Re: [cml 2]neutrophils

[Guest guest]

Hey Everyone,

Hope this finds everyone well- I have a quick q- not wanting to bug

but need some advice/knowledge. How low does your Dr allow your

neutrophils to go before worry? I asked for all blood results to be

sent to us- which they are- I am reviewing my husband's and was

curious. His neutrophils are 1.1 right now...thanks in advance!

Merry Christmas to all!

shalyn

[Guest guest]

Below 1.0 is time to start worrying and never go below 0.5. This is what I

have concluded based on all my readings on the subject.

Merry Christmas to you too!

_____

From: shalyn@... [mailto:shalyn@...]

Sent: Tuesday, December 12, 2006 3:18 PM

Subject: Re: [ ]neutrophils

Hey Everyone,

Hope this finds everyone well- I have a quick q- not wanting to bug

but need some advice/knowledge. How low does your Dr allow your

neutrophils to go before worry? I asked for all blood results to be

sent to us- which they are- I am reviewing my husband's and was

curious. His neutrophils are 1.1 right now...thanks in advance!

Merry Christmas to all!

shalyn

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[Guest guest]

THANKS SO MUCH!!

> Below 1.0 is time to start worrying and never go below 0.5. This is what I

> have concluded based on all my readings on the subject.

> Merry Christmas to you too!

[Guest guest]

Wow Cam- .3-.8 ?? That's extremely low! I guess you have be super

careful of sickness and flus going around or ? My kids are all getting

sick right now and my husband is trying to avoid it but it is

difficult. He has not gotten sick, so that is a good thing. I sure

hope your counts are up soon - What is happening with the rest of your

counts? Hope things pick up for you soon (literally)!

Shalyn

[Guest guest]

Although my neutrophils aren't as low as that, they're still pretty

pitiful at only 1.3 but I have to say that I haven't seen any

difference in my ability to fight things off. In fact, I might even

be as bold as to say that my immune system is stronger even with these

low counts. I actually had a cold a few weeks ago that was almost a

joke. It lasted 3 days and was nothing worse than a runny nose. Not

that I'm complaining

Tracey

>

> Wow Cam- .3-.8 ?? That's extremely low! I guess you have be super

> careful of sickness and flus going around or ? My kids are all

getting

> sick right now and my husband is trying to avoid it but it is

> difficult. He has not gotten sick, so that is a good thing. I sure

> hope your counts are up soon - What is happening with the rest of

your

> counts? Hope things pick up for you soon (literally)!

> Shalyn

>

[Guest guest]

I have fought low neutrophils pretty much since I started gleeve in August 05.

My local doc messed with my dose and had me taking 400 mgs every other day

earlier this year and that brought my neutrophils up and also my platelets. In

March when I went to Mayo for a follow up and another bmb my leukemia cells were

on the rise, they were around 26%. So I started taking 400 mgs daily at the end

of May a FISH test was done and my leukemia cells were at 68%. So I took 600

mgs a week to see if I could tolerate it ~ not side effect wise, but to see how

low my anc would go. At one point my anc was .5% when it got this low I was

given a neupogen shot. After a week on 600 mgs I started taking 800 mgs of

gleevec a day. At my last FISH test that was done in October it showed .4% I

just had one drawn last week and sent to Mayo clinic, I have an appointment

there next Wednesday, the 20th for a follow up so I'm hoping it will show .0%

I have toleratd the higher dose. At first my

anc would go low and I averaged a neupogen shot once a month. In October when

my last FISH was done my anc started going up on it's own, I was so shocked

because I was going for weekly blood work and the way things had been going I

was due for a shot. I was so suprised when I went for labs and my anc was in

the normal range, the week prior I was almost at 1.0 when I got that low they

would give me the shot. My Mayo doc said under no circumstances was I to go off

the 800 mgs dose, that I was to treat my symptoms. So since October my anc has

stayed in the normal range, now I'm just dealing with low hemoglobin counts,

last labs showed 8.8 if they go any lower I will have to get a shot for that. My

Mayo doc said that when the leukemia cells are low or gone that the neutrophils

usually bounce back to normal. As far as the low hemo counts I'm not sure

what's going on there I guess I'll find out next week when I go to Minnesota,

unless anyone knows?? So hang in there Cam,

it took me right at a year to get those neutrophils back to normal!

Tracey <traceyincanada@...> wrote: Although my neutrophils aren't

as low as that, they're still pretty

pitiful at only 1.3 but I have to say that I haven't seen any

difference in my ability to fight things off. In fact, I might even

be as bold as to say that my immune system is stronger even with these

low counts. I actually had a cold a few weeks ago that was almost a

joke. It lasted 3 days and was nothing worse than a runny nose. Not

that I'm complaining

Tracey

>

> Wow Cam- .3-.8 ?? That's extremely low! I guess you have be super

> careful of sickness and flus going around or ? My kids are all

getting

> sick right now and my husband is trying to avoid it but it is

> difficult. He has not gotten sick, so that is a good thing. I sure

> hope your counts are up soon - What is happening with the rest of

your

> counts? Hope things pick up for you soon (literally)!

> Shalyn

>

---------------------------------

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[Guest guest]

Thanks to everyone that offered personal experiences and advice about low

blood counts. When I looked at the research it seemed that I was in a very

small percentage that had these symptoms. It gives me a bit of piece of mind

knowing there are others out there with the same problems. To those who have

had the neupogen and neumega shots‹are there any side effects to those? My

doctor has not recommended them yet and I am wondering why. Isn¹t fighting

the disease more important that waiting for blood counts to come up on their

own?

Cam

On 12/14/06 8:15 PM, " sheila hoffman " <sheilamonster13@...> wrote:

>

>

>

>

> I have fought low neutrophils pretty much since I started gleeve in August 05.

> My local doc messed with my dose and had me taking 400 mgs every other day

> earlier this year and that brought my neutrophils up and also my platelets.

> In March when I went to Mayo for a follow up and another bmb my leukemia cells

> were on the rise, they were around 26%. So I started taking 400 mgs daily at

> the end of May a FISH test was done and my leukemia cells were at 68%. So I

> took 600 mgs a week to see if I could tolerate it ~ not side effect wise, but

> to see how low my anc would go. At one point my anc was .5% when it got this

> low I was given a neupogen shot. After a week on 600 mgs I started taking 800

> mgs of gleevec a day. At my last FISH test that was done in October it showed

> .4% I just had one drawn last week and sent to Mayo clinic, I have an

> appointment there next Wednesday, the 20th for a follow up so I'm hoping it

> will show .0% I have toleratd the higher dose. At first my

> anc would go low and I averaged a neupogen shot once a month. In October

> when my last FISH was done my anc started going up on it's own, I was so

> shocked because I was going for weekly blood work and the way things had been

> going I was due for a shot. I was so suprised when I went for labs and my anc

> was in the normal range, the week prior I was almost at 1.0 when I got that

> low they would give me the shot. My Mayo doc said under no circumstances was

> I to go off the 800 mgs dose, that I was to treat my symptoms. So since

> October my anc has stayed in the normal range, now I'm just dealing with low

> hemoglobin counts, last labs showed 8.8 if they go any lower I will have to

> get a shot for that. My Mayo doc said that when the leukemia cells are low or

> gone that the neutrophils usually bounce back to normal. As far as the low

> hemo counts I'm not sure what's going on there I guess I'll find out next

> week when I go to Minnesota, unless anyone knows?? So hang in there Cam,

> it took me right at a year to get those neutrophils back to normal!

> Tracey <traceyincanada@... <mailto:traceyincanada%40> > wrote:

> Although my neutrophils aren't as low as that, they're still pretty

> pitiful at only 1.3 but I have to say that I haven't seen any

> difference in my ability to fight things off. In fact, I might even

> be as bold as to say that my immune system is stronger even with these

> low counts. I actually had a cold a few weeks ago that was almost a

> joke. It lasted 3 days and was nothing worse than a runny nose. Not

> that I'm complaining

> Tracey

>

>

>> >

>> > Wow Cam- .3-.8 ?? That's extremely low! I guess you have be super

>> > careful of sickness and flus going around or ? My kids are all

> getting

>> > sick right now and my husband is trying to avoid it but it is

>> > difficult. He has not gotten sick, so that is a good thing. I sure

>> > hope your counts are up soon - What is happening with the rest of

> your

>> > counts? Hope things pick up for you soon (literally)!

>> > Shalyn

>> >

>

> ---------------------------------

> Access over 1 million songs - Music Unlimited.

>

>

[Guest guest]

Hi Cam,

Yes I completely understand where you are coming from. We saw our Dr

yesterday - they are not happy with my husband's dropping neutrophils

and want to discuss reducing his dosage to 200 mgs of gleevec daily.

From what I understand 200 is not recommended nor has it proven to do

much to fight CML.....am I correct? I requested the idea of neopogen

but like your Dr , ours did not recommend...though I personally feel

more comfortable with it than stopping or reducing the

gleevec...though to be frank the dr is far more educated than me

(haha) She said as far as the neupogen goes - it would be a daily shot

and only lasts as long as you take it and its quite expensive. We have

coverage for this but not sure what to do...for now we are just

watching and waiting and if my husband gets ill- then we will deal

with it..?? not sure what else to do?

shalyn

[Guest guest]

Hi Shalyn,

One thing that stood out to me during the teleconference was when

Dr. Druker stressed the importance of seeing an expert for CML

treatment.

As I'm sure you know, CML is quite rare and few doctors have a lot

of experience treating it. If your husband had " run of the mill "

CML then I could see how you wouldn't bother with an expert opinion

but since he's got issues with his neutrophils, I would very much

encourage you to seek out an expert.

I've never heard any of the experts favouring the reduction of the

dosage to 200mg over giving Neupogen shots. They've all stressed

the risk of developing resistance with sub-optimal dosing so I

really hope you'll consider consulting with a specialist before you

reduce the dosage. You may not have to travel yourself for the

consult if your doctor is willing to contact the expert. I know

others have done this.

Goodluck,

Tracey

>

> Hi Cam,

>

> Yes I completely understand where you are coming from. We saw our

Dr

> yesterday - they are not happy with my husband's dropping

neutrophils

> and want to discuss reducing his dosage to 200 mgs of gleevec

daily.

> From what I understand 200 is not recommended nor has it proven

to do

> much to fight CML.....am I correct? I requested the idea of

neopogen

> but like your Dr , ours did not recommend...though I personally

feel

> more comfortable with it than stopping or reducing the

> gleevec...though to be frank the dr is far more educated than me

> (haha) She said as far as the neupogen goes - it would be a daily

shot

> and only lasts as long as you take it and its quite expensive. We

have

> coverage for this but not sure what to do...for now we are just

> watching and waiting and if my husband gets ill- then we will

deal

> with it..?? not sure what else to do?

> shalyn

>

[Guest guest]

Hi Tracey,

Thanks alot for that info. I agree and felt that too- we are seeing a

VERY young , inexperienced Dr who we do not feel is ready for this- so

we have asked for a referral to a specialist here- and have our

appointment Jan 3-so this is good. Dr Lavoie did the Gleevec trials

for BC and is on the transplant team and we are very comfortable with

her. I agree with you recommending to really try to to reduce

dosage..thanks so much- wow this board is so great...I really

appreciate all the wonderful advice and encouragement..thanks Tracey!

Shalyn

> Hi Shalyn,

>

> One thing that stood out to me during the teleconference was when

> Dr. Druker stressed the importance of seeing an expert for CML

> treatment.

>

> As I'm sure you know, CML is quite rare and few doctors have a lot

> of experience treating it. If your husband had " run of the mill "

> CML then I could see how you wouldn't bother with an expert opinion

> but since he's got issues with his neutrophils, I would very much

> encourage you to seek out an expert.

>

> I've never heard any of the experts favouring the reduction of the

> dosage to 200mg over giving Neupogen shots. They've all stressed

> the risk of developing resistance with sub-optimal dosing so I

> really hope you'll consider consulting with a specialist before you

> reduce the dosage. You may not have to travel yourself for the

> consult if your doctor is willing to contact the expert. I know

> others have done this.

>

> Goodluck,

> Tracey

[Guest guest]

At 04:53 PM 12/15/06 -0800, you wrote:

>Yes I completely understand where you are coming from. We saw our Dr

>yesterday - they are not happy with my husband's dropping neutrophils

>and want to discuss reducing his dosage to 200 mgs of gleevec daily.

> From what I understand 200 is not recommended nor has it proven to do

>much to fight CML.....am I correct? I requested the idea of neopogen

>but like your Dr , ours did not recommend...though I personally feel

>more comfortable with it than stopping or reducing the

>gleevec...though to be frank the dr is far more educated than me

>(haha) She said as far as the neupogen goes - it would be a daily shot

>and only lasts as long as you take it and its quite expensive. We have

>coverage for this but not sure what to do...for now we are just

>watching and waiting and if my husband gets ill- then we will deal

>with it..?? not sure what else to do?

Hi Shalyn,

Your doctor does not sound that knowledgeable about treating CML. Many

people have needed a white cell booster (Neupogen) for a period of time or

even long term to stay on a therapeutic dose of Gleevec. It is NOT a daily

shot......some people do it 2 or 3 times a week, but it is much more common

to have the shot once a week or less. These shots are expensive....and if

you are in an HMO medical system, that might be why the doctor is saying

that! (they are known for trying to save $$).

Your husband should not be on 200mg (unless serum blood level testing shows

that that dose is adequate, and that would be very uncommon). I really

think you need to see about consulting with another doctor......that is

what I would check into with your insurance ASAP!

C.

[Guest guest]

At 11:01 AM 12/15/06 -0700, you wrote:

>Thanks to everyone that offered personal experiences and advice about low

>blood counts. When I looked at the research it seemed that I was in a very

>small percentage that had these symptoms. It gives me a bit of piece of mind

>knowing there are others out there with the same problems. To those who have

>had the neupogen and neumega shots‹are there any side effects to those? My

>doctor has not recommended them yet and I am wondering why. Isn¹t fighting

>the disease more important that waiting for blood counts to come up on their

>own?

Hi Cam,

I have not had the nuepogen shots but know others who have. Sometimes they

get some bone pain and achiness because the shot is stimulating the bone

marrow to produce more cells, but this is only for a day or so. Dr. Druker

has written a treatment protocol for treating cml, and yes, you are

supposed to use the 'boosters' over going off the drug.

Maybe Zavie can point you to this article, then you can show it to your

doctor.....but some doctors are stubborn and don't want to learn from their

patients!

C.