RE: Hello (from a new member)

[Guest guest]

Hi Aimee,

Welcome to the club that nobody really wants to be a member of.

With the new modern drugs available for CML, your daughter can expect to

live a full and fruitful life.

The best advice I can give you is to get a CML specialist to treat your

daughter.

Don't let my signature scare you. After a while you will get to understand

the terms.

I have had CML for over 10 years. Today, all I do is take one pill a day and

cary on with my life.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

Tel in FL: 561-429-5507

_____

From: [mailto: ] On Behalf Of Aimee

Lou J Alvarez

Sent: March-09-10 12:22 AM

Subject: [ ] Hello (from a new member)

Hi everyone,

Good day. I'm Aimee from the Manila, Philippines.

Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2

girls), was diagnosed with CML- accelerated (now at chronic) phase. Like

everyone else here at the onset, our family has been so blown away and very

downhearted by the turn of events. We initially just went to her

Pediatrician that weekend to have a follow-up check why she was experiencing

edema in her ankles (on and off for 2 months) and her abdomen got somehow

distended (became evident to us in the last days of January). She was

admitted and was supposed to be worked up for suspected Nephritis but BOOM!

came the CML diagnosis a day after admission.

She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol,

and sultamicillin. She underwent BMA, where one of the 2 tests confirmed it

is CML. We're waiting for the result of the other one. She lost a lot of

weight during confinement with a week of nausea, vomiting and high fever.

We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no

pain, no discomfort, thank God. She's still on hydroxyurea and allopurinol.

She has weekly tests to monitor her blood statistics especially the WBC. She

started with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10).

Still very high but we're glad it is going down. Her oncologist/hematologist

already told us that Aia will be put on Glivec once her blood stats are more

ideal.

Being new here, (i joined over the weekend) there are a lot of CML jargons

and medical terms that I still do not understand but I find comfort knowing

we are not alone in this fight and seeing that a lot of you here have gone

more than 5 years and living normal lives gives my family strength and hope.

I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this

point. My husband does all the reading and research and just tells me what

is necessary to know. Hopefully I will be able to gain full understanding of

CML soonest. I've immersed myself in prayers and I'm holding on to my faith.

My daughter is on high spirits and keeps a very positive outlook. We hope we

can keep her feeling that way.

God bless all of you here...

all the high hopes and love,

Aimee Alvarez

Manila, Philippines

[Guest guest]

Aimee,

You are absolutely just where God wants you to be.  This is an awesome group of

people with TONS of information!! and some humor!!

It will get better and you  and yours have already come so far.  Just lurk

around and you will learn so much!!

God Bless You and Yours.

Jo-Dee

Tippecanoe, Ohio, USA

From: Aimee Lou J Alvarez <aimeelou_alvarez@...>

Subject: [ ] Hello (from a new member)

Date: Tuesday, March 9, 2010, 5:22 AM

 

Hi everyone,

Good day. I'm Aimee from the Manila, Philippines.

Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2 girls),

was diagnosed with CML- accelerated (now at chronic) phase. Like everyone else

here at the onset, our family has been so blown away and very downhearted by the

turn of events. We initially just went to her Pediatrician that weekend to have

a follow-up check why she was experiencing edema in her ankles (on and off for 2

months) and her abdomen got somehow distended (became evident to us in the last

days of January). She was admitted and was supposed to be worked up for

suspected Nephritis but BOOM! came the CML diagnosis a day after admission.

She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol, and

sultamicillin. She underwent BMA, where one of the 2 tests confirmed it is CML.

We're waiting for the result of the other one. She lost a lot of weight during

confinement with a week of nausea, vomiting and high fever.

We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no pain,

no discomfort, thank God. She's still on hydroxyurea and allopurinol. She has

weekly tests to monitor her blood statistics especially the WBC. She started

with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10). Still very high

but we're glad it is going down. Her oncologist/hematolo gist already told us

that Aia will be put on Glivec once her blood stats are more ideal.

Being new here, (i joined over the weekend) there are a lot of CML jargons and

medical terms that I still do not understand but I find comfort knowing we are

not alone in this fight and seeing that a lot of you here have gone more than 5

years and living normal lives gives my family strength and hope.

I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this point.

My husband does all the reading and research and just tells me what is necessary

to know. Hopefully I will be able to gain full understanding of CML soonest.

I've immersed myself in prayers and I'm holding on to my faith. My daughter is

on high spirits and keeps a very positive outlook. We hope we can keep her

feeling that way.

God bless all of you here...

all the high hopes and love,

Aimee Alvarez

Manila, Philippines

[Guest guest]

Hi Aimee,  your daughter is fortunate to be diagnosed with CML at this time of

new drugs.

Years ago when I was diagnosed, 15 years, we were given about 5 years to live. 

Today it is much different, and the majority of us live very normal lives and

don't even give CML a thought. It may take her some time to adjust to Glivec,

but once she does she will be just fine.  The main thing for you to do is go to

a CML expert, and he/she will tell you what to expect.  Glivec must be taken on

a full stomach, not a little snack.  This helps prevent nausea. You will get

used to all the terms, and don't be afraid to read up on it, CML is no different

than high blood pressure, or diabetes today, it is treated and we go on living

normal lives, for years and years.  Good luck, Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: Aimee Lou J Alvarez <aimeelou_alvarez@...>

Subject: [ ] Hello (from a new member)

Date: Tuesday, March 9, 2010, 12:22 AM

 

Hi everyone,

Good day. I'm Aimee from the Manila, Philippines.

Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2 girls),

was diagnosed with CML- accelerated (now at chronic) phase. Like everyone else

here at the onset, our family has been so blown away and very downhearted by the

turn of events. We initially just went to her Pediatrician that weekend to have

a follow-up check why she was experiencing edema in her ankles (on and off for 2

months) and her abdomen got somehow distended (became evident to us in the last

days of January). She was admitted and was supposed to be worked up for

suspected Nephritis but BOOM! came the CML diagnosis a day after admission.

She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol, and

sultamicillin. She underwent BMA, where one of the 2 tests confirmed it is CML.

We're waiting for the result of the other one. She lost a lot of weight during

confinement with a week of nausea, vomiting and high fever.

We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no pain,

no discomfort, thank God. She's still on hydroxyurea and allopurinol. She has

weekly tests to monitor her blood statistics especially the WBC. She started

with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10). Still very high

but we're glad it is going down. Her oncologist/hematolo gist already told us

that Aia will be put on Glivec once her blood stats are more ideal.

Being new here, (i joined over the weekend) there are a lot of CML jargons and

medical terms that I still do not understand but I find comfort knowing we are

not alone in this fight and seeing that a lot of you here have gone more than 5

years and living normal lives gives my family strength and hope.

I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this point.

My husband does all the reading and research and just tells me what is necessary

to know. Hopefully I will be able to gain full understanding of CML soonest.

I've immersed myself in prayers and I'm holding on to my faith. My daughter is

on high spirits and keeps a very positive outlook. We hope we can keep her

feeling that way.

God bless all of you here...

all the high hopes and love,

Aimee Alvarez

Manila, Philippines

[Guest guest]

Hi Aimee: So glad you chose to check out a support group. Just having the

faith and your daughter having a positive outlook will

be the first step to her getting to understand and do what she has to with her

CML. As you can see we have some long time CML people on here. With all the

latest that has been discovered for treatment will give your daughter a long

life. You will get to learn all the terms etc., but right now just be sure she

is seeing a CML Specialist like Zavie said. That is so important for proper

treatment. I am living with CML now for 11 years. The more you learn, the more

support you can give your daughter. She already has made progress from getting

into the Chronic Stage from the Accelerated stage.

Hope we hear from you and let us know how everything is going.

A.

>

> Hi everyone,

>

> Good day. I'm Aimee from the Manila, Philippines.

>

> Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2 girls),

was diagnosed with CML- accelerated (now at chronic) phase. Like everyone else

here at the onset, our family has been so blown away and very downhearted by the

turn of events. We initially just went to her Pediatrician that weekend to have

a follow-up check why she was experiencing edema in her ankles (on and off for 2

months) and her abdomen got somehow distended (became evident to us in the last

days of January). She was admitted and was supposed to be worked up for

suspected Nephritis but BOOM! came the CML diagnosis a day after admission.

>

> She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol, and

sultamicillin. She underwent BMA, where one of the 2 tests confirmed it is CML.

We're waiting for the result of the other one. She lost a lot of weight during

confinement with a week of nausea, vomiting and high fever.

>

> We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no pain,

no discomfort, thank God. She's still on hydroxyurea and allopurinol. She has

weekly tests to monitor her blood statistics especially the WBC. She started

with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10). Still very high

but we're glad it is going down. Her oncologist/hematologist already told us

that Aia will be put on Glivec once her blood stats are more ideal.

>

> Being new here, (i joined over the weekend) there are a lot of CML jargons

and medical terms that I still do not understand but I find comfort knowing we

are not alone in this fight and seeing that a lot of you here have gone more

than 5 years and living normal lives gives my family strength and hope.

>

> I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this point.

My husband does all the reading and research and just tells me what is necessary

to know. Hopefully I will be able to gain full understanding of CML soonest.

I've immersed myself in prayers and I'm holding on to my faith. My daughter is

on high spirits and keeps a very positive outlook. We hope we can keep her

feeling that way.

>

> God bless all of you here...

>

> all the high hopes and love,

>

> Aimee Alvarez

> Manila, Philippines

>

>

>

>

>

[Guest guest]

good day ma'am,

 

we are also from Cebu and my husband was also diagnosed of CML last 2002 and I

am happy to tell you that he is living a normal life ,thanks God and he is on

Glivec until now. Please tell your daughter nothing to worry about . What's

important is our all-out support to them.

 

God Bless and regards!

 

 

Virginia 

From: Aimee Lou J Alvarez <aimeelou_alvarez@...>

Subject: [ ] Hello (from a new member)

Date: Tuesday, 9 March, 2010, 1:22 PM

 

Hi everyone,

Good day. I'm Aimee from the Manila, Philippines.

Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2 girls),

was diagnosed with CML- accelerated (now at chronic) phase. Like everyone else

here at the onset, our family has been so blown away and very downhearted by the

turn of events. We initially just went to her Pediatrician that weekend to have

a follow-up check why she was experiencing edema in her ankles (on and off for 2

months) and her abdomen got somehow distended (became evident to us in the last

days of January). She was admitted and was supposed to be worked up for

suspected Nephritis but BOOM! came the CML diagnosis a day after admission.

She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol, and

sultamicillin. She underwent BMA, where one of the 2 tests confirmed it is CML.

We're waiting for the result of the other one. She lost a lot of weight during

confinement with a week of nausea, vomiting and high fever.

We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no pain,

no discomfort, thank God. She's still on hydroxyurea and allopurinol. She has

weekly tests to monitor her blood statistics especially the WBC. She started

with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10). Still very high

but we're glad it is going down. Her oncologist/hematolo gist already told us

that Aia will be put on Glivec once her blood stats are more ideal.

Being new here, (i joined over the weekend) there are a lot of CML jargons and

medical terms that I still do not understand but I find comfort knowing we are

not alone in this fight and seeing that a lot of you here have gone more than 5

years and living normal lives gives my family strength and hope.

I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this point.

My husband does all the reading and research and just tells me what is necessary

to know. Hopefully I will be able to gain full understanding of CML soonest.

I've immersed myself in prayers and I'm holding on to my faith. My daughter is

on high spirits and keeps a very positive outlook. We hope we can keep her

feeling that way.

God bless all of you here...

all the high hopes and love,

Aimee Alvarez

Manila, Philippines

[Guest guest]

Hi Aimee--

Don't be downhearted! I frequently tell myself that of all the cancers to be

diagnosed, if such a thing is possible, this is the BEST one to be diagnosed

with! That is because there is wonderful treatment available and a marvelous

supportive network of on-line friends ready to hold you up and keep you steady

as you travel this new pathway. Tell your daughter not to be afraid, either.

It is a frightening and overwhelming diagnosis at first, but it gets better, and

she will feel good and soon be back to living her life very normally. I will

pray for you both--

Vicki (I've had CML for 3+ years now, on Gleevec 600 mg per day)

>

>

> From: Aimee Lou J Alvarez <aimeelou_alvarez@...>

> Subject: [ ] Hello (from a new member)

>

> Date: Tuesday, 9 March, 2010, 1:22 PM

>

>

>  

>

>

>

> Hi everyone,

>

> Good day. I'm Aimee from the Manila, Philippines.

>

> Last February 7, 2010, Aia, our 18 year old daughter (eldest of our 2 girls),

was diagnosed with CML- accelerated (now at chronic) phase. Like everyone else

here at the onset, our family has been so blown away and very downhearted by the

turn of events. We initially just went to her Pediatrician that weekend to have

a follow-up check why she was experiencing edema in her ankles (on and off for 2

months) and her abdomen got somehow distended (became evident to us in the last

days of January). She was admitted and was supposed to be worked up for

suspected Nephritis but BOOM! came the CML diagnosis a day after admission.

>

> She spent 2 weeks at the hospital and was put on hydroxyurea, allopurinol, and

sultamicillin. She underwent BMA, where one of the 2 tests confirmed it is CML.

We're waiting for the result of the other one. She lost a lot of weight during

confinement with a week of nausea, vomiting and high fever.

>

> We're home now and she's feeling and looking much better and moving about

normally but she had to refrain from school to avoid meantime. She has no pain,

no discomfort, thank God. She's still on hydroxyurea and allopurinol. She has

weekly tests to monitor her blood statistics especially the WBC. She started

with 343,000K (2/06/10) and as of now it's at 78,000K (3/04/10). Still very high

but we're glad it is going down. Her oncologist/hematolo gist already told us

that Aia will be put on Glivec once her blood stats are more ideal.

>

> Being new here, (i joined over the weekend) there are a lot of CML jargons and

medical terms that I still do not understand but I find comfort knowing we are

not alone in this fight and seeing that a lot of you here have gone more than 5

years and living normal lives gives my family strength and hope.

>

> I still have so much to say and ask but I don't know where to start. To be

honest, I can't even bring myself to read much on CML- maybe not at this point.

My husband does all the reading and research and just tells me what is necessary

to know. Hopefully I will be able to gain full understanding of CML soonest.

I've immersed myself in prayers and I'm holding on to my faith. My daughter is

on high spirits and keeps a very positive outlook. We hope we can keep her

feeling that way.

>

> God bless all of you here...

>

> all the high hopes and love,

>

> Aimee Alvarez

> Manila, Philippines

>

>