Re: hi, i need your help,, please

January 31, 2009

Hi Jeanny,

I guess we were waiting for someone else to ans you. We were not ignoring

you. I don't know where to start? When was she diagnosed and what did

they tell you at that time. I will tell you a little bit about what I went

through.

I was diagnosed almost 5 years ago. The first thing they did to me was a

Bone Marrow Biopsy. That showed my Fish and something else ( I cant even

remember) results. Then depending on those results--they put me on Gleevec

--which I did not tollerate and in the mean time they keep doing

CBC(complete blood count) testing to see how your blood is doing.

It was a long time before I had a PCR test done. I went through at least

10 bone marrow tests and I was at 0% then they started just doing PCR

tests. And I finally reach PCRU which means PCR undetected. And in the

mean time I went off Gleevec on to Sprycel then off Sprycel on to Tasigna

which has been working very well for me.

I hope someone jumps in here and gives you more information. Lottie or

Zavie are great at it.

I just wanted you to know that we are thinking about you.

> hi again,, no one have answer me, I have ask the other day, if you could

> help me, my daughter natasha is going to see her specialist next week,

> you guys know a lot about blood and stuff, so im sure you have all the

> question I should ask her doctor, could you please let me know what I

> should ask , like I herd all of you talk about fish and ect,,,,,,,, I was

> on a big depression for over a year now , and I havent talk much or ask

> much question about this, could you please let me know what you think and

> what should we ask , im jeanny, the mother of a 20 year old with

> leukemia,, cml

>

> From: letitbe@...

> Sent: Saturday, January 31, 2009 8:56 AM

>

> Subject: Re: [ ] Thoracentesis for Pleural Effusion

>

> thanks everyone for sharing, I was wondering, had a feeling it was like it

> is, the how you know part. I had developed fluid around the heart once, it

> was painful to breath, I cannot even remember how that was treated, but it

> was

> not drained, I recall that.

>

> cheers,chris

> **************A Good Credit Score is 700 or Above. See yours in just 2

> easy

> steps!

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January 31, 2009

Hi Jeanny,

I would suggest that you get copies of Natasha's test results. We

can help you understand what they mean and from there we will be able

to tell you what questions you should be asking.

For starters though, I would ask if they are monitoring her liver,

kidneys and electrolytes and if so, how often.

FISH tests are pretty much useless these days but she should be

having PCR tests every three months. You might also want to know

where her PCR tests are going. If possible, you should try to have

them sent to Toronto as they have the best lab that I know of in all

of Ontario. Zavie and I both send our blood there.

Take care,

Tracey

>

> hi again,, no one have answer me, I have ask the other day, if you

could help me, my daughter natasha is going to see her specialist

next week, you guys know a lot about blood and stuff, so im sure you

have all the question I should ask her doctor, could you please let

me know what I should ask , like I herd all of you talk about fish

and ect,,,,,,,, I was on a big depression for over a year now , and I

havent talk much or ask much question about this, could you please

let me know what you think and what should we ask , im jeanny, the

mother of a 20 year old with leukemia,, cml

>

> From: letitbe@...

> Sent: Saturday, January 31, 2009 8:56 AM

>

> Subject: Re: [ ] Thoracentesis for Pleural Effusion

>

> thanks everyone for sharing, I was wondering, had a feeling it was

like it

> is, the how you know part. I had developed fluid around the heart

once, it

> was painful to breath, I cannot even remember how that was treated,

but it was

> not drained, I recall that.

>

> cheers,chris

> **************A Good Credit Score is 700 or Above. See yours in

just 2 easy

> steps!

> (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?

redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072%

26hmpgID=62%26bcd=De

> cemailfooterNO62)

>

January 31, 2009

Hi Jeanny, it's the weekend, I'm sure you will get answers to your questions by

Mon. lots of the group are busy weekends, and Zavie is out of town. When I want

to know something I ask him or Tracey. I'm not a good one to tell you what you

should ask, details don't stick with me. Has he done a bone marrow biopsy on

Natasha? How often do you see him and how often do you get her labs done? I

get labs done every week, and a bone marrow biopsy every 12 weeks, but that is

because I am in a trial for a new drug. Jeanny this is a great time for people

with CML, just a few years ago it was a death sentence, today it is considered

chronic, and we can live with it for many years due to the new drugs. Please

try not to worry, and just ask your doctor if Natash has all the necessary

testing and does she show improvement. Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/

U.of Michigan 06/02/08 - CCR ( in 4 weeks)

From: jeanny <jeanny-f@...>

Subject: [ ] hi, i need your help,, please

Date: Saturday, January 31, 2009, 5:08 PM

hi again,, no one have answer me, I have ask the other day, if you

could help me, my daughter natasha is going to see her specialist next week,

you guys know a lot about blood and stuff, so im sure you have all the question

I should ask her doctor, could you please let me know what I should ask , like I

herd all of you talk about fish and ect,,,,,,,, I was on a big depression for

over a year now , and I havent talk much or ask much question about this, could

you please let me know what you think and what should we ask , im jeanny, the

mother of a 20 year old with leukemia,, cml

From: letitbeaol (DOT) com

Sent: Saturday, January 31, 2009 8:56 AM

groups (DOT) com

Subject: Re: [ ] Thoracentesis for Pleural Effusion

thanks everyone for sharing, I was wondering, had a feeling it was like it

is, the how you know part. I had developed fluid around the heart once, it

was painful to breath, I cannot even remember how that was treated, but it was

not drained, I recall that.

cheers,chris

************ **A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola. com/promoclk/ 100000075x121585 5013x1201028747/ aol?redir=

http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID=

62%26bcd= De

cemailfooterNO62)

February 1, 2009

Jeanny, I know they did a bone marrow biopsy on Granny, after a surgeon saw that

her blood counts were out of wack. She was going in to have surgery . The cancer

doctor never tells us these terms like fish, etc. She has the biopsy done ever

so often and then they let us know if she is still in remission. So far she has

been. I hate that I can't help you more.

Re: [ ] Thoracentesis for Pleural Effusion

thanks everyone for sharing, I was wondering, had a feeling it was like it

is, the how you know part. I had developed fluid around the heart once, it

was painful to breath, I cannot even remember how that was treated, but it was

not drained, I recall that.

cheers,chris

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

February 1, 2009

Hi ,

I was dxed in April of 04, and have been on 400 mil of Gleevec since. I am

in complete remission, though I do suffer some moderate side effects from

the Gleevec. Chronic Bone Pain, Fatigue, some nausea, and a bit of

depression which is disease and non disease related, but all these side

effects are managed by other medications. Though I have not stayed on

Anti-depressants because for me they did not seem to work..lol.

Not everyone can tolerate Gleevec. But many can, and some have more or less

side effects then others. Some on Gleevec suffer little to no side effects I

do not know what her treatment is but there are other drugs to control the

disease out there, though Gleevec was and to me the best way to control it.

I get a Bone Marrow Biposy once a year, and now I only get blood work every

three months, when I used to have to get it every month. So as others have

mentioned this is not a death sentence as it used to be. Having said that I

can only say from my personal experience it can change a person in a

profound way. Depending on the side effects she has, if she is not acting

like she did before becoming ill it is because she is not the same person.

Some people are lucky enough, strong enough, what have you, that CML barely

effects them at all. I hope your daughter is like that, if not I hope things

get better. They do get better. Despite the fact it is a Chronic disease

does not mean we may not feel well. We have allot of people very

knowledgeable about blood counts and such, but we also have people here

willing to help aside from the test and stuff.

On Sat, Jan 31, 2009 at 7:21 PM, Kristie Skipper <skipper3@...>wrote:

> Jeanny, I know they did a bone marrow biopsy on Granny, after a surgeon

> saw that her blood counts were out of wack. She was going in to have surgery

> . The cancer doctor never tells us these terms like fish, etc. She has the

> biopsy done ever so often and then they let us know if she is still in

> remission. So far she has been. I hate that I can't help you more.

>

> Re: [ ] Thoracentesis for Pleural Effusion

>

> thanks everyone for sharing, I was wondering, had a feeling it was like it

> is, the how you know part. I had developed fluid around the heart once, it

> was painful to breath, I cannot even remember how that was treated, but it

> was

> not drained, I recall that.

>

> cheers,chris

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

>

> steps!

> (

>

http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://w\

ww.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

> cemailfooterNO62)

>

February 5, 2009

my husband is taking his gleevic for almost 4 years now and it did good to him,

thanks , good that he was adopted by a foundation here in the Philippines, if

not he would have been serious now because we cant afford his medications

before.................thanks really

From: Terry Dailey <terrydailey@...>

Subject: Re: [ ] hi, i need your help,, please

Date: Sunday, 1 February, 2009, 11:59 PM