Re: hello again from sunny Philippines

[Guest guest]

Hi Aimee.....see my responses throughout your message.

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> My daughter Aia is, thankfully, recovering well. She's still on hydroxyurea

and allopurinol. Occasionally, she does tire easily than her other days

>

> Aia's (or Cookie as we would call her) WBC count was going down pretty well

from the time she got discharged from the hospital. We have the weekly blood

tests to monitor her counts. So 2 weeks ago, her WBC was at 78K, the following

week, it went up to 128K, and just yesterday, results showed an increase to

143K. Her oncologist once again increase her hydroxyurea dose. She sometimes has

difficulty sleeping though I would like to think it's more on the emotional

impact of CML on her rather than the medicines' side effects.

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Hydrea can be a hard drug to work with, to figure out the dose and the white

count can go up and down.....but it looks like she was not on enough. Hydrea is

a hard drug on your body, it can cause fatigue and other side effects and may be

causing the insomnia.

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> So anyway, I've a some questions that you might have some piece to give me on:

> 1. Her oncologist told us way back that he wants to bring her WBC count to

some low level before she starts with Gleevec (it's Glivec here in the

Philippines, btw). It's at 143K currently. Does anyone have an idea how low it

should be before starting with the drug? I always am stumped at the doctor's

office and would forget to ask the Oncologist what number we're targeting for.

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I don't know exactly what level would be right to start Glivec....many of us

were on hydrea at first, but that was a long time ago. What you need to do as

far as the appointments, write all your questions down on paper before the appt,

and have that list with you (many doctors are used to this). Ask for and get

specific answers to your questions....you have a right to know.

Also, do you know how experienced this doctor is with treating CML. I would even

ask how many cml patients he is presently treating to give you an idea. If he is

not very experienced, then maybe ask him to consult with a cml specialist. You

have to do all this in the right manner....but as a parent, you have the right

to be very concerned.

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> 2. In terms of her diet, what are the things that she should avoid?

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If she likes grapefruit, she needs to give that up (fruit and juice), also star

fruit, pomegranate. Otherwise a good healthy diet....fruits and vegetables, lean

meat or fish, etc.

Avoid junk food, and especially soda and other forms of white sugar. This makes

the body more acidic, which is what the drugs will also do.

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> 3. Is it okay to give her natural supplements at this time? Like vitamins,

etc.?

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You need to be careful with herbs and some supplements and should ask the

oncologist or a pharmacist. Most say a multi-vit is fine.

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> 4. She's going to take a leave of absence from school meantime. How long do

you think will it take before she can go back to school?

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I think a leave from school is a good idea until her cml is stabilized and she

is on Glivec and has adjusted to it. Can't say how long that will take. Right

now she has a high white count of abnormal cells and probably would be more

prone to illness, infection. But she should get whatever kind of exercise that

she likes and stay active.

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> I've also attached a photo of my daughter taken October 2009. She has big

dreams of becoming doctor and is on her sophomore year as a Pre-Med student

until she was diagnosed last February 2010. Oh dear, I'm praying she lives to

fulfill that and more....

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Your daughter will get back on track with her studies and should resume a pretty

normal life soon.....but right now, you both need to work with her doctor to get

her cml under control and under treatment.

Best wishes,

C. (from Oregon, USA)