Hello to All

[Guest guest]

Did you not go to the dietitian like Dr. Neal suggests? She gave me lots of

recipes and food

suggestions.

A lot of the other information I got here on the boards and other websites.

Using FitDay.com

is a good way to track what it is I am eating. I don't know how many times I

think I am

" eating right " until I do a full accountability - then it's a huge wake-up

call!!!

Did you explain to Dr. Neal what it is you are eating? He has never denied

giving me a fill.

Never any trouble at all. Although you do have to schedule a fill [which was

the hang up for

my first fill that I rescheduled a week later].

G. in Tacoma, WA

Dr. Neal 11.19.03 60.5 " tall, age 31

268/197/<134 ... 71 down, 63 to go

http://groups.msn.com/BandedDiva

" Nothing worth fighting for is ever easy! " ~ Oliver North

[Guest guest]

, thank you for responding I did go to the dietitian in

Olympia and she wasn't very helpful, just gave me a food guide and

several recipes for fruit smoothies. You must have had surgery the

week before I did. You are really doing great. Yes I did have my

fill scheduled and he went into the port flushed it out and then

refilled it to 1.3 it may have been 1.2 before not sure. He said it

was just where it should be.

Gail

> Did you not go to the dietitian like Dr. Neal suggests? She gave

me lots of recipes and food

> suggestions.

>

> A lot of the other information I got here on the boards and other

websites. Using FitDay.com

> is a good way to track what it is I am eating. I don't know how

many times I think I am

> " eating right " until I do a full accountability - then it's a huge

wake-up call!!!

>

> Did you explain to Dr. Neal what it is you are eating? He has

never denied giving me a fill.

> Never any trouble at all. Although you do have to schedule a fill

[which was the hang up for

> my first fill that I rescheduled a week later].

>

>

> G. in Tacoma, WA

> Dr. Neal 11.19.03 60.5 " tall, age 31

> 268/197/<134 ... 71 down, 63 to go

> http://groups.msn.com/BandedDiva

> " Nothing worth fighting for is ever easy! " ~ Oliver North

[Guest guest]

Barfing is pbing. pain in the chest is a sign of overeating. If

you get that frequently-you're setting yourself up for failure and

possibly losing your band. I bought those sardines in a can for

lunch and I used to eat those. I never had them before I got

banded, but they were the perfect lunch. I'd recommend you taking

an hardboiled egg and some tuna. A few vegetables for lunch.

I don't recommend cheese. (This is my weekness as well but it's only

fat and I have enough fat on me already.) You might want to see

about getting a upper GI and see how your band looks now. Another

possiblity is that your already too tight and can't eat properly.

This happened to me and once I got an unfill, I could better manage

what I was eating.

> I'm not sure what I should eat when I am at work. I only have 1/2

> hour for lunch and find it difficult to eat anything solid, I

guess

> I talk too much and dont watch how I am chewing. Do you have any

> suggestions about small meals or snacks? I don't have reflux, I

did

> before the surgery. I do have pain in my chest quite frequently

when

> I eat and do barf occassionally. what is PBing?

> --- In , " dochinkabands "

[Guest guest]

Have you called Dr. Neal with any of these questions? Peggy? It

makes a little more sense now why he might have chosen not to give you

a fill since you can't eat anything solid;-) PBing is barfing,

sometimes caused by eating too fast, wrong foods. I'd be interested in

knowing how you get this resolved because I'm due to start solids here

pretty soon.. Best of luck..

Kem in Eugene

286/273/150

Dr. Neal 8.6.04

<º)))><

On Saturday, August 21, 2004, at 03:42 PM,

wrote:

> Date: Sat, 21 Aug 2004 22:03:28 -0000

> From: " helpergal22 " <gblair1949@...>

> Subject: Re: hello to all

>

> I'm not sure what I should eat when I am at work. I only have 1/2

> hour for lunch and find it difficult to eat anything solid, I guess

> I talk too much and dont watch how I am chewing. Do you have any

> suggestions about small meals or snacks? I don't have reflux, I did

> before the surgery. I do have pain in my chest quite frequently when

> I eat and do barf occassionally. what is PBing?

>

>> From your description, it does sound like you eating around the

>> band. Why cheese? Why crackers? If you have to eat during the

> day,

>> why not choose something other then fat? (cheese). The reflux is

>> the acid in the throat coming up because of then the band is too

>> tight. Are you chewing for your food really well? I get tired of

>> the chewing- but if I don't- I'm in trouble. It does sound like

> you

>> need to redo some of your eating habits. It's easier said then

>> done, but it's well worth the effort. Are you drinking your water?

>>

>>

>>

[Guest guest]

Saturday, August 21, 2004, 4:03:28 PM, you wrote:

h> I'm not sure what I should eat when I am at work. I

h> only have 1/2

h> hour for lunch and find it difficult to eat anything

h> solid, I guess

h> I talk too much and dont watch how I am chewing. Do

When you're eating, focus on the eating. If you're talking when you're

eating, you aren't focusing on the eating and chewing. Listening while

you're eat is OK. I know I need to learn to listen more anyway, so I

try to focus on that. I'm less opposed to cheese in small quantities

than many are, but it is easy to eat WAAY too much of it for me.

h> you have any

h> suggestions about small meals or snacks? I don't

h> have reflux, I did

h> before the surgery. I do have pain in my chest quite

h> frequently when

h> I eat and do barf occassionally. what is PBing?

Pain in the chest means you're full. Don't eat another bite. That

means something is stuck or you're too full. Same with hiccups. PBing

is a stupid euphemism someone thought up to mean barfing. The

" productive burp " or " bandster barf " terms are waaayyy too cute for

me, and inaccurate. Yes, when you barf it isn't the same as the

" stomach flu barf " that brings up acid and stuff to, but it is still

barfing as far as I'm concerned.

dan

Dan Lester, Boise, ID honu@... www.mylapband.tk

Dr. Ortiz, Tijuana, 4/28/03

323/211/199 Age 61

[Guest guest]

Hi Bridgette,

We have really missed you! I am happy to hear that is doing so well.

We have alot of new parents here since you posted last. is definately a casting success story. What was 's origional curve at again and what is she at now?

Crista

[Guest guest]

Hello, Rod!

Welcome to our group. There are lots of good compassionate people

here who share their knowledge and trials. Feel free to ask

questions or tell us what you've learned.

Did your previous tx work? Are you still positive? What's your

genotype?

Okay, gotta go.

Hugs and prayers,

Suzy

> i just joined group and like to meet new people and learn more

> things. i am from louisiana and am 35 male.i have done medication

for

> hep c before, but am hoping to learn new things......

[Guest guest]

>Hi Rod,

I'm from Louisiana, too, at least originally. Welcome to the group. I've

been through treatment, too, but was a non-responder. I'm genotype 1a and

now, after 25 years, also have cirrhosis. It's good to have people, like

those in this group, to learn from and share with. Welcome again to our group.

Marie in NW Florida (Ivan Country)

>

> > i just joined group and like to meet new people and learn more

> > things. i am from louisiana and am 35 male.i have done medication

>for

> > hep c before, but am hoping to learn new things......

>

>

>

[Guest guest]

I've been on Enbrel since before it was approved for PA. I had been taking

MTX for years prior and am still taking it. My fatigue before Enbrel was

horrible, and fortunately for me, things improved greatly after going on the

Enbrel. I hope as your body adjusts to being off the prednisone and on the

Enbrel you will find the some relief. I've never taken Prednisone, but from

what I understand it gives you a boost, so maybe it's not the Enbrel causing

your fatigue, maybe it's coming of the Prednisone. I still have days with

fatigue, but nothing like before. Good luck with the Enbrel; it can be a

wonderful addition to your life.

Becky

_____

From: avriah8 [mailto:avriah@...]

Sent: Sunday, April 03, 2005 11:33 AM

Subject: [ ] Hello to all

*

I am new to the group. I was diagnosed with RA and PA several years

ago and have just really found that in the last year or so that it

has become a real nuisance to my life. I have had to change jobs

because of my hands. I used to be an executive assistant, but I can

no longer type. I found an affinity for sales, so I have gone into

that, but can no longer to outside sales (something that I loved).

The wear and tear on my poor body was just too much.

I live in Arizona, with my partner, Abbe and our blended family of

four children. We are very, very busy. Life is happy and

chaotic...and very noisy!

I was on MTX but my liver count went to 1643 (yikes) I have since

recovered (the body is a wondererous thing) and am now on Enbrel,

week two.

I have am coming off a maintenance dose of pred, almost a year...and

not looking forward to it. It is a long and painful process that I

must do. Has anyone experienced a level of profound fatigue on

Enbrel? I am amazed how tired I am...or is it just the disease

rearing its ugly head?

I am happy to be here, and glad to meet you all...

Have a good rest of your weekend . . .

[Guest guest]

Hi Becky,

Thanks for writing back - it is nice to know that there can be life

off pred...I have wondered and have been really scared. How long did

it take you to feel a difference for the Enbrel to take a hold of

you - where you really felt a difference? I am going do REALLY

slowly off the pred..

>

> I've been on Enbrel since before it was approved for PA. I had

been taking

> MTX for years prior and am still taking it. My fatigue before

Enbrel was

> horrible, and fortunately for me, things improved greatly after

going on the

> Enbrel. I hope as your body adjusts to being off the prednisone

and on the

> Enbrel you will find the some relief. I've never taken Prednisone,

but from

> what I understand it gives you a boost, so maybe it's not the

Enbrel causing

> your fatigue, maybe it's coming of the Prednisone. I still have

days with

> fatigue, but nothing like before. Good luck with the Enbrel; it

can be a

> wonderful addition to your life.

>

>

>

> Becky

>

>

>

> _____

>

> From: avriah8 [mailto:avriah@m...]

> Sent: Sunday, April 03, 2005 11:33 AM

>

> Subject: [ ] Hello to all

>

>

>

> *

>

> I am new to the group. I was diagnosed with RA and PA several

years

> ago and have just really found that in the last year or so that it

> has become a real nuisance to my life. I have had to change jobs

> because of my hands. I used to be an executive assistant, but I

can

> no longer type. I found an affinity for sales, so I have gone into

> that, but can no longer to outside sales (something that I loved).

> The wear and tear on my poor body was just too much.

>

>

> I live in Arizona, with my partner, Abbe and our blended family of

> four children. We are very, very busy. Life is happy and

> chaotic...and very noisy!

>

> I was on MTX but my liver count went to 1643 (yikes) I have since

> recovered (the body is a wondererous thing) and am now on Enbrel,

> week two.

>

> I have am coming off a maintenance dose of pred, almost a

year...and

> not looking forward to it. It is a long and painful process that I

> must do. Has anyone experienced a level of profound fatigue on

> Enbrel? I am amazed how tired I am...or is it just the disease

> rearing its ugly head?

>

> I am happy to be here, and glad to meet you all...

>

> Have a good rest of your weekend . . .

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Avriah,

Welcome to the group. Hope you can get the answers you are looking for from

us.

I do feel very tired a lot of the time but I blame the disease. I have only

been on Enbrel around three months and I've been tired a lot longer than that.

lol

To tell you the truth I have actually felt a bit MORE energetic since

starting it.

I'm glad you found us.

Take care,

[Guest guest]

My daughter recently had a baby and is deciding on the

issue. I am sending her all the wonderful files that

Sherri has as well as research that I did because her

doctor said she would support her if she could show

her a good reason why she is choosing not to. She

doesn't live close however.

****My word! The doctor works for HER and she shouldn't have to justify

anything. That's a bunch of hogwash!

Since I could find very little support when I had my

boys I chose not to register their births, but now my

sons are getting older and want to do things that

require them so I have the papers to do that. But I

am nervous because I have no backup healthcare

provider. I feel very stupid to have avoided this but

I had heard several horror stories in this state about

the vaccination issue.

****I wouldn't call you " stupid " for having avoided the " healthcare " system.

I'd call that being very intelligent! : )

Here is a website that lists classical homeopaths in the U.S. and Canada. Click

on New York and look at the ones in bold print. If you find one reasonably

close to you, I recommend you check with Sheri, the listowner, to see if she can

personally recommend that person, or if their credentials look kosher.

http://www.homeopathy-cures.com/html/referrals_to_homeopaths.html

All the best, and welcome to the group, !

Thanks,

[Guest guest]

I took a couple of weeks for the Enbrel to kick in; I've been on it since

2001, started 2 weeks before 911. But, some get relief sooner then I did.

Hope it works well for you.

Becky

_____

From: avriah8 [mailto:avriah@...]

Sent: Monday, April 04, 2005 7:34 PM

Subject: [ ] Re: Hello to all

Hi Becky,

Thanks for writing back - it is nice to know that there can be life

off pred...I have wondered and have been really scared. How long did

it take you to feel a difference for the Enbrel to take a hold of

you - where you really felt a difference? I am going do REALLY

slowly off the pred..

>

> I've been on Enbrel since before it was approved for PA. I had

been taking

> MTX for years prior and am still taking it. My fatigue before

Enbrel was

> horrible, and fortunately for me, things improved greatly after

going on the

> Enbrel. I hope as your body adjusts to being off the prednisone

and on the

> Enbrel you will find the some relief. I've never taken Prednisone,

but from

> what I understand it gives you a boost, so maybe it's not the

Enbrel causing

> your fatigue, maybe it's coming of the Prednisone. I still have

days with

> fatigue, but nothing like before. Good luck with the Enbrel; it

can be a

> wonderful addition to your life.

>

>

>

> Becky

>

>

>

> _____

>

> From: avriah8 [mailto:avriah@m...]

> Sent: Sunday, April 03, 2005 11:33 AM

>

> Subject: [ ] Hello to all

>

>

>

> *

>

> I am new to the group. I was diagnosed with RA and PA several

years

> ago and have just really found that in the last year or so that it

> has become a real nuisance to my life. I have had to change jobs

> because of my hands. I used to be an executive assistant, but I

can

> no longer type. I found an affinity for sales, so I have gone into

> that, but can no longer to outside sales (something that I loved).

> The wear and tear on my poor body was just too much.

>

>

> I live in Arizona, with my partner, Abbe and our blended family of

> four children. We are very, very busy. Life is happy and

> chaotic...and very noisy!

>

> I was on MTX but my liver count went to 1643 (yikes) I have since

> recovered (the body is a wondererous thing) and am now on Enbrel,

> week two.

>

> I have am coming off a maintenance dose of pred, almost a

year...and

> not looking forward to it. It is a long and painful process that I

> must do. Has anyone experienced a level of profound fatigue on

> Enbrel? I am amazed how tired I am...or is it just the disease

> rearing its ugly head?

>

> I am happy to be here, and glad to meet you all...

>

> Have a good rest of your weekend . . .

[Guest guest]

I am from Western NY below Rochester NY, where are you? I had some

problems, with one Dr. and the school never had anyone without vaccinations

before me, NOW they have 4 other families right after me.

Western NY

Hello to all

>

> Hi all of you, My name is Marsh and I am a

> homeschooling mother of four. My first two are grown

> and married but I still have a 14yo and a 9 yo at

> home. I did everything the doctor told me to with the

> first two but in later years I read more and after my

> 3rd child's birth I chose not to vaccinate. I also

> had the last 2 at home. They have been incredibly

> healthy boys since I avoid all medication. However I

> need to know if anyone of you are from upstate ny and

> are aware of alternative medical care persons or

> doctors who will support the decision not to

> vaccinate. NY seems to be a little nasty and where I

> live there seems to be no one. I have flown under the

> screen here because my boys have been so healthy and I

> did have them at home.

>

> My daughter recently had a baby and is deciding on the

> issue. I am sending her all the wonderful files that

> Sherri has as well as research that I did because her

> doctor said she would support her if she could show

> her a good reason why she is choosing not to. She

> doesn't live close however.

>

> Since I could find very little support when I had my

> boys I chose not to register their births, but now my

> sons are getting older and want to do things that

> require them so I have the papers to do that. But I

> am nervous because I have no backup healthcare

> provider. I feel very stupid to have avoided this but

> I had heard several horror stories in this state about

> the vaccination issue.

>

> There is a support group in the city but I am 5 hours

> from there.

> Anyone have any ad vice?

>

> Thanks,

>

>

>

> __________________________________

> Messenger

> Show us what our next emoticon should look like. Join the fun.

> http://www.advision.webevents./emoticontest

>

>

>

>

>

[Guest guest]

Hi ,

Nice to meet you! So you have been on Enbrel for 3 months? How long

did it take before you noticed that it kicked in? I detest the

fatigue of this disease so much... I drive my children and my partner

nuts usually with my energy and now, well...things are different.

I am hoping for a change soon. Thank you for your warm welcome...

>

> Hi Avriah,

>

> Welcome to the group. Hope you can get the answers you are looking

for from

> us.

> I do feel very tired a lot of the time but I blame the disease. I

have only

> been on Enbrel around three months and I've been tired a lot longer

than that.

> lol

> To tell you the truth I have actually felt a bit MORE energetic

since

> starting it.

> I'm glad you found us.

>

> Take care,

>

>

>

>

>

[Guest guest]

In a message dated 4/7/05 10:54:40 AM GMT Daylight Time, avriah@...

writes:

Hi ,

Nice to meet you! So you have been on Enbrel for 3 months? How long

did it take before you noticed that it kicked in? I detest the

fatigue of this disease so much... I drive my children and my partner

nuts usually with my energy and now, well...things are different.

I am hoping for a change soon. Thank you for your warm welcome...

Hi ,

Sorry it has taken so long for me to get back to you. You will get used to

that with me though. lol

I think it was probably after a couple of months that I was saying that I

had a general feeling of improvement. It has not been as dramatic as I had hoped

but it seems to be happening ok but slowly. I think I might have said in my

last mail that one of the first things I did detect was a slight improvement

in my energy level. I hope that will be the case with you. Keep us informed

if you do feel any changes for the better...............or worse although I

really hope that is not the case.

Good luck and take care,

[Guest guest]

Hi ,

I remember you. I'm glad to hear that you're doing well physically

and I certainly understand how your emotions can be all over the map.

I think we can all relate to that.

Many people in the group are on an anti-depressant and find them

helpful. Perhaps you might want to talk to your doctor about trying

one? Sometimes it can take several tries to get the right one at the

right doses though.

I look forward to seeing you more actively on the board,

Tracey

dx Jan 2002

[Guest guest]

At 02:40 PM 5/20/05 +0000, you wrote:

I just want to obtain as much information from as

>many sources as I can and share what I feel may be relivent to the

>discussions. I would ask for your continued prayers and support. It

>seems that I am physically doing great and outwardly I am doing

>terrific but on the inside and in my mind I am terriblly confused and

>am having a lot of trouble.

>I thank you for you support and your time. I am sorry I took up so

>much of your time with this but...

> Herring

>DX May 2004

>CCR Oct 2004

>Zavie Zero Club # 751 Oct 2004

Hi ,

I remember when you first posted with questions and I am glad to read that

you have responded so well to Gleevec and are pursuing your college goals.

I am glad that you have posted here with your concerns.

Here is one thing that I think happens, especially with a young person such

as yourself. When you are first diagnosed, all your effort and energy is

put into

fighting this disease......worrying about how you will respond to treatment and

even making treatment decisions. You have faced all that successfully. In a

way you feel victorious.......but in another way you realize that you

didn't win.

Then the reality that you still have CML hits....it is here for life, you

can't escape

it, it doesn't go away........which does not mean that you can't have a

great life,

but it may be different in some ways than the life you had planned. You lose

some of your dreams.......and you have to find new goals and dreams to replace

them. I can't remember for sure, but maybe you had planned to stay in the

service

as a career??? and had to let that go (this would be an example). So, I

think it

is natural to have confusing thoughts at this time......when the battle

with CML is

over (disease under control) but the war is not won.

I would see if your college has a counseling center where you can find someone

to talk to about 'where you are with things right now'....and what you want

in the

future.......or maybe pursue some outside counseling. I think even a few brief

sessions could really help you at this time of confusion. Also, joining a

face to

face support group, like with the Leuk & Lym. Society or your cancer center

might

help you...........and continue to chat with us also. You have lots of

friends here.

Best wishes to you,

C.

[Guest guest]

,

Never apologize for sending a long post. The purpose of this group is to share

information and support for people who have, or care for someone who has, CML.

There's no set limit on how many words one needs to accomplish either of those

ends. I remember your post from last year and I am so happy that Gleevec is

working for you and that you're responding well. But from what you say, it

sounds that you are struggling emotionally. It also sounds like you have had a

lot on your platter in the past year: returning from Iraq, being diagnosed,

learning about CML, getting treatment, adjusting to side effects, attending

college, dealing with family life, etc. Just returning from military service and

getting back to your life is plenty to handle. Throwing CML into the mix

complicates things enormously. This is always a good place to talk about what's

getting you down or just to vent. Many people on this list do that. But you

might also benefit from talking to someone face to face. The

Leukemia and Lymphoma Society has many chapters throughout the country and

offers a variety of support groups. Sometimes just talking to another person

who has had some of the same feelings as you have had is a huge help; knowing

that you're not the only one out there who's felt that way. There might also be

counseling available through your college or possibly the Veteran's

Administration. Whatever you do just remember that what you've been doing over

the past year has been reassembling your life, piece by piece, in the wake of

the major things that have happened to you. It's like jigsaw puzzle. Sometimes

it's hard to find the right piece or to know how it fits, but in time it will

all come together.

Adrienne

mherr252742003 <mherr25274@...> wrote:

Hello,

For many months now I have been recieving daily digest from the many

differnt groups out there. I rarely post but read the bullitens

every day. I would like to say that I have finally gotten around to

signing up for this group also and give a fast, and I mean real fast,

update.

Before I start I think a little history is in order. Some of you

might remember me from the past. I was DX when I returned from Iraq

and had an ordinarry physical done. My white blood cells were three

times the norm and I was called back in to have more test run. This

all started 5 May 2004. On 11 May 2004, I was given the news or CML

chronic phase. I was turned over from military doctors to civilian

care and immediatelly put on Gleevic 400mg. In Oct 2004 I was

medically retired from the Army and the good folks at Emory (Atlanta,

GA) told me that I was in CCR but still PCR positive.

Due to insurance changes I am no longer being seen at Emory but am

trying to get referred to University of Alabama at Biringham or to

Moffet in Tampa. I have just went over a year since being Dx and

things are good.

Although I am fighting for referrals, I see my local ONC monthly. My

blood levels are still great and with the exception of fatigue (thats

another story all together) and severe leg and joint cramops and

pain, I am living a great life. I am still in college and classes

are going great. I get to build my farm up into something more that

paper drawings. I get to go to my kids gym and softball games. I

get to spend all day and night with my 2 year old. I am doing

great!

I want you all to know that I am touched by the love and care you

give one another. I am going to make a huge effort to become a more

active member of all the groups. I know there was was a " split " a

while back and I really don't want to become involved in the politics

of all of that. I just want to obtain as much information from as

many sources as I can and share what I feel may be relivent to the

discussions. I would ask for your continued prayers and support. It

seems that I am physically doing great and outwardly I am doing

terrific but on the inside and in my mind I am terriblly confused and

am having a lot of trouble.

I thank you for you support and your time. I am sorry I took up so

much of your time with this but...

Herring

DX May 2004

CCR Oct 2004

Zavie Zero Club # 751 Oct 2004

---------------------------------

[Guest guest]

Hey Tracey,

I am also on an anti depressant. My wife hates the idea of pills but I

am living proof that some meds are needed. I thank you for the post.

Please read my apoligic post in the message area if you haven't

already. I must have given the very wrong impression yesterday. I am

sorry for that but I do appreciate all the concern.

Smile,

> Hi ,

>

> I remember you. I'm glad to hear that you're doing well physically

> and I certainly understand how your emotions can be all over the

map.

> I think we can all relate to that.

>

> Many people in the group are on an anti-depressant and find them

> helpful. Perhaps you might want to talk to your doctor about trying

> one? Sometimes it can take several tries to get the right one at the

> right doses though.

>

> I look forward to seeing you more actively on the board,

> Tracey

> dx Jan 2002

[Guest guest]

,

What a nice and thoughtful post. Are you sure we haven't talked face

to face? You seem to have hit it on the head. Read my post from

earlier today. My wife say's it is a midlife crisis mixed with an

identy crisis. It will pass and all will be well in a few days or

weeks.

thank you so much for the concern and guidance.

Smile,

> I just want to obtain as much information from as

> >many sources as I can and share what I feel may be relivent to the

> >discussions. I would ask for your continued prayers and support.

It

> >seems that I am physically doing great and outwardly I am doing

> >terrific but on the inside and in my mind I am terriblly confused

and

> >am having a lot of trouble.

> >I thank you for you support and your time. I am sorry I took up so

> >much of your time with this but...

> > Herring

> >DX May 2004

> >CCR Oct 2004

> >Zavie Zero Club # 751 Oct 2004

>

>

> Hi ,

>

> I remember when you first posted with questions and I am glad to

read that

> you have responded so well to Gleevec and are pursuing your college

goals.

> I am glad that you have posted here with your concerns.

>

> Here is one thing that I think happens, especially with a young

person such

> as yourself. When you are first diagnosed, all your effort and

energy is

> put into

> fighting this disease......worrying about how you will respond to

treatment and

> even making treatment decisions. You have faced all that

successfully. In a

> way you feel victorious.......but in another way you realize that

you

> didn't win.

>

> Then the reality that you still have CML hits....it is here for

life, you

> can't escape

> it, it doesn't go away........which does not mean that you can't

have a

> great life,

> but it may be different in some ways than the life you had planned.

You lose

> some of your dreams.......and you have to find new goals and dreams

to replace

> them. I can't remember for sure, but maybe you had planned to stay

in the

> service

> as a career??? and had to let that go (this would be an example).

So, I

> think it

> is natural to have confusing thoughts at this time......when the

battle

> with CML is

> over (disease under control) but the war is not won.

>

> I would see if your college has a counseling center where you can

find someone

> to talk to about 'where you are with things right now'....and what

you want

> in the

> future.......or maybe pursue some outside counseling. I think even

a few brief

> sessions could really help you at this time of confusion. Also,

joining a

> face to

> face support group, like with the Leuk & Lym. Society or your

cancer center

> might

> help you...........and continue to chat with us also. You have lots

of

> friends here.

>

> Best wishes to you,

> C.

[Guest guest]

Adrienne,

Thanks for the support and the confidance. I really do think I gave

the wrong impression yesterday. Please read, if you haven't already,

my post from earlier today. Everything is really fine with the CMl

and all. It's just adjusting to a new life style. Now I know why so

many musicaians come out of retirement...LOL. There is something

about getting into a set lifestyle and then having to change it

completely. Sometimes it just doesn't work.

Smile,

> Hello,

> For many months now I have been recieving daily digest from the

many

> differnt groups out there. I rarely post but read the bullitens

> every day. I would like to say that I have finally gotten around

to

> signing up for this group also and give a fast, and I mean real

fast,

> update.

> Before I start I think a little history is in order. Some of you

> might remember me from the past. I was DX when I returned from

Iraq

> and had an ordinarry physical done. My white blood cells were

three

> times the norm and I was called back in to have more test run.

This

> all started 5 May 2004. On 11 May 2004, I was given the news or

CML

> chronic phase. I was turned over from military doctors to civilian

> care and immediatelly put on Gleevic 400mg. In Oct 2004 I was

> medically retired from the Army and the good folks at Emory

(Atlanta,

> GA) told me that I was in CCR but still PCR positive.

> Due to insurance changes I am no longer being seen at Emory but am

> trying to get referred to University of Alabama at Biringham or to

> Moffet in Tampa. I have just went over a year since being Dx and

> things are good.

> Although I am fighting for referrals, I see my local ONC monthly.

My

> blood levels are still great and with the exception of fatigue

(thats

> another story all together) and severe leg and joint cramops and

> pain, I am living a great life. I am still in college and classes

> are going great. I get to build my farm up into something more

that

> paper drawings. I get to go to my kids gym and softball games. I

> get to spend all day and night with my 2 year old. I am doing

> great!

> I want you all to know that I am touched by the love and care you

> give one another. I am going to make a huge effort to become a

more

> active member of all the groups. I know there was was a " split " a

> while back and I really don't want to become involved in the

politics

> of all of that. I just want to obtain as much information from as

> many sources as I can and share what I feel may be relivent to the

> discussions. I would ask for your continued prayers and support.

It

> seems that I am physically doing great and outwardly I am doing

> terrific but on the inside and in my mind I am terriblly confused

and

> am having a lot of trouble.

> I thank you for you support and your time. I am sorry I took up so

> much of your time with this but...

> Herring

> DX May 2004

> CCR Oct 2004

> Zavie Zero Club # 751 Oct 2004

>

>

>

>

> ---------------------------------

>

[Guest guest]

Rosmary

Congrats on being a 5 yr post op. I'm only 3 weeks post op. I am so sorry

for the loss of your husband. I can't even begin to know what you've gone

through. You are always among friends that care when you log onto this group

So even though I am new and don't know many people. I'd still like to

welcome you here anytime. So many of us find friendship, comeradery, love

and support. Of course you already know all this. We will be your

cheerleaders as you work on losing those 25 that have creeped back. I know

you can do it, afterall Dr R gave you a great tool. :-)

Blessings

Cheri

299/286/140's

10/26/05 Dr R Las Vegas

-- Hello to all

Good Morning all,

I find I do not sleep well any more, well that is nothing new, and

I came on the group and see since I posted if anyone remembered me I

have gotten a lot of replys. Thank you all who replied. It is good

to see there are still some who know and remember me. It is good to

have the contact again. I really miss that. Iwill be coming into

the group more often. I tried to respond to all of you. Hope you

see the messages.

thank you for being there, and I hope to help some of you if I can

the way I used to before. I was a contact for so many people. I had

kept all the emails of those that I was a contack for, and just last

week I went through all exess paper and got rid of all the paper, but

I was so surprised to see how many I was a contact for. I hope you

are all successful.

Jan 26 will be 5 years I had my surgery. It was just 4 year

anniversary of my husband's death, right after the picnic in NC as we

were coming home. That had really taken a toll on my emotions and my

state of mind. Depression and a 25 lbs weight gain. But I am trying

to pick myself up and dust myself off and start all over again. I

hope that coming back to the groups will help me get back on track.

Thank you to all who have written,

Rosemary

Hi DR Rutledge, do you still read the posts or not??

[Guest guest]

Hi Kathie!

I am here. I am pretty busy. Helping out family, shopping, and doin'

my WOMAN CHORES!!! HAHA! I hope you have a great Christmas. I will! I

am looking forward to my kids being off school. My youngest, in

kindergarten ,is on the countdown to SANTA and cuddletime with mom.

I have been having a little trouble swallowing lately. Not sure why.

Been a long while since a dilitation. I'll muddle through somehow.

Talk to you soon!

Dawn

>

> Hello everyone:

> It has been awhile since I posted .. so I want to catch up....

> WELCOME to all the Newbies ... as I am sure you have read 100

times,

> very little is new, we do not mind the complaining as we need an

outlet

> and do not hesitate to ask questions.

> *****

> Ann and Peggy ... I LOVE the chronicals. I thought the reference

to

> Sandy and the kids was fabulous and VERY funny. You may have

missed

> your calling. What an imagination. I can't wait for the next

> chapter. I am actually printing them out so I can re-read them.

> Thanks for your creativity. I love the end asking a question, who

> knows who will jump in and add to the story!

> *****

> EDWARD ... Congratulations on Making King .. the PERFECT choice!

> *****

> NOTAN the Wise ... Perfect title for you. I NEVER skip over your

> comments or advise.

> *****

> MARTIN ... Are you our token Male Sex Symbol? I am a little

concerned

> about this Apron thing!

> *****

> SANDY ... I agree, we all need to encourage Deborah. Your comments

and

> writings are always interesting.

> *****

> TRACY ... I am sorry you are having such a difficult time. Carole

just

> went thru the big E operation and from what I understand, is doing

very

> well. Good luck on your decision.

> *****

> CAROLE ... Where are you? We Miss You!!!

> *****

> ANDREA ... Hope you are feeling well ... your preg is just moving

along.

> *****

> DAWN ... Where are you? Haven't heard from you!!! Hope you are

well.

> *****

> MAGGIE ... If you can't open the photo part, no one can. You amaze

me

> with your computer skills.

> *****

> DEBORAH at the Beach ... I can't imagine that you are being very

> productive while you feel so crappy. You will not believe the

> difference. You need to take care of yourself so that you CAN do

the

> things you want. WE CARE.

> *****

> YVONNE ... you have been such a positive voice on the board.

Please

> feel free to complain sometimes. I am really sorry about your

dog.

> That is really a family member.

> *****

> BILJANA ... Just wondering if you are feeling any better?

> *****

> SANDI ... Hope you are over the flu. How is ?

> *****

> MICHELLE ... I think we had our surgery around the same time ...

March

> 16 for me. I am doing pretty well too ... even the Spasms seem to

be a

> little better.

> *****

> CINDI ... So glad you are back on the board.

> CINDI 2 ... Glad your son is recouperating from his surgery.

> *****

> ISHIA ... Sorry if I misspelled your name. We have not heard from

you

> in awhile. Sure hope you are ok. Stop in and say hello.

> *****

> CAROLINE ... Always glad to hear Cameron is doing well.

> *****

> BRENDA ... I think about your husband and hope he finds help soon.

> *****

> LIZ ... Good luck with your surgery ... it will be GREAT!

> *****

> JOE and MARK ... Sounds like both of you have alot on your plates.

I

> am really glad you found the group. We will be glad to help if we

can.

> *****

> DEBBIi ... You must have one heck of a yard for an Ice Rink!

> *****

> CRYSTAL and LISA ... glad to hear you are doing well

> *******************

> I am sure that I missed several people, but I just wanted to do

some

> comments.

>

> The Holiday Season is approaching (Christmas to Me), and I just

wanted

> to take a minute to tell each and every one of you how important

you

> have become in my life. The support and friendship I have gained

over

> the year far exceeds anything I ever expected to receive when I

joined

> the board. I wish that I could give back as much as I have

received.

>

> I wish everyone a wonderful Holiday Season, however you celebrate,

with

> family and friends surrounding you. I pray that all the surgeries

> lined up go well, and that you continue to improve with this awful

> disease. I tell people ... ACHALASIA ... sounds like an exotic

island

> in the Pacific ... but believe me, you do not want to go there!

>

> Happy Swallowing in the New Year! Thank you for your Friendship!

>

> Kathie in Pittsburgh

>

[Guest guest]

Dear Donna, Neil, Georgia & Welcome, we are clare and emy from Hertfordshire. Im really glad everything is going well with and you have been given trusting advice - it just makes the whole process a little easier. Emy and i have both been operated on by Mr Collin at Moorfields and we can absolutely recommend him, with no exception. We were there on 18th, would love to meet up with you at the next one, it is truly a wonderful support group. Happy, magical christmas and all the best for 2006. Regards clare and emy vann_donna <vann_donna@...> wrote: Hi to everyonei joined

the site a few weeks ago but have been extremely busy and haven't had too much time to write. My little boy is now 16 months old and has BPES. (hope to post some photos in the next few days).Some of you may remember that I was concerned that he wasn't yet walking. He's nearly there and his confidence is is building day by day. He is now very active and wearing us all out!! All the comments I received were gratefully received. I'm sorry we couldn't make it to the meeting on the 18th but we would definitely like to meet up with others so hopefully more meetings will be arranged for next year.We saw the consultant last week and he is pleased with ' progress and quite confident that he won't require any surgery until he is at least 3-4 years. As many of you are under the care of Dr Collin at Moorfields, who seems to be one the most experienced in this field, we

were concerned about where his surgery would be carried out (we live in Wolverhampton). Our consultant confirmed that when the time comes he would like to refer us to Dr Collin and this has given us much needed reassurance.Now things are calming down at home I will be in touch more and would like to wish everyone a Merry Christmas and a Happy New Year.Best WishesDonna, Neil, Georgia & Vann

for Good - Make a difference this year.