Re: d'Araille - Thank you

[Guest guest]

Hi Aimee,

I'm still in disbelief myself about the birth and perfectly healthy baby. First

recommendation for CML discovered in pregnancy is abortion (totally unacceptable

for me) just because it's such a headache for doctors to deal with. In the end I

proved them wrong but I'm still scared about CML and where it's going to take me

in my life.

About EGCG, from what I've learned it's not good to take it in a pill form

because the concentration of it in the pill is too high ( like 50 times more

than in a brew prepared from leaves) for the liver and kidneys to cope with and

people who had taken those pills had problems later on with kidney and/or liver

function, even failure. If you have problems getting green tea leaves please do

let me know and I'll post few packets to you. At the moment I only pay 99p for a

box which lasts me a week so it wouldn't be any significant cost to me.

Thank you for thinking about Matilda and sending her kisses, it means a lot to

me.

All the best

From: Aimee Lou J Alvarez

Sent: Monday, March 22, 2010 3:32 PM

Subject: [ ] d'Araille - Thank you

Hi ,

First off, my warm congratulations on Matilda's birth! Like what they say, a

baby is God's sign that the world must go on! I am so amazed by the free birth

you underwent and more so that you also had CML in the course of your

pregnancy.You are one tough woman, I could tell. Cheers!

Thank you, for sharing with me your experience and insights on CML. Since

my daughter's diagnosis, I admit to being in a period of denial and somehow,

taking in all the things that I learn from other CML patients as you, I'm slowly

gaining the guts to just deal with it head on. Thank you to people like Zavie,

et. al who give so much hope to everyone here who are in the same boat.

Yes, I've been too wary about giving my daughter supplements as that might

confuse her blood test results. But your EGCG experience is truly remarkable.

It's been a month since Aia's discharge from the hospital and we are getting

anxious when the WBC's will go down consistently. I did some reading on EGCG as

well and they certainly have so many good things to say about green tea. I will

see if we have it in health stores locally or maybe ask a friend who's in the US

right now to bring home some for us.

Take care, . Kisses to Matilda...

best,

Aimee

________________________________

From: d'Araille <darajek@...>

Sent: Sun, March 21, 2010 8:04:59 AM

Subject: [ ] hello again from sunny Philippines

Hi,

I'm sorry to hear about your daughter's diagnosis. I was myself diagnosed last

year in Oct when I was 22 weeks pregnant and first thing I had was

leaukapheresis treatment (blood wash) 3 times a week, I was told I will have to

go on interferon and have a c-section at 30 weeks. None of that happen and a

month ago on the 18th I gave birth to my 4th child (baby girl, Matilda, she

weighed 8 pounds and 2 ounces) at home on my own (so called freebirth - no

midwife present). It's a long story already but just to make it short here, as

you can imagine the CML diagnosis was a shock and we wanted to know everything

about CML and what are the options in pregnancy. We came across medical articles

on possible curative effects of green tea (EGCG in it to be precise) and I

started drinking 3 to 4 strong brews of green tea brewed straight from the

leaves. It had same effect on my blood as medical alternative offered to your

daughter. It brought my WBC count down to 10.2

at the lowest. I'm still refusing gleevec as I want to breastfeed my daughter

for as long as possible and keep my WBC count down by drinking green tea. I'm

not a doctor and can't tell you what you should do in your situation, I'm just

letting you know what happened to me. Hope it will all go well for your precious

girl.

http://onephotograp haday.wordpress. com/pregnancy- and-cml/

From: Aimee Lou J Alvarez

Sent: Saturday, March 20, 2010 5:04 PM

groups (DOT) com

Subject: [ ]

Hello everyone,

Thank you so so much for all the warm welcome. All your responses gave me much

hope and strength. I was so moved by how a lot of you cared so much to welcome

me give a reply. I truly appreciate it. Thank you, thank you....

I have been quite swamped with a lot of things and couldn't find the time to

compose a sensible email right away. I've been having nasty migraines too that

would come and go. What a bummer! But I'm thankful now though that school has

ended for my kids (here in the Philippines at least) so I have more time in my

hands to get on and find out more about CML. This support group is heaven sent

with your great insights and experiences.

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

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

that, she is feeling good that you wouldn't think she has CML at first glance.

It's a great blessing for her dad and I to see her so alive and in great spirits

every single day. She was itching to go back to school even but we have decided

to make her file a leave of absence from her studies.

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. Consequently, her

hemoglobin count and RBC are also low. But she remains emotionally strong,

really.

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.

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

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

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?

Forgive me if my questions seem shallow. I've these things in my head to ask her

oncologist/ hematologist but they all just go away when we're at his office. I

guess I'm still in the process of taking things in with such slow pace here but

as a mother, I hope you understand why I'm still all frazzled.

Anyway, maybe you've heard this already, but my daughter has been singing this a

lot: Just Stand Up. Just wanted to share this beautiful song for everyone who's

going through the big C. It has made me cry but it uplifted my spirits as well.

Maybe you'd like to hear it too. I especially love the lines:

If the mind keeps thinking You've had enough But the heart keeps telling you

Don't give up

Who are we to be questioning

Wondering what is what?

Don't give up

Through it all

Just stand up.

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....

and know that I am praying for all of you here, too. I hope to hear from you

soon.

all the high hopes and love,

Aimee