CML

Hello everyone, Chris here in Milton, FL. Exactly 90 days ago today I
received my CML diagnosis. Things are going ok. I go back for a CBC visit
next
week. My last visit was a little rough with my WBC having come up to 12.9.
That really, really bothered me. But, several of you posted and assured me
that was very normal to roller coasted a bit for the first six months. The
post and personal emails were great and really helped me through what was an
emotional week.
Now, I am trying to re-assimilate back into a routine and lifestyle and it
is a real struggle for me. Work is going pretty well. I am a sales rep, I
had been wanting to cut loose of some territory for a few years, this was a no
brainer for me to do so at this point. I set my own schedule, so that is all
pretty good. But my social life is really hurting. I am 41, married,
Tabitha - 16 happy years, father ,Taylor -13yr old. We love to outdoor
entertain,
cookouts, lots of outdoor activities, etc. I was used to being the life of
the events. A few weeks ago at a cookout/bonfire at some friends house, I
actually fell asleep in my lawn chair at 8pm. I was always the guy that cooked
the best, drank the most, karaoke'd the loudest, you get the idea. We all
just had so much fun. I am just having so much trouble finding my stride now.
I admit it (at least for me), I find it hard to chill out with a Diet Coke,
while everyone else is having a diet beer.
Anyone else go through this? I would love to hear from anyone with thoughts
on the matter. This is the stuff that the Onc just don't have answers for.
AND, for me, it is part of my life, or at least used to be.
Please feel free to email me direct, if you wish: _Letitbe@..._
(mailto:Letitbe@...)
Chris Flocken
Dx 03/01/07
Gleevec 400mg
************************************** See what's free at http://www.aol.com.

Anybody hear or read anything new about the FDA Tasigna approval
schedule? I know they applied in November 2006 and it got orphan drug
status approval in March 2007. If it goes anything like Sprycel did,
it should be in June or July of this year? Any kinks, rumbles or
rumours would be greatly appreciated. Call me a sub-optimal response
and waiting... DX 9/2003 800 mg/d gleevec.

Hey Group:
THANX Skip ! ! ! That's another reason why U are my Hero, though you don't
like me saying it (hehehe). I have my good days/bad days (FANTASTIC/A-OK) when
dealing with chronic orthopedic pain. All my Doctor's office staff know when I
enter my pain level by my answer to 'How are you today'; they get 'FANTASTIC' or
'A-OK'; which means I am in pain level 6-7 (never pain-free). I think about you
dealing with our bug almost 30 years and I think about my morbid diagnosis with
15 Chronic Diseases in 2003. I think about the H**L I went through as my body
adjusted to our gold.The side effects that I am currently dealing with daily;
not to mention the 5 additional chronic diseases that I have acquired since my
diagnosis in 2003. I think about the 4 chronic Orthopedic diseases requiring
surgery prior to my diagnosis and the 3 additional since diagnosis. I had 8
Specialists after diagnosis, now I have 8. The 3 OrthoSurgeons were replaced
with my PM/Pain Management Doctor and other
Specialist per my chronic illness. I would give my 1st born for a 'GOOD
Internist' . . . but each 'specializes' . .so each has to be 'paid' (hehehe). I
think about the fact that 'Yes' you were better off with 1 GREAT Doctor who
personalized your treatment. I'm not knocking my doctors, they are Good; and
I've educated my H/O about our bug (hehehe). I think about how I have managed my
survival these past years; how like you. . .I "LET GO & LET GOD". . .
THANX, again Skip for being there for me and continuing to be here for us.
I received an email from a sister survivor and she called me her Hero. . .like
you. . .I don't feel I am a hero. I've also been told that I am an inspiration
by other brother & sister survivors. I've been there/done that in my survival
and should there be any way that I can help by sharing my experiences. . .I am
available. I've also heard the whiners, exaggerators and those who are 'in
search of a to-date non-existent Cure; I don't have any time to waste on anxiety
& depression and I have no 'options'. Now I'm glad that I didn't, because I
don't think I would be here now if I'd taken Xanax back in the 80s or Neurontin
after diagnosis of our bug. The commercial says "If you or anyone you know has
attempted or committed suicide. . .please call this 800 number". I taped it to
show to my daughter, she may have been able to become part of the class action
lawsuit (hehehe). Before you email me, I'm not talking about any of my brother &
sister survivors. . .because I realize
that some of us do need these medications. I am fortunate enough to not be one
of them, and if you know yourself and my personality by now; you know that I am
not posting about you personally. I know that should I not have been 'UPBEAT',
after my morbid diagnosis; I had 15 fatal/terminal/chronic diseases; son entered
USAF during war after 9/11; THA Surgery; the ole fart after almost 25 years
abandoned me and a long, very nasty divorce over finances went on for almost 4
years; CAD Diagnosis & 2 stents; daughter dropped out of college/-2 years to
enter med. school to care for me. Yesss, I could've been one of the statistics.
Thanx, my Hero~Skip, my Pioneer Brother & Sister Survivors, Anjana, my Brother
Scott, Sisters Tracey, Nancy, and as Angie says. . .I am "CML Alive & Kicking"
and if I didn't mention you; dang 'gold' brain. . .you know who you are. . .you
too BB~~Zavie !
" I LET GO & LET GOD " . . . " I AM A SURVIVOR " . . . " I AIN'T FINISHED YET
" ! ! !
"K"
"I AIN'T FINISHED YET"!!!

Wendy wrote:
We are seriously considering trying to see Dr.
Druker. As I have stated before, we really like and respect Joel's onc., but
it seems he is slightly "different" than the normal Gleevec patient,
therefore we might try and see about visiting Dr. Druker as Zavie
recommended. Have you seen him?
It sort of seems like having CML in this day and age is sort of all about
"buying time"...getting the most years you can out of Gleevec, then if you
have to, you have Sprycel as an opton, then if you have to, AMN-107 (though
I know that is not approved as of yet)...and so on...although he really
really wants to try and stay on Gleevec right now. We are hoping his liver
has recovered enough to go back on Gleevec, even if it is at a reduced
doseage.

Wendy-
If you decide to go to Portland and cant get into see Dr. Druker, I see his
partner Dr. Mauro. We have found him to be VERY educated, compassionate and
top notch with CML including all the clinical trials, new meds and lines of
treatment. He works closely with Dr. Druker. I was originally told (2 years
ago) when I was dx. that Dr. Druker wasn't taking anymore new patients as he
was spending much of his time in the lab on research. I don't know if that
is still the case. OSHU is wonderful and the whole treatment team is the
best. You will be in good hands with either doctor. Much worth the trip. I
fly
up there every 3-6 months, as well as I have my PCR and bone marrows done
there. I have a local oncologist in case I get sick but OSHU runs my regimen.
Hope all works itself out for Joel. Take care of you.
Jennifer 35
CML 5/13/05
Gleevec 800mg PCRU
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

I totally agree with you. I was in that same position a couple of
years ago and then I decided to attempt to put together a men's group
to sing the old tyme hymns of the church. I kept saying I want, I
want instead of asking What do you want me to do? The group did stay
together for a year but only after I learned to wait for an answer
and not do what I thought would be right. Having CML has made me
slow down and look around and see all the wonderful things that are
provided for us. This universe we live in is trully awesome and the
people I meet and associate with are all wonderful if I just give
them a chance without putting expectations in front of our
relationships.
Richard H.
dxd 2/03
400mg Gleevec 3/03
CCR 11/03
PCR-negative 11/04
Q-PCR .0014 11/05
Q-PCR .0013 11/06
BMB-negative 12/06

Hi Wendy,
Thank you for your kind words. I remember when I was diagnosed over
5 years ago, how many people helped me to find information and
understand things. If I can give back, even a fraction of that, to
the "newbies" today, then I will be more than pleased.
I haven't seen Dr. Druker personally because I've been blessed to
have "garden variety" CML so I never really felt the need to see him
myself. If I had any complications though, I wouldn't hesitate to
contact him.
I agree with you that the current treatments we have for CML are ways
of "buying time" but I'm confident that we will be able to "buy" a
significant amount of time with them until a cure is found. After
all, a cure is only a question of time isn't it :)
I'm glad Joel is feeling well. Feeling well is as important as being
well.
Best wishes to both of you,
Tracey

Hi Wendy,
Here's an article showing that liver toxicity can be successfully
treated using steroids so although Sprycel may be an option for Joel,
it's by no means the only option.
http://www.haematologica.org/online/2006/ECR27.pdf
Let us know how he's doing,
Best of luck,
Tracey

Hi Tracy--
Once again, thank you so much...it is amazing to have a resource like you
who spends time researchng how to help others with your disease. We have
printed this article and will read it, and maybe take to Joel's onc on
Tuesday at his next appt. We are seriously considering trying to see Dr.
Druker. As I have stated before, we really like and respect Joel's onc., but
it seems he is slightly "different" than the normal Gleevec patient,
therefore we might try and see about visiting Dr. Druker as Zavie
recommended. Have you seen him?
Joel has felt awesome this week - short, mini Gleevec break! But--his liver
will be retested Tuesday and we will see what the numbers look like then. I
have joined the "chat" board about Sprycel, just so we are informed as much
as possible about that drug, if that is where this is headed...
It sort of seems like having CML in this day and age is sort of all about
"buying time"...getting the most years you can out of Gleevec, then if you
have to, you have Sprycel as an opton, then if you have to, AMN-107 (though
I know that is not approved as of yet)...and so on...although he really
really wants to try and stay on Gleevec right now. We are hoping his liver
has recovered enough to go back on Gleevec, even if it is at a reduced
doseage.
Once again, thanks so much Tracy...I hope some day I can help you as much as
you have helped us..
Regards,
Wendy Cervera

A man, was riding a donkey along a steep path deep
into the
Rocky Mountains, he sat half asleep in the morning
sun. A rock fell
from a ledge above him, knocking him off his ass over
the edge
of the path, he managed to grab a branch and then an
outcrop
and hang there. He knew that a lot of people used
this path and
he would be saved. He hang there full of hope, when
he heard a
hoof beat he called out help me help me but they
just got louder
and then started to fade. Time passed, then he could
hear the sound
of hoofs again, This time the person was singing,
help me O please
help me the man cried. The sound of the hoofs and
the singing
faded. Starting to worry as he was getting tired, he
strained to
hear any one on the path that may help him. Again he
herd
the sound of people talking and again he cried help
help help help
O please help me. The sounds of the voices grew
louder and louder
and then started to fade. The man was beside himself,
he was getting
very tired and his legs and fingers were hurting, he
was going to
fall to his death, with a loud pitiful voice he cried
O God Please
God help me I am going to fall.
A voice so strong yet so soft came out of the clear
blue sky,
DO YOU WANT ME TO HELP YOU God asked
Yes O Yes Cried the Man.
Again the voice asked DO YOU REALLY WANT ME TO HELP
YOU
The man cried out Dear God yes I want you to help me
I will do
anything you ask forever more
Then God replied LET GO
29 Years ago this story was told to me in a church
service, I took it
to be directed at me. It told me to let go and let
GOD. After it had
sunk into my thick skull, I realized that nothing I or
(back then) the
doctors could do would change the outcome of this rare
disease.
I did not change and become a saint, nor a much better
person than
I had been. I just saw things in a different light.
Over the years
I just lived a my life, I did not worry about CML, I
lived my
life as if it were the last day on earth, I traveled
around the USA and
Canada. I worked and did volunteer work. I lived my
life as I had
before CML. So to you who have sent private e-mail
asking my secret.
It is the story above I guess. Try not to worry CML
will do what it
is going to do, life will do what it is going to do.
The best you
can do is live.
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

Hi Chris,
Welcome to the group. Yes, it's nice to know that there are a few
options for us, though it's always scary when first diagnosed.
Don't forget the Leukemia & Lymphoma Society for additional support --
www.lls.org. You can get $500/year financial assistance if you need
it -- not a huge amount, but every bit helps. The LLS also has group
support and message boards at the website.
God bless.
peace,
Kathy
dx 5/03

Hi Shelly,
Many CML specialists have thought about it. There have been several clinical
trials combing drugs and still no Holy Grail.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Margot,
Thanks for posting this. Sometimes, with all the drama I've got going on I
don't think
to do things myself.
Dr. Koller is my doctor, too. WHAT A GUY!!!! We are two very lucky people.
Denice
Margot Menefee <redbudln@...
Hi, Fellow Survivors:
Its time to let you know that my MD Anderson doctor, Dr. Charles A. Koller,
will once againfor HIS fifth timebe participating in the Houston HPD
Bicycle Relay for The Leukemia & Lymphoma Society. You may recall that Dr.
Koller suffered from kidney cancer three years ago which caused him to have
one of his kidneys removed. This year, after having a quarter-size
metastasis removed from his lung, he considers himself once again
cancer-free and physically able to participate in this ride.
In addition to Houston firefighters, police, and other volunteers and
survivors, Dr. Kollers daughter Sarah will ride for the second time after
she raised the $6,000 pledge minimum. The funds raised last year amounted
to $240,000 for The Leukemia & Lymphoma Society. Dr. Koller believes that
the L&L Society provided the major funding for the discovery of Gleevec by
Dr. Brian Druker, the first drug of the Kinase Inhibitor type. He also
tells me that today there are many exciting drugs in this category,
including two drugs approved to treat renal cell carcinoma, the type of
cancer Dr. Koller has.
The ride will be called From NASA to NASA and will leave from the Johnson
Space Center in Houston on June 12 at 8 AM and arrive at the Kennedy Space
Center in Cape Canaveral, Florida, on June 17. The relay ride is a 2,013
mile trip going through Little Rock, Arkansas; Memphis and Nashville in
Tennessee; Atlanta and Augusta in Georgia; Columbia, Florence, and
Charleston in South Carolina; Savannah, Georgia; Jacksonville, St. Augustine
Daytona Beach, and Orlando, Florida.
I hope that all of you will support Dr. Kollers selfless efforts by making
a donation for his ride with whatever amount you can contribute. No amount
will be too small. You may make out your checks to The Leukemia and
Lymphoma Society. 100% of your donation is fully tax deductible.
Wont you please send a note of encouragement and wishes to him and the
relay group (address below). He will proudly, as in the past, carry your
note with him across the finish line.
Please mail your checks to: Charles A. Koller, MD
MD Anderson Cancer
Center-Box 428
1515 Holcombe Blvd.
Houston, TX 77030-4009
Thanks to all of you from your fellow survivor and list member,
Margot Menefee

Has anyone thought about the idea of combination of drugs to try for a cure?
I was on IM and Interferon for about 1 1/2 years a few years ago, until I just
could not take the interferon and Neupogen side effects. I was primarily
interested in IM and Sprycel. I am testing negative on nested PCR, but I am
looking for the Holy Grail of a cure, like most of us! Just wondering if anyone
has spoken to their doctors about it. I will be seeing Dr. Mauro in July, but I
don't think that he would be too keen on it.
Shelley

Hi Barbara,
It looks like the Gleevec is working great! It's hard to compare PCR
values because every lab uses independent methods to do the test but
generally speaking, anything that's as far as the third decimal point
is a GREAT result. You'll have to find out the lab's baseline before
you can be sure but from the surface, I think you should celebrate.
Congratulations,
Tracey

Hi all:
My husband's liver results came back and it is 6 times the toxicity rate.
Tracy, I know you said they dont usually take people off Gleevec unless it
gets to 5 times, well I guess we are there. For now, he is remaining off of
Gleevec until next week, waiting for his liver counts to recover. His doctor
is throwing around the idea of lowering his doseage of Gleevec to 300mg and
see what happens. But, she has already began discussing Sprycel. We are
concerned about the lower doseage since we have heard more about developing
resistance to it at lower doseages.
We have heard nothing but great things about Sprycel, but cant believe we
are already at the point of possibly have to switch. He has only been on
Gleevec since last July (with a 1-month break in October due to severe
neutropenia). Everything was going so great with Gleevec, then this hit all
of the sudden.
Now we are slightly concerned---hope his liver recovers (it seems like it
will with time). Then--does he try the lower Gleevec doseage or does he
switch to Sprycel?
Maybe a Dr. Druker visit is in order?
Wendy Cervera
wife of Joel Cervera, aged 34
Diagnosed 07/2006
400mg/Gleevec daily

WAAAAAAAY COOL!

I haven't seen my doctor yet, but did get a copy of my latest PCR Analysis.
Wondered if someone could confirm the analysis for me. I'm anxious to know
if the Gleevec is working. I've been on 400mg since diagnosed July 06.
Results: Positive Major breakpoint (0.006%)
Interpretation=this result is consistent with minimal residual disease
BCR_ABL transcript
Major a13a2=.006%
Major e14a2=not detected
Major combined=.006%
Minor e1a2=not detected
Thanks
Barbara
Fayetteville, GA

Hi Wendy,
I was just approved today for AMN107 and I start on Monday.
I was told that the trial would be 2 years.
How long after that approval would be I don't know.
If you are looking at trying AMN107 maybe you should try to get in on
a trial,
If you want me to I can check Monday and see if there is a trial near
you, just send me your area.
Regards and good luck to us all!
Terry

Dear Wendy,
I was on Gleevec for 3 months with great results when my liver counts
started to rise. They got so high that I became jaundiced. I was
taken off of Gleevec and what should have cleared up in 5-7 days took 7
weeks for the liver to recover. I have not had any alcohol nor did I
take tylenol. I was just one of the small percent of people who could
not tolerate Gleevec. My Onoc and the medical college in Milwaukee
decided that Gleevec was not an option. I then was in limbo until the
FDA approved Sprycel last June. I was put on the recommended dose of
70 mg twice a day= that was way to strong for me and I have to be
transfused. I was then put on the lowest dose 20mg twice a day. My
last bone marrow showed that I am in remisssion. Don't give up there
are so many options with new meds on the horizon all the time. Best of
luck to you and your husband.
Carolyn

Hi All! I don't post often and usually only respond when I think I
have something different to add other responses to a question. I
have had consistent low red cell and HGB counts for over 4-1/2 years
since I was diagnosed and last fall they began to fall below
transfusion level. After I had the normal 6 month Q-PCR in Dec. it
came back at .0013 and a BMB (also negative) and upper, lower, small
bowel checked for any type of blood loss and those tests were also
considered negative. I was having transfusions every 3 to 4 weeks and
also had an Iron infusion, After 3 months Dr. K. suggested we reduce
my Gleevec from from 400mg to see if that helped. We reduced it to
300mg (my ONC checked with Dr. K. at MD Anderson)to see how much
difference there would be. After about 45 days I started showing
that I might be starting to manufacture some red blood cells and I
was able to wait 8 weeks before I was at transfusion level again. I
had my 6th transfusion a week ago and when I met with the ONC
yesterday he felt it was time to try something else and I was in
agreement. I will be having a Q-PCR drawn in 2 weeks. I stand a good
chance of responding to procrit, but in the state where I live most
insurance companies with not pay for it unless the patient is on
infusion chemo drugs or on dialysis. My VA ONC thinks he build a
case to get it approved through them, but that is still unknown at
this time. (My ONC and I think it is too much of a risk to reduce the
dosage to 200mg because of those that have become Gleevec resistant)
I have opted take a Gleevec Holiday for a minimum of 90 days with
regular blood checks and visiting with the ONC once a month. We
certainly hope that this works and know that it can only happen with
guidance beyond my or the ONC's abilities. My thanks to Skip and
Susan R. for reposting their histories recently for helping me to
make this decision. The comforting knowledge is that I am doing
this knowing that if it does not work that I can pick up with Gleevec
and possibly procrit where I am leaving off or at a higher dose that
400mg and 2 proven studies that are working for many that do become
resistant to Gleevec. Sorry to have been so long winded but I didn't
want to leave most of my major considerations unspoken. Thanks,
until later
Richard H.
dxd 2/03
400mg Gleevec 3/03
CCR 11/03
PCR negative 11/04
Q-PCR .0014 11/05
Q-PCR .0013 11/06
#530 Zavie's Zero Club

Hi Richard,
I don't think that you are playing Russian roulette. This has been well
thought out and makes a lot of sense to me. There are many patients who have
taken Gleevec breaks without any ill effects.
Check out Erin's blog (http://www.glamour.com/lifestyle/blogs/editor). She
has been off Gleevec for 6 months and still remains PCRU. I'm not suggesting
that you get pregnant first, but depending on the individual, the break can
work.
Good luck,
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi, Fellow Survivors:
Its time to let you know that my MD Anderson doctor, Dr. Charles A. Koller,
will once againfor HIS fifth timebe participating in the Houston HPD
Bicycle Relay for The Leukemia & Lymphoma Society. You may recall that Dr.
Koller suffered from kidney cancer three years ago which caused him to have
one of his kidneys removed. This year, after having a quarter-size
metastasis removed from his lung, he considers himself once again
cancer-free and physically able to participate in this ride.
In addition to Houston firefighters, police, and other volunteers and
survivors, Dr. Kollers daughter Sarah will ride for the second time after
she raised the $6,000 pledge minimum. The funds raised last year amounted
to $240,000 for The Leukemia & Lymphoma Society. Dr. Koller believes that
the L&L Society provided the major funding for the discovery of Gleevec by
Dr. Brian Druker, the first drug of the Kinase Inhibitor type. He also
tells me that today there are many exciting drugs in this category,
including two drugs approved to treat renal cell carcinoma, the type of
cancer Dr. Koller has.
The ride will be called From NASA to NASA and will leave from the Johnson
Space Center in Houston on June 12 at 8 AM and arrive at the Kennedy Space
Center in Cape Canaveral, Florida, on June 17. The relay ride is a 2,013
mile trip going through Little Rock, Arkansas; Memphis and Nashville in
Tennessee; Atlanta and Augusta in Georgia; Columbia, Florence, and
Charleston in South Carolina; Savannah, Georgia; Jacksonville, St. Augustine
Daytona Beach, and Orlando, Florida.
I hope that all of you will support Dr. Kollers selfless efforts by making
a donation for his ride with whatever amount you can contribute. No amount
will be too small. You may make out your checks to The Leukemia and
Lymphoma Society. 100% of your donation is fully tax deductible.
Wont you please send a note of encouragement and wishes to him and the
relay group (address below). He will proudly, as in the past, carry your
note with him across the finish line.
Please mail your checks to: Charles A. Koller, MD
MD Anderson Cancer
Center-Box 428
1515 Holcombe Blvd.
Houston, TX 77030-4009
Thanks to all of you from your fellow survivor and list member,
Margot Menefee

Hi Wendy,
You don't mention how high Joel's liver enzymes are but if they're
more than 5 times higher than the upper limit of normal then it is
standard protocol to stop the Gleevec and wait for the counts to come
down. If it is the Gleevec that is causing the toxicity, he has to
stop taking it before it permanently damages his liver so don't worry
about him not taking the Gleevec for a few days. Right now, his
liver is a more pressing issue than the CML is.
Did Joel mention to the doctor that he had been drinking alcohol and
taking Tylenol before this happened? Liver enzymes can go up and go
up VERY fast once its exposed to a toxic level of drugs (which the
combination of Gleevec, alcohol and Tylenol could easily cause) so
it's not at all surprising that this could happen "all of a sudden"
when things were going seemingly well previously.
For some people who couldn't get their liver counts under control
while on Gleevec, Sprycel was an option that was successful so that's
probably why the doctor mentioned it.
Let us know when he gets his results back but if he lays off the
alcohol and the Tylenol, I expect that things will settle down so try
not to worry.
Take care,
Tracey

Hi all--
I posted yesterday about my husband's liver counts coming back from his onc.
The test for hepatitus will not come back until the day after tomorrow. So
far, he is showing normal numbers for iron, so that is not a problem. His
onc talked to Novartis today, about Gleevec's effects on the liver. Novartis
people advised her to take Joel OFF Gleevec for 5-7 days, just to monitor
his liver. If his liver "counts" (sorry--do not know correct liver terms as
of yet), adjust, then they have to assume it is the Gleevec causing this.
(But--he has been on 400mg/daily since last July...why would this liver
issue happen just in the last WEEK only???). Anyway, together, our onc and
her contacts at Novartis feel that they should take him off Gleevec for 5-7
days, then do another liver test to see where we stand.
I know Dr. Druker NEVER advises going off Gleevec...does anyone else have
any opinions about this?
His doc is already tossing around the idea of Spyrcel....
This seems to be moving rather quickly...and we were just kicking back
enjoying the Gleevec ride...then this happens....
What is up???
Wendy Cervera
wife of Joel Cervera
Diagnosed 07/2006
400mg/daily

K, Thank you so much for your info. You are a great source of inspiration. I
do weekly CBC's so I guess playing around with my dosage can't hurt.
Thanks, Kristine

oh wow it was such a heart warming stroy that i have to read it over and over
again....it really touched my heart that i cried knowing that i wasn't alone in
this journey. i admire you for the courage in facing life despite all those
tragic moments..yeah we all go through a tough road in life..i just felt that
mine was tougher..but when i read your story, i have realized that i should be
brave also for my kids sake. i am glad to have joined this group. i know i am
not alone in this journey called....life...thanks so much and hope to hear more
kind words from you..you're great!! you're a wonderful person and i wish you
more love to give and continue being a blessing to others! take care and
Godbless us all!!
mtadros9@... wrote: Lisa you are such a brave Mom God Bless
your heart and fill your life with joy and good health.
Teresa T
dxd 1/2003 CCR 7/2003
Gleevec 400mg
PCRU 3/2007

Lisa you are such a brave Mom God Bless your heart and fill your life with joy
and good health.
Teresa T
dxd 1/2003 CCR 7/2003
Gleevec 400mg
PCRU 3/2007

Hey Kristine. . .FYI/my 2 cents only. . .
I don't know whether or not I sent you my 'Newbie' letter after your
diagnosis. At 53 in 2003; I was diagnosed in the 'accelerated' stage going into
the blast stage. I had been admitted to the hospital after going to the ER
thinking I had bacterial Pneumonia for the 4th time. At that time, my diagnosing
doctor told me that he was putting me on this 'new medication' Gleevec per
protocol but he didn't expect it to work for me. He also gave me a referral to
the UM Comprehensive Cancer Center in my area. 4 out of 6 Specialists there
determined that I wasn't eligible for a BMT due to 15 fatal/terminal/chronic
diseases and 6/6 determined that I had a morbid mortality of 2-5 months. I came
home, had a 2 1/2 week pity party, and then I armed myself to fight the battle
of my life for my life. I, with the help of these groups; know more about my bug
than my H/O~~Hematologist-Oncologist.
There weren't any trials comparing dosage. . .I was placed on 400, then 600 -
800 and was hospitalized. My dosage was lowered to 400 and there I stayed until
I reached "0/Negative" on the FISH Test. I was hospitalized 3xs with low ANC and
given Procrit. I went from 800,000 per Million at diagnosis to 0.00312 on my 4th
RT-PCR Test results on 5/21/07.
My survival is due to me learning about my bug as an individual and adjusting
my dosage of our gold~what I call Gleevec. We are each a statistic to the
doctors, but an individual in our unique survival of this bug~what I call CML.
After I reached "0" on the FISH Test, I adjusted my dosage to 300 m.g. daily.
Now, 2 years later, I am taking 300 m.g. on 2 - 3 days a week. My reasoning is .
. . "I needed 400 to get me to "0" therefore 300 should maintain me. Adding my
heart, liver, lung, ortho and 15 other diseases; I don't need 300 daily for
maintenance. I've heard of survivors 'poisoning' their systems~~dying in the
early days from major organ failure. I have educated my H/O and at every visit
he says, "keep on doing what you're doing".
Sweetie, 400 is the standard dosage, but it was 'never' the dosage for me. I
went through 'H**L with side effects. I'm not telling you to do what I did, I
kept accurate records of all blood work, dosages, side effects, etc., until I
found my 'niche' (what worked for me). Should you have any questions, don't
hesitate to email me. "I've Been There/Done That . . . AND
" I AM A SURVIVOR. . . I AIN'T FINISHED YET " ! ! !
I will be saying Xtra prayer for you. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Hey Group. . .
Bob. . .I am adding Xtra special prayers for you. . .
I continue to joke about my 'illnesses'. . .I have too. . .especially after
the 2-5 months morbid mortality given for me at diagnosis. Previously, at age 6
my parents were told that I was dying of Pneumonia, and at age 37; my X was told
that I wouldn't make it through the night due to Pneumonia & Liver Disease.
Several friends say. . . I am either a 'Miracle' or 'Walking Corpse' (hehehe).
I've been told that I should write a book by friends and sister & brother
survivors, I have began a journal.
I have recovered from the Oral Surgery having 2 teeth extracted and a portion
of my jaw bone surgically removed at the beginning of the month. My Dentist & 3
OS wouldn't perform the surgery in their offices; due to my CAD & CML. Some of
you have bone & tooth pain, I have OA & ON and numerous other Orthopedic
Diseases. My pain level has increased each year since my diagnosis of our bug, I
also understand my younger brother & sister survivors having ortho pain, whether
from the Gleevec or CML. I dread the right side of my mouth where I have 3
additional root canals. . .the procedures performed years ago 'forever'' (hehe).
I received my 4th RT-PCR Test results yesterday of 0.00312!!! My current
Heart, Liver, Lungs, Orthopedic & 15+ Diseases are 'holding' per X-ray, MRI,
Blood Tests & Medications (hehehe).
" I AM A SURVIVOR . . . I AIN'T FINISHED YET " ! ! !
ALL are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

LOL, yes this seems to be the norm for Gleevec. Welcome to the club
and light a match :)

Since taking Gleevec I have to fumigate the bathroom whenever I use
it. Is this a problem with Gleevec...or should I eat fewer possums,
ha? This is a terrible question...but it is bothering me.

Rebecca--I am jumping the gun cuz my husband is currently (as I type this)
with his onc. I am sure it is not an emergency the way I initially perceived
it. As the wife of a CML-er, I am practicing (and getting better!!), at not
blowing things out of proportion. Iin fact, my husband appreciates me always
reading and sharing the CML forum posts with him, but would probably laugh
over the fact that I posted today, acting like it was an emergency. I really
am getting better at the worrying and over-concern, and we have come to
realize that CML is now a way of life, not a death sentence we once thought
it was. Both Joel and I believe that everything in life happens for a
reason, and the the hardest things you go through are the very things that
make you strong.
I will share more info when I get it, as I am sure what we might go through,
someone else on this forum has probably already gone through...that is why I
love all you guys--knowledge is power, thanks to everyone on this forum for
always jumping in and answering our questions.
Wendy

Hi Wendy. Yes, it's my understanding that Gleevec can pose difficulties for
the liver. Everytime I get my blood counts tested, my doc tests my liver
functioning. I hope they are doing that for your Joel too. FWIW, I don't see
an oncologist, I see a hematologist.
Your husband has been through a lot -- which means you have, too. Best to
both of you.
Rebecca

I believe BMT is two risky & their is no guarantee that it wont come back.I
think sprycel would be worth looking in to.I had the same issues your having &
it worked for me.

Hi all--
I posted last week about my husband's growing (more noticeable) fatigue with
Gleevec--400mg/day. He was diagnosed last July. Has hardly any side affects
but last week or so has been alot more noticeably tired. THEN, 3 days ago,
we ended up in the ER because he felt "tingly all over, tired, and nervous."
I must add that when my husband was diagnosed it was only due to the fact
that he was experiencing "tingling and numbness" on his hands and
face...after blood tests revealed his WBC of 449,000, they determined it was
CML, and then found out he had a blood clot in his brain and that it was
causing him to have a stroke. 3 brain surgeries later, blood clot was
removed, he recovered from that, then we started the Gleevec ride. All in
all, has been pretty OK.
So, my husband called 9-1-1 Sat night cuz of the tingliness...it scared him
because of his past neurological experiences. All in all, after 5 hours at
the ER they chalked it up to a Panic Attack....all his vitals were fine, his
blood counts all normal (WBC was 4.2 even - usually lingers around 3.5 or
so). We even did new brain scans (CT Scans), those, too...all normal.
He had a routine appt today with his onc...he asked about running Iron
tests--I mentioned to him that some of you stated that deficiencies in iron
are sometimes Gleevec related and cause more fatigue. So, she is doing that
but also noted (and the reason for immediate call back), was his "liver
numbers". I dont know what that means as of yet--but he is driving back
right now to get more tests.
So--MY QUESTION---havent many of you had problems with your liver? What came
of it? More meds? How does Gleevec affect the liver? Does any of this sound
familiar to any of you?
Any help would be great--sorry--also--this email is written in what I feel
like is an "emergency situation"...
Thanks,
Wendy Cervera
wife of Joel Cervera, age 33.
Diagnosed July 2007, 400mg/Gleevec daily

Hi Kristine,
Before I would agree to going below 400mg, I would ask for a serum
level test to see how you're metabolizing Gleevec. There are a few
people who metabolize the drug differently and for them, a lower dose
is equivalent to a much higher dose in the rest of us. If this is
the case with you, then there shouldn't be a problem with you going
to a lower dose but you would want to be followed by someone who
really knows what they're doing (like Dr. Druker).
Serum level testing isn't done in many places. I believe there's
only one lab on the east coast that's doing it right now but you
could ask your doctor or maybe someone in the group can find out for
you (I know Richard once mentioned it).
Have you tried using Neupogen to increase your ANC? Some of our
members use Neupogen regularly and it seems that the experts would
much rather see a patient remain on Gleevec with the addition of
Neupogen than to take them off the Gleevec for breaks.
It sounds like your doctor is more of a transplant doctor than a CML
doctor if he's pushing you to consider a BMT when you've had a 3 log
reduction. You may want to consider doing what many of us have done
over the years and that's get a new doctor.
Take care,
Tracey
dx Jan 2002

Hi everyone. I have been reading this board since diagnosis but have
only posted a few times. Heres a little background about myself. I am
a 34 yr old female married with 3 children ages 4 and 2 year old
twins. I was dx in July of 2006. In August I started in a trial the
800mg vs 400mg trial. I started on 800mg but because of neutropenia I
went down to 600mg, to 400mg, and now currently on 300mg. My ANC is
still below 1000 so I am currently taking a break from gleevec. If my
counts do not recover in two weeks I will be taken off the trial. My
oncologist said that he believes that I will do just fine on 200mg a
day. I have reached a 3 log reduction to this point. I am just
curious if any of you are on less than 400mg a day? Do you think that
this is safe or should I consider sprycel? I don't believe that a have
failed Gleevec, or have I? Also my oncologist seems to mention BMT
every time I am in his office. I absolutely do not want this.
Especially because of all the new drugs that are being developed. Any
input would be great, I respect all of your opionions.
Kristine

I'm just super pale. To the point that if I walk by a white wall I almost
disapear (a joke my husband makes but not realy a joke, KWIM). Anyway, I don't
have any different color spots...except the dark circles under my eyes...but I
believe the pigment changes are directly related to the gleevec. Sorry.
:}
Alicia

Dear Bill,
I have a similar brown discoloration on my cheek -- like a small patch
of tanned skin that doesn't fade. It showed up last summer and has
remained. I have no idea if it's Gleevec-related, but I blame
everything on Gleevec, so why not? I've been on 400 mg. for two
years. I should probably go to a dermatologist, but I haven't done so.
Warm regards.
David

Hi,
I have had a weird discoloration (a medium brown colour) long and thin
line of pigmentation/discolouration come up on my nose of all
places..has anybody else had some changes in skin pigmentation?
I am on 400mg of Glivec for about a month now.
Thanks
Bil in the UK

Hi Lisa,
I am a newbie with CML and have had, what I considered, no easy ride
through life overall - but your story of inspiration and real courage
has humbled me and made me appreciate all the good things that I do
have -- instead of harping on the bad. it has really helped me gain
some perspective now.
You encompass the true meaning of the word survivor. God Bless you
for your story and for opening your soul to share this with the rest
of us.
Bil in the UK

big hugs to you Lisa. Bless you.
Alicia
[lmartinez@...] wrote:
Melisa,
Here's a story that will make you feel even better.
I was dx'd in May 2000 almost 7 years ago. Just a year and a half before
that my 27 year old sister in-law died -she had 3 kids. A 2 year old boy
from my brother (who went on drugs and ended up with a 6 yr prison sentence
so I stepped up and became mom again after having a 15yr old and a 17 yr old
of my own. Then 6 months before my dx I also became a parent of one of her 2
girls (age 7 at the time) that she had before her marriage to my brother and
all because her aunt who had her after her mother died couldn't handle
having a biracial child.
My first year of treatment was interferon and ARC injections, which I chose
over the BMT because I was so scared that if I didn't survive the BMT these
children would have lost mother # 2 and mine would also be without.
These injections made me so, so sick. But still had to work full time
because I was blessed with an alcoholic husband who didn't work and pushed
me out of the bed while I was sick to go to work.
I say blessed with a bit of humor because it's painful to remember but I
sometimes wonder if I hadn't gone to work to get the moral support I had
there, would I have done so well?
In 2001 I started gleevec and I was doing great compared to the other stuff,
but my teenage son was battling some serious depression and he ended up
accidentally overdosing 4 times in one year over daddy being like he was and
the thought that he may loose his mother.
He was hospitalized each time, received therapy for his depression and was
doing well for about 8 months and had another episode. This time he ended up
in the intensive care unit after being resuscitated. But he was also 18
years old and although I begged the hospital to keep him for an evaluation
they sent him to the physc unit and released him the next day.
On the morning of June 19th 2002, only 2 weeks after the last incident, I
found my son not breathing when I went to his room to check on him before
leaving for work. I lost my baby that day. And still his father only found
another excuse to drink.
I cannot explain what the pain of loosing a child feels like, but its
nothing like loosing a man who doesn't love you enough to stick by you
through sickness and in health. Through good times and bad.
Finally last January 2006 my husband was told he had developed a severe
heart disease at age 42 and his liver was so bad that he would die soon if
he didn't care for himself better. I begged him to think of his only son he
had left and our 3 beautiful granddaughters. Forget about me, I wanted my
son and granddaughters to remember a few good times.
He didn't stop and things were worse with his drinking. I finally decided
after 27 years that it was gonna be either him or me and possibly both if I
didn't do something. I filed for divorce and made him leave the home
November of 06.
In January of this yr he went into the hospital with back trouble and 2 days
later we were having DNR's done as the Dr had suggested it because his lungs
were filled with fluid. He never came home because regardless of how sick he
was I couldn't do it and I could have never done it if I wanted to. Day by
day his brain was poisoned by high levels of ammonia from the liver and he
ended up in a facility needing 24 hrs care until he died almost 2 months
ago.
I became so bitter after loosing my son that I couldn't deal with his
selfishness. I also realized that I was going to live, I wanted to live and
the kids love me way more than he did.
So I tell you this to say it could be worse. Be glad that someone who was so
selfish wasn't selfish enough to put you through all the above. And being an
alcoholic was only the tip of the iceberg.
I'd rather have cancer any day than live that life over again.
Once again' I have to add that at 42 I have decided that I am only half way
through my life and I have a lot behind me. I prefer to say I am advanced in
my classes of life and I pray that the second half will be much better due
to the lessons I've learned and all that my first half of life has added to
my character.
If I could say anything to you it would be to trust that God knows exactly
where you are and to know that you would have not made it to today if he
wasn't there to pick you up and keep you going.
Life is not over because we have CML. It's only just beginning. I don't wish
any tragedies on any one. But mine sure has made me stop to smell the roses.
(Sometimes I move too fast, but I try to slow down when I can)
As for your weight, I agree we all want to have perfect bodies, but sick or
not it does require work for most of us and it really shouldn't be all about
our vanity but rather our health first.
Somehow, someway, try to start exercising. Even if you start with a brief
walk. What it does for you mentally and emotionally is indescribable! Then
eventually you can focus on the weight part.
You know if you think good, you'll feel good and if you feel good, you'll
look good!
Get up girl and have a great day! You're gonna be just fine:-)
Lisa Martinez

Wow! I thought I was the only one who when through some bad times after I was
dx.Ive been through something similar be strong God bless & hang in there it
only gets better as we get stronger

Melisa,
Here's a story that will make you feel even better.
I was dx'd in May 2000 almost 7 years ago. Just a year and a half before
that my 27 year old sister in-law died -she had 3 kids. A 2 year old boy
from my brother (who went on drugs and ended up with a 6 yr prison sentence
so I stepped up and became mom again after having a 15yr old and a 17 yr old
of my own. Then 6 months before my dx I also became a parent of one of her 2
girls (age 7 at the time) that she had before her marriage to my brother and
all because her aunt who had her after her mother died couldn't handle
having a biracial child.
My first year of treatment was interferon and ARC injections, which I chose
over the BMT because I was so scared that if I didn't survive the BMT these
children would have lost mother # 2 and mine would also be without.
These injections made me so, so sick. But still had to work full time
because I was blessed with an alcoholic husband who didn't work and pushed
me out of the bed while I was sick to go to work.
I say blessed with a bit of humor because it's painful to remember but I
sometimes wonder if I hadn't gone to work to get the moral support I had
there, would I have done so well?
In 2001 I started gleevec and I was doing great compared to the other stuff,
but my teenage son was battling some serious depression and he ended up
accidentally overdosing 4 times in one year over daddy being like he was and
the thought that he may loose his mother.
He was hospitalized each time, received therapy for his depression and was
doing well for about 8 months and had another episode. This time he ended up
in the intensive care unit after being resuscitated. But he was also 18
years old and although I begged the hospital to keep him for an evaluation
they sent him to the physc unit and released him the next day.
On the morning of June 19th 2002, only 2 weeks after the last incident, I
found my son not breathing when I went to his room to check on him before
leaving for work. I lost my baby that day. And still his father only found
another excuse to drink.
I cannot explain what the pain of loosing a child feels like, but its
nothing like loosing a man who doesn't love you enough to stick by you
through sickness and in health. Through good times and bad.
Finally last January 2006 my husband was told he had developed a severe
heart disease at age 42 and his liver was so bad that he would die soon if
he didn't care for himself better. I begged him to think of his only son he
had left and our 3 beautiful granddaughters. Forget about me, I wanted my
son and granddaughters to remember a few good times.
He didn't stop and things were worse with his drinking. I finally decided
after 27 years that it was gonna be either him or me and possibly both if I
didn't do something. I filed for divorce and made him leave the home
November of 06.
In January of this yr he went into the hospital with back trouble and 2 days
later we were having DNR's done as the Dr had suggested it because his lungs
were filled with fluid. He never came home because regardless of how sick he
was I couldn't do it and I could have never done it if I wanted to. Day by
day his brain was poisoned by high levels of ammonia from the liver and he
ended up in a facility needing 24 hrs care until he died almost 2 months
ago.
I became so bitter after loosing my son that I couldn't deal with his
selfishness. I also realized that I was going to live, I wanted to live and
the kids love me way more than he did.
So I tell you this to say it could be worse. Be glad that someone who was so
selfish wasn't selfish enough to put you through all the above. And being an
alcoholic was only the tip of the iceberg.
I'd rather have cancer any day than live that life over again.
Once again' I have to add that at 42 I have decided that I am only half way
through my life and I have a lot behind me. I prefer to say I am advanced in
my classes of life and I pray that the second half will be much better due
to the lessons I've learned and all that my first half of life has added to
my character.
If I could say anything to you it would be to trust that God knows exactly
where you are and to know that you would have not made it to today if he
wasn't there to pick you up and keep you going.
Life is not over because we have CML. It's only just beginning. I don't wish
any tragedies on any one. But mine sure has made me stop to smell the roses.
(Sometimes I move too fast, but I try to slow down when I can)
As for your weight, I agree we all want to have perfect bodies, but sick or
not it does require work for most of us and it really shouldn't be all about
our vanity but rather our health first.
Somehow, someway, try to start exercising. Even if you start with a brief
walk. What it does for you mentally and emotionally is indescribable! Then
eventually you can focus on the weight part.
You know if you think good, you'll feel good and if you feel good, you'll
look good!
Get up girl and have a great day! You're gonna be just fine:-)
Lisa Martinez

We are also walking for a cure for all with blood related cancers.
http://www.active.com/donate/tntnyc/latinasontherun
Any amount donated is neither too small or grand!!

10 yrs! That's wonderful Bob.
May your journey with the other cancer get easier.
God bless you and thank you for sharing!
Lisa Martinez

Hi Bob,
Another congrats on the 10 year Milestone..Hope you are staying as
well as possible with your other battle.
Does your onc or hemo think that there may be a correlation between
years of taking Gleevic and your renal cell cancer? Or was this
something completely seperate they feel?
Kind Regards
Bil

Hi Bob,
Congratulations for still being here in good spirits 10 years after you got the
bad news. Sorry about the four years of Interferon. And I'm also so sworry to
hear about this new challenge. Do you have a group like this one to go to with
that cancer? What treatment are you getting and are you able to live a good
life with it? I always write when I see your name just because you're the only
other "Hoosier" on the List.
Best of the best to you always,
Susan L

Dear Group,
Today is the 10th anniversary of my diagnosis of CML--and I'm still surprised
to say that I'm still around to celebrate it. Still around after 4 years of
Interferon and 6 years of Gleevec.
I'm glad that I met the people in the group--but hate that our primary shared
interest is CML. Let's continue together!!!!!!!!!!
Bob Stewart, Granger, Indiana
Zavie # 54 (wow!!!!)
PS: This is also my second anniversary of my battle with renal cell cancer.
I just wish I could be as successful with that battle as I have been with
CML--but I'm afraid it's just not to be.

Thank you for that.!I am newly diagnosed.Joy!
carolyn_kuptz <carolyn_kuptz@...
I wrote this poem the week I was diagnosed with CML -thought many of
you had the same thoughts.
You held my hand precious Lord when you heard me cry and sent in a
nurse to hold my hand and let me cry. You held my hand precious Lord
when we had so much information thrown at us we could not take it all
in and the Dr. say's "don't worry." You held my hand during a bone
marrow test with only local anest. and the nurse let me squeeze her
hand so tight I was afraid it would crack and she said "squeeze all you
want I am not leaving. You held my hand through Pastor Mark's visits,
phone call, prayers and hugs. You held my hand precious Lord when my
veins were screaming no more and an anesthologist that was sleeping had
come and start yet another IV. You held my hand though my husbands
love and support. You held my hand Lord when I was scared to start the
Gleevec and you sent in a friend with balloons and hugs. The ways you
have shown me how much you care takes my breath away. I know now that
you will always hold my hand precious Lord be it here on earth or in my
heavenly home.
I hope this may be an inspiriation to some of you.

Dear Group,
I wrote this poem the week I was diagnosed with CML -thought many of
you had the same thoughts.
You held my hand precious Lord when you heard me cry and sent in a
nurse to hold my hand and let me cry. You held my hand precious Lord
when we had so much information thrown at us we could not take it all
in and the Dr. say's "don't worry." You held my hand during a bone
marrow test with only local anest. and the nurse let me squeeze her
hand so tight I was afraid it would crack and she said "squeeze all you
want I am not leaving. You held my hand through Pastor Mark's visits,
phone call, prayers and hugs. You held my hand precious Lord when my
veins were screaming no more and an anesthologist that was sleeping had
come and start yet another IV. You held my hand though my husbands
love and support. You held my hand Lord when I was scared to start the
Gleevec and you sent in a friend with balloons and hugs. The ways you
have shown me how much you care takes my breath away. I know now that
you will always hold my hand precious Lord be it here on earth or in my
heavenly home.
I hope this may be an inspiriation to some of you.

Andrea-
Thank you to your sister for walking for all of us. We (me, family,
friends, co-workers) walk every year sometimes on both walks in our city. We
walk
for the Light the Night campaign. Usually August and Sept time. My kids
love being a part of it. It is a lot of fun as well helps get the word out and
raise money for a great cause. We all need that cure.
I encourage everyone to pass the word around this year and get involved.
Its easy to raise money, you get a lot of info and ideas off the Leukemia and
Lymphoma web site and you can even win prizes depending on the amount of money
you raise. Its fun to form and team and have everyone come out and support
you. It is very encouraging and spirit lifting.
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11/8/6)
************************************** See what's free at http://www.aol.com.

My name is Andrea and I am 25 years old and DX with CML in Nov 2003.
I dont post very often but I read all your posts. My sister is walking
for the the Leukemia & Lymphoma Society. If you can donate please
help. We all need a cure, and hopefully it is found.
Andrea
http://www.active.com/donate/tntors/tntorsLSilvei

Hi from Canada. I was diagnosed with CML 14 months ago. I have been
on Gleevec for about 12 months, but it is not achieving the results the
hematologist is looking for so I am going to be in the clinical trials
for a new drug...Dasatinib/Sprycel starting next Wednesday. It was
just approved in Canada 2 weeks ago. Is there anyone in the group who
takes this drug for their CML?

I was on it for about 16 mths it worked for awhile then I became immune again.
the nice thing about it was no side effects & it worked great for awhile now Im
on a clinical trial for amn 107 seems to be working fine.

Hello,
I have take Gleevec at night before bed either with something to eat or
without. Taking it before bed time really gets my stomach upset and I have
a lot of heartburn and indigestion. This is one of the Gleevec side effects,
but it does not occur when I take it at dinner time (as long as I am not
eating something really acidic like pizza or spaghetti)
I had to try many times of the day at first to see what right for me. Dinner
is best because I have a few hours to do whatever it is that needs to be
done in the evening and not long after that it is bed time. My theory is
that I sleep through the tiredness and therefore don't have the side effects
as badly as I did at first. I do however require longer periods of sleep
than I ever did pre-cml.
No less than 8 hours and 10 is just wonderful but rarely happens.
Most of us who started gleevec when it wad FDA approved found that dinner
time works best.
I would never consider lunch time or breakfast time. I couldn't make it
through the day if I did.
I work full time and have since diagnosis with a few days off here and there
my first year due to the side effects of interferon & ARC injections. That
was really rough compared to Gleevec. I am glad that most newbie's on the
list may never have to experience that.
Most of the harder side effects from Gleevec have subsided over the years. I
have been on 400 mgs for almost 6 years now.
The only few I have slight problems with are the muscle spasms which would
go away if I were to get back to exercising:-)
Even those are not like they use to be.I literally would get them in my neck
if I yawned or any other place in my body if I made a movement that had some
sort of curve or stretch to it.
The puffy eyes are still an issue but not as bad as it used to be. However,
because of the previous problems with too much water in my eye lids for so
many years, my skin around my eyes has totally changed my appearance and I
look oriental after always having very big eyes. So many people ask me if I
am oriental and I feel very uncomfortable with that.
I have to remind my self that its a small price to pay right.
Other than that the only other thing is the heartburn and indigestion if I
choose to eat acidic foods at dinner when I take my gleevec.
Sometimes I make the choice to do it and it never fails to give me the same
results. But I wait a few hours and take some Zantac.
I would suggest trying taking it at dinner time; I really think it would
help.
Lisa Martinez

Hi Jennifer and Wendy,
I had wicked gastro problems with Gleevec! 8-(
Both massive diarrhea and nausea.
After a lot of experimenting we found Sandostatin for the diarrhea,
I inject this twice a day, sometimes 3 times if needed.
It has given me back some of my life anyway.
I was to the point where I told my Dr. that if nothing could be found
to help I was going to quit the Gleevec, I believe that Quality of
life not Quantity of life is what I want.
For the nausea I take 2 gravol about 1/2 to 1 hour before the Gleevec
which I take at bedtime.
I also find that soda crackers and gingerale both help.
The Gleevec has stopped being effective for me and I am going on a
drug trial for AMN107 which will hopefully work.
Best wishes and I hope some of this info helps.
Regards,
Terry
Dx Oct/02

Wendy-
Its funny to get this letter as I am getting back out of bed becasue I am sick
to my stomach. I suffer ALOT of gastritis with my Gleevec (800mg). I have been
in the hospital for it numerous times as well as, I do home IV's once every
couple weeks from the dehydration I get from massive diarrhea and nausea.
I have tried to take it during the day but the overwhelming fatigue and bone
pain caused me to switch to night in which I can sleep through the side effects.
However, there are nights, like tonight, that I am already so nauseated before I
even take the Gleevec, and have no appitate that I just end up taking a light
snack and pay for it. Not always but occasionally. This is awful. I am SO
nauseated, the bile is in my throat and worse if I try ti clear it and I have to
sit up in bed with 4 pillows behind me. Its scary as I have always been someone
afraid of choking so to have all this in my throat and stomach is eerie to me.
I think that what happens to me is not what alot of people go through (I hope),
so your hubby should be fine. I would recommend taking it right after supper
with his meal. I tend to put it off and end up taking it too late most nights
and then I pay for it. Not a smart thing to do!!!
Your hubby should be able to sleep through most of the tiredness part. I wish
him well. He may have to play around with it as far as times go. Best of luck.
Jennifer 35
CML 5\13\05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
Jennifer S. Smith RN

Hi all---
My husband has been on Gleevec (400mg) since last July when diagnosed,
suffered severe neutropenia for 1 month and was hospitalized for 30 days.
Once we got through that, and his body got used to Gleevec, things started
being on the up and up. He feels really good most days, but after taking
Gleevec with his lunch, gets really tired. This usually occurs around 2PM
every day and then he is really tired the rest of the day. (He is currently
staying home with our 1-yr. old, so that makes him tired, too!). Yes, small
price to pay for otherwise feeling well and being alive!
But--tonight he is trying something different (yikes!). Tonight he is taking
Gleevec about an hour before bed, with cereal or oatmeal, or something
rather "carby". He is nervous, but started thinking that maybe he could try
taking it at night and sleeping through the tiredness!
I have seen past posts about this subject, and wanted to ask again...how
many of you take Gleevec at night? Have some of you tried and it didnt work
out? About 1-2 times per month my husband doesnt eat enough food with it and
has gotten really nauseated, lasts about 30 minutes. I think that is what he
is scared about.
Any comments would be greatly appreciated...
Wendy

I was surprised when we went to once a month on the CBC's. He said I could
come more often,but he felt very comfortable with once a month as I had
stabilized so fast and was doing so well. Don't get me wrong, I fell pretty
good.
Aside from some headaches and some joint pain, I really am feeling great.
Lots of strength, though I do get tired and enjoy a fast 15 min nap to
rejuvenate.
I am near Pensacola, so about 7 hours from Tampa.
Chris
************************************** See what's free at http://www.aol.com.

Hi Chris,
I live In Fl too. Tampa to be exact. Where do you live?
I wanted to comment on your question regarding your WBC.
Someone please correct me if I am wrong. When you first start getting
treatment the goal is obviously to get the WBC's down and sometimes it
plunges to levels that are too low which could cause you immunity problems.
That's why your WBC's should be monitored more closely at first so you and
your doctor will know how your body is responding and provide any other
treatments if necessary. My doctor had my CBC's ordered every other day for
the first month of treatment (although my first treatment was hydrea &
interferon -pre-FDA approval of Gleevec) A few times I had to stop a few
days to give my whites a chance to get back to normal but again that's is
what the treatment is suppose to do.
Once my counts stabilized we went to every week and then every other week.
Now of course it's every month.
Anyway once the counts stabilize your counts should be at a normal range
and everyone could have a different range.
Example: My RBC has never went back up pass 3.4 that's just a bit low but I
had always been slightly anemic from a child. So we could say that that
would be normal for me.
This could be the case for you and 12.9 is not much above the normal range
for a man. (Men and women differ a bit and men usually range a bit higher
than women)
However, what I would suggest is that you have your doctor monitor your
CBC's a bit closer. Maybe once a week or twice a week just to see if indeed
it is going up again or is it just that that's normal for you? Once a month
being newly diagnosed is really not a good idea. Your counts could have
dropped really low in that month as they usually do and you may have had
some infection as a result which also could have caused your WBC to be a bit
higher. That's why they should have been watching you closer for the first
few months (anything can happen) Do you have an Oncologist that has other
CML patients?
And that's my 2 cents:-)
By the way I have been on 400 mgs of Gleevec since FDA approval and I
achieved PCR negative results in 60 days and I'm still PCR negative after 6
years on Gleevec.
My 7 year anniversary is May 24th 2007!
Lisa Martinez

Hi Chris,
What have the doctors said your next option is as you seem to have
immunity to most current medications?
Do you have a particular mutation(s) that they have said are making
you immune to these?
I understand there are a couple of trials coming out or are already
started one of which is an injection method.
Let me know how you get on and God Bless.
Bill in the UK

Hi Chris,
My husband was dx in July 2006 and is now on 800 mg of Gleevec. His
WBC has been normal since he came off of Hydrea in August. We did
have one increase in October which scared us all. It turned out that
it was a reaction to a steroid injection he had gotten for carpal
tunnel in his wrist. We waited another month and the WBC was back to
normal!! CML is definitely one big roller coaster ride. Remember
that lots of things can affect your WBC. This group is a great place
to reach out and find support. Good luck to you and your family.
Debbie

Yes I have been as high as One hundred 40 thousand & as low as 1thousand.You
might consider switching to disatinib or looking in to the clinical trials for
AMN 107 which is what Iam doing now.But don't worry so much about the WBC so
much as platelets.

Hello everyone:
Chris here in Florida. I am still fairly new here. Dx, March 1, 2007. I
have been doing really well. Monday, I had a brain MRI to rule out anything
additional as the Gleevec has given me some pretty severe headaches, which now
are getting better. I am happy to say it came back normal.
Today I had a CBC and MD visit. First CBC in a month. MY WBC had gone up
from about 6.5 to 12.9. My other counts were good. I was really
disappointed, no, pretty upset and had a hard time getting across to my Dr and
wife. The
Dr was not concerned, in fact said he was more concerned with my pulse only
being 45 this morning than about the WBC.
I asked if the Gleevec is starting to not work? He shook his head, stating
he really did not think so. Anyone else had the WBC roller coaster?
Thanks!!!!!
Chris
************************************** See what's free at http://www.aol.com.

Congratulations, Susan. I am so pleased for you. What a difference
a week makes. Your determination has paid off -- and I applaud you.
God bless.
peace,
Kathy

Way to go Susan.
It deserves a little

Hi Everyone,
I got a part-time job today! It's something I never thought I'd be doing, but
I'll be a sales person in the women's department of a large L.L. Bean Store
here. The staff is really nice and of course it's a high-quality sports store.
I'll start after they do a background check which won't be a problem so that
should be about a week from now. Then, I'm meeting with a disability LCSW and
going through my resume again and also types of jobs or places I should apply
to. I also am starting my volunteer work at the Hospitality and Information
Service working on the public relations committee as the media relations person;
working with the art committee choosing museums to visit and making my first
contact with my new diplomat and his family at the Embassy of Botswana. I'll
also be servicing the Embassy of India soon. So things can change pretty fast
but sometimes it takes inspiration and just being able to talk it out -- this
time with you guys.
Many, many thanks.
Love,
Susan L

Hey Group. . .(FYI/my 2 cents only)
Years ago, gold brain serving me right; I remember the CML Xpert in the UK
stated that the FISH Test is obsolete for us once we reach '0/Negative' on it.
This test only examines 200 cells and had given a false positive of 8% to me and
several Colon Survivors in late 2005 at my H/O office. My Drs partner got on the
phone to the lab, because his patients had been negative for years. I only have
RT-PCR Test done now because 100,000 to 1,000,000 Million cells are xamined out
of the 3-Trillion in our body's.
HAPPY MOTHERS DAY to ALL ! ! !
"K"
"I AIN'T FINISHED YET"!!!

as far as we,ve experienced, disability benefits are not garnished. if your
paying back $280 on your own, ask to have it reduced. if this situation happens
again, you can go to the court house in your town and get a form to submit to
the judge that this payment causes undue hardship. your disability counselor
should know this. have you applied for any other kind of social service
assistance? karen
loewen1 <loewen1@...
I'd like suggestions of what others of you have done in my situation. I get SSDI
which amounts to $895 a month. Then, $280 is taken off the top while I ccontinue
to pay off a debt consolidation from sometime ago. That will be finished in 6-7
months. But even with that extra $280 there's no way I can live on this amoount
of income. I moved to the Washington area for various reasons three years ago.
When I first arrived I was very weak and couldn't do much of anything until
about four months in. Then I just went to the Yellow pages and found a temp
agency close by and immediately got a temp job at an AIDS clinic that lasted 9
months. They had some fundraising problems and so that job ended. However until
about four months ago I was able to work enough (but not too much) in order to
have enough to live frugally and not endanger my disability. A cousin pays my
rent. But now I'm in my second month of not being able to find a part-time temp
job while I continue my quest for a
full-time permanent position that would actually support me and pay my rent. I
have a good resume but have not been in the job market since I left California
in 2001. The college gradsw have flooded into town and besides making it a
terrible place to live they're taking all the jobs.
I met with my disability counselor yesterday and will meet with two others to
see if we can come up with something or retrain for something entirely different
just to survive.
Is anyone else in this position? What are you doing? I applied for retirement
housing yesterday but the waiting list is 18 months. It's a very nice place
about 10 miles west of here.I won't be eligible for retirement until Januiary
(retirement from what?!) and because of the way I lived my life including places
that didn't collect social security, I will only be collecting pennies. This
problem is so severe that I'm frightened beyond measure.
Thanks for any constructive thoughts no matter how silly they may sound to you.
Susan L

Dear Judy,
It has been quite ahile since I saw your name on the List. I do hope lots of
people write in and that it somehow takes root again this spring. So glad
you're doing well. At least it sounds like it. I love funny cynics--if you
start losing weight you'll know it's leukemia and not your diet! ;
make an effort to stay in touch. I do agree with you that newbies write in for
help and questions and unless one of us checks in that day there's no longer a
core of people making sure the light doesn't go out. It's very important beause
we were in their situation not so long ago.
Hugs from Virginia!
Susan L

For those on disability and trying make ends meet, I suggest you check and
see if there's a place that offers Angel Food packages. For $25, you get
enough food to feed a family of 4 for a week. I've been able to make it
last much longer than a week. Here is the website, to check your location.
They also have good deals on steaks, etc.
http://angelfoodministries.com/
Barbara Hundley
My Personal Assistant
Fayetteville, GA
Tel: 678-817-6805
Fax: 678-884-8186
<http://www.my-personal-assist.com

Hi Everyone,
I'd like suggestions of what others of you have done in my situation. I get
SSDI which amounts to $895 a month. Then, $280 is taken off the top while I
ccontinue to pay off a debt consolidation from sometime ago. That will be
finished in 6-7 months. But even with that extra $280 there's no way I can live
on this amoount of income. I moved to the Washington area for various reasons
three years ago. When I first arrived I was very weak and couldn't do much of
anything until about four months in. Then I just went to the Yellow pages and
found a temp agency close by and immediately got a temp job at an AIDS clinic
that lasted 9 months. They had some fundraising problems and so that job ended.
However until about four months ago I was able to work enough (but not too much)
in order to have enough to live frugally and not endanger my disability. A
cousin pays my rent. But now I'm in my second month of not being able to find a
part-time temp job while I continue my quest for a full-time permanent position
that would actually support me and pay my rent. I have a good resume but have
not been in the job market since I left California in 2001. The college gradsw
have flooded into town and besides making it a terrible place to live they're
taking all the jobs.
I met with my disability counselor yesterday and will meet with two others to
see if we can come up with something or retrain for something entirely different
just to survive.
Is anyone else in this position? What are you doing? I applied for retirement
housing yesterday but the waiting list is 18 months. It's a very nice place
about 10 miles west of here.I won't be eligible for retirement until Januiary
(retirement from what?!) and because of the way I lived my life including places
that didn't collect social security, I will only be collecting pennies. This
problem is so severe that I'm frightened beyond measure.
Thanks for any constructive thoughts no matter how silly they may sound to you.
Susan L

Oh geez, Barb. I'm astounded by your toughness and resiliency. Hats off!

very nice thing to read on a very nice day in NJ.
Thanks!

Hi all. I saw Richard R's post about the 'good old day's prior to
Gleevec. I recall a hysterical poem that someone wrote about
Interferon. Does anyone recall it - or have a copy they can
post? I would love to frame that poem for posterity! : - )
I was on Interferon for almost 18 months. While it was not
pleasant, I have only positive things to say about interferon as I
was able to get to CCR within one year. I vividly remember the
first day I got my first shot of interferon and Ara-C. I was told
to go home and in a few hours I would probably feel the side
effects. I had little idea of what I would exactly feel . . . so we
stopped off at a local restaurant for Quiche and Salad. That was
probably my last normal meal for MONTHS unbeknownst to me. When
I got home from the restaurant, I put on my sweats and sat down on
the sofa thinking 'Gee, this isn't too bad' 'Nothing has happened
yet'. Well an hour later, I remember my teeth starting to
chatter . . . my temp was high and I was in Shake and Bake mode
(Shaking/fever/chills). It was not easy BUT the oncologist told me
if I could tough it out, the side effects would get somewhat
better. He was right. I never felt perfect but I was able to
function - returned to work and life in general. After 18 months,
I developed retinopathy in one eye and had no choice but to switch
to Gleevec. I am blessed it was available when I needed it.
For all those old timers (5 / 6 years ago or longer) - you all
continue to amaze me with your strength. Your support throughout
the times I was on IFN was wonderful. Thank you dear friends!
Hugs, Barb
PS - If anyone has that Interferon poem, can you post it?

Im new to this group I was diognosed in 2002 since then ive had a
beutiful baby girl. I live every day hoping for a cure I try and get
involved in every clinical trial that comes along.If not for me then
for those who come after me especiliy the children I encurage everyone
out there to get involved in one way or another.Please be a part of the
cure& live your life to the fullest every day tell the ones close to
you what they mean to you daliy. God bless you all, Chris

Hi Efrem,
A lot of doctors only do the PCR test once a person has reached CCR.
FISH tests are not that reliable and they are not very sensitive
either. A FISH test will only look at 200-500 cells whereas a PCR
test can look at up to a million cells (depending on the lab).
That's why you can be zero on a FISH test but not a PCR.
The analogy I like to use is this: if you took a swimming pool and
filled it up with ping pong balls. You put a trillion white ping
pong balls in it (which represent the good, healthy cells) and 10,000
blue ping pong balls (which represent the bad, leukemic cells) in
it. Then if you scooped out 500 balls, you could easily find all 500
to be white (good cells) but if you scooped out a million balls,
there's a much greater chance that you'll find a few blue ones in
there (bad cells).
The more cells they look at, the more chances they'll find one that
has the bcr/abl protein. In fact, just about everyone still has
bcr/abl positive cells, the question is if the lab is using a
sensitive enough PCR to detect them. Just because some people show
negative on a PCR, doesn't mean they don't have any leukemic cells in
them, it just means that the test wasn't sensitive enough to pick
them up.
Your goal in treatment is to reach a 3 log reduction from baseline
which is a thousand fold decrease in bcr/abl cells. Each lab has
what they consider to be their baseline so depending on the lab you
use, they'll either mark on your report how you compare with that
baseline or they'll give you the numbers and you'll have to figure it
out yourself.
I hope that helps,
Tracey

I remember the start of this group too. It's been
4-1/2 years since I was diagnosed and luckily for me,
Gleevec just got approved for use in Alberta. So far
so good with Gleevec but Susan, I will remember what
you said "when it goes, it goes fast". Sometimes it
scares me that we're only seen every three months but
hopefully, should my CML start in another direction, I
will be able to detect it and get in to my onc sooner.
If I start to lose weight in a heck of a hurry, I'll
know this time it might be CML, not that my dieting is
working! Talk about being naieve.
I used to post regularly but as this disease has
almost become "old hat" I just read and don't post,
forgetting that anyone new is looking for
encouragement and information. It would be a shame
for this list to gradually dwindle down to nothing.
On the lighter side of things, it is finally spring in
Calgary and the trees are starting to birst their buds
and produce the lovely green leaves. The ants are
busy creating havoc and the Robin Red Breasts are busy
building nests on places they shouldn't.
All for now everyone - I honestly think about a lot of
you, whom I got to know, a great deal.
Take care.
Hugs a'plenty, Judy
Hugs,
Judy P. in Calgary
Be smarter than spam. See how smart SpamGuard is at giving junk email the

I know that I have asked this question already but I lost my responses.
I have been on Gleevec for almost four months and reached cytologic remission
last month. My doctor drew some additional blood this past week to now conduct
a FISH test and do a PCR for the BCR-ABL protein..
Can someone please remind me the difference between the two tests and why we
do both.
Also, my doctor told me that you can be FISH negative but still have the
BCR-ABL protein in your body. Can someone please elaborate on that and explain
how that is possible, and whatthat means as far as remission.
Thank You
Efrem

Hi Carolyn
I am on Sprycel 20mg myself and I called my Dr. yesterday because I am
experiencing the exact same things. My joints have been really been bothering
me and I have been sleeping a lot since I started the Sprycel. I spoke with his
assistant and waiting on a reply from my dr. I have tried Gleevec and Sprycel,
and having problems tolerating both.
carolyn_kuptz <carolyn_kuptz@...
Dear Group
I have been on Sprycel with wonderful results since August. I am
experiencing joint pain and fatique. Am wondering if any of you
experience this. This could also be be a left over from a bout with
the shingles. That was just a little insult to injury - no fun. My
onocologist told be to be sure to drink enough. He suggested Gatorade.
Any feed back would be appreciated
carolyn

Dear G