all neutrophils a survival advantage),
but neither the parents nor the progeny are immortal and eventually the
clone dies out. Only when the mutation occurs in the rare (1:1000 or less
compared to all other white cells) primitive stem cell line called CD34+
cells, does it go on to cause leukemia. These cells are immortal (or close
to it) to begin with; BCR/ABL makes them and their progeny live longer, and
reproduce and mutate faster, all of which results in CML.
This is an important hypothesis because, if correct, it means that folks
like us who develop CML do NOT have anything wrong with our immune systems
to begin with - we're just unlucky as Nancy says.
Cheers,
Richard R

Hi All, after a long absence,
Alicia is probably right that Gleevec (IM) would be the best drug if this is
Ph+ CML, but CML in a child this young is often quite a different disease
than in older people and management choices may be more different than I
know. The risks and benefits of transplant are also very different - and
highly favorable for children vs. adults: they usually tolerate the
procedure better and the mortality is much lower (50% mortality is much
higher than most centers experience on average, though many factors play
into the risk).
My best to everyone,
Richard R

kristi122677 <kristi122677@...
best friend Stacey has just been diagnosed
with CML. Stacey has recently turned 27, and was married on July 9,
2006. After a 11 day Honeymoon to Mexico they came home and stacey was
feeling well. After some routine blood work she was diagnosed with CML
and our lives have changed dramatically. Right now she is on Gleevac
and they are considering a possible BMT if her sister is an exact
match. I have been researching despertly. And I am just looking for
support, and any if any survival stories because they are few and far
between. They beleive that Stacey may have gotten CML due to the fact
that she was a flight attendent? Apparently a few cases were reported
to the airline she worked for at the time.
hi KRISTI MY NAME IS TINA AND I WAS DIAGNOSED WITH CML THIS MAY I AM GOIN FOR
THE BMT ON FRIDAY IN BOSTON DANA FARBER THEY ARE THE BEST FOR THIS MY SISTER IS
A MATCH TO ME . I HOPE YOUR FRIEND IS FEELIN GOOD I AM ON A DRUG CALLED GLEEVEC
IT IS FOR PEOPLE WITH CML IT WORKED FOR ME .THEY DONT KNOW HOW LONG THIS DRUG
WORKS ON PEOPLE . I KNOW HOW YOU FEEL I DONT KNOW ANY ONE WHO IS GOIN THROUGH A
BMT OR WITH CML . I AM 36YEARS OLD.AND MARRIED AND HAVE A DAUGHTER WHO IS 8 BUT
I WILL SURVIVE THIS

My name is Kristi and my best friend Stacey has just been diagnosed
with CML. Stacey has recently turned 27, and was married on July 9,
2006. After a 11 day Honeymoon to Mexico they came home and stacey was
feeling well. After some routine blood work she was diagnosed with CML
and our lives have changed dramatically. Right now she is on Gleevac
and they are considering a possible BMT if her sister is an exact
match. I have been researching despertly. And I am just looking for
support, and any if any survival stories because they are few and far
between. They beleive that Stacey may have gotten CML due to the fact
that she was a flight attendent? Apparently a few cases were reported
to the airline she worked for at the time.

Since being diagnosed 7/06, I can't help but to scan my past to figure
out where I lived, what I ate, chemicals I've used, etc. to try and
figure out how I acquired CML. We all know about the risk factors with
radiation, benzene, etc.
Has anybody been able to trace a solid potential cause for their CML?
Also, kind of a dumb question, but does the chromosome translocation
that results in CML occur at the moment of exposure?
Thanks.

CML is an acquired mutation.....and the cause is not known or well
understood. It is probably not from a single exposure....unless maybe you
were exposed to excessive radiation (like a melt down).
For some reason your body (your immune system) did not recognize the first
CML cell as 'foreign' and get rid of it.....maybe because the mutation
occurred in a primary stem cell??
Here is a fact for you to consider.......when they do BMBs and cytogenetic
studies on ordinary people, a certain % will have some of the 9-22
translocations but will never develop CML. So this is just a mutation that
occurs with some frequency........but our body was not able to eliminate it
and we developed CML. Bad luck I guess.
Nancy C.

I don't know a lot Jamal but I would be very concerned with your daughter's
care. Your daughter should be on gleevec or a similar medication and at her age
I don't know that a BMT would be a great idea. It is a scary process for a
adult with about a 50% survival rate from what I understand. Gleevec is a
medication that people with CML take once daily which keeps our WBC low and
keeps the leukemia for most from returning. There are side effects for many
people but it keeps you alive. It is a drug that you are on forever but it
circumvents a BMT. Please seek a second opinion if you can.
Hang in there, best of luck!!!
:{
Alicia
View our family's photos at webshots
Our pet's pages:
Simba: www.catster.com/?219163
Nala: www.dogster.com/?215653 Pumbaa:www.dogster.com/?225974

Dear all,
I am new to the group, three weaks ago i started blood and bone
marrow test for my kid, zina 5 years old, after a CBC test where
here WBC were 80,000.
The doctors first thought it was JMML and after the Cromosom test it
was positive and the doctors said it si CML.
She took (rosophine for 10 dayes) and now is taking Zinat
antibiotech.
Also she takes a medicine to lower down her WBC which reached
150,000.
After 7 Capsules they were 44,000two days a go.
We made an HLA test and found that her brother Omar (7 years) is
100% Ok.
We are to start a new clinic at Hadasa hospital (Jerusalem) starting
thursday to start the BMT operation.
I need help in detailing me the BMT opeartion from time,phase and
steps expected, Success percentage and the left unsuccess one, where
does it go, and how can be avoided.
I am afraid of this operation for not knowing details about it.
Your advice and help is appreciated.
Jamal Hurani

Hello All,
In a recent communication we highlighted a couple of upcoming activities
that the CML Society is either sponsoring or participating in.
Of special interest is the Light the Night (LTN) event for the Leukemia and
Lymphoma Society (LLS) here in Montreal, where we will have a special tent
for the CML Society. Unfortunately that event is taking place on Rosh
Hashanah and we understand that many of our fellow CMLers of the Jewish
faith
will not be able to participate in this event. The CML Society had
originally intended to hold a Patient Advisory Board meeting on the Saturday
September 23rd to take advantage of the people coming in from out of town
for the LTN event.
While we were told by the LLS that the date of the LTN cannot be changed, we
can postpone the date for our September 23rd meeting, hoping that this will
give the opportunity to all CML patients, their families and loved to
consider participating in this important activity.
We are reviewing additional fall dates with the executive board and will be
confirming with you as soon as possible.
We've had a great response to the Dr. Giles talk in Toronto and Montreal and
we are looking forward to seeing so many of you again.
In the meantime, here in summary are the activities/ events for the CML
Society for September:
Montreal - LTN - LLS - September 22, 2006 Montreal Please get in touch with
us if you are interested in joining the walk with the CML Society.
Montreal - Talk with Dr. Francis Giles - Montreal, September 27th, 2006 at
12:00
at the Royal Victoria hospital, room to be confirmed. Refreshments will be
provided. Please contact us if you will be attending and if you have any
special dietary needs. Please RSVP by e-mail and list number of guests
attending with you
Toronto - Talk with Dr. Francis Giles - Toronto, September 28th, 2006 at
4:00 PM
at the Princess Margaret Hospital. Refreshments will be provided. Please
contact us if you will be attending and if you have any
special dietary needs. Please RSVP by e-mail and list number of guests
attending with you
Special meeting with patients from across Canada in Montreal - date to be
confirmed shortly.
Best,
Cheryl-Anne

Hello My name is Andrea and I am 25 years old. I was 22 when I was
DX. I have been on Gleevec it will be 3 years in November. The side
affects on me have not been that bad, I cant complain. You have to
keep looking forward dont look back. I have never stopped planning for
the future. I got married last month. I am still strong, and
hopefully getting stronger. Let me know if I can help you with any
thing else. I am also from Cali. what part are you from?
Andrea
DX 11/2003

this is a link I copied from AOL...so it may not be clickable, so go to 8/25
of USA Today & you can easily find it....but it has to do with class action
lawsuits, soft drink companies, specifically Coca Cola & benzene.
Interesting reading
_http://www.usatoday.com/money/industries/food/2006-08-25-coke-benzene_x.htm?c
sp=23&RM_Exclude=aol_
(http://www.usatoday.com/money/industries/food/2006-08-25-coke-benzene_x.htm?csp\
=23&RM_Exclude=aol)

Kris,
You have got a great attitude going!!! Good for you. Attitude is
everything!
We are 2 peas in a pod. I was diagnosed 7/19/06 and I am 33 as well.
Also have a family and no plans of going anywhere.
I've been on 400mg Gleevec since 8/3 and I'm responding awesome.
Counts are dropping fast, hemo climbing, and my spleen which was
once "huge" is normal. All in 3 weeks!!! Gleevec is an amazing drug
and the one's coming down the pike are even better.
When I was diagnosed, my WBC was 200 and the 400mg is working fine.
Why 800mg for you? That's great news you are barely having side
effects.
Stay strong!
J

Hi Kris,
Sounds like you are doing very well....and keep up the good attitude. Also
sounds like you have your hands full at home! Where are you being treated
that is presently doing a 400mg vs 800mg trial with newly diagnosed? just
curious. Sometimes the side effects come and go...if something pops up, let
us know and someone will have some suggestions for you.
Best wishes to you,
Nancy C.
Eugene, Oregon.....now on BMS/dasatinib

Hi everyone, I was just dx 7/27/06. I had not been sick I just had
routine blood work done at my yearly physical and wham, my WB was
131,000. I was referred to a oncologist and life has been different
ever since. I am participating in a study group the 400 vs 800mg of
gleevec I have been assigned 800mg I started 08/23/06, I was a bit
scared thinking that the side effects would be horrible on 800mg but
other than some mild nausea on the second day I have had nothing
else. I feel great. I am 33 yrs old, I have three children my oldest
is 3 and I have 18 month old twins. Since the day I was dx I have
refused to think of this as a life long disease I have all the belief
that a cure other than BMT will be found soon. And until then Gleevec
seems to working well for many people with CML. Hopefully I will
continue to not have any side effects.
Thanks,
Kris

Hello all. I started on 400mg of Gleevec on 8/3/06. It's been 3 weeks
today. My blood counts are dropping fast (WBC 211 to 23 at Monday's
test) and my spleen is just about normal. I feel great!
My question is, I haven't had a single notable side effect. Do they
show up over time? Would I have had side effects already?
Thanks.
James

Hi James and welcome to the group.
Every person experiences different side effects (although some
people have none at all). For many of us, the side effects seem to
come and go so it's possible you may experience some at some point
but it's also possible that you may not experience any at all. Lets
hope you're one of the lucky ones and never gets the "pleasure" of
experiencing them.
Take care,
Tracey
dx Jan 2002

I'm not sure which it's from but yes it is directly related to the disease
and/or it's treatment. I've had bouts of it from the time my treatment started.
Some weeks I have nothing some weeks I'm in constant pain. I've had the pains
in my legs, thighs, back, feet, wrists, etc. When the pain comes it's
unbearable. My doctor gave me oxycondone for the pain and that works. I take
it sparingly when I can't bear the pain.
Good luck!
:{
Alicia

Barbara,
Yes I have joint and muscle pain, have been on Gleevec since 2001. My
oncologist said it's one of the side affects. I know how you feel, don't feel
bad about taking anything for pain. It's just one of those "thorns in the side"
that we have to deal with.
Hugs,
Ollie Odaka

Has anyone had problems with extreme pain in the joints and muscles? I
used to never take medicine for pain, but noticed in the last month, I
can't sleep for the pains especially in my hips and legs.
Is this the CML or the Gleevec?
Thanks
Barbara

Hello Everyone,
Just back from a lovely vacation on Martha's Vineyard. I think long walks
on sunny beaches is much better than any drug!
Even though it is summer and we have been swamped with a multitude of
things, the CML Society has been working hard to firmly establish ourselves
here in Canada.
We are excited to announce a couple of upcoming activities. Hope you are
able to join us for some or all of these exciting events.
September 22, 2006 - Light the Night in Montreal - Presented by the Leukemia
and Lymphoma Society and Bristol Myers Squibb. The CML Society will have a
tent set up donated to us by the LLS (a value of usually $10,000 worth of
sponsorship money). The purpose of the tent is to help raise awareness of
the CML Society as well as CML in general. We do recognize that this date
falls on Rosh Hashanah. We did not pick this date, and for those of you who
know me well, know that it is troubling to me that this event is happening
on a very special day for our Jewish friends. I spoke with Robin Markowitz
at the LLS and she has prepared a letter which I will send in a separate
e-mail regarding the holding of this event on this very special day. The
following day is a Saturday and we will be holding a special meeting of the
CML Society, we had to pick this date to correspond with the Light the Night
Event to take advantage of the people who will be traveling to Montreal at
that time.
Saturday September 23, 2006 - Special fall meeting of the CML Society which
will most likely include patient representatives from every province in
Canada who are interested in helping us to establish the CML Society from
coast to coast. This will be held in Montreal at the Royal Victoria
Hospital
Wednesday September 27, 2006 - Montreal, Royal Victoria. Special lunch
meeting featuring Dr. Francis Giles from MD Anderson, Houston Texas. Dr.
Giles is actually a Canadian, born in Ontario but raised in Dublin Ireland.
His parents were/are Irish. We hope he speaks to us about his recent work
on vaccines.
Thursday, September 28th, 2006 - Toronto Ontario, Dr. Francis Giles, as
mentioned above. Meeting at 4:00 PM or early morning meeting on the same
day. For everyone in Ontario, please write back to me and let me know your
preference. Either 4:00 PM or early morning, let's say 8:00 AM.
Please e-mail me to confirm your presence for these events. It is very
IMPORTANT for you to confirm to me no later than tomorrow evening (August
23rd, 2006) your availability for the Montreal and Toronto meetings
featuring Dr. Francis Giles. We are working with him to firm up his agenda
and need to do so this week. My deadline is late Wednesday evening.
The Meeting in Montreal will be chaired by Cheryl-Anne and Suzan as well as
Dr. Pierre Laneuville. The meeting in Toronto will be chaired by Cheryl
Anne and Dr. Jeffrey Lipton.
French version of this memo will follow later on today.
We are looking forward to an excellent turn out for these events.
Looking forward to seeing you soon.
Sincerely,
Cheryl-Anne Simoneau,
President & CEO
The CML Society of Canada

Hi,
Welcome to the group. Boy, you must have found us in record time with
your Mom's diagnosis just today (well yesterday). I'm sure you're
both overwhelmed right now and that's normal but rest assured that as
you learn more, you will feel better and more optimistic.
CML is no longer the deadly disease it once was thanks to advances in
treatments. There are members in this group who have been with us for
many, many years and are still doing well and there's every reason in
the world to expect that your Mom will do just as well.
Feel free to ask any questions you have. We're not a shy bunch and
would be happy to answer anything we can. In the mean time, you may
want to check out our Files section (to the left of the screen).
There, you will find two documents that should help you to understand
the basics, one is called the "CML Glossary" and the other is
called "CML FAQ". We use alot of acronyms which you no doubt, will
find confusing at the beginning, but give yourself time and you'll be
more at ease before long.
Take care,
Tracey
dx Jan 2002

Hi Everybody just quickly read through some of your postings. I just
found out a couple of hours ago that my mom has CML. I have been
reading some info and there is sooooo much out there. She has no idea
really of what is going on. I guess she does not ask many questions.
I have never been on one of these group posting. Once I understand a
bit more maybe I will freaking out. Well I am not sure what I am
supposed to do but I will be back in here soon. Thanks for reading!

Hi MJH
I had similar problem in the past and my son who is a pharmacist said that he
believe this caused by Gleevec. You may want to report this to your doctor.
Teresa T
dxd 1/03
400 mg Gleevec
#764

Itzhak Perlman Article from the Houston Chronicle
On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to give
a concert at Avery Fisher Hall at Lincoln Center in New York City. If you have
ever been to a Perlman concert, you know that getting on stage is no small
achievement for him. He was stricken with polio as a child, and so he has braces
on both legs and walks with the aid of two crutches.
To see him walk across the stage one step at a time, pa