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Thanks , I have called twice and been told there are no results yet and when

they do come in they must be triaged before they decide what docto to send me

to. Have only seen my family doctor and the hematologist that did my bone marrow

biopsy . He said I have CML but that he has to do a biopsy to confirm that and

some philadelphia chromosone thing . Thanks for the info. Eva

@...: onthewtr@...: Sun, 9 Mar 2008

09:44:16 -0700Subject: RE: [ ] Hi

Call your doctor. You should have heard something now.. =don't be afraid. Weare

all here for you and most of us are doing so well!!!!Sharon_____ From:

[mailto: ] On Behalf Ofevaob365Sent:

Sunday, March 09, 2008 7:49 AM@...: [ ] HiJust

diagnosed!! Dont understand anything ...but scared out of my mind . Had biopsy

and now no word from anyone about anything for 2 weeks. The waiting and not

understanding what is going on is driving my family and I crazy. Hope to hear

something soon.

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@...: evaob365@...: Sun, 9 Mar 2008 15:51:15

-0400Subject: RE: [ ] Hi

Thanks , I have called twice and been told there are no results yet and when

they do come in they must be triaged before they decide what docto to send me

to. Have only seen my family doctor and the hematologist that did my bone marrow

biopsy . He said I have CML but that he has to do a biopsy to confirm that and

some philadelphia chromosone thing . Thanks for the info. EvaTo:

@...: onthewtr@...: Sun, 9 Mar 2008 09:44:16

-0700Subject: RE: [ ] HiCall your doctor. You should have heard something

now.. =don't be afraid. Weare all here for you and most of us are doing so

well!!!!Sharon_____ From: [mailto: ] On

Behalf Ofevaob365Sent: Sunday, March 09, 2008 7:49 AMTo:

@...: [ ] HiJust diagnosed!! Dont understand anything

....but scared out of my mind . Had biopsy and now no word from anyone about

anything for 2 weeks. The waiting and not understanding what is going on is

driving my family and I crazy. Hope to hear something soon.[Non-text portions of

this message have been removed]

__________________________________________________________Like solving puzzles?

Then you'll love Flexicon! Play now!http://g.msn.ca/ca55/213[Non-text portions

of this message have been removed]

_________________________________________________________________

At a loss for words? Find them by playing Seekadoo! Play now!

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I've been on 400 mg of Gleevec since March 27, 2001.

Zavie

_____

From: [mailto: ] On Behalf Of

seloew12

Sent: March 9, 2008 3:42 PM

Subject: Re: [ ] Re: Hi

Hi Zazz,

I just realized I never knew you had been on 400 mg Gleevec all this time.

When it works right it really works right! So happy something has gone well

for you. I know for sure of one other person who's still on 4-- mg and has

not had to increase dosage or change drugs.

Hooray for you!

L

[ ] Re: Hi

Hi,

Don't be afraid. Lab tests can take a long time, depending on the

lab. I think that mine, almost 8 years ago, took 2 weeks.

I've done well on 400 mg. Gleevec since June, 2001. I've had minimal

side-effects.

Just wanted to welcome you to the group and you'll learn a lot here!

Take care,

Zazzy

>

> Just diagnosed!! Dont understand anything ...but scared out of my

> mind . Had biopsy and now no word from anyone about anything for 2

> weeks. The waiting and not understanding what is going on is

driving my

> family and I crazy. Hope to hear something soon.

>

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Thanks , thats encouraging. Take care. Evaob

@...: onthewtr@...: Sun, 9 Mar 2008

09:44:16 -0700Subject: RE: [ ] Hi

Call your doctor. You should have heard something now.. =don't be afraid. Weare

all here for you and most of us are doing so well!!!!Sharon_____ From:

[mailto: ] On Behalf Ofevaob365Sent:

Sunday, March 09, 2008 7:49 AM@...: [ ] HiJust

diagnosed!! Dont understand anything ...but scared out of my mind . Had biopsy

and now no word from anyone about anything for 2 weeks. The waiting and not

understanding what is going on is driving my family and I crazy. Hope to hear

something soon.

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Hi Eva,

Bone marrow biopsy results do take some time to come back. I once had

to wait over 2 months for results which I found deplorable. I think a

reasonable wait would be about 2 weeks though.

Most doctors do know the patient has CML before the biopsy results come

back. The biopsy is like the rubber stamp. When I questioned my

doctor how he could be so sure before the confirmation was made with

the biopsy he said " if it looks like a duck and quacks like a duck, it

usually is a duck " .

We've all walked in your shoes and can tell you now from hindsight,

that things do get better. Try to relax a bit and know that you will

be ok. Your life will have a different focus for a while but you'll be

fine and you'll most likely be able to resume a normal lifestyle

(whatever that means) once you settle into things.

Take care,

Tracey

dx Jan 2002

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Hi Eva - that was me last August after being told on my 50th birthday I had

CML. It seems like a long time ago now and is a crazy period, but there is a

light at the end of the tunnel and this group has been absolutely fantastic

supporting me along the way. I had some time off work due to side effects

from Glivec and struggled to work full time, but I did and am having no real

problems now except for my lovely puffy eyes. I certainly don't have the

energy levels pre CML, but that is still improving too.

It takes your head awhile to get round everything! When I had my BMB mid

August, I went back to my haem/t 2 weeks later and got prescribed Glivec,

then had to wait for 4 weeks for my wonder drug to come as had to get

special permission to use it. It all takes a little while. Did your

specialist set another date for you to see him/her?

Regards,

in Australia

Dx 25/07/07

Glivec 400mg since 29/09/07

2.6 log reduction Jan 08

#1149 in Zavie's Zero Club

_____

From: [mailto: ] On Behalf Of

evaob365

Sent: Monday, 10 March 2008 1:49 AM

Subject: [ ] Hi

Just diagnosed!! Dont understand anything ...but scared out of my

mind . Had biopsy and now no word from anyone about anything for 2

weeks. The waiting and not understanding what is going on is driving my

family and I crazy. Hope to hear something soon.

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We have all been where you are and that is absolutely normal to know that

your life has and will change so dramatically but believe it or not some of

us have had cml change our lives for the good. '

My story:

Diagnosed at age 35 5-24-2000. Not eligible for any trials at that time I

chose to stay on interferon and ARC for one year while we all waited for

Gleevec to be approved. After Gleevec was approved I was on it for about 60

days before becoming PCRU which means that there were no bad cells detected.

I have remained PCRU to date.

It is natural and normal to be afraid but the good news is you have not only

found a wonderful support group here, but there are many drugs in trial

right now and several already approved when previously there was pretty much

just a few things that really were nothing like the treatment we have today.

Honestly, I am living an almost normal life with the exception of a few side

effects that I have learned to adjust to.

Keep coming back here you will learn a lot and keep a positive attitude

with all the wonderful support we have here.

ez

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Hi , Thankyou for your encouraging words. Eva

@...: lmartinez@...: Mon, 10 Mar 2008 12:13:31

-0400Subject: [ ] Re:Hi

We have all been where you are and that is absolutely normal to know thatyour

life has and will change so dramatically but believe it or not some ofus have

had cml change our lives for the good. 'My story: Diagnosed at age 35 5-24-2000.

Not eligible for any trials at that time Ichose to stay on interferon and ARC

for one year while we all waited forGleevec to be approved. After Gleevec was

approved I was on it for about 60days before becoming PCRU which means that

there were no bad cells detected.I have remained PCRU to date. It is natural and

normal to be afraid but the good news is you have not onlyfound a wonderful

support group here, but there are many drugs in trialright now and several

already approved when previously there was pretty muchjust a few things that

really were nothing like the treatment we have today.Honestly, I am living an

almost normal life with the exception of a few sideeffects that I have learned

to adjust to. Keep coming back here you will learn a lot and keep a positive

attitudewith all the wonderful support we have here. ez [Non-text

portions of this message have been removed]

_________________________________________________________________

Create a handy button so your friends can add U to their buddy list. Try it now!

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Hi , welcome aboard! I'm a newbie too, love this group, Bobby

gina demase <ginademase@...> wrote: hey guys, i just joined. i

see lottie, zavie, bobby. i think richard

rockefeller is on here too? glad to be a part of this group, love you

guys. love you, gina demase xoxoxo

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

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Hi ,

Nice to see you here! Like Bobby, I'm pretty new to this group also.

Take care,

Zazz

[ ] hi

hey guys, i just joined. i see lottie, zavie, bobby. i think richard

rockefeller is on here too? glad to be a part of this group, love you

guys. love you, gina demase xoxoxo

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Hi ,

Love you too.

Its been a long time since we chatted.

For the newbies, is an oldtimer. # 334 in the Zero Club.

Zavie.

Zavie (age 69)

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

3.2 log reduction Jun/07

3.6 log reduction Sep/07

3.5 log reduction Feb/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of gina

demase

Sent: March 17, 2008 4:38 AM

Subject: [ ] hi

hey guys, i just joined. i see lottie, zavie, bobby. i think richard

rockefeller is on here too? glad to be a part of this group, love you

guys. love you, gina demase xoxoxo

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Hi . I'm here, too. Nice to see your name on the List.

Cheers,

L

[ ] hi

hey guys, i just joined. i see lottie, zavie, bobby. i think richard

rockefeller is on here too? glad to be a part of this group, love you

guys. love you, gina demase xoxoxo

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Hi

So we meet again ! Zavie, so good to see you here. I wondered where

you were! I am not near as " old' an oldtimer... but does #401 in the

OFFICIAL ZERO CLUB count my friend?

Be well all of you and I will post more info this afternoon.... to

update this group on my history and make new friends abnd support old

ones!!

Barb

>

> Hi ,

>

> Love you too.

>

> Its been a long time since we chatted.

>

> For the newbies, is an oldtimer. # 334 in the Zero Club.

>

> Zavie.

>

> Zavie (age 69)

> 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

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf Of

gina

> demase

> Sent: March 17, 2008 4:38 AM

>

> Subject: [ ] hi

>

> hey guys, i just joined. i see lottie, zavie, bobby. i think richard

> rockefeller is on here too? glad to be a part of this group, love you

> guys. love you, gina demase xoxoxo

>

>

>

>

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oh my gosh, lisa, i remember you, dejavu. i'm great. been pcru since

1/03. just had all my tests done, all good, so we are vacationing in

clearwater beach 3.28 to 4.2, cant wait. chicago is cold, so looking

forward to some sunshine, lottie is the sunshine here though, so i'm

thankful for that. what a warm welcome from you all, i feel like i'm

visiting home from being away a long time, love and blessings to you

all and happy st pattys day. love you, gina demase xoxoxox

>

> , where have you been and how are you?

>

> Hope your doing well:-)

>

> Nice to see you here.

>

>

>

>

>

> ez

>

> Dx 5-2000

>

> Tampa Florida

>

> PCRU

>

>

>

>

>

>

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Hey Barb!

It's Loewenkamp here. So happy to see you back again, too. I joined up

again a few months ago and have found some great people here. Looking forward

to your post later today.

I am PCRU and have been since a couple of months after I started on Sprycel

which was in 2006. I live in Virginia now but still miss the Southern

California weather and a few other things and people. But, this is where I

landed in 2004 and it's definitely an interesting place to be --9miles outside

DC which is just about 15 minutes by Metro.

It's so nice to see others showing up now and then. Guess maybe Zavie and

Tracey are magnets!

Cheers!

L

[ ] hi

>

> hey guys, i just joined. i see lottie, zavie, bobby. i think richard

> rockefeller is on here too? glad to be a part of this group, love you

> guys. love you, gina demase xoxoxo

>

>

>

>

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Hi, . Nice to see you here!

>

> hey guys, i just joined. i see lottie, zavie, bobby. i think richard

> rockefeller is on here too? glad to be a part of this group, love you

> guys. love you, gina demase xoxoxo

>

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Dear Zavie,

Do I rank as an oldtimer?

Bob , Granger, Indiana

Zavie # 54

>

> Hi ,

>

> Love you too.

>

> Its been a long time since we chatted.

>

> For the newbies, is an oldtimer. # 334 in the Zero Club.

>

> Zavie.

>

> Zavie (age 69)

> 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

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

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Bob ! are you saying you're #54?? Boy, that does make you an old one !!

Bobby

<bob-stewart@...> wrote: Dear Zavie,

Do I rank as an oldtimer?

Bob , Granger, Indiana

Zavie # 54

>

> Hi ,

>

> Love you too.

>

> Its been a long time since we chatted.

>

> For the newbies, is an oldtimer. # 334 in the Zero Club.

>

> Zavie.

>

> Zavie (age 69)

> 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

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

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

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hi Bob

i am proud to be your neighbor. i am number 50 on Zavie's zero list. i guess you

are one of the first that deserves to be named an oldtimer, but i am not far

away behind.

it is good to read masages from old friends like barbara, gina and others. i am

sorry for not posting on the list, but i read the massages and i speak quite

regularly with Zavie, so i keep updated.

best regards to all

giora

Israel

Re: [ ] hi

Dear Zavie,

Do I rank as an oldtimer?

Bob , Granger, Indiana

Zavie # 54

>

> Hi ,

>

> Love you too.

>

> Its been a long time since we chatted.

>

> For the newbies, is an oldtimer. # 334 in the Zero Club.

>

> Zavie.

>

> Zavie (age 69)

> 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

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

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Hi Bob,

You certainly do.

Those days are still so vivid to me. You and all the other Zeros gave me

HOPE that I too would reach Zero.

Zavie

Zavie (age 69)

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

3.2 log reduction Jun/07

3.6 log reduction Sep/07

3.5 log reduction Feb/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: March 17, 2008 3:17 PM

Subject: Re: [ ] hi

Dear Zavie,

Do I rank as an oldtimer?

Bob , Granger, Indiana

Zavie # 54

>

> Hi ,

>

> Love you too.

>

> Its been a long time since we chatted.

>

> For the newbies, is an oldtimer. # 334 in the Zero Club.

>

> Zavie.

>

> Zavie (age 69)

> 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

> 3.2 log reduction Jun/07

> 3.6 log reduction Sep/07

> 3.5 log reduction Feb/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

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  • 2 weeks later...
Guest guest

Wow Zazzy--I am awe-struck! You are fabulous!

Will you come to my house?! LOL!!

Vicki

>

> Sorry for my absence. We've been in a remodeling project that has

> caused nothing but headaches. I've been trying to read the messages

> daily, but haven't had time so far to sit down and actually reply.

>

> In the middle of all of the above, my dear friend in Sweden, who

had

> a heart transplant at 25 seven years ago, has been in the hospital

> with a fracture in her back. She has osteoporosis due to the anti-

> rejection meds that she takes. She was walking down the steps in

> their apartment building and lost her balance. She hit the stair

> railing with her back, then developed pneumonia from not breathing

> deeply enough, sinusitis and then an ear infection. She is home now

> and feeling better everyday.

>

> My two sons, the youngest's girlfriend and their two dogs were here

> for my birthday over the weekend. On the way here they saw a small

> dog that had been abandoned on the side of the road, so along she

> came too. Throw in my little Jack , our cat, fish and

bird...

> well it was a very full house! It was a wonderful weekend though!

>

> The project from hell (our bathroom) is still chugging along. In

the

> middle of demolition we found that we had some rotted studs and

> headers on the outside wall to deal with, so that had to be taken

> care of first. We have done the work ourselves... contractors are

> very busy in this area. I've always been a tinkerer myself, so I

> found this challenge stimulating. My husband didn't LOL.

>

> We are in the home stretch, I will start tiling the tub enclosure

> this week and then it is on to the floor, which will also be tiled.

> Think we will take a few weeks off before tackling the floors in

the

> rest of the house though.

>

> Take care,

> Zazzy

>

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  • 2 months later...
Guest guest

i had a health check up done and in the report they said i have 2

stones in my gall bladder. since it doesnt pain as yet the doc said

its my option whether i want to go in for a surgery. i dont want the

pain to start i eat meals more frequently now try to eat proper food

not junk food and avoid chips. i want to know how long can one stay

without being operated it it wise

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Guest guest

that means you're asymptomatic. there are cases when they only found out a

person had gallstones during autopsy. so that's good for you if it doesn't

bother you unlike me who is symptomatic

it's also a good thing that you eat the right kind of food to prevent

having a GB attack.

best of health to you.

" riakapoor28 "

<riakapoor28@yaho

o.co.in> To

Sent by: gallstones

gallstones@g cc

roups.com

Subject

hi

06/22/2008 12:13

PM

Please respond to

gallstones@g

roups.com

i had a health check up done and in the report they said i have 2

stones in my gall bladder. since it doesnt pain as yet the doc said

its my option whether i want to go in for a surgery. i dont want the

pain to start i eat meals more frequently now try to eat proper food

not junk food and avoid chips. i want to know how long can one stay

without being operated it it wise

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Guest guest

i'm keeping my gallbladder. I just recently talked to a colleague of mine

who also has gallstones and she said that it was 7 years ago that she was

diagnosed and she didn't had a surgery BUT what she did was change her

eating habit (ate the right kinds of food and avoid the ones that will

cause an attack). She still has her gallbladder and was able to manage the

symptoms. However I don't know if the stones she had shrunk or grew after 7

years. She was just able to avoid having an attack. That I still have to

find out. She said she's avoiding cheese specially mozarella because she

can't digest it and perhaps the calcium in cheese contributes to the

calcification of the stones. I hope I'm right about this.

The symptoms meant that I'm doing something wrong to my body like lack of

exercise, lack of fresh or raw fruit and veggies, too much processed food,

too much cholesterol rich foods, skipping breakfast, and etc. I don't smoke

and I have given up alchohol (casual drinker) several years ago but still

got some stones. The gallbladder attacks are more like a alarm going off

signalling something is wrong with my body.

I'm trying to get proper nutrition now and will research further on natural

ways to prevent / disolve or atleast reduce my stones.

I must admit I'm no expert on this matter that's why I joined this group to

learn from others.

there's this saying " If it ain't broke don't fix it " but i'd like to add to

this " if you don't want it to break (your body) do some preventive

maintenance "

=)

ria kapoor

<riakapoor28@yaho

o.co.in> To

Sent by: gallstones

gallstones@g cc

roups.com

Subject

Re: hi

06/24/2008 09:56

PM

Please respond to

gallstones@g

roups.com

hey thanks for that. if you are having symptoms are you planning to go in for a

surgery

chester_tan@... wrote:

that means you're asymptomatic. there are cases when they only found out a

person had gallstones during autopsy. so that's good for you if it doesn't

bother you unlike me who is symptomatic

it's also a good thing that you eat the right kind of food to prevent

having a GB attack.

best of health to you.

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