Re: low white count upon diagnosis

[Guest guest]

hi, is anyone out there from my area-bucksport bangor- ellsworth, maine?

marion tozier

[Guest guest]

Wow! How did doctors even know you had it with normal WBC counts?

>

> I am new to this group. My sister found it for me. I was diagnosed

> with CML in June. All of my blood counts including my white blood

> cells were in a normal range before I started the Gleevec. I started

> the Gleevec the 1st week of Sept which was a delay but I needed to

> wean my newborn son from nursing. I took it for 4 weeks and have been

> off of it since Oct. 10th due to low blood counts. They drop every

> week to 1.5. I get weekly Neuprogin shots but it still drops by the

> 5th day or so. I have heard of high white blood cell counts with CML

> but did anyone have low or normal white counts at diagnosis? Do I

> just start again on the Gleevec at 300 mg or start at 400 mg? I've

> been off of it for over 6 weeks now. Any experience with this? Thank

> you!!

>

[Guest guest]

Hi, I had a very low white blood count, only 19,000 at diagnosis. I am on 400

mg. and went into remission in only six months. in minn

dx 12/03/03

[ ] low white count upon diagnosis

I am new to this group. My sister found it for me. I was diagnosed

with CML in June. All of my blood counts including my white blood

cells were in a normal range before I started the Gleevec. I started

the Gleevec the 1st week of Sept which was a delay but I needed to

wean my newborn son from nursing. I took it for 4 weeks and have been

off of it since Oct. 10th due to low blood counts. They drop every

week to 1.5. I get weekly Neuprogin shots but it still drops by the

5th day or so. I have heard of high white blood cell counts with CML

but did anyone have low or normal white counts at diagnosis? Do I

just start again on the Gleevec at 300 mg or start at 400 mg? I've

been off of it for over 6 weeks now. Any experience with this? Thank

you!!

[Guest guest]

I have tons of experience with this as my husband has gone through the same

things. He is currently back on Gleevec at only 300mg/day, his WBC is still

low--about 2900. He also was on neupogen shots while in the hospital--had to

stay in hospital for 30 days because his counts were so low and he was

susceptible to many infections. And, we, too have a newborn--my husband was

diagnosed when our son was 2.5 months old. Sounds like we have lot of

similarities. If you want, I can share info with you offline. I have written

much about my husband's continual low counts and his on again/off again with

Gleevec. I have also written to Dr. Druker (doctor who invented Gleevec),

and has gotten his take on it as well. He seems to think my husband (and

everyone) should remain on 400mg/Gleevec at minimum and continue with

neupogen shots. My husband also had another shot (WBC increaser, too, like

neupogen)...I will get the name for you.

Currently, he gets his blood tested weekly, and although his numbers are

still " low " , his ANC is in the normal range, and so that is the most

important (Absolute Neutrophil Count).

I can tell you alot more (offline if you want)...

Regards and good luck with CML, Gleevec and your new baby..

Cervera

>From: " s_rustman " <s_rustman@...>

>Reply-

>

>Subject: [ ] low white count upon diagnosis

>Date: Tue, 28 Nov 2006 08:49:04 -0000

>

>I am new to this group. My sister found it for me. I was diagnosed

>with CML in June. All of my blood counts including my white blood

>cells were in a normal range before I started the Gleevec. I started

>the Gleevec the 1st week of Sept which was a delay but I needed to

>wean my newborn son from nursing. I took it for 4 weeks and have been

>off of it since Oct. 10th due to low blood counts. They drop every

>week to 1.5. I get weekly Neuprogin shots but it still drops by the

>5th day or so. I have heard of high white blood cell counts with CML

>but did anyone have low or normal white counts at diagnosis? Do I

>just start again on the Gleevec at 300 mg or start at 400 mg? I've

>been off of it for over 6 weeks now. Any experience with this? Thank

>you!!

>

_________________________________________________________________

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[Guest guest]

Hi ,

I apologize for the delay. I haven't gone back into this site since I

posted the first comment. I would love to talk to you. My email

address is groversl@.... My tel # is (949) 481-3380. If you

prefer, you could give me you # as well and I'd be happy to call you.

I appreciate your return comments and I would love to talk to you.

Thank you,

Sherry

>

> I have tons of experience with this as my husband has gone through

the same

> things. He is currently back on Gleevec at only 300mg/day, his WBC

is still

> low--about 2900. He also was on neupogen shots while in the

hospital--had to

> stay in hospital for 30 days because his counts were so low and he

was

> susceptible to many infections. And, we, too have a newborn--my

husband was

> diagnosed when our son was 2.5 months old. Sounds like we have lot

of

> similarities. If you want, I can share info with you offline. I

have written

> much about my husband's continual low counts and his on again/off

again with

> Gleevec. I have also written to Dr. Druker (doctor who invented

Gleevec),

> and has gotten his take on it as well. He seems to think my husband

(and

> everyone) should remain on 400mg/Gleevec at minimum and continue

with

> neupogen shots. My husband also had another shot (WBC increaser,

too, like

> neupogen)...I will get the name for you.

>

> Currently, he gets his blood tested weekly, and although his

numbers are

> still " low " , his ANC is in the normal range, and so that is the

most

> important (Absolute Neutrophil Count).

>

> I can tell you alot more (offline if you want)...

> Regards and good luck with CML, Gleevec and your new baby..

> Cervera

>

>

> >From: " s_rustman " <s_rustman@...>

> >Reply-

> >

> >Subject: [ ] low white count upon diagnosis

> >Date: Tue, 28 Nov 2006 08:49:04 -0000

> >

> >I am new to this group. My sister found it for me. I was diagnosed

> >with CML in June. All of my blood counts including my white blood

> >cells were in a normal range before I started the Gleevec. I

started

> >the Gleevec the 1st week of Sept which was a delay but I needed to

> >wean my newborn son from nursing. I took it for 4 weeks and have

been

> >off of it since Oct. 10th due to low blood counts. They drop every

> >week to 1.5. I get weekly Neuprogin shots but it still drops by the

> >5th day or so. I have heard of high white blood cell counts with

CML

> >but did anyone have low or normal white counts at diagnosis? Do I

> >just start again on the Gleevec at 300 mg or start at 400 mg? I've

> >been off of it for over 6 weeks now. Any experience with this?

Thank

> >you!!

> >

>

> _________________________________________________________________

> Fixing up the home? Live Search can help

> http://imagine-windowslive.com/search/kits/default.aspx?

kit=improve & locale=en-US & source=hmemailtaglinenov06 & FORM=WLMTAG

>

[Guest guest]

Hi

Thanks for the response. I apologize for the delay in getting back on

the website. Do you have a lot of side effects with the Gleevec? Low

blood counts or anything?

Thank you,

Sherry

--- In , " Finsand " <chrisfinsand2@...>

wrote:

>

> Hi, I had a very low white blood count, only 19,000 at diagnosis.

I am on 400 mg. and went into remission in only six months. in

minn

> dx 12/03/03

> [ ] low white count upon diagnosis

>

>

> I am new to this group. My sister found it for me. I was

diagnosed

> with CML in June. All of my blood counts including my white blood

> cells were in a normal range before I started the Gleevec. I

started

> the Gleevec the 1st week of Sept which was a delay but I needed

to

> wean my newborn son from nursing. I took it for 4 weeks and have

been

> off of it since Oct. 10th due to low blood counts. They drop

every

> week to 1.5. I get weekly Neuprogin shots but it still drops by

the

> 5th day or so. I have heard of high white blood cell counts with

CML

> but did anyone have low or normal white counts at diagnosis? Do I

> just start again on the Gleevec at 300 mg or start at 400 mg?

I've

> been off of it for over 6 weeks now. Any experience with this?

Thank

> you!!

>

>

>

>

>

>

[Guest guest]

The doctors found irregular things in my blood when I delivered my

son. I went for further testing from there.

> >

> > I am new to this group. My sister found it for me. I was

diagnosed

> > with CML in June. All of my blood counts including my white blood

> > cells were in a normal range before I started the Gleevec. I

started

> > the Gleevec the 1st week of Sept which was a delay but I needed

to

> > wean my newborn son from nursing. I took it for 4 weeks and have

been

> > off of it since Oct. 10th due to low blood counts. They drop

every

> > week to 1.5. I get weekly Neuprogin shots but it still drops by

the

> > 5th day or so. I have heard of high white blood cell counts with

CML

> > but did anyone have low or normal white counts at diagnosis? Do

I

> > just start again on the Gleevec at 300 mg or start at 400 mg?

I've

> > been off of it for over 6 weeks now. Any experience with this?

Thank

> > you!!

> >

>