Re: My blood counts aren't stabalizing

November 9, 2006

My husband has had the same thing happen--he was only on Gleevec for 7

weeks, doing awesome till one day his white blood cells tanked to almost

nothing---and he had NO neutrophils (literally, undetectable amounts) and

was placed in the hospital. I dont want to alarm you, but based on all his

docs' recommendations, he was placed in isolation in the hospital, taken off

Gleevec, until his counts came up--it took a month. While there, he was on

tons of antibiotics for fear that since he had no neutrophils, he was

suseptible to anything contagious. As soon as his counts went back up, he

was put back on Gleevec--only starting at 100mg/day and then working his way

up. He currently is only at 300mg/day and when he went yesterday for blood

work, his WBC has dropped again to only 3500. They have left him on 300mg,

and will wait to see where he stands next week. They are hoping his counts

rise again slightly, so that they can get him to 400mg/day and that is where

he'll stay.

I wrote to Dr. Druker myself (who invented Gleevec), about my husband's

situation. He wrote back and his advice was to try and stay on 400mg/Gleevec

per day and to NOT lower it. But, in order for the WBC to stay in the

" normal " range, that would require shots of neupogen (WBC increaser). As of

now, my husband is not on the neupogen yet, I guess his docs will wait to

see what his bloodwork reveals next week. Although, while in the hospital,

he was receiving shots of neupogen to try and " kickstart " his white blood

cells.

I really feel for you--after having seemingly great success, for this to

happen. Let's keep our hopes up and pray it all works out.

Regards,

Cervera

>From: " cjwilliams16 " <coralee.williams@...>

>Reply-

>

>Subject: [ ] My blood counts aren't stabalizing

>Date: Thu, 09 Nov 2006 19:35:43 -0000

>

>Hi all,

>

>I just had another bone marrow biopsy today and the accompanying blood work

>done. They

>told me that my neutrophils and whites are continuing to drop and they

>don't know why. My

>doctor has had me off of Gleevec for 7 weeks now because of the counts and

>I don't feel

>comfortable about it. Does anyone out there have any experience with this

>kind of situation

>or some advice for me? Here I thought I had it made with Gleevec and now I

>am starting to

>panic a bit.

>

>Thanks,

>

>Cam

>

_________________________________________________________________

Find a local pizza place, music store, museum and more…then map the best

route! http://local.live.com?FORM=MGA001

November 10, 2006

As someone who has been on Gleevec for over 6 years (and doing great), I

just think you should be aware that many of us on Gleevec remain with a

wbc below the normal range. That's not all that unusual and as long as

the anc remains above 500 it shouldn't be a problem. My wbc has been

between 1.5 and 4.5 the whole 6+ years I've been on Gleevec (it was

lowest the first 6 months--around 1.5) and I've never had a problem as

the result of that--in fact the only time it has been in the normal

range is when I've had a fever (and that doesn't happen often). A

" normal " wbc for me is 2.8-3.8. I've been on 400 mg the entire time. I

had one very short break during my first month on Gleevec (3 days off)

and that is all. I see a cml expert at MD (Dr. Kantarjian) and

I know he would give neupogen for a low wbc and do everything to keep

the patient on at least 400 mg. of Gleevec. I know of another woman who

also had an anc of zero (like your husband, ) but she was put on

neupogen and continued with Gleevec (she wasn't hospitalized). She is

doing great as well many years later--she no longer needs neupogen but

her wbc is often below the normal range. The idea is to get rid of as

many leukemia cells as possible without becoming resistant to the

drug--the goal is not to get all the blood counts in normal ranges--that

will never happen for many of us on Gleevec. My wbc was usually 2.5

(2500) for the first 3-4 years on Gleevec. It's only been the last

couple years that it has come up to 3.5 or so. I'm certainly glad I

didn't spend all these years taking Gleevec breaks in an attempt to get

my wbc higher as I doubt if I would have as strong a remission if I had

done that. , the cml experts at MDACC would agree with Dr.

Druker--it's important to be on Gleevec at an optimum dose. When people

have very low platelets there isn't a great deal that can be done but a

low anc can be handled. And if your doctors are trying to get the wbc

into the normal range it sounds like they just don't have enough

experience with cml and Gleevec. I would either find another doctor or

ask the one I have to consult with an expert at MDACC or OHSU (they can

just call and get advice--that is done all the time). I hope this

helps and good luck with your treatment.

Regards,

Dorothy

dx 5/2000

400 mg. Gleevec since 9/2000

pcru

wbc typically 3.5

Cervera wrote:

> My husband has had the same thing happen--he was only on Gleevec for 7

> weeks, doing awesome till one day his white blood cells tanked to almost

> nothing---and he had NO neutrophils (literally, undetectable amounts) and

> was placed in the hospital. I dont want to alarm you, but based on all his

> docs' recommendations, he was placed in isolation in the hospital, taken off

> Gleevec, until his counts came up--it took a month. While there, he was on

> tons of antibiotics for fear that since he had no neutrophils, he was

> suseptible to anything contagious. As soon as his counts went back up, he

> was put back on Gleevec--only starting at 100mg/day and then working his way

> up. He currently is only at 300mg/day and when he went yesterday for blood

> work, his WBC has dropped again to only 3500. They have left him on 300mg,

> and will wait to see where he stands next week. They are hoping his counts

> rise again slightly, so that they can get him to 400mg/day and that is where

> he'll stay.

>

> I wrote to Dr. Druker myself (who invented Gleevec), about my husband's

> situation. He wrote back and his advice was to try and stay on 400mg/Gleevec

> per day and to NOT lower it. But, in order for the WBC to stay in the

> " normal " range, that would require shots of neupogen (WBC increaser). As of

> now, my husband is not on the neupogen yet, I guess his docs will wait to

> see what his bloodwork reveals next week. Although, while in the hospital,

> he was receiving shots of neupogen to try and " kickstart " his white blood

> cells.

>

> I really feel for you--after having seemingly great success, for this to

> happen. Let's keep our hopes up and pray it all works out.

>

> Regards,

> Cervera

>

>> From: " cjwilliams16 " <coralee.williams@...>

>> Reply-

>>

>> Subject: [ ] My blood counts aren't stabalizing

>> Date: Thu, 09 Nov 2006 19:35:43 -0000

>>

>> Hi all,

>>

>> I just had another bone marrow biopsy today and the accompanying blood work

>> done. They

>> told me that my neutrophils and whites are continuing to drop and they

>> don't know why. My

>> doctor has had me off of Gleevec for 7 weeks now because of the counts and

>> I don't feel

>> comfortable about it. Does anyone out there have any experience with this

>> kind of situation

>> or some advice for me? Here I thought I had it made with Gleevec and now I

>> am starting to

>> panic a bit.

>>

>> Thanks,

>>

>> Cam

>>

>

November 10, 2006

Do you know what your numbers were? My wbc count is always low on Gleevec

like 2.0 -2.5 but as long as my neutrophils don't drop below 1.0 my dr

dosen't panic.

>From: " cjwilliams16 " <coralee.williams@...>

>Reply-

>

>Subject: [ ] My blood counts aren't stabalizing

>Date: Thu, 09 Nov 2006 19:35:43 -0000

>

>Hi all,

>

>I just had another bone marrow biopsy today and the accompanying blood work

>done. They

>told me that my neutrophils and whites are continuing to drop and they

>don't know why. My

>doctor has had me off of Gleevec for 7 weeks now because of the counts and

>I don't feel

>comfortable about it. Does anyone out there have any experience with this

>kind of situation

>or some advice for me? Here I thought I had it made with Gleevec and now I

>am starting to

>panic a bit.

>

>Thanks,

>

>Cam

>

_________________________________________________________________

Get today's hot entertainment gossip

http://movies.msn.com/movies/hotgossip?icid=T002MSN03A07001

November 10, 2006

Dorothy--thank you so much for all of your info---that is awesome to hear

all of that. My husband is always the one who is telling me that " everything

is proceeding great " , I just get freaked out about his WBCs, which, yes,

even his docs have told us that the anc is more important, as well as the

platelets. I guess the reason for my " freak outs " is that when he was last

hospitalized due to being neutropenic and his WBC was less than 500 with 0

neutrophils, the focus seemed to be on his WBC. We were constantly being

told " As soon as that rises, we can start thinking about getting you out of

here and back on Gleevec. " Unfortunately, at the time the oncologist he had,

had almost no experience with CML. We have sinced changed docs and have one

that has much experience and we love her. We live in Los Angeles area, and

we also have been so lucky to have been referred to the City of Hope Cancer

Research center. We got to see a group of CML specialists there who actually

were involved in the trials of Gleevec, they are also monitoring my

husband's condition. He always feels excellent and has been one of the

fortunate ones to have only experienced minor Gleevec side affects...we

thank God for that each and every day. We also realize that it may take a

matter of months for his body to figure out what it's going to do while on

Gleevec...he was only diagnosed this last July. He presented with a 449,000

WBC and had almost no symptoms. What got him into the ER was tingling in his

left hand and left side of his face--turns out he was suffering a stroke on

the left side of his body due to a blood clot on the right side of his

brain. Immediately the bloodwork and BMB revealed he had CML which is likely

the cause of the bloodclot and stroke. He had 3 brain surgeries, and that is

actually what took months for him to recover from, because of his excellent

overall health and I guess maybe his age (33), oh, and the awesome powers of

God, his recovery has been much quicker than expected. After we got through

that, we have just started in the last month or so to focus totally on the

CML. (We also had a 2.5 month old son--our first!!--at the time of his

diagnosis, so just trying to figure out the whole parenting thing was taking

it's toll on us, too!)

I am so glad to have learned about this forum, it is a wealth of knowledge

and thanks to people like you, Dorothy, if we all share that knowledge we

are all empowered. It is so great hearing of someone who has been on Gleevec

for years and is having good results, hopefully all CML patients can get to

that point in the next few years.

Regards

Cervera

>From: Dorothy Emery <doemery@...>

>Reply-

>

>Subject: Re: [ ] My blood counts aren't stabalizing

>Date: Thu, 09 Nov 2006 19:25:23 -0500

>

>As someone who has been on Gleevec for over 6 years (and doing great), I

>just think you should be aware that many of us on Gleevec remain with a

>wbc below the normal range. That's not all that unusual and as long as

>the anc remains above 500 it shouldn't be a problem. My wbc has been

>between 1.5 and 4.5 the whole 6+ years I've been on Gleevec (it was

>lowest the first 6 months--around 1.5) and I've never had a problem as

>the result of that--in fact the only time it has been in the normal

>range is when I've had a fever (and that doesn't happen often). A

> " normal " wbc for me is 2.8-3.8. I've been on 400 mg the entire time. I

>had one very short break during my first month on Gleevec (3 days off)

>and that is all. I see a cml expert at MD (Dr. Kantarjian) and

>I know he would give neupogen for a low wbc and do everything to keep

>the patient on at least 400 mg. of Gleevec. I know of another woman who

>also had an anc of zero (like your husband, ) but she was put on

>neupogen and continued with Gleevec (she wasn't hospitalized). She is

>doing great as well many years later--she no longer needs neupogen but

>her wbc is often below the normal range. The idea is to get rid of as

>many leukemia cells as possible without becoming resistant to the

>drug--the goal is not to get all the blood counts in normal ranges--that

>will never happen for many of us on Gleevec. My wbc was usually 2.5

>(2500) for the first 3-4 years on Gleevec. It's only been the last

>couple years that it has come up to 3.5 or so. I'm certainly glad I

>didn't spend all these years taking Gleevec breaks in an attempt to get

>my wbc higher as I doubt if I would have as strong a remission if I had

>done that. , the cml experts at MDACC would agree with Dr.

>Druker--it's important to be on Gleevec at an optimum dose. When people

>have very low platelets there isn't a great deal that can be done but a

>low anc can be handled. And if your doctors are trying to get the wbc

>into the normal range it sounds like they just don't have enough

>experience with cml and Gleevec. I would either find another doctor or

>ask the one I have to consult with an expert at MDACC or OHSU (they can

>just call and get advice--that is done all the time). I hope this

>helps and good luck with your treatment.

>

>Regards,

>Dorothy

>dx 5/2000

>400 mg. Gleevec since 9/2000

>pcru

>wbc typically 3.5

>

> Cervera wrote:

> > My husband has had the same thing happen--he was only on Gleevec for 7

> > weeks, doing awesome till one day his white blood cells tanked to almost

> > nothing---and he had NO neutrophils (literally, undetectable amounts)

>and

> > was placed in the hospital. I dont want to alarm you, but based on all

>his

> > docs' recommendations, he was placed in isolation in the hospital, taken

>off

> > Gleevec, until his counts came up--it took a month. While there, he was

>on

> > tons of antibiotics for fear that since he had no neutrophils, he was

> > suseptible to anything contagious. As soon as his counts went back up,

>he

> > was put back on Gleevec--only starting at 100mg/day and then working his

>way

> > up. He currently is only at 300mg/day and when he went yesterday for

>blood

> > work, his WBC has dropped again to only 3500. They have left him on

>300mg,

> > and will wait to see where he stands next week. They are hoping his

>counts

> > rise again slightly, so that they can get him to 400mg/day and that is

>where

> > he'll stay.

> >

> > I wrote to Dr. Druker myself (who invented Gleevec), about my husband's

> > situation. He wrote back and his advice was to try and stay on

>400mg/Gleevec

> > per day and to NOT lower it. But, in order for the WBC to stay in the

> > " normal " range, that would require shots of neupogen (WBC increaser). As

>of

> > now, my husband is not on the neupogen yet, I guess his docs will wait

>to

> > see what his bloodwork reveals next week. Although, while in the

>hospital,

> > he was receiving shots of neupogen to try and " kickstart " his white

>blood

> > cells.

> >

> > I really feel for you--after having seemingly great success, for this to

> > happen. Let's keep our hopes up and pray it all works out.

> >

> > Regards,

> > Cervera

> >

> >> From: " cjwilliams16 " <coralee.williams@...>

> >> Reply-

> >>

> >> Subject: [ ] My blood counts aren't stabalizing

> >> Date: Thu, 09 Nov 2006 19:35:43 -0000

> >>

> >> Hi all,

> >>

> >> I just had another bone marrow biopsy today and the accompanying blood

>work

> >> done. They

> >> told me that my neutrophils and whites are continuing to drop and they

> >> don't know why. My

> >> doctor has had me off of Gleevec for 7 weeks now because of the counts

>and

> >> I don't feel

> >> comfortable about it. Does anyone out there have any experience with

>this

> >> kind of situation

> >> or some advice for me? Here I thought I had it made with Gleevec and

>now I

> >> am starting to

> >> panic a bit.

> >>

> >> Thanks,

> >>

> >> Cam

> >>

> >

>

_________________________________________________________________

Add a contact to Windows Live Messenger for a chance to win a free

trip!

http://www.imagine-windowslive.com/minisites//default.aspx?locale=en-us & hmt\

agline

November 16, 2006

I was on 600 mg to start, then increased to 800 mg. However, most people I

have spoken to have been on a much lower dose.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 11/16/2006 12:11:20 P.M. Eastern Standard Time,

weez_555@... writes:

So--just wondering---what doses of Gleevec were you on the first year after

diagnosis?

Thanks for all of your info--

Cervera

November 16, 2006

Hi Dorothy--

I wrote to you a couple times about my husband's dropping WBC. Thing is, all

other counts are stable and good--RBC, platelets, neutrophils,

hemoglobin...everything. Currently (this week), his WBC dropped again and is

at 2900...last week we were at 3400. Neutrophils are 60%, so that is good.

His onc (that we love and trust very much), has just said she has not seen

this in any of her other Gleevec patients. She is not alarmed yet, since all

of his other counts are very good. She has kept him at 300mg to make sure

that his counts dont drop drastically like they did about 2 months ago, when

he was placed in the hospital. We are hoping he can get up to the 400mg/day

in the next month or so. When you counts were dropping and stayed low--were

you on the 400mg/day...or lower? My husband always feels

excellent...literally, all of the time. If his counts werent continually

dropping, we would worry about nothing. My husband never worries...I do!!!

He just keeps saying maybe he is one of those people (like you!), whose WBC

stay low, and he constantly reminds me to do our homework, gather facts, and

always talk to others...but ultimately, let's trust our doctor since she is

the one educated alot better than we are!