Response

[Guest guest]

Dear Anne,

Yes I would appricaite that. I can need to keep my intake lower than

70 but can probably adapt the recepie some. Thanks for the

cornstartch tip.

Rebeca,

The two (three) vendors I found that were lower in the GI than the

others were

-Breads from (www.glutenfevolution.com) their bread tasted

great and was made up of tapioca, arrowroot,chickpea,pinto bean,

navy, bean, mille, montina, etc.. not the usual corn and rice

-Heartlands www.heartlands.com

which is bean pasta

also

-Orgran

have stoneground pasta which is buckwheat, rice and millet

the last issue of living without had a great section on resoures. I

found two online but one was to confussing to figure out let you

know if I do and the other wanted upto $30 for a loaf of bread, but

they had every non-gluten flour type. But cant seem to find the site

now to give you sorry. Will share any good recepies I come acros.

Kalinda

[Guest guest]

Hi, & a,

Someone should keep a record book of all those ignorant remarks!

I've gotten my share of those same remarks, but my " favorite " one

has to be, " Wow! You speak such good English for a foreigner! How

long did it take you to learn? " I was so stunned at that one (I've

lived here in the USA all my life), I just stood there with my mouth

open, and I didn't even have a good comeback line

Anyone out there have a good one for this?

It was nice to hear about both of your careers! Best wishes to both

of you!

Loka

> >

> > Hi my name is . I am 22 and attend the University of Iowa

as

> a journalism and art

> > double major. My emphasis of study is photography. I have

BPES, I

> have had lots of

> > surgeries, all done by Rick in Salt Lake City, Utah. I

> wonder what has driven me

> > to be passionate about photography and I can't help but connect

it

> to the way I see the

> > world, through my eyes. Sometimes I am scared that one day I

won't

> be able to shoot

> > photos anymore. My eyes water alot, and I am always wiping at

> them. All my life people

> > have asked me if I was asian....or if I was tired...even if I

was

> high....All of these have made

> > me tough and sometimes I a little short with people. Sometimes

I

> ignore it, but

> > sometimes it really makes me mad. I would never go up to a

> complete stranger and ask

> > why they look a certain way. I want to know what compelles them

to

> ask. It is hard to

> > learn how to talk about it, with out becoming emotional.

> >

> >

> >

> Hi ,

>

> My name is a and I am almost 36. Boy, do I know exactly what

you

> are saying and how you feel. I soooo empathize. I also have

> been 'ridiculed' the same, 'what is wrong with yours eyes?', 'how

did

> you get yours eyes like that?', '(also!)'are you Asian?', 'wow,

you

> look tired', 'what's your nationality?', 'gee, you look high as a

> kite', 'your eyes are like little slits', 'can you really see well

> from those eyes?', 'you sure have small eyes', 'are you

drunk?'....it

> goes on and on from childhood until now (adulthood even!). I have

> responded with witty comebacks to tears or swearing and scolding

them

> out or simply walking away. It is painful and maddening and I

agree,

> what makes a total stranger and an adult nonetheless be

so 'curious'

> (or rude)??? Kids are mean but so are adults. I often get 'you

look

> ready for bed' by the clerks at the check-out line in the grocery

> store. I have been in shock sometimes-in response to these

ignorant

> people, as if I have to make an excuse for myself or an almost

> apology. Through all my reactions, may it be 'uh-huh' -just to

get

> them to leave me alone to walking away from them, I have realized

> (with anguish) that it does not matter how I respond or react.

> People are simply ignorant and I have learned to be graceful

through

> it. Not always easy. A few times, I think it is people's way to

> start a conversation or even a 'pick-up' line, but that is no

excuse

> for their ignorism.

> I guess I have written 'a book' here, but it is just a relief to

hear

> that I am not alone although it feels like it at times. I also

> get 'wet' eyes often and have to wipe.

> I try and think that this is only -part of me, bit it does not

define

> me and life could be worse...easier said than done at times.

> I am a Reseptionist (in front and center of the office) and

> fortunately, I am successful in my career. I have a great make-up

> trick that helps to make my eyes look more open and I aim to

simply

> put my best foot forward. I try and think, everyone in life has

> their 'thing'. Your schooling and choice of career sounds very

> exciting and just keep pressing on.

> Miles of Smiles, a

>

[Guest guest]

I have heard all of these silly things, too, and often they hurt, but

sometimes they are just plain FUNNY, people are in a word, STUPID.

The one about " you speak good English " I mean what rock do these

people live under?????? Even my neighbors and friends who know about

me and my daughter, will say, oh Lily is tired, and I say, no she

just woke up. I think even good friends don't listen well, they don't

get it! oh well.

, I have felt everything you described. But you haven't let it

stop you, wow you are attending an EXCELLENT university and studying

something interesting that fascinates you and will no doubt lead to

an interesting career. Good for you

> > >

> > > Hi my name is . I am 22 and attend the University of

Iowa

> as

> > a journalism and art

> > > double major. My emphasis of study is photography. I have

> BPES, I

> > have had lots of

> > > surgeries, all done by Rick in Salt Lake City, Utah.

I

> > wonder what has driven me

> > > to be passionate about photography and I can't help but connect

> it

> > to the way I see the

> > > world, through my eyes. Sometimes I am scared that one day I

> won't

> > be able to shoot

> > > photos anymore. My eyes water alot, and I am always wiping at

> > them. All my life people

> > > have asked me if I was asian....or if I was tired...even if I

> was

> > high....All of these have made

> > > me tough and sometimes I a little short with people.

Sometimes

> I

> > ignore it, but

> > > sometimes it really makes me mad. I would never go up to a

> > complete stranger and ask

> > > why they look a certain way. I want to know what compelles

them

> to

> > ask. It is hard to

> > > learn how to talk about it, with out becoming emotional.

> > >

> > >

> > >

> > Hi ,

> >

> > My name is a and I am almost 36. Boy, do I know exactly what

> you

> > are saying and how you feel. I soooo empathize. I also have

> > been 'ridiculed' the same, 'what is wrong with yours eyes?', 'how

> did

> > you get yours eyes like that?', '(also!)'are you Asian?', 'wow,

> you

> > look tired', 'what's your nationality?', 'gee, you look high as a

> > kite', 'your eyes are like little slits', 'can you really see

well

> > from those eyes?', 'you sure have small eyes', 'are you

> drunk?'....it

> > goes on and on from childhood until now (adulthood even!). I

have

> > responded with witty comebacks to tears or swearing and scolding

> them

> > out or simply walking away. It is painful and maddening and I

> agree,

> > what makes a total stranger and an adult nonetheless be

> so 'curious'

> > (or rude)??? Kids are mean but so are adults. I often get 'you

> look

> > ready for bed' by the clerks at the check-out line in the grocery

> > store. I have been in shock sometimes-in response to these

> ignorant

> > people, as if I have to make an excuse for myself or an almost

> > apology. Through all my reactions, may it be 'uh-huh' -just to

> get

> > them to leave me alone to walking away from them, I have realized

> > (with anguish) that it does not matter how I respond or react.

> > People are simply ignorant and I have learned to be graceful

> through

> > it. Not always easy. A few times, I think it is people's way to

> > start a conversation or even a 'pick-up' line, but that is no

> excuse

> > for their ignorism.

> > I guess I have written 'a book' here, but it is just a relief to

> hear

> > that I am not alone although it feels like it at times. I also

> > get 'wet' eyes often and have to wipe.

> > I try and think that this is only -part of me, bit it does not

> define

> > me and life could be worse...easier said than done at times.

> > I am a Reseptionist (in front and center of the office) and

> > fortunately, I am successful in my career. I have a great make-up

> > trick that helps to make my eyes look more open and I aim to

> simply

> > put my best foot forward. I try and think, everyone in life has

> > their 'thing'. Your schooling and choice of career sounds very

> > exciting and just keep pressing on.

> > Miles of Smiles, a

> >

>

[Guest guest]

> > >

> > > Hi my name is . I am 22 and attend the University of

Iowa

> as

> > a journalism and art

> > > double major. My emphasis of study is photography. I have

> BPES, I

> > have had lots of

> > > surgeries, all done by Rick in Salt Lake City, Utah.

I

> > wonder what has driven me

> > > to be passionate about photography and I can't help but connect

> it

> > to the way I see the

> > > world, through my eyes. Sometimes I am scared that one day I

> won't

> > be able to shoot

> > > photos anymore. My eyes water alot, and I am always wiping at

> > them. All my life people

> > > have asked me if I was asian....or if I was tired...even if I

> was

> > high....All of these have made

> > > me tough and sometimes I a little short with people.

Sometimes

> I

> > ignore it, but

> > > sometimes it really makes me mad. I would never go up to a

> > complete stranger and ask

> > > why they look a certain way. I want to know what compelles

them

> to

> > ask. It is hard to

> > > learn how to talk about it, with out becoming emotional.

> > >

> > >

> > >

> > Hi ,

> >

> > My name is a and I am almost 36. Boy, do I know exactly what

> you

> > are saying and how you feel. I soooo empathize. I also have

> > been 'ridiculed' the same, 'what is wrong with yours eyes?', 'how

> did

> > you get yours eyes like that?', '(also!)'are you Asian?', 'wow,

> you

> > look tired', 'what's your nationality?', 'gee, you look high as a

> > kite', 'your eyes are like little slits', 'can you really see

well

> > from those eyes?', 'you sure have small eyes', 'are you

> drunk?'....it

> > goes on and on from childhood until now (adulthood even!). I

have

> > responded with witty comebacks to tears or swearing and scolding

> them

> > out or simply walking away. It is painful and maddening and I

> agree,

> > what makes a total stranger and an adult nonetheless be

> so 'curious'

> > (or rude)??? Kids are mean but so are adults. I often get 'you

> look

> > ready for bed' by the clerks at the check-out line in the grocery

> > store. I have been in shock sometimes-in response to these

> ignorant

> > people, as if I have to make an excuse for myself or an almost

> > apology. Through all my reactions, may it be 'uh-huh' -just to

> get

> > them to leave me alone to walking away from them, I have realized

> > (with anguish) that it does not matter how I respond or react.

> > People are simply ignorant and I have learned to be graceful

> through

> > it. Not always easy. A few times, I think it is people's way to

> > start a conversation or even a 'pick-up' line, but that is no

> excuse

> > for their ignorism.

> > I guess I have written 'a book' here, but it is just a relief to

> hear

> > that I am not alone although it feels like it at times. I also

> > get 'wet' eyes often and have to wipe.

> > I try and think that this is only -part of me, bit it does not

> define

> > me and life could be worse...easier said than done at times.

> > I am a Reseptionist (in front and center of the office) and

> > fortunately, I am successful in my career. I have a great make-up

> > trick that helps to make my eyes look more open and I aim to

> simply

> > put my best foot forward. I try and think, everyone in life has

> > their 'thing'. Your schooling and choice of career sounds very

> > exciting and just keep pressing on.

> > Miles of Smiles, a

> >

>

Hi Loka,

Thank you for the warm wishes and oh my gosh(!) I have never heard

that one before. I had someone say 'how did you GET yours eyes like

that?' and I replied, 'I went to school for it'. Maybe your comeback

could have been, 'Why, Thank you, I happened to be born in the USA'.

But I would have been stunned too! It does get tiring to be graceful-

for them and their ignorant ways! Thanks for your support. glad we

have that! =o) a

[Guest guest]

Hey again,

Thanks for writing me back. I appreciate all the support in my concerns on

here. I was started on the 600mg as Dr. Mauro felt that was were the average

dose was looking to start. He did state that he felt I would do okay on 400mg

and at that time we were discussing the trial of 400 vs 800mg. I felt 800 would

be too much. And 400 would be too little so I went along with the 600mg.

What would be the signs of being in accerated phase at diagnoses? This is what

my tests showed: WBC were around 21,000 and platelets were low normal. Spleen

was alittle enlarged (not too bad) and I was having sweats.

I am hoping that I was in early chronic phase as my CBC didnt seem to be as bad

as I have heard others being at diagnoses. And my counts responded quickly with

the first couple dose of hydroxyuria and Gleevec.

I am hoping to be at a 3 log reduction by May 29th as that is my 1 year on

Gleevec. I am repeating a CBC today and Dr. Mauro is sending me the PCR kit

today to do and send back up to him for a March 27th appointment.

S. RN

Re: [ ] Comments appreciated....

At 01:04 AM 3/2/06 -0500, you wrote:

> >From what I understand from the doctor is that if you skip or reduce the

>dose you have a risk of developing a resistance to the drug. I

>certainly don't

>want to risk that nor have I missed any doses thus far. I am just wondering

>if I would feel better on a lesser dose or if its too late to think about

>that since I am already on the 600mg? I I am responding well to

>the Gleevec and

>believe I am in cytogenic remission. (under 35%). Last testing showed 1

>out of 200 cells.

Hi ,

The goal of treatment is to have a 3 log reduction for the best chance of

not relapsing. So, that is the information that you want. When people do

get to a good level of response, doctors do decrease their dosage to lower

side effects. I think that Dr. Mauro wants to treat you aggressively

because of your 'young' age and I think I might remember that you had some

features of acceleration???? 600mg is that standard initial dose for

someone who is not early chronic phase.

Cytogenetic remission/response or CCR is actually zero from the cyto test.

It is MCR (major cyto response) that is 35% or less ph+. 1 out of 200 cells

would be your FISH.....which could actually be considered zero because

there are some false positives with FISH.

Mostly you would be concerned with PCR testing now.....and the 3 log

reduction.

You would not qualify for a BMS trial at this point (because I think you

are probably CCR).......but BMS drug should be approved soon.....and that

would be an option to see if you have fewer side effects on that drug than

with Gleevec. This is a much more potent drug, and should get you to a

lower PCR value sooner.

C.

[Guest guest]

At 12:12 PM 3/2/06 -0500, you wrote:

>Thanks for writing me back. I appreciate all the support in my concerns

>on here. I was started on the 600mg as Dr. Mauro felt that was were the

>average dose was looking to start. He did state that he felt I would do

>okay on 400mg and at that time we were discussing the trial of 400 vs

>800mg. I felt 800 would be too much. And 400 would be too little so I

>went along with the 600mg.

>What would be the signs of being in accerated phase at diagnoses? This is

>what my tests showed: WBC were around 21,000 and platelets were low

>normal. Spleen was alittle enlarged (not too bad) and I was having sweats.

Hi ,

It does sound like you were at early chronic......?? except maybe for the

spleen enlargement. I also go to OHSU with Dr. Druker. Their old standard

was to start at 400mg unless there were some signs of acceleration, then

they started at 600mg. I do think that 600mg is Dr. Druker's favored dose

over-all. Maybe if you show more good improvement with these tests, Dr. M

will think that a reduction to 400mg is OK for you. This is a balancing

act, between trying to get rid of the ph+ cells and having good quality of

life. Good luck with your visit. Maybe keep a side effect diary for this

month to show Dr. Mauro.......with specific info.

C.

[Guest guest]

> What would be the signs of being in accerated phase at diagnoses?

This is what my tests showed: WBC were around 21,000 and platelets

were low normal. Spleen was alittle enlarged (not too bad) and I

was having sweats.

********************************************

Hi ,

The feature that you want to look at the most when trying to decifer

which stage you were in when you were diagnosed, is the blast

count. Your white count, platelet count, spleen size and overall

symptoms are good to know, and can contribute to your risk factors

for progression but it's really the blast count that determines

which phase you were in.

In the old days less than 5% blasts was considered chronic, 5%-30%

was considered accelerated and over 30% was blast crisis. It seems

nowadays though that a lot of doctors feel chronic phase can have up

to 15% blasts and accelerated is between 15%-30% (blast crisis

remaining the same, which is over 30%).

It seems logical that the overall white count would be indicative of

disease status, but it really isn't. We've seen people in blast

crisis with a white count of less than 30,000 and we've seen people

in early chronic phase with a white count of more than 500,000.

Hope that helps,

Tracey