for C. (OR, USA) - Thank You

[Guest guest]

dear ,

Thank you for being so detailed with your response to my queries. I truly

appreciate every bit of information that I get from you and everyone here about

CML and everything related to it.

We called that Oncologist yesterday and he advised that we do need to wait for a

couple of weeks or more to see if her WBC's consistently drop and remain at a

lower level. He did lower the dose 2 weeks back and that's when the count rose.

The following week it rose again despite an increase in dose. So right now,

she's back on her initial dose at diagnosis of 2 tabs/ 3x a day.

Let me just share that Cookie has been taking this health drink called VitaPlus

made from vegetable and guyabano (soursop) extracts since her 5th day of

confinement. We were warned about the side effects of Hydroxyurea but, I dunno

what you'll say to this, since the time we gave VitaPlus to her, her nausea and

vomiting stopped and has since recovered swiftly. I'd like to believe that the

drink had a lot to do with it as it is the only thing constant in her daily diet

since that 5th day at the hospital. The fatigue comes occasionally but other

than that, she is looking and feeling well.

I agree with you on being prudent about taking supplements. I just wish we can

give her more to augment what she lacks especially with her blood counts and

all. She is very anemic, though I was told it's in large part due to the heavy

dose of Hydroxyurea. She might do another round of transfusion if her counts

don't improve this week. So I'm praying this week will be a good week for her.

It's funny how you're so right on how I feel about asking our Oncologists

questions. I have been playing it in my head how I'd pose the " heavy " questions

that I have ever so carefully. Pray that I get the words right when I do ask

I do know he's one respected Oncologist/ Hematologist in the country. At this

point, I still have yet to find a CML specialist in the Philippines. Would

appreciate it if anyone here can provide some information on this.

Thank you again for sharing your insights. I am very happy to be in the midst of

people like you. Take care, !

Praying for you all,

Aimee

________________________________

From: hey00nanc <ncogan@...>

Sent: Mon, March 22, 2010 3:11:26 AM

Subject: [ ] Re: hello again from sunny Philippines

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

____________ _________ _________ _________ _____

> 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.

____________ _________ ________

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.

____________ _________ ________

> 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.

____________ _________ _________ ___

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.

____________ _________ _________ __

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

____________ _________ _________ _

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.

____________ _________ _________ ___

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

etc.?

____________ _________ _________ _______

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.

____________ _________ _________ _______

> 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?

____________ _________ _________ _________

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.

____________ _________ _________ _________ _

> 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....

____________ _________ _________ _________ ____

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)