CML

-Hi Evelyn, I did ask my Dr if I would maybe get used to the Gleevic,
He told me there are many drugs the body can get used to but that
Gleevic is not one of them. My Dr. has cut me down to 200mgs; cause
of the side effects. My face and eyes are also very swollen. I have
also gotten de-hydrated from the vomiting and diarrhea. Had to have
I.V. to get my fluids up.Did you take the Alipurinol for the gout and
kidney stones? Me too. Keep hanging in, and know that I am also just
getting started on this journey, we can hang in and learn and vent.
It has to get better huh??? Maurene

A FISH test just revealed that 12.5% of my cells are leukemic,
whereas a FISH test one month ago revealed I was at 43.5%. What
accounts for the nice rebound? The onc. upped my dosage of Gleevec
from 400 mg to 600 mg.
Although the side-effects (most notably, gastro-intestinal) are more
pronounced now, the results of the test make clear that the
increased dosage is working. Normally, such tests occur every three
months, but since I am moving (work-related), and my levels went
from 24% in March to 43.5% in June (no doubt from stress), the onc.
wanted me to stabilize (or improve) before my move.
I'll be on the higher dose for at least another two months. The
question is this: If I continue to improve, is it likely the new
onc in the city where I move will reduce my dosage back to 400
mg...or keep it at the 600 mg level?
If anyone can share their experiences in this regard, it would be
helpful. Thanks in advance.
Wayne

Hi Maurene,
I am not real good with the technical stuff but it sounds to me the Gleevec
is working somewhat since it is lowering you wbc. I was dxed in April of 04
and been on Gleevec since. I was lucky and it put me in remission very fast
but I do suffer side effects that make me unable to work. The thing is my
docs tell me since it is working to just handle the side effects. But some
people do have severe side effects to the point they cannot take Gleevec,
what sort are you having? I have fatigue, bone pain, nausea, and I also have
trouble with eating.
I can tell you that I have blood work once a month and see my doctor every
three months. I would ask if the Gleevec is causing damage to your organs
before I would go off of it. I know my side effects were very bad at first.
Terry

Hi Perry,
Welcome to the group.
You will be in great hands with Dr. Shah.
Zavie

Hi Perry,
Congratulations on your good response to Gleevec but sorry you have
to take it at all. You are doing the right thing by seeing Dr.
Shah. He is a top cml specialist. It sounds like you can use a
visit to a specialist. It is not typically recommended to drop the
dose of Gleevec lower than 400 mg in response to low counts.
Typically platelets are allowed to go down to 50 before making any
changes and then if they go too low the patient takes a break from
Gleevec until they rise back to around 75 or so. It's not unusual to
have these low counts early in treatment. Your platelets should come
back up once your marrow has been cleaned out of the mass of leukemia
cells. Good luck to you.
Dorothy
dx 5/2000

I am a 55-year old male diagnosed with CML on 5/31/2007
(asymptomatic; diagnosis because of unrelated blood test relating to
a possible infection). I've been on Gleevec (400mg) since 6/6/2007,
and have had a good hematologic response (WBC down from 192 to normal
range within 3 weeks; differentials looking good/normal, etc.). Red
blood count and related were initially low; now have moved into more
or less normal range--except for my platelets, which have hovered
around 100-115, and have most recently dropped to 96. My oncologist
says I will need to reduce my Gleevec dosage if platelets aren't
above 100 by next test. I view the Gleevec as (so far) being a
miracle drug and am reluctant to drop the dosage with such overall
good and fast results. Also, I haven't had any side effects (yet;
knock wood). Have others gone to lower dosages for the same reason?
By the way, I have an appointment with Dr. Neil Shah at UCSF in about
a week and a half (self-pay referral, but my oncologist and I agree
that I might as well see a real specialist). Have others met with
Dr. Shah? Impressions? (I'm in Sacramento and Dr. Shah is close and
my oncologist recommended him.)
Perry

Hi all, I am new to this message board and new to this disease. I was
dx this past may. I am taking the Gleevic without much luck..side
effects. My onc. says this is the last try with this drug. Either the
drug or the cml crashed my hormone levels..I cryed for 2 weeks.Was put
on hrt and have at least stopped crying.My vision has gotten so bad it
is effecting my job.( i am a heart monitor tech at local hospital) I
like my onc. alot; but guess I don't ask enough questions cuz I have
no idea what all these posts are about. I know my spleen is enlarged;
but it only hurts when the cat or dog walks across it. I am not sure
if I am supposed to be having more tests; wouldn't the onc say so? All
I have had is the bone marrow fish, and the cardiac stress (after
chest pain)Blood draws every other day and now 2 monthly.How do you
all find out all your levels, and what do they mean? All I know is my
wbc is down to 65 from 135. What else do I even ask? My weight loss is
starting to worry me a little. Is not that I don't have any to lose;
but does it slow down a little? No matter what I eat or drink...it
still comes off. Please help the newby figure this all out. Thanks

Hi Grace,
Welcome to the group. It's hard to say if your monocytosis is a
problem or not. The first question that I would ask is do you have
some kind of viral infection such as Mono or a childhood illness like
mumps or measles? These can make your monocytes go up. Another
possible reason for an increase in monocytes is a parasitic
infection.
When are you scheduled for your next blood test. Try not to worry
over one blood test result, it's a trend that will tell you if there
is something going on or not. If your next test is higher then I
think you should try to figure out what is causing your monocytes to
rise.
The bottom line is that if your monocytes are indeed on the rise, it
might not have anything to do with the CML but you do need to find
out what is going on.
The other issue I would discuss with your doctor is why is she
keeping you on Gleevec if you're still not in CCR after 3 years?
There are a variety of options that are available to you now and if
Gleevec isn't working you should switch to something that will work.
Let us know what your next test says,
Tracey
dx Jan 2002
400mg Gleevec since Feb 2002

Cindy-
I was wondering if you could share your dose and what symptoms you were
having last year when you where diagnosed? Do you know what % of phillies you
had and what your WBC was? Spleen enlarged, etc?
I am happy to hear about your terrific results and hope for continued
success with Gleevec.
Hugs
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Hi. I was diagnosed with CML three years ago; have been on Gleevec
all that time - never reached 0% PH chromosome.
I went for my checkup the other day, and my blood was checked via
the "quickie" blood machine in the office. My monocytes are over
17% - something new, not a problem before. Total WBC is normal at
this point.
When the doctor came in, she said, "Are you still taking your
Gleevec?" Well, of course I am. She stated that we have to see if
the Gleevec is still working.
Well, it always takes some time to get the PCR results, and I am
wondering, is this monocytosis a problem or not? I do know that
monocytes over 15% are supposed to be extremely high. Could
monocytosis be a sign that the CML is becoming Gleevec resistant?
Also, supposing Gleevec isn't working anymore, what else is there? I
tried Sprycel because of Gleevec side effects, but I developed angina
from the Sprycel (never had any heart issues before or since
Sprycel).
Grace

My son is starting it tomorrow. What is your situation? He has developed
secondary resistance to Gleevec after doing well on it for eight years.

Hi Cindy,

Jennifer, sending you an email. Let me know if you do not get it or if I
sent it to the wrong address.
Chris
_letitbe@..._ (mailto:letitbe@...) is my contact info
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Hi,
I went to see my oncologist early July. I was diagnoised in early Aug
06 and have been on Gleevec since Sept 06. He ordered a Quantitative
RT-PCR Analysis. Today I called in to the doctor office to see if the
result is back. The nurse faxed me the result of "No BCR-ABL
translocation was detected in this sample".
I have FISH tests done in Dec 06, Jan and April 07. They all came out
negative.
Am I in remission? Am I PCRU?
Please comments.
Thanks.
Cindy

If I may be nosy- what did they start you on?
I wasn't sure if we could take anything but I was started on a low dose of
Zoloft this morning. It is something I have been wanting to do but kept
putting off. I just want to feel a little pep in life again. I want to be
able
to smile and enjoy my family. I don't feel "depressed" but I need a little
pick me up. I am short tempered and tired all the time as well as lost
interests in the things I used to enjoy. Of course, that is a symptom of
depression, so maybe I have been a little. :)
Hope this helps and hope you continue to fel good in life!
Hugs-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Hi, and welcome to our group. You're very lucky in that you've already
won half of the battle and that's because you can recognize that you
are depressed. Now what you need to do is talk to your doctor about
it. There are a variety of medications out there that can help you
feel more "normal" but you need to see your doctor to see which one
would be right for you. Please call him/her soon because the sooner
your depression is treated, the sooner you can get back to enjoying
your life.
All the best,
Tracey

The depression is part of the desease, not clinically related but I think we all
battle it daily. It comes and goes and in my case seems to be brought on by the
severity of the side-effects. I don't have a solution for you unfortunately.
I've spent hours on my couch too, watching my 3 year old play and not having hte
energy to play with him. For a while I would go shopping when I was
sad...thereby exasberating the issue of financial worries and making the
situation worse, not better.
I did have some success by joining a gym and working out when sad. At my gym
they have treadmills where you can watch TV while walking. I found this
satisfied my couch potato, hate the world, this disease stinks, urges while also
giving me some good endorphins and a little help with the weight gain. I have
to get back on the wagon with my exercise...I'd had some trouble with motivation
over the past two weeks but when I did faithfully go to the gym it definately
seemed to help my mood. I also tried Pilates which was great. Although it was
a little strange to try to explain why in the middle of an exercise I would stop
in excruciating pain (muscle/bone/joint pain) and then join back in later in the
class with no problem, but all-in-all it was worth it as the end result was a
great workout and not too much strain on my body.
Hang in there...good luck and try to do something each day that makes you smile.
:}
Alicia

I'm a 29 years old male, I was diagnosed on feb 3, 2006. I have been
in remission since October 2006 and i feel pretty bad. I do not know
what is going on, I feel a lot of mood changes, very sad and cry with
no reason. I don't feel like going to work. and I just want to stay
home watching TV. Our economic situation has deteriorated and I'm
scared if I lose my jib I will lose my insurance and I will not have
access to gleevec, and my oncologist. I feel scared and depressed. I
want to be normal. but it is hard to get out of this.

Hi,
My name is Melissa. I am 39 yoa. I was dx in June 2006.
I have lived in Florida all my life. South Dade, Broward county and now I live
in Orlando.
Mel.
DX 6-06
G 6-06 to 4-07
AMN107 trial 5-07 to present

Hey guys,
Just got a call yesterday from the nurse at my new onc. Don't love the new onc
BTW but he's close to home and I can use my local PCP who I love so I'll deal.
Anyway, the nurse said my BMB came back and that, 'the results were perfect' and
that, 'there were no leukemic cells' so does that mean that I would be part of
the zero club now? I asked her what my last PCR was but she didn't have the
info. The new onc just says things are 'going good' each time I see him. I
still have the awful side effects, BAD diareah, severe fatigue, sometimes
insomina, very bad bone/muscle/joint pain, nausia, etc. which I tell the doc of
but he just says these are normal...which is what I heard, so I'm OK with that.
I'm alive and kicking and I'm hanging in there.
:}
Alicia

Hi Fran,
Thank you for your post.
Fran and I go way back to the early days of the CML lists. She is number 23
in the Zero Club and one of those people who gave me the HOPE and confidence
that I too would reach Zero.
Thank you Fran,
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi Maxine,
A PCR is a test that they do to track your progress. It's very
sensitive and can usually measure one leukemic cell in 100,000 cells
but since the test isn't yet standardized, there is considerable
variation on how they're done around the country and around the world.
To keep it simple, a 3 log reduction is a 1000 fold drop in leukemic
cells from a baseline that your lab has predetermined. A thousand
fold drop in any number is when the decimal point moves 3 times to
the left. For example, if the lab's baseline is 10 then a one log
reduction would be 1.0 a two log reduction would be 0.10 and a three
log reduction would be 0.001.
As you probably know, getting to a 3 log reduction is the goal with
treatment but it can take some time to get there. Many patients take
longer than a year to get there and some don't get there at all but
as long as their PCR results are stable and they remain in CCR,
that's the next best thing.
In our files section we have an FAQ and a Glossary that you might
find helpful since you're new to this. You can find them here:

Hi Maxine,
Welcome to the club that nobody really wants to be a member of.
I have one thing to add to Traceys excellent explanation. Make sure that
you get a copy of all your test results. This will enable you to compare the
values to see your progress.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Shelley,
I have been PCR undetectable for almost 6 years except for one peripheral
PCR that showed a temporary increase. I get peripheral PCR's every 3 months
(through blood draw) and until this year have had annual bone marrow
biopsies. My doctor is now recommending I can wait for 2 years before my
next BMB. I'm comfortable with that recommendation as peripheral PCR is a
sensitive BCR/ABL measure and I'm most concerned about those leukemia
counts. BMB's are done to detect other abnormalities that might develop. I'm
happy to wait 2 years before the next BMB. I hope this helps.
Fran

Hi There, Can someone please tell me what log reduction and pcr is? I
am new to all this and don't know alot of things yet. I know about
wbc,rbc,platelets and thats about it.I have been on gleevec since june
29 2007. i've been getting cbc's done every week and don't understand
everything on the report. here is some of the report......wbc 5.6
rbc 3.20 hemoglobin 11.1 hemhematocrit 32.9 mcv 103.0 mch 34.7
mchc 33.7 mpv 5.5 rdw 28.4 lymph %auto 24.4 mono %auto 1.9. It tells
me if its high or low, but what does it all mean in regards to the
leukemia? I have only seen the dr once and that is when he dx me. I
have no ins. or money!! If someone could help me out I would greatly
appreciate it....and any thing else I might need to know...Thanks so
much, Maxine
dx may 25,2007
started gleevec june 29,2007

Yes. Also a real nightmare with shingles along one side of my mouth and
throat, which led to an extremely painful condition called "postherpetic
trigeminal neuralgia." Five teeth in awful pain! Great quantities of
ibuprofen and vicodin did nothing to dull the pain. It finally subsided by
itself, although now one of those teeth feels like it's "come loose."
Rebecca

LIZA benzene is one of the leading chemical known for C M L What did you do in
the plant and how long.
Paul dxt 12/23/05 400 Gleevec

Hi Evelyn,
I've been on Gleevec for over 5 years and have never had any issues
with my teeth or gums, not even a cavity but I'm only 37 years old.
My mother on the other hand, has had no end of grief when it comes to
her teeth, even though she's healthy as a horse, and on no
medication, so I think age probably does play a role in dental
problems.
Take care,
Tracey

Have any of you on Gleevec reported trouble with your gums? Teeth loosening, or
is this
just coincidental. I am 75, and on Gleevec for almost 4 months with good blood
results but
of course, I suffer from all the side effects reported here.
Evelyn

I have to admit I have always thought that the numbers were higher in
Florida and the only relation I can think of is Pesticides.
I live in Tampa Fl for 17 years now and was diagnosed in 2000
I have never went any further to research because the first 2 years of my
living here I worked for 2 different companies that used chemicals such as
benzene ( I think I spelled that right) which I was exposed to.
Lisa Martinez

The following program will be presented in a format using teleconferencing and
web
casting technology. It will link up the Royal Victoria Hospital (Montreal) with
the Ottawa
General Hospital (Ottawa) and the Princess Margaret Hospital (Toronto) in
Canada.
Patients in each location will hear and see the presentations from the tri
locations. This is
probably the first time that this concept has been used with a patient
educational event.
If you are a patient located in any of these cities, please feel free to join
the growing
number of CML patients attending this event and similar events presented by the
CML
Society of Canada.
Looking forward to seeing everyone!
Cheers!
The Chronic Myelogenous Society of Canada
La société de Leucémie Myélogene chronique du Canada
CML Patient Update Tri City Event
July 25, 2007
6:30 8:30 PM
Montreal Location Details: The Royal Victoria Hospital
J.S.L. Browne Amphitheatre
Ottawa Location Details: The Ottawa General Campus
Auditorium 2nd floor
Toronto Location Details: The Princess Margaret Hospital
Auditorium Room 604
Topics to be discussed as requested by our CML Society patients:
1. Effectiveness Dr. Pierre Laneuville - Montreal
1. Gleevec or Sprycel: is one superior to the other?
2. Control of blood counts in the refractory patient
3. Choosing Sprycel vs. Tasigna in Gleevec refractory/resistant patients is
there a reason
for one over the other?
4. IRIS update
5. Sprycel update (and perhaps Nilotinib update)
1. Side Effects Dr. Isabelle Bence-Bruckler - Ottawa
1. Chronic effects of diarrhea
2. What are the causes of death in the rare CML patient who does not respond to
therapy
3. What should patients be expecting from CML and its treatment performance
status,
quality of life
4. Drug interactions theoretical versus practical
2. Other Dr. Jeff Lipton - Toronto
1. The necessity of bone marrow testing on a yearly basis as per the Canadian or
NCCN
guidelines clonal evolution and de novo clones
2. PCR variability in assays and when do you look at changing therapy i.e.
increasing
Gleevec dose or drug switching
3. Treating Gleevec patients with IFN is there a role
4. Can patients go back to Gleevec after therapy with Sprycel or Tasigna
5. Blood Gleevec level testing
6. Pregnancy and TKI's
In compliance with this grant, attendance will be taken, and evaluation forms
will be
provided, please do not forget to fill them in.

I dont live in Tallahassee but have visited there. I did however live in
Panama City Florida for quite a while.
Jennifer
CML 5/13/05
Gleevec 800mg
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Hi Teresa,
I don't have those answers, but I will try and find them.
What is most astonishing to me is the incidence of CML and AML in the normal
population. It is about 1 or 2 per 100,000. Having 4 in the same building is
suspicious.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi everyone
I have a rare situation happening in my office. We have discover that a fourth
employee in my office has leukemia. Two have CML one has AML. The fourth
employee died few years ago from Leukemia complications. I found this is very
rare for 4 people in the same building to get sick with same disease. Total
employee at the same building are 1500. Half of those employees don't stay in
the bldg. When the last one got diagnized with AML we start to raise questions.
I need from you Zavie some stastic info,if you can help me. Do we have count by
state or county how many CML patients are. I live in Tallahassee-Florida. If any
other patient live in Tallahassee, would you please e-mail me. Thanks.

I've been itching with poison ivy for the past week. Was put on
prednisone for 5 days, now off. I'm still getting new breakouts which
apparently can happen even 10 days after first contact; however, this
is somewhat unusual unless the offensive oil from the plant is still
present on clothing, etc., and I don't think that it is.
Anyone have any suggestions? I don't think the gleevec plays any
role in this, but who knows. I've been away this past week and will
check in with my local docs today, but thought I'd get input here, too.
Anyone have a case of poison ivy while on or off gleevec? And what
treatment did you get?
Thanks for any suggestions.
peace,
Kathy
dx 5/03

i just came back from seeing Dr. Mauro. After traveling 3,000 miles, he said
that I didn't need a BMB this trip. Of course, I told him no way was I leaving
without my crutch of a biopsy, as I had all ready workied my way up to haivng
it. Is anyone else's Doctors telling them that if their blood PCR's are
undetectable, that they don't have to have a biopsy every year? If this is so,
I may not travel the 3,000 miles evey year. It does bvecome costly between
plane fare, hotel and meals.
I would like to hear back from others. You may e mail me privately at :
ornurse954@....
thanks in advance
Shelley
Dx: 9/1999
inf/ara-c until Gleevec approved.
combo of IM/ inf for 1 1/2 years
IM only for past 3 1/2 years and undetectable

Shelley-
I am Gleevec 800mg and undectable and I have been having them every 6 months.? I
had one with Dr. Mauro in December and I just had one here in my new town of St.
Louis.? I can say this, my next one whenever Dr. Mauro says its due will be with
him.? In my opinion, there is no other in my eyes.? I like his knowledge, his
suggestions and his bone marrow technique.?
I had one here 3 weeks tomorrow and I am still sore, bruised and have a
permenant indentation in my hip/butt area.? I miss Dr. Mauro.
Oh, I wanted to tell you and maybe others who dont know,? Southwest Airlines
will fly you and a companion once a year free on SWA if you are a cancer
patient.? You have to have your local oncologist just fill out the form and sign
it stating that you are going for medical treatment. So your biopsy counts.?
Also, the Hilton, downtown Portland will give you an OSHU nightly rate.? They
are only 5-6 minutes away from the hospital and its a beautiful hotel, walking
distance to all the shops.
Jennifer 35
CML 5/13/05
Gleevec 800mg PCRU
Wife and mother of 3 (11,8,6)
Jennifer S. Smith RN

Hi Yusuf,
The interaction between Gleevec and Clarithromycin will cause the
Gleevec level in your system to rise. Are you taking 400mg or
higher? If you are on 800mg, you may want to talk to your doctor
about reducing your Gleevec dose (to 600mg or 400mg) during the time
you will be taking the antibiotic but if you are on 400mg and
tolerating it well, you shouldn't have a problem, especially if the
duration of the antibiotic is only a week.
Good luck,
Tracey

yusef,
I have had the same problem. Don't worry abou the antibiotic. It just
enhances the Fleevec, makes it stronger. You wil only be one it for about 10
days. You really need the treatment, as it can get worse and become more
painful.
Shelley
Yusuf Cipe <cipeyusuf@...
Hello all,
For a while i'm having some trouble with my stomach. Endoscopy results shows
that there is bacterium called helicobacter pylori in my stomach which causes
serious stomach problems. So my doctor told me to begin an antibiotics therapy
for a week which contains 1000 mg clarithromycin every day. I asked him if there
is an interaction between gleevec and this antibiotics and his answer was "no".
The problem is that i searched the web and read that there is an interaction
between imatinib and clarithromycin. I'm really confused now and i dont know
what to do. I will be very happy if someone has a knowledge or idea about this.
http://medicineworld.org/cancer/lead/2-2006/drug-interactions-in-imatinib-therap\
y.html
http://www.drugs.com/mtm/gleevec.html
Thank you very much.
Yusuf Cipe
Istanbul

Chat Reminder - Saturday - 10:00 AM - Eastern
Photos: Side trip to Leiden to visit CML friend.

Hello all,
For a while i'm having some trouble with my stomach. Endoscopy results shows
that there is bacterium called helicobacter pylori in my stomach which causes
serious stomach problems. So my doctor told me to begin an antibiotics therapy
for a week which contains 1000 mg clarithromycin every day. I asked him if there
is an interaction between gleevec and this antibiotics and his answer was "no".
The problem is that i searched the web and read that there is an interaction
between imatinib and clarithromycin. I'm really confused now and i dont know
what to do. I will be very happy if someone has a knowledge or idea about this.
http://medicineworld.org/cancer/lead/2-2006/drug-interactions-in-imatinib-therap\
y.html
http://www.drugs.com/mtm/gleevec.html
Thank you very much.
Yusuf Cipe
Istanbul

Dear Trevor-
I am not sure where all the animosity comes from between the groups of CML.
I can only simply respond by my own opinion(s). I for one, would love to
see less stressful, upsetting emails from people on these sites. I come here
for support, questions and information. I have found these sites to be
beneficial and supportive, especially during the early months of diagnosis.
Why people have to call out others on these sites is beyond me and I think
we miss the reason why these sites are here. I know that if any newly
diagnosed patients are getting on this site lately, they would be turned away by
the
talk. We should resort to being upbeat and supportive. I know Zavie and
his Zero club was a goal for me to set for myself to achieve, if nothing more
then something personal for me to try to get to. I think anything we can do
to encourage and support others, we should do. Even if that entails, climbing
a mountain for the CML society.
I think that peoples impressions about the remarks that someone on
disability could "climb a mountain" threw some people off. One person being
me. Make
no mistake about it, I am certainly not judging your wife. This is a
thought I had to myself. As a 35 year old mother of 3 young children who has
had
to file for disability due to the side effects of the Gleevec/CML, I couldn't
understand how someone could be on disability and Climb a mountain. I can
barely walk up a flight of steps without being winded, or get completely ready
in the morning with out feeling done for the day. I have since learned that
you don't live in the United States and that this is a goal, you wife has
chosen to achieve for her own personal means. I think whatever CML patients
have
to do to keep their life positive and achieve the things we set out to do,
we should do that. All of us together in the CML world need to stand up next
to each other and be supportive. We may not always understand or agree with
one another but I think there is enough negativity in the world and enough
stacked up against us that we should be positive and supportive to others
wearing our same shoes. We are all walking and climbing to the same goals. To
find a cure for CML and until then, bring as much positive light to the disease
and get people aware of CML.
I hope that everyone can put this behind us and move forward without the
personal attacks to each other and realize that we are all in the same boat.
We
are all fighting for the same thing. I wish nothing but the best for all of
you including your families and hope that we can all find the support and
knowledge on here that we originally found these sites to provide.
Best wishes to all-
Enjoy your climb-
Hugs-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Stephen:
Were you first on Gleevec and if so, what have the differences been?
Matt
In a message dated 7/18/2007 9:56:40 A.M. Eastern Standard Time,
stephenraymoore@... writes:
been on sprycel for 18 months. thank you
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

been on sprycel for 18 months. thank you

here are some delay news regarding fda approval of tasigma (amn-107)
i hope the delay will not be longer than the 3 months reported
best regards
giora
Reuters
Novartis cuts outlook, faces U.S. Tasigna delay
Tuesday July 17, 8:16 am ET
Novartis also said U.S. regulators had extended their review period for cancer
drug Tasigna by three months to review additional data. No new studies are
required

Hey Sarah. . .
Looking back, as a Newbie; if you became a member of the group after January
2007. . . you slipped slipped by me and didn't receive my NEWBIE letter. Prior
to that, my daughter deleted all my 'sent' mail. Also, any Newbie not giving
their email address; won't receive my letter. A Pioneer would be better informed
to answer your question regarding the '0'~~ZERO CLUB. I will, however; attempt.
. .though it was before my time.
It is my understanding that there were Phase I & II of the Clinical Trials for
our gold~~ Gleevec; after that it got FDA approval and Zavie began the '0' Club.
Any Survivor reaching '0' on the FISH Test became a member. Back then, it was
'something' to reach '0' on the FISH Test. That meant you were 'negative'. .
.the FISH only analyzed 200-250 cells. . .but then it meant a lot to us. Zavie
gave us numbers and I heard some survivors placed bets. When I became a
'0/negative'; after having 800,000+ Phillies per 1,000,000. had armed myself to
fight the battle of my life, for my life; I personally felt I had slain
him~~Phil (hehehe) when Zavie gave me #811.
I don't know how other Survivors felt, but I am sure that they will post also.
I designed a gold bracelet, on which I have added silver charms. A small Angel
with my diagnosis date~~ 11/21/03, a prayer box, my initial, a ribbon, and an
Angel with my '0' date~~01/05/05. I also have a charm with my PCR Test ~~0.00136
on a necklace. Each meaning a lot to me after my morbid diagnosis of 2-5 months
mortality. As reaching '0' on the FISH Test and receiving a # in the Zero Club
was important to the Pioneers and later to me. . .reaching '0' on the FISH Test
and a # in the 'Zero Club will always be important for a Survivor. . .because
some never do.
I have babbled enough, take care. . .
I have ALL in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

IAintFinishedYet <kttweety@...
16:33:18 -0700 (PDT)
From: IAintFinishedYet <kttweety@...
Subject: Re: [cml 2] Digest Number 1055

Hey Group. . .
Due to my overall general health declining from the '80s, I had to make the
decision to involve my 2~~now adult children in my visits to the Dr's, Xrays,
Therapy, Hospitalizations, Surgery's, etc., At the time I was a stay-at-home Mom
and made the decision to involve them in as many of my appointments as they were
able to participate in over the years.
Now, looking back; they tell me that they're glad that they were always
involved. I did make the mistake of not telling them when I was diagnosed with
our bug and given my morbid mortality. Father came to the house, had
pre-arranged daughter in college coming and my son via phone; who had went into
the USAF only 11 days prior to my hospitalization and diagnosis. I hadn't wanted
to add the Xtra pressure to either of them with her mid-terms and his basic
training.
Parents of young children, please involve them as much as possible in your
health. I will never forget my 3-year old son climbing up in the bed with me
when I had Pneumonia and had been told that I wouldn't make it. He said 'nobody
do it like Mommy do it' when I asked him how he was~~he and his sister remember
that and other things that you don't think they will remember as such early
ages~~they are more resilient than we ever give them credit . . .
and believe me. . .they DO need to be a part of everything. They process a lot
more mentally than we give them credit for at very early ages.
Take care. . .ALL are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Forgive me if I sound stupid but what is club zero? I am new to all
of this and I have no idea what you are talking about. I am just
curious.

Hey Sassy Sue. . .
You are absolutely correct, and I'm not interested in the CCP approving you
for disability in Canada. Being a USA citizen, I am very much aware of the
differences in the two country's; Canada's medication policy is much more lax
than ours (people go to/order Canadian medications online prior to governmental
restrictions). However per your response to John several days ago in Digest
#1051 regarding the Zero Club is of my concern as a CML Survivor. I most
definitely want to know what was said about the '0'~~ZERO CLUB at the Novartis
meeting in Germany. Per your post to John in 1g. of the digest; you stated that
John should "ask Zavie how the 'ZERO CLUB' was reacted to during the meeting. .
.you are sure that he would love for this information to be on this site".
Well, Sassy; you don't have to post it to the site; however, I would like for
you to email me personally and let me know how Zavie & the Zero Club were
received at the Novartis meeting in Germany. Unlike you, being disabled in the
USA; I am unable to attend the meeting due to personal finances (lack of. .
.hehehe). Please email me privately and let me know.
Many Survivors have moved on since the Clinical Trials and the Pioneering days
of our gold~~Gleevec. I, as everyone knows, don't have the 'options'. I remember
years ago, after Zavie began the "0"~~Zero Club (and I'm glad that he did). It
gave Survivors something to strive for as we battled our disease. Finally, we
had a maintenance medication and I Survived; though 8 out of 8 H/O Specialists
said 2-5 months morbid mortality. Then the 2nd generation medications were in
research & development (Sprycel, Dasatib, etc.). Now it has became 'fashionable'
to become 1st to be placed on whatever's in trial at the time. The sad thing is
that some survivors are actually going down the yellow brick road and ruining
their responses. There is 'NO CURE' for CML ! ! !
As I stated, Sassy Sue; I would love for you to email me personally and let me
know how the '0'~~Zero Club was received. . .because it meant a lot to me years
ago. Just as the RT-PCR Test means a lot to me today.
I have you & yours in my prayers as always. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

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

Hello Terry
I had the same problem when they upped my Nilotinib
(AMN107) to 800mg a day.. I have just started back on
AMN107 Friday. I was cut back to 400mg a day... My
counts are just now started to get back close to
normal my liver count is still a wee bit high but the
rest are close.. My blood counts are still running
low...
but I can live with that..
Hope all goes well with you ... will let you all know
if my Pancreas acts up again ...
SkipD
http://easyskip.tripod.com

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

Hello to All!
I am now well into my AMN107 regime.
Everything has responded very well.
When I had been on it for only about 2-3 weeks I developed
pancreatitus and had to stop the drug for about 10 days.
It was a very slight bout but it is a known side effect and so they
were looking out for it and caught it early.
However when I started back they had to cut the dose from 400 to 200.
I have to be checked again at the end of the month.
I am no longer in need of Octreotide and have a number of 200UG/ML
vials which are of no use to me.
If anyone is interested in these please let me know by email'
terryjeanw@...
Best regards,
Terry

I would suggest taking him with you. My son was only 2 but he went with us so
he could help the nurses check Mommy's blood. He would always hold my hand to
make me feel better. He doesn't go now because he doesn't like to sit still for
that long but as he gets older I plan on including him in my appointments when
appropriate. I think with kids it is important to keep them involved and allow
them to do something that they think is helping if you can find something.
Maybe have your son remind 'dad' to take his pills or have him do a report in
school about Gleevec and the revolution it has caused in the CML community.
Just have something that he can do that will help him feel like he has some
control. I hope he is able to get through this. I hope you are all doing well
and continue to progress along.
:}
Alicia

My husband was dx in Nov of 06. I have two boys (ages 12 and 5). The
5 year old does not understand what's going on but my 12 year old was
really upset about it. We told him that everything was going to be
fine but he his constantly asking Chris (my husband) if he feels ok. I
know he is going to worry about, we all do. I just don't want him to
worry himself silly. I have thought about taking him to one of
Chris's appointments that way it may reassure him. Any suggestions??
Thanks
Sarah

Lisa,
I have not experienced noticable vision problems but of course that does not
mean I haven't got them. I have been wearing glasses or contacts since 4th
grade and I am now 40. I myself have some slight streach marks at the edges
of my eyes from when I first began my treatment on Gleevec.
Terry

Tracey:
I have had continual changes in my vision the last two years and I have been
going to the optometrist every 6 months. Because of the pressure issue, I
make
sure they check it each time and my pressure has not been an issue.
However, you have been on Gleevec much longer than I have.
Sincerely,
Matt
Jacksonville, Florida
Dx January of 2005
Gleevec since March of 2005
Treated at MD Anderson
Father of 3
In a message dated 7/11/2007 7:43:27 A.M. Eastern Standard Time,
traceyincanada@... writes:
Hi Everyone,
Some time ago I posted an abstract that showed the various side effects
that Gleevec could cause on the eyes and an increase in intraocular
pressure was one of them.
Well I finally got around to getting my eyes tested and sure enough, my
pressure was quite high. Now I'm curious to know if anyone else has
kept on "eye" on their eye pressure.
Unfortunately, I can't say for sure that the Gleevec is at the root of
my eye pressure because I don't think I ever had it tested prior to
starting Gleevec over 5 years ago. If I did, it would have been with a
different eye doctor, in a different province so it wouldn't be that
easy for me to check anyway. It is possible that I've always been that
way I guess.
Tracey
************************************** See what's free at http://www.aol.com.

Hi Tracey,
I have been on Gleevec for just 6 years now.
About 3 years ago I started noticing vision problems and never had any
previously. It's gotten worse and I still haven't resulted to going to Dr
for it but I contributed it to age? Now 42.
I'm not sure what the pressure means. Haven't had time to look it up yet but
I don't have the edema as bad as I use to for about a year now.
However, from having it so bad for so long my eye lids have stretched and I
do have quite a bit different appearance from it.
Lisa Martinez

Hi Everyone,
Some time ago I posted an abstract that showed the various side effects
that Gleevec could cause on the eyes and an increase in intraocular
pressure was one of them.
Well I finally got around to getting my eyes tested and sure enough, my
pressure was quite high. Now I'm curious to know if anyone else has
kept on "eye" on their eye pressure.
Unfortunately, I can't say for sure that the Gleevec is at the root of
my eye pressure because I don't think I ever had it tested prior to
starting Gleevec over 5 years ago. If I did, it would have been with a
different eye doctor, in a different province so it wouldn't be that
easy for me to check anyway. It is possible that I've always been that
way I guess.
Tracey

Hello all CMLers
Just an update on my journey with Nilotinib. About a
month ago I was increased once again from 400 to 800
mg a day. The first time we did this I ended up in
the hospital with complications. It took about a
month to get me back on 400 mg a day. It was a real
painful experience. So back I went to 800 mg a day
about a month ago. I thought I could work through the
problems it caused the first time. The first time my
bowel and stomach just stopped working, there just was
no parastolisis. ....
I had a great deal of pain and as I said I ended up in
the hospital for about 10 days. This time again,
everything just stopped working no parastolisis, and I
had a great deal of pain. I lost about 10 lbs and
could not eat, the doctor did a cat scan this time
after an Xray. It was found that Nilotinib may have
cause problems with my pancreas. Pancreatitis is quite
painful, and can cause a great dead of trouble so my
doctor cut me off all meds except Exjade and had me go
into Med Day for treatment every day for the last week
and half. I am back feeling half normal and will
continue with Nilotinib I hope sometime soon. My
doctor and trial nurse feel the company will allow me
back in the trial. My counts are still low for
instance my WBC is 1.1K my Platelet were 8K this
morning I received 6 units single donor Platelet. My
reason for this update is, if on nilotinib and if you
notice your tummy not rolling etc, have it checked
out.
Skipd
http://easyskip.tripod.com
SkipD
Dx'ed Dec 1978
on Myleran(busulfan) 26 yrs
on Hydroxyurea for about 1 year
on Gleevec for approx 1.5 years
on AMN107(Nilotinib) to now

Congrats Jennifer and amen Therese,
It took me nearly three years but that is exactly why I was approved. Not
for CML as much as the side effects of the Gleevec. As I said in my case I
had to go through allot of paper pushers before it finally went before a
judge that truly looked at my case and did not just see "remission" and deny
me. It sucks not being able to work and I lose track sometimes on what day
it is..lol. I loved my job, but you know how when your working you sometimes
wished you didn't have to??? Well I learned the hard way to becareful what
you wish for. I would love to be back at work making the money I was making,
but unfortunately for me that is not going to happen. I will be stuck making
now a third of what I could have been making, and with having a wife and
kids it just plain sucks, not to mention I have no real insurance. Granted I
have Medicare A and B, and will be picking up a supliment plan soon to cover
the 20% A and B does not cover, Medicare is a joke but I guess it beats
having nothing. I just miss having the insurance I once had. Also I have
never had to be on any sort of assistance before and it does sort of hurt my
pride a bit that all I worked for just went away..oh well there are those
allot worse off then I am.
On the subject of BMB's I will not EVER have one done unless I am heavily
medicated. If anyone has a doctor that refuses to medicate you DON'T TAKE NO
FOR AN ANSWER! When I first switched docs right after my first BMB they were
just going to do a local and go with that. I looked my doctor straight in
the eye and told him, "If you do not want me to jump off the table then you
better medicate me!" Call me a sissy but those damn things hurt!! I am not
trying to alarm anyone but it is the truth. They cannot numb the nerves
inside your bones so when they draw out that marrow it hurts. So just demand
medication whenever a doctor wants to do a BMB. Trust me you will thank me
later.

Hi K,
I'm always leary of anything that is promoted as being "all natural"
because some of the most deadly poisons in the world are "all
natural". Then there's also the concern that it can interact with
Gleevec. Even natural foods such as grapefruit can interfere with
Gleevec so just because something is "natural" doesn't mean that it
is safe to use with Gleevec.
You know the saying "if it's too good to be true, it probably is".
There really isn't any secret to losing weight. If you consume less
calories than you expend, you'll lose weight. It's a simple theory,
although I'm afraid it's not so simple to put into practice.
As with all products, I think that people should research them before
deciding if they're worth trying. I found one website that didn't
have too much positive feedback regarding Lipoplex. You can check it
out here if you want:
http://www.ultimatefatburner.com/lipoplex-review.html
Take care,
Tracey

Hey Sister Survivors. . .
For those of you interested, who haven't been able to lose weight with
NutriSystem and are leery of the diet pills. I saw an ad online through a health
site I receive emails from for Lipoplex with Hoodia; which is from a plant~~all
natural for appetite suppression. The site is www.mylipoplex.com. Check it out,
now they are offering 2 weeks free. It has been on NBC Today Show, 60 Minutes,
BBC News & O-The Oprah Magazine. . ."K"
As always, ALL are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

hi Joel,
It's great to hear from you and equally great to hear of your
experience with Sprycel. As time goes on, more and more members will
have the opportunity to try Sprycel and I'm sure that your experience
with it will be of value to them.
Thanks so much for taking the time to update us. I hope that things
will continue to get easier for you and I'm looking forward to
following your story.
Tracey

Joel, great to hear from you!! And, thanks for the update. I had been
wondering how it was going for you?
Chris
************************************** See what's free at http://www.aol.com.

Hi all!
My wife, Wendy, writes alot, and I figured it was time for me to write in...
Firstly, I just wanted thank you all for the words of advice and information
that you have provided to Wendy and I. We will always be indebted to you all
for your support.
I started Sprycel at 140mg (70mg, twice a day), and am still currently on
that doseage. The first day, I felt fine about half the day...then broke out
in hives/rashing. I had a bout of intensive sweating, light head, and
naseua, but that only lasted for about 10-15 minutes. I felt generally "off"
the second half of the day, and a headache began at the end of day 1.
Headache lasted for 2.5 - 3 days, I only had to take Tylenol once, and it
took care of the headache. The first week included some days where I would
get super tired by late afternoon. In fact, 4th of July was a pretty
eventful day, and by the end of it, I was completely exhausted. Over the
last 2 weeks, I have had strange bumps and rashes come and go, never lasting
more than a few hours. The first few nights I would wake up after about 5 -
6 hours from the evening dose, with itching and sometimes strange sensations
in my hands and feet. During the first week, most of the side affects I
mentioned above, would appear about 5-6 hours after taking one of my pills.
All these symptoms have now subsided. I am only experiencing minor tiredness
for about an hour after waking up, and again sometimes in the late evening
before going to bed. My days are full of "normal" energy for the most part.
I must say I feel pretty good considering how new Sprycel is to my system.
I had my 1st CBCs done today. My WBC is 5300, right in the normal range, on
Gleevec I always lingered right around 3400. Red blood cells, hemoglobin are
slightly low (as is normal for me), platelets dropped from my normal
140-160, to 95. I spoke to my onc today, and she confirmed what I had
already researched which is that we are good on platelets down to 50,000
below that we would have to take a Sprycel break to let counts recover. If
platelets were to drop again, we'd have to take another break and then start
back on a reduced doseage. As far as my liver (the reason for switching from
Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it was 38,
that is just a tad above "normal" range, so that is looking good as well.
In summary, the first week wasnt too bad for the most part, but I definitely
felt the new medication. As the days progress, each day has been better. As
far as today, it was a great day! I spent time in my yard, and after being
tired for an hour this morning, have felt "normal" ever since. I am feeling
pretty upbeat about Sprycel so far, but will take it day by day.
One more note- in comparison to Gleevec, it's nice not to worry every time I
take the medication. I dont have to gorge myself to keep the nausea at bay.
Also, there is no tiredness whatsoever, following my medication, which was
standard for me with Gleevec. I can confirm that there is no problem
whatsoever with taking this med on an empty stomach. I have never felt any
discomfort after taking this med with food or without food - I cannot have
said that with Gleevec. I cant remember for certain, but I believe that it
took me quite a bit longer to "adjust" to Gleevec than what it feels like
this time around, but I know that that can change....we'll see...
We still are seeing Dr. Druker the end of this month. Thanks again to
everyone for all of your help...
Regards,
Joel Cervera
age 34
Diagnosed 6/2006
Was on 400mg Gleevec
Changed to Sprycel 7/2007 due to liver intolerance
Sprycel doseage: 140mg/day

hey Jennifer:
Good advise! I also got approved with the first check coming in September. I
miss my job and hope to get back to it Jan. or Feb. next year. I am a
workaholic also. I spent alot of my time at work wishing I could be home (I am
a single parent). Now that I am in isolation recovery stuck in my house, I just
wish I could leave this house and go back to work! The saying is - be careful
what you wish for, it might come true! best luck with the biopsy.
Therese
vegasrnjen@... wrote: Hi group-
I just wanted to add my success with obtaining disability on the first
attempt. I was unsure as I also had heard the horror stories of having to
fight
and get lawyers, etc. I was not granted the disability due to "Leukemia" but
due to the side effects of extreme fatigue, chronic bone and muscle pain,
loss of concentration, chronic dehydration from extreme bouts of diarrhea and
gastritis as well as de pigmentation of skin.
I think its important to focus of the causes of why you cant work and not so
much the "cancer" itself. Cancer alone is not a disability. And they will
tell you that. I also stayed in constant contact with the person making her
decision. I sent her weekly labs and dictation from my doctors appointments.
She got to know me as an individual and not a person on a piece of paper on
her desk. Stay involved, be true, advocate for your self and fight for it if
you need it. Please don't abuse the system if you are not disabled as it
makes it hard for those people who really do need it. I was in the hospital
every 4-5 weeks to the point of getting weekly IV's twice a week from home. I
now have been the healthiest since not working, still have the side effects
but I can be a mom to my 3 children while not having to be debilitated or in
the hospital. I am hoping to go back to work by the end of next year. I miss
being a nurse as I am a workaholic. Staying home is mentally hard to
swallow. I am glad I had this to fall back on for now. I don't get my first
check
until September and living on one income with our 3 children is tight right
now but I can see the light at the end of the tunnel. We also relocated to
the Midwest for a less expensive cost of living.
I am having my 5th bone marrow biopsy this afternoon with my new doctor out
here. I am terrified since it is with a new doctor. I hope all goes well.
I had a horrific experience with my first doctor for those of you who can
remember so I am sure I will panic once I get there. Yes, I will be
medicated.
I hope greatly. I have those images from the first one in my head, although
I don't think anything could ever be so brutal again. I will share results
when I get them.
Best to all-
Hugs
Jennifer
CML 5-13-05
Gleevec 800mg PCRU
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi group-
I just wanted to add my success with obtaining disability on the first
attempt. I was unsure as I also had heard the horror stories of having to
fight
and get lawyers, etc. I was not granted the disability due to "Leukemia" but
due to the side effects of extreme fatigue, chronic bone and muscle pain,
loss of concentration, chronic dehydration from extreme bouts of diarrhea and
gastritis as well as de pigmentation of skin.
I think its important to focus of the causes of why you cant work and not so
much the "cancer" itself. Cancer alone is not a disability. And they will
tell you that. I also stayed in constant contact with the person making her
decision. I sent her weekly labs and dictation from my doctors appointments.
She got to know me as an individual and not a person on a piece of paper on
her desk. Stay involved, be true, advocate for your self and fight for it if
you need it. Please don't abuse the system if you are not disabled as it
makes it hard for those people who really do need it. I was in the hospital
every 4-5 weeks to the point of getting weekly IV's twice a week from home. I
now have been the healthiest since not working, still have the side effects
but I can be a mom to my 3 children while not having to be debilitated or in
the hospital. I am hoping to go back to work by the end of next year. I miss
being a nurse as I am a workaholic. Staying home is mentally hard to
swallow. I am glad I had this to fall back on for now. I don't get my first
check
until September and living on one income with our 3 children is tight right
now but I can see the light at the end of the tunnel. We also relocated to
the Midwest for a less expensive cost of living.
I am having my 5th bone marrow biopsy this afternoon with my new doctor out
here. I am terrified since it is with a new doctor. I hope all goes well.
I had a horrific experience with my first doctor for those of you who can
remember so I am sure I will panic once I get there. Yes, I will be medicated.
I hope greatly. I have those images from the first one in my head, although
I don't think anything could ever be so brutal again. I will share results
when I get them.
Best to all-
Hugs
Jennifer
CML 5-13-05
Gleevec 800mg PCRU
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hey Group. . .
THANX for your posts Zavie, Therese, & Terry. . .your info couldn't have come
at a better time as I have received 4 private emails in the past week from
survivors who knew that I had posted information previously regarding Social
Security Benefits. I am emailing the legal aid Attorney I worked for over 30
years ago. He's a SS Attorney now, nearing retirement. Brother and Sister
Survivors planning to file for SS benefits, email me privately any
questions/concerns and I will add them. I promised 3 survivors that I would be
good, so I will. It doesn't matter whether you are in USA or CA; there's always
the people who slip through the cracks~~whatever. My X~~the ole fart had a
co-worker who was getting workman's compensation and putting roofs on houses~~go
figure. Since my COPD diagnosis, I can't climb the stairs to my daughter's 2nd
floor apartment, I know she loves the fact that I can't come by unannounced
anymore (hehehe).
Yess, my lil brother lost his lump-sum payment due to the contract of his
private insurance company per the FED government money. This may have been your
case Therese, or you may have worked and didn't have retroactive funds
available. Check your paperwork and let me know, that will be something else
that I can alert future survivors too with our government having employees
making minimum wages who don't take pride in their work anymore; also with the
'puter. . .pressing the wrong button (hehehe).
There are people getting FED benefits, working, and furthering their
education. I wish I had known how to 'work the system' from 1991 when I first
became 'disabled' until 2003 when I was 'deemed disabled' and finally approved
for benefits. Like so many others who are becoming frustrated. . .have questions
now. . .I had to continue to work.
Personally I have seen #1) 85%+ are denied initially upon filing for FED
benefit, #2) under 50~~automatic denial, #3) between 50-55 with multiple Chronic
Diseases with SS Attorney you will be approved upon appeal, #4) any age with
Chronic/Co-Morbidity Diseases, all Doctor's records, and additional personal
comments of daily life approval at appeal with a SS Attorney.
The government isn't in the business of 'giving' money to sick people;
state-funded SSI will give money to the so-called alcoholic/substance
abuser/drug dealer who has been deemed mentally ill. He's an abled body young
man who has a payee and becomes incarcerated. However SSI will not fund dental
care for children, who get infections and die~~go figure. FYI~~my 2 cents.
Take care. . .beat the heat. . .I have ALL in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Hi Rene,
Welcome to the group. I'm sorry to hear about your grandson. Do you
know why the doctors don't want to do a BMT on your grandson? Is it
because he's doing well on the treatment they are currently giving
him and a BMT isn't necessary at this time?
I'm not very familiar with ALL (most of us here have CML) but I do
know that the cure rates for children with ALL are very high.
The Leukemia & Lymphoma Society has a lot of good information about
ALL. You can read their site here:
http://www.leukemia-lymphoma.org/all_page?item_id=7049
All the best to you and your family,
Tracey

Hi
I have been on disability for about 1 1/2 years now due to my CML. I
did not have a problem getting disability-but apparently is depends
some on where you live.
All the best.

Does any one have disability or ssi? and did you get it because of the
leukemia? And if so was it a long process?

Dear Group,
I was approved for disablilty last year. It was not a long process for me but I
have heard this was an exception. I was approved because of CML and liver
function failure due to Gleevec (function has returned and I am now on Sprycel
and doing well. The interview was done over the phone and the Doctor had to
send in a report. It took a couple months and then I was approved on the first
try. I have heard you may have to apply several times. I understand I will
probably have to be reviewed in the future. I hope they don't take it away from
me because I am feeling much better. Maybe they approved it becauce I am 61 and
close to getting SS.
Any other questions don't hesitate to ask.
carolyn_kuptz@...

Dear Terry,
I'm very happy to see you back on the board. Congratulations on
your marriage and on finally getting your SSD approved.
I'm sorry about the insurance situation (Do you qualify for COBRA?
Just be careful -- it's important not to let your insurance lapse
for too long, otherwise a future potential insurer can deny you
coverage for pre-existing conditions. I can't remember what the
exact rule is, but I think you can't let it lapse for 3 months or
something like that. Maybe someone else can weigh in.)
I'm also sorry that you and your bride are experiencing pain from
the accident. You have a macabre definition of a honeymoon. : )
Anyway, great to have you back. I've missed your dark sense of
humor.
Warmest regards.
David

That's excellent news Debbie! Congratulations.
Tracey

Great news!
Lets keep it that way!
Chris

Hello,
I have posted here several times over the last year. My husband was
dx in July 2006 with CML. He has been on Gleevec since August and we
hit a stumbling block in January 07 when our PCR levels started to
rise. In May of this year the Dr. upped his dose from 400 to 800 mg
of Gleevec and we realized that some of his other medication was
blocking the absorption of his Gleevec so we concentrated on
separating the times that he took those medicines. Well, we just
received word today that his last PCR shows a greater than 3 log
reduction!!!!!
I want to thank everyone who takes the time to post here. It is a
constant source of reassurance to us. We are thrilled with our latest
results and pray for everyone who is waiting good news as well!!
Debbie

Check www.Drugs.com

I'm taking 600mg/day of Gleevec and have been since around August
2006. I've yet to have a quantitative analysis, but all of my numbers
are stable, with my white count steady around 4000.
I also have rosacea and the worst variant of it, red nose and
thickening of the skin. I've been taking 10mg/day of isotretinoin
since it's the only drug known to halt the progression of rhinophyma.
Does anyone know if this will interact with Gleevec?
Thanks,
Mark

Hi Teresa,
Thanks for the hints on what is working well for you. I have always
taken the full dose with dinner, but I think I"m going to switch it
up a bit and split the dose during the day and see how it goes.
Yes, the water aerobics sound great. I'm going to look into it at
our local high school during the summer. Anything for relief.
Thanks again for your great advice. I sincerely appreciate your help
with this.
Lynn from WA

That sure sounds tempting. This weight gain business is maddening.

I have a question..
I wonder if any one has been able to take a diet pill supplement without any
consequences.
I personally have never taken a diet pill because I am a scardy cat:-) but I
have thought about a new one that's just come on the market recently that a
lot of people I know are using not only for weight loss but energy. I
understand that when prescribed by a doctor they also give you vitamin B
shots. The name of it is Adipex.
Any one ever heard of it or know if something like this can be dangerous to
us?
Lisa Martinez

Hi
400 Mg since 7/21/03 - PCRU for now

Hi MJ!
Gosh, it's really been a long time. So glad you dont have complications this
time and that 600 mg seems to be working. The simpler the better. I'm on
Sprycel and non-detectable. It shoudn't come back. Working part-time in a
family law firm as a receptionist part-time -- 25 hours a week. I'm starting a
few classes in Development in the middle of this month at The Foundation Center
in DC. That will help me brush up on my grant writing, etc skills and I'm
adding a class on international non-profits. We have a lot here and I do have a
particular interest in developing countries and the areas with crushing poverty
constant wars, desperate health needs.
I'm volunteering as a liaison to the EWmbassy of India for The Hospitality and
Information Society. It was created by the State Department. I'm just starting
my India assignment which is very exciting. I was first assigned to Botswana
but they just didn't seem interested in our program which is free to them and
introduces them to Washington, helps with conversation groups so they learn some
English or they can have groups in their own language. Lots of social events
and visiting historical sites, too. Anyway, I have a poarticular interest in
India so I'm eager to get started.
My cats are fine and great company.
Stay well and in touch with your friend in Virginia.
Love,
Susan L

hello,
this is my first time here, you are into Glivec too? for how long? my
husband is taking Glivec too he has been since October 2005, he is
taking 400mg daily during night time. He is still coping up...

THANKS THE TRIAL I AM IN FOR NOW IS CAMN107A2109 AN
ORAL AMN107{GLIVEC}BY NOVARTIS.
I THINK IT IS VERY SLOW BECAUSE MY SPLEEN IS STILL
ENLARGED BUT WEHEN I WAS ON SPYCELL I GOT MORE
IMPROVEMENT.I ALSO GOT BLEEDING FROM MY SPLEEN
YERSTERDAY.AND ALWAYS FEELING TIRED.
I REALLY HAVE TAKEN A LOT OF TRANSFUSSION AND I REALLY
NEED MORE BLOOD.I HAVE GONE TO FOUNDATIONS HERE TO
HELP ME ON COMPASSIONATE NOTE BUT THEY SAY IT ONLY
LIMITED TO SINGAPORE CITIZENS.
I REALLY NEED HELP SO THAT I CAN LIVE,WHAT SHOULD I DO
REALLY CONFUSED.

Hi,
Since you were just diagnosed in April, this PCR test represents
roughly only 3 months of treatment which is much too early to really
get an idea of what's going on. At this early stage, a cytogenetics
test and/or FISH would probably give you a better picture of what's
going on.
You said that your doctor will be doing a bone marrow aspiration in a
month. I assume that he'll be doing a cytogenetics test on the
sample as well as a PCR but it's the cytogenetics test that you
really want to pay attention to as that will give a much clearer
picture of how your treatment is progressing.
Take care,
Tracey

What is important is that the 121,000 is down from 210,000. The .35 log
reduction, equal to a ratio of .44, which means your have a little less than
the average patient at dx. You dr didn't perform cytogenetics and FISH from
the bone marrow ?
Marcos.

Hi Lynn,
I'm sorry to hear of your ongoing struggle with edema. The only
suggestion I would have is to maybe explore one of the other drug
options. Nilotinib isn't supposed to cause as much edema as Gleevec
and I expect that this drug will be approved in a few months.
There's also Bosutinib which according to Dr. Shah, the worst side
effects were dirreah and rash. Both drugs are supposed to be more
potent than Gleevec so I don't think you'd be compromising your CML
status by changing, but hopefully you would get some relief from the
edema.
I hope you find something to help soon,
Tracey

Hi Lynn. You describe exact same problem I have. I was dxd in 1/03 and I kept
putting weight. To fight the weight gain, I end up eating one meal 500 cal a
day, still couldn't loose. Water pills lower my blood pressure to a critical
condition, which I had to stop taking my water pills. At one time I read that
Novartis are doing some research to find out if Gleevec is slowing our
metabolism and this may be the case. Some other CML patient has lost weight on
Gleevec. It may be our genetic which play a role with fat Gleevec. But I guess
to stay alive has a price. I am trying to exercise for my heart to stay healthy
if I am not tired. I am not sure if we can take any additives without side
effect such as diarrhea. I wish I had an answer.
Teresa T
Dxd 1/03
Zero club #764

Hello fellow CML'ers,
Has anyone had experience with major swelling/edema and huge weight
gain while on Gleevec? I was dx'd 12/03 and this problem just keeps
getting worst and worst.
I have ruled out any possible secondary problems, and all of the tests
have come back normal. Thyroid, heart, kidney, diabetes, eating low
sodium, low fat, etc. My body has just ballooned and I'm extremely
frustrated.
I am PCRU and on 400 mg Gleevec. I also take 80 mg Lasix along with
Potassium, but I am not getting relief. I may go alot, when the lasix
kicks in, but it doesn't make a visual difference... and when I go to
bed and I get up the next day, I'm all swelled up again, and the
process continues.
When I was dx'd, I had a huge spleen and very high white count and I
wonder if I really screwed up my body and it's ability to release
fluids. I hardly urinate if I don't use diuretics. Could I have
Lymphedema caused by Gleevec?
I know my Hem/Onc is frustrated by it as well, but with Sprycel causing
more edema issues, and Plural Effusions, I would definately NOT be a
good candidate.
Does anyone know if the AMN107 causes edema? I get a great response
from Gleevec, but this problem is really getting difficult to live with
and be happy.
Does anyone do Accupuncture? Body wraps, and/or lymphatic massage?
These are some things I'm thinking about. Are there any safe herbal
additives that can be taken with Gleevec?
If there is anyone with CML that is experiencing this same problem or
has any suggestions, please feel free to share. I would sincerely
appreciate any input.
Sincerely,
Lynn from WA

Hello,
Firstly sorry to hear your situation. Perhaps some of the more
experienced members can provide you with some feedback and thoughts..
What has your doctor advised you do?
Is your Doctor a specialist in CML?
What part of the world country/city are you in? Perhaps if you can
post this their may be a chance that someone who is in your region or
familiar with your area can advise of a good Doctor you can be
referred to if you feel you are not getting the best care or advice
possible and maybe even advise if there are any clinical trials in
the area.
You have mentioned you are on Sprycel.
What dose level of Sprycel are you on?
Are you having any other type of medication?
How long have you been in blast crises?
I wish you all the best and please do post here and keep us all
updated..There is a lot of experience and good advice available on
this Support Group...
Best Wishes
Bil in the UK

I am sorry to hear of your situation. Are you working with a
specialist? What is he/she recommending? Can you look into a
clinical trial option? I wish you the best.
Chris

If you are in blast phase, are you being serviced by a top
tier Leukemia Facility or CML expert? If so, what are they
saying.
If not, you need to get to one as soon as possible. They
will have options for you.
With warmest regards,
Matt Maynor
mtmaynor@...
904-219-9108
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In a message dated 7/3/2007 7:25:19 A.M. Eastern Standard Time,
petbenin@... writes:
WHAT SHOULD I DO I AM IN BLAST PHASE,HOW DO I COME
BACK TO CHRONIC PHASE. STILL ON SPYCELL.

WHAT SHOULD I DO I AM IN BLAST PHASE,HOW DO I COME
BACK TO CHRONIC PHASE. STILL ON SPYCELL.

I am on 400mg Gleevec since Sept 06. I also have the tiredness. Very
oftne, I just don't have the energy to do things, like talking, typing
email, cooking, shopping and excercise. I just sit or lay on the
coach. I don't like the tiring feeling. My life go much slower pace
than it used to be. I also sleep more.
I will get as much things done in the morning when my energy is seems
to be highest (sometimes not though). I work in the afternoon. In
the evenings, I just relax.
Cindy

Congratulations, Amy!
I wanted to let you know that my husband and I also conceived our
2nd child child while he was on Gleevec in 2002.
Our daughter was born fine and healthy with no problems. I know
it's different b/c I'm not the one w/ CML but I do hope it helps to
lend some comfort, nonetheless.
He's on Sprycel now [Gleevec didn't do the trick for him] but he's
in cytogenetic remission and doing well. And our daughter is 4!
I'll keep you in my prayers and best wishes.
Kimberly Pendergrast Harris
husband Michael - diagnosed 3/98 CML (age 38)

Amy B.,
Congratulations!! I'm so happy for you. I hope that the second half of your
pregnancy goes well.
Hugs,
Dana

Sorry it has been a while. I have had a lot going on. Still pregnant,
still off Gleevec, and hanging in. I am now 20 weeks in to the
pregnancy, its is a "BOY." My last WBC count was 10.9, down from the
previous, so I am a little less stressed about that. Thank you all for
your prayers and well wishes. I will try to be better about updating
from now on.
Amy B.

Hi welcome sorry you are one of us.If you are on 800 rather than 400 side
effects/are different also what is your white count.If you have killed off your
bad white cells,that \'s a the first thing .So some side affects some are worse
or not depending on person's body.Etching skin and scalp/gurgley intestines
possible need to go to the bathroom.fatigue,wet eyes,come and goes and blurry
vision,short temper,maybe speech problems,sun seems hotter,will not tan
cramps.These are my side affects,not bad compared to some.Keep away from alcohol
drinks,grapefruit,St,Johns wart,vitamin c
Gleevec has to be stored between 49 and 72 those figures are close.

Hi:
I haven't been to this group for quite a long time. Just to say
hello. Gleevec, 600 mg, seems to be working for me though I'm not in
complete remission. I continue to work parttime, and take care of the
rest of life, including three little ones, cats that is, MJHodor

Thanks for the great summary, as we are 1 hour ahead
of you folks in upper Canada it gets rather late for
me to catch these great information sessions. I enjoy
your write-ups Tracey
Skipd
SkipD
Dx'ed Dec 19