White count too low on gleevec

[Guest guest]

Hello, I am new to this support group. I am a 37 year old woman who

was recently diagnosed as having cml. At the beginning of August I

was seen at mayo clinic in MN. I left mayo believing that I had

myelofibrosis but mayo was awaiting one last test, a chromosome

test. On my way home (I live in Indiana) after about two hours of

crying believing that I needed a bmt because that's what they told

me because my white count was raising too fast they called to give

me the news that I had cml instead. You never seen anyone so happy

to have leukemia before let me tell you! I started gleevec and the

first week (400 mgs) my counts still rose higher. The second week

my very enlarged spleen was within 3cm of being normal size & my

white count was 13,000 almost withing normal range. The 3rd week my

white count was below normal, 3.6. Now after 6 weeks my white count

is 1.8. My doc that I see locally called mayo clinic and they told

me to stop the med for a while and let my counts recover. My

question is has anyone out there experienced this? I am so freaked

out about this I just want to know if anyone has had this happen &

if so what did the docs do and how did you respond?

Thanks, Sheila

[Guest guest]

Hi Sheila,

Welcome to the group. Yes, lots of us have had low counts,

especially in the beginning. Some experts view it as a good thing

because it shows that the Gleevec is doing its job.

Since you're new, you may want to go to the files section of this

site (just click on " files " at the left) then click on the CML FAQ

and the CML Glossary. Others have found these documents to be

helpful, maybe you will too.

Do you know what your ANC is? The ANC is more indicitive of what's

going on than the WBC and the experts usually look at the ANC when

they decide whether or not to take the patient off of Gleevec for a

short time. Ideally, the ANC should be above 1.

Many of the group members have had to temperarily stop Gleevec due

to low counts so you're certainly not alone.

Take care,

Tracey

[Guest guest]

At 11:54 PM 9/16/05 +0000, you wrote:

> I left mayo believing that I had

>myelofibrosis but mayo was awaiting one last test, a chromosome

>test. On my way home (I live in Indiana) after about two hours of

>crying believing that I needed a bmt because that's what they told

>me because my white count was raising too fast they called to give

>me the news that I had cml instead. You never seen anyone so happy

>to have leukemia before let me tell you!

Hi Sheila,

I answered your white count question on the ACOR list...........

just wanted to say, YES, CML is known as the " good leukemia " !!

Many of us got that response from our docs after Gleevec arrived.

Welcome to this list.

C.

[Guest guest]

Sheila,

I too am in my 30's (33) and recently dx with CML. It has been my

understanding that we NEVER stop the Gleevec, even if counts drop. " we treat

the

symptoms, " my counts dropped to in the beginning and this is a great sign of

myeosuppression, or the bone marrow getting rid of the " bad " cells and then the

counts will recover as you marrow starts making the good cells. This shows that

the Gleevec is working. I was told that if you stop the Gleevec you have a

chance to build up a resistance to the Gleevec.

I live in Las Vegas but fly to Portland Oregon to see Dr. Mauro and Dr.

Druker (the MD that developed the Gleevec). Of course, this is all my

understanding, but I can assure you my counts did the exact same thing and some

are still

really low and I stayed on the Gleevec.

My WBC down to 2.2, platelets down to 74, hemoglobin 10.

Hope some of this helps.

CML 5/13/05

Gleevec 600 mg

[Guest guest]

Hi Sheila and ,

, welcome to the group.

In some cases, it is appropriate to interrupt Gleevec treatment.

You can read the Gleevec prescribing information that Novartis puts

out here:

http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf

Near the bottom, you'll see that if the ANC goes below 1.0 and the

patient is in chronic phase, it is suggested that they interrupt

treatment until the counts rebound. This is why I asked if Sheila

knew her ANC because this is the count that is more concerning (as

opposed to the WBC).

Some doctors are now using growth factors (such as Neupogen) to

increase the ANC and avoid disruption of Gleevec treatment so this

is something you can talk to your doctor about if it becomes a

regular problem.

Good luck,

Tracey