Re: Digest Number 317

[Guest guest]

This is in response to Marcie's email regarding bedtime.

I personally DO NOT think that baby's are capable of

'manipulating'. That is a very adult/complex method of

thinking and babies are more real than that. Your baby

was obviously having a rough night (teething, gassy, lonely,

etc.) and parenting does not end at " bedtime " . I also don't

believe baby's throw " fits " - they have one method of

communicating and that is crying. I notice my son's cries

are different when he's hungry (which he rarely gets to as

I anticipate his needs), when he's in pain, when he wants to

be held and when his feelings are hurt.

Please remember to put yourself in your baby's 'shoes' and

go to him/her when she cries. The only habit your baby will

form is trusting that you are there when he/she needs you.

My 2 cents,

Sherri

Vaccinationsonelist wrote:

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

[Guest guest]

> I've been taking Meth for 3 months now and I've had no side effects. I

> started at 10.5 mg and within 6 weeks was on 12.5 and the pain is still

there

> along with the swelling and sausaging in my joints. Like I said not

> everything works the same for every person who takes it.

[ ] Digest Number 317

Hello,

I am going to ask a question that I have thought about from time to time

over the last few years. I wonder if those of you taking metho have thought

about any correlation between not having any side effects from it and it not

helping the arthritis. I have been taking it for 1 1/2 years ( along with

other meds) and it hasn't helped me at all. Also, I haven't had any side

effects from it. I have wondered if this is relative to each other? Thought

provoking, eh? I wonder if those that it does help have side effects? I've

wondered if it is " doing anything " inside my body or just being excreted?

What do you all think about this?

[Guest guest]

> May I ask you something, I read about MTX and what I read said you needed

to

> stay in a dr.s office one half hour after the injection due to reactions,

Hello, I wonder if you are mixed up and mean gold? I have been on metho and

have never had to stay for 1/2 hr after the injections, but when I first

started gold injections I had to stay for 15 minutes after to watch for

reactions. This was probably for the first 4 injections or so.

[Guest guest]

No, actually I read this on a site, it scared me, I automatically take on

the symptoms and metho made me feel like a yard dog, I didn't feel this bad

with what I had.

From: The Fergus' <akfergus@...>

< onelist>

Sent: Thursday, October 28, 1999 8:44 AM

Subject: Re: [ ] Digest Number 317

> From: " The Fergus' " <akfergus@...>

>

> > May I ask you something, I read about MTX and what I read said you

needed

> to

> > stay in a dr.s office one half hour after the injection due to

reactions,

>

> Hello, I wonder if you are mixed up and mean gold? I have been on metho

and

> have never had to stay for 1/2 hr after the injections, but when I first

> started gold injections I had to stay for 15 minutes after to watch for

> reactions. This was probably for the first 4 injections or so.

>

> > Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

[Guest guest]

Rhonda

Thanks for all the personal info about what you have found works and what

didn't. I know it took time to share it all but it was very informative.

P.s. I am sorry to say I am starting to skip the writings from Ken Boychuck,

they are too hard to read when you are used to conventional spelling.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

I would like to comment on two messages regarding AMAS blood tests.

First:

I have just had my sixth AMAS blood test run and am awaiting the results.

My understanding of the AMAS test is that it tells if there is cancer in the

body, but not where it is located. If the AMAS test indicated cancer is

present, then other tests must be used to locate it.

>Message: 2

> Date: Mon, 24 Apr 2000 07:15:34 -0700

> From: " E " <lwilson@...>

>Subject: Re: AMAS BLOOD TEST

>

>Have had bladder cancer for years. Now problem in different area. Have need

>of test to find if two tumors are cancer. Dotors have taken a wait and see

>position. Am not a wait and see type person. Found with cat scan. Have been

>told no test available only sugury. Heard of AMAS test. Any experience or

>information greatfully appreciated.

>

>Ron

>

>

> [ ] AMAS BLOOD TEST

>

>

>> I recently had a blood test called the AMAS. The results were good -

>normal.

>> I don't completely understand this test. I have breast cancer and have

>been

>> in treatment for 7 weeks. Does this mean I no longer have cancer for

sure?

>> Debbie

>>

>>

SECOND:

Both my herbalist & D.O. have recommended repeated AMAS tests for me. They

wanted at least 2 in-a-row with " normal " results.

[Guest guest]

Steph: Do you use reinforcers during probes? If not, HOW to you do a probe

when the kid won't do anything (not even LOOK at flashcards) without a

reinforcer??? Thanks, am

>The idea of a probe is to test the skill, it is not meant as a teaching

>trial. You present the SD, and then record whether or not the response was

>correct. The amount of probing you do depends on the child's rate of

>acquisition. If you feel that probing is unmanageable, divide up the

>targets

>and probe them on different days. Another idea is to just have a big

>stack

>of them and allot a certain amount of time for probing. The therapist

>accomplishes what they can in that amount of time and puts the probe sheets

>they have completed at the bottom of the pile. Probing should not take a

>lot

>of time away from teaching, it should be small in proportion to the rest of

>the session.

>

>Probing functions as a test, you have certain criteria before you no longer

>consider it a target but if a child gets something correct in a probe, it

>would be given less priority in a teaching session.

>

>Steph

>

_________________________________________________________________________

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[Guest guest]

Dear Lora:

In the " CBC " , depending on the details requested in the tests, the

RBC, or red blood cell count is usually 4-6,000. These are the available

red cells that your body has to carry oxygen to the cells. The

Hemoglobin and Hematocrit are for measuring how well the red cells are

carrying the oxygen, and other factors, in a simplistic definition. The

Hemoglobin, aka Hgb is usually 13-18 in women, and the Hematocrit, aka

Hct, usually is usually given as a percent of available red blood cells

and how well they are carrying the oxygen. Or, if you compare an

airplane, how many seats are actually filled up. The Hct is in the mid

to high 30's to high 50's.

Most women are usually anemic, and this is seen in the Hgb and Hct.

It is only when the RBCs are low without any reason, such as treatment,

that you worry about them. It is usually seen, whether high or low, as a

malfunction of the bone marrow and liver. Your Platelets are the ones

that are the " bandaids " used to stop bleeding in the body, and circulate

in the blood stream. Too little and you can technically bleed to death

because you can not " put enough fingers in the leaks in the dike " . Too

much and you could cause a " damming " effect, and blood may be stopped

from getting to important areas.

So, your " H & H " , which is your Hgb and Hct, is low, you only worry

about them if they go too high or too low, for no reason. Also in the

CBC, aka Complete Blood Count are many various types of white and red

blood cells that are all components of the body's ability to do it's

work. The absolute neutrophils, again a percentage, is a major measuring

device to stop therapy. The range of this count is usually 1,5-4,500.

So, it is only when you drop to less than 750, that you must look

carefully about continuing therapy.

Hope this helps, and good luck. Marty

[Guest guest]

Dear :

Yes hemolytic anemia is dangerous, and so is Leukemia, and many

other blood related diseases. But, someone with an H & H half of normal

may be weak, but, if the cause is from the medication, usually cutting

back will resolve that problem, or stopping for a week. But that is only

if you really have a disease that is not related to treatment. If it is

related, the issue is which is more detrimental, no treatment and seeing

what the disease will do?, or, seeing if the body responds to lower

doses? Marty

[Guest guest]

Tricia,

My son says the driving time for him from Raleigh to the DC area is 4 hours.

He does have a heavy foot, but it may give you an idea,

in Chapel Hill

S. I've slowed way down with 40 pounds (according to WWers) to lose

too. Is that the magic number?

C in C. H.

[Guest guest]

In a message dated 7/12/01 4:10:32 PM, BayardA@... writes:

<<Tricia,

My son says the driving time for him from Raleigh to the DC area is 4 hours.

He does have a heavy foot, but it may give you an idea,

in Chapel Hill>>

Yikes! Ok, thanks for letting me know!

Tricia in IL

[Guest guest]

Found an interesting article about omega 3 oil.

This address http://www.chiro.org/places/ABSTRACTS/Life_in_the_Balance.html

Best Regards, Lorenzo

Join the CaveManFood list and eat like our ancestors.

CaveManFood-subscribe

Trapshooters Join this; trapshooter-subscribe

[Guest guest]

>

> My warning flags arise when anyone implies that a treatment always

> works.

>

> Devin

So do mine, and I am being treated with NAET. I don't think anything always

works for everyone. My practiotioner advises me to keep seeing my allergist

and keep using my meds, until we are sure the therapy has worked.

[Guest guest]

> ,

> What is hypoglycemea? He doesn't eat alot of sugar stuff..I don't like

> feeding him alot of fatty/sugary foods cause don't want him to have weight

> problems like me and dad..thanks for any information about hypoglycemea..take

> care,

> Sue..

>

Hi,

It's a condition where, due to the production of too much insulin, you

become agitated, headachy, unwell etc. There are many symptoms. Some people

get very ill. I've heard of a girl who ended up in a wheel chair.

It can be caused by other sweeteners, like honey. The american diet is full

of sugars, all kinds of them. When we travelled in the US in 99, we had a

hard time finding foods my little boy could tolerate. Everything contains

sugar. Just read the labels. Sugar has many names, like saccharose,

dextrose, glucose etc.

I'm not sure where you can find info in English, as I used to have a very

good book on this subject in Dutch. I'm sure that, if you do a search, you

can find more info on the internet.

Good luck

[Guest guest]

Hey Group:

I haven't been online as I should have. . . trying to enjoy my gold life. Now

I have over 278 emails, not to add the CML groups emails which carry up to 25

posts each.

Newbies, bear with us. . . I remember joining the other group just as a

difference of opinions was arising and out of that. . . emerged this group. I

almost left the group, but now I am a member of both. You, too, must read the

posts and ignore the unnecessary as I did; don't leave the group. Though we are

different and opinionated, there's a wealth of information available to you from

both groups. I'm glad that I stayed. . . hope you will also.

Take care, I have all you guys in my prayers.

" K "

" I AIN'T FINISHED YET " !!!

[Guest guest]

Here Here, I agree with ya Kay...

its a great group..and we might at times get snakey or have hard times

all in all...most of us are woman and i guess we have all different

moods at all different times of the month (just as well we dont live

in one house) - thankgod for hysterectomony's

susie leech

dx nov 2002

currently on no gleevec

>

[Guest guest]

>

> Hey Group:

>

> I haven't been online as I should have. . . trying to enjoy my

gold life. Now I have over 278 emails, not to add the CML groups

emails which carry up to 25 posts each.

>

> Newbies, bear with us. . . I remember joining the other group

just as a difference of opinions was arising and out of that. . .

emerged this group. I almost left the group, but now I am a member

of both. You, too, must read the posts and ignore the unnecessary as

I did; don't leave the group. Though we are different and

opinionated, there's a wealth of information available to you from

both groups. I'm glad that I stayed. . . hope you will also.

>

> Take care, I have all you guys in my prayers.

>

>

>

>

> " K "

> " I AIN'T FINISHED YET " !!!

>

>

>

Hello `K'

Thankyou for your reply. I am a little surprised by your message

suggesting to me not to leave the group because of the unnecessary

posts – and sharing with me how you were about to leave. I have read

quite a few posts and yes I have to admit I was saddened by the

bickering between CMLers and especially after reading your message I

looked into it a bit more, curious as to why you would say that to

me – As we all need the support here of one another and there will

be times of different opinions, but there is no need to have to have

the final word on a subject. It seemed to get a bit heated over the

Having blind faith in your doctor… I tell you I so much am leaning

on my doctor at the moment and reading what you wrote Tracey(and you

seem to have a very strong opinion from what I could pick up in the

posts)it shook me up a bit, as at the moment I am very scared. And

it seemed like a rift was happening between the group because of

some strong responses that I read in the posts. I am not too sure at

this stage that I want to be come a part of this group.

I do thankyou for the warm welcoming I received from some of you A

big thanks to Zavie for inviting me to the chat

Thankyou Tracey for the chat times, I will look into it as I work

odd hours.

Dx Jan 2006

>

[Guest guest]

> >

> > Hey Group:

> >

> > I haven't been online as I should have. . . trying to enjoy my

> gold life. Now I have over 278 emails, not to add the CML groups

> emails which carry up to 25 posts each.

> >

> > Newbies, bear with us. . . I remember joining the other group

> just as a difference of opinions was arising and out of that. . .

> emerged this group. I almost left the group, but now I am a member

> of both. You, too, must read the posts and ignore the unnecessary

as

> I did; don't leave the group. Though we are different and

> opinionated, there's a wealth of information available to you from

> both groups. I'm glad that I stayed. . . hope you will also.

> >

> > Take care, I have all you guys in my prayers.

> >

> >

> >

> >

> > " K "

> > " I AIN'T FINISHED YET " !!!

> >

> >

> >

> Hello `K'

> Thankyou for your reply. I am a little surprised by your message

> suggesting to me not to leave the group because of the

unnecessary

> posts – and sharing with me how you were about to leave. I have

read

> quite a few posts and yes I have to admit I was saddened by the

> bickering between CMLers and especially after reading your message

I

> looked into it a bit more, curious as to why you would say that to

> me – As we all need the support here of one another and there will

> be times of different opinions, but there is no need to have to

have

> the final word on a subject. It seemed to get a bit heated over

the

> Having blind faith in your doctor… I tell you I so much am leaning

> on my doctor at the moment and reading what you wrote Tracey(and

you

> seem to have a very strong opinion from what I could pick up in

the

> posts)it shook me up a bit, as at the moment I am very scared. And

> it seemed like a rift was happening between the group because of

> some strong responses that I read in the posts. I am not too sure

at

> this stage that I want to be come a part of this group.

>

> I do thankyou for the warm welcoming I received from some of you

A

> big thanks to Zavie for inviting me to the chat

> Thankyou Tracey for the chat times, I will look into it as I work

> odd hours.

>

>

> Dx Jan 2006

Hi ,

im susie leech from downunder. Im sorry you feel like this michelle

and im sadden for you that at this time of need when you need to

turn to someone you you cant even turn to a cml group!

You said Zavie made contact with you..Ask him any questions, please

dont attempt to walk this lonely road on your own.

id love to chat and get to know you..where are you from? how old are

you and do you have a family..?

Im hoping we see you in chat soon as i often try and join them..

susie leech

dx Nov 2002

currently off Gleevec

>

> >

>

[Guest guest]

Hi ,

I too am a newbie from Melbourne, Australia. I was diagnosed November 2005,

currently on 800mg Glivec, and agree with what Susie has written. Yes, speak

with Zavie, he knows heaps and is very kind and considerate to newbies like us.

I spoke to him myself only a few days ago and he put several ideas in my head

and I felt good talking with him.

Jackie

Re: [ ] Digest Number 317

> >

> > Hey Group:

> >

> > I haven't been online as I should have. . . trying to enjoy my

> gold life. Now I have over 278 emails, not to add the CML groups

> emails which carry up to 25 posts each.

> >

> > Newbies, bear with us. . . I remember joining the other group

> just as a difference of opinions was arising and out of that. . .

> emerged this group. I almost left the group, but now I am a member

> of both. You, too, must read the posts and ignore the unnecessary

as

> I did; don't leave the group. Though we are different and

> opinionated, there's a wealth of information available to you from

> both groups. I'm glad that I stayed. . . hope you will also.

> >

> > Take care, I have all you guys in my prayers.

> >

> >

> >

> >

> > " K "

> > " I AIN'T FINISHED YET " !!!

> >

> >

> >

> Hello `K'

> Thankyou for your reply. I am a little surprised by your message

> suggesting to me not to leave the group because of the

unnecessary

> posts - and sharing with me how you were about to leave. I have

read

> quite a few posts and yes I have to admit I was saddened by the

> bickering between CMLers and especially after reading your message

I

> looked into it a bit more, curious as to why you would say that to

> me - As we all need the support here of one another and there will

> be times of different opinions, but there is no need to have to

have

> the final word on a subject. It seemed to get a bit heated over

the

> Having blind faith in your doctor. I tell you I so much am leaning

> on my doctor at the moment and reading what you wrote Tracey(and

you

> seem to have a very strong opinion from what I could pick up in

the

> posts)it shook me up a bit, as at the moment I am very scared. And

> it seemed like a rift was happening between the group because of

> some strong responses that I read in the posts. I am not too sure

at

> this stage that I want to be come a part of this group.

>

> I do thankyou for the warm welcoming I received from some of you

A

> big thanks to Zavie for inviting me to the chat

> Thankyou Tracey for the chat times, I will look into it as I work

> odd hours.

>

>

> Dx Jan 2006

Hi ,

im susie leech from downunder. Im sorry you feel like this michelle

and im sadden for you that at this time of need when you need to

turn to someone you you cant even turn to a cml group!

You said Zavie made contact with you..Ask him any questions, please

dont attempt to walk this lonely road on your own.

id love to chat and get to know you..where are you from? how old are

you and do you have a family..?

Im hoping we see you in chat soon as i often try and join them..

susie leech

dx Nov 2002

currently off Gleevec

>

> >

>

[Guest guest]

Hey Jackie

We are CML twins! I was diagnosed in November 2005 too. How come

you are on 800mg? When did you start Gleevec? How often are you

testing and what tests are you having?

I am from Cape Town South Africa so we are also somewhat out of the

mainstream.

Jane

> >

> > --- In , IAintFinishedYet <kttweety@>

wrote:

> > >

> > > Hey Group:

> > >

> > > I haven't been online as I should have. . . trying to

enjoy my

> > gold life. Now I have over 278 emails, not to add the CML

groups

> > emails which carry up to 25 posts each.

> > >

> > > Newbies, bear with us. . . I remember joining the other

group

> > just as a difference of opinions was arising and out of

that. . .

> > emerged this group. I almost left the group, but now I am a

member

> > of both. You, too, must read the posts and ignore the

unnecessary

> as

> > I did; don't leave the group. Though we are different and

> > opinionated, there's a wealth of information available to you

from

> > both groups. I'm glad that I stayed. . . hope you will also.

> > >

> > > Take care, I have all you guys in my prayers.

> > >

> > >

> > >

> > >

> > > " K "

> > > " I AIN'T FINISHED YET " !!!

> > >

> > >

> > >

> > Hello `K'

> > Thankyou for your reply. I am a little surprised by your

message

> > suggesting to me not to leave the group because of the

> unnecessary

> > posts - and sharing with me how you were about to leave. I

have

> read

> > quite a few posts and yes I have to admit I was saddened by

the

> > bickering between CMLers and especially after reading your

message

> I

> > looked into it a bit more, curious as to why you would say

that to

> > me - As we all need the support here of one another and there

will

> > be times of different opinions, but there is no need to have

to

> have

> > the final word on a subject. It seemed to get a bit heated

over

> the

> > Having blind faith in your doctor. I tell you I so much am

leaning

> > on my doctor at the moment and reading what you wrote Tracey

(and

> you

> > seem to have a very strong opinion from what I could pick up

in

> the

> > posts)it shook me up a bit, as at the moment I am very scared.

And

> > it seemed like a rift was happening between the group because

of

> > some strong responses that I read in the posts. I am not too

sure

> at

> > this stage that I want to be come a part of this group.

> >

> > I do thankyou for the warm welcoming I received from some of

you

> A

> > big thanks to Zavie for inviting me to the chat

> > Thankyou Tracey for the chat times, I will look into it as I

work

> > odd hours.

> >

> >

> > Dx Jan 2006

>

> Hi ,

> im susie leech from downunder. Im sorry you feel like this

michelle

> and im sadden for you that at this time of need when you need to

> turn to someone you you cant even turn to a cml group!

> You said Zavie made contact with you..Ask him any questions,

please

> dont attempt to walk this lonely road on your own.

> id love to chat and get to know you..where are you from? how old

are

> you and do you have a family..?

> Im hoping we see you in chat soon as i often try and join them..

>

> susie leech

> dx Nov 2002

> currently off Gleevec

>

>

> >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Hi Jane :-)

Yes, I was put on 800mg Glivec beginning December 2005 because my wbc was very

high but so far my haemotologist says that I am reacting 'beautifully'.

I had a bone marrow biopsy in November when I was diagnosed and am due for

another in a couple of weeks time, hopefully that will be the last for another 6

months to a year. I am now having blood tests every 2-3 weeks, but at the start

it was every week.

My blood count stabilised after four weeks and I'm hoping to see good results

from now.

I have no side effects apart from a little diarrhoea which is tolerable so I

thank goodness for this.

How are you coping with the Glivec and what about tests?

Hugs,

Jackie

Re: [ ] Digest Number 317

Hey Jackie

We are CML twins! I was diagnosed in November 2005 too. How come

you are on 800mg? When did you start Gleevec? How often are you

testing and what tests are you having?

I am from Cape Town South Africa so we are also somewhat out of the

mainstream.

Jane

> > >

> > > Hey Group:

> > >

> > > I haven't been online as I should have. . . trying to

enjoy my

> > gold life. Now I have over 278 emails, not to add the CML

groups

> > emails which carry up to 25 posts each.

> > >

> > > Newbies, bear with us. . . I remember joining the other

group

> > just as a difference of opinions was arising and out of

that. . .

> > emerged this group. I almost left the group, but now I am a

member

> > of both. You, too, must read the posts and ignore the

unnecessary

> as

> > I did; don't leave the group. Though we are different and

> > opinionated, there's a wealth of information available to you

from

> > both groups. I'm glad that I stayed. . . hope you will also.

> > >

> > > Take care, I have all you guys in my prayers.

> > >

> > >

> > >

> > >

> > > " K "

> > > " I AIN'T FINISHED YET " !!!

> > >

> > >

> > >

> > Hello `K'

> > Thankyou for your reply. I am a little surprised by your

message

> > suggesting to me not to leave the group because of the

> unnecessary

> > posts - and sharing with me how you were about to leave. I

have

> read

> > quite a few posts and yes I have to admit I was saddened by

the

> > bickering between CMLers and especially after reading your

message

> I

> > looked into it a bit more, curious as to why you would say

that to

> > me - As we all need the support here of one another and there

will

> > be times of different opinions, but there is no need to have

to

> have

> > the final word on a subject. It seemed to get a bit heated

over

> the

> > Having blind faith in your doctor. I tell you I so much am

leaning

> > on my doctor at the moment and reading what you wrote Tracey

(and

> you

> > seem to have a very strong opinion from what I could pick up

in

> the

> > posts)it shook me up a bit, as at the moment I am very scared.

And

> > it seemed like a rift was happening between the group because

of

> > some strong responses that I read in the posts. I am not too

sure

> at

> > this stage that I want to be come a part of this group.

> >

> > I do thankyou for the warm welcoming I received from some of

you

> A

> > big thanks to Zavie for inviting me to the chat

> > Thankyou Tracey for the chat times, I will look into it as I

work

> > odd hours.

> >

> >

> > Dx Jan 2006

>

> Hi ,

> im susie leech from downunder. Im sorry you feel like this

michelle

> and im sadden for you that at this time of need when you need to

> turn to someone you you cant even turn to a cml group!

> You said Zavie made contact with you..Ask him any questions,

please

> dont attempt to walk this lonely road on your own.

> id love to chat and get to know you..where are you from? how old

are

> you and do you have a family..?

> Im hoping we see you in chat soon as i often try and join them..

>

> susie leech

> dx Nov 2002

> currently off Gleevec

>

>

> >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Hey Jackie

OK - I understand why 800mg - I was put on Hydroxy Urea first to get

the wbc down. Got my results yesterday after my first blood test on

Gleevec - to quote my doctor " everything is normal " . What the hell

does that mean? I keep asking her for the numbers but she is not

keen to tell me. Gonna give her 1 more chance and then I am going

Oncologist shopping!

Aside from feeling bone tired, I can honestly say I have no other

side effects at all - so I guess that is a happy thing. I just hope

this stuff is working that's all!

I will have another test 28th Feb and then we have to talk about the

next bone marrow biopsy because my medical fund has only authorised3

months Gleevec so far so I have to prove to them that I am

responding well before they wil authorise the next 3 months.

Are you guys having a good summer? It is so hot here at the moment

I feel like I am melting. Thank goodness for the pool.

Talk soon

Jane

> Hi Jane :-)

>

> Yes, I was put on 800mg Glivec beginning December 2005 because my

wbc was very high but so far my haemotologist says that I am

reacting 'beautifully'.

>

> I had a bone marrow biopsy in November when I was diagnosed and am

due for another in a couple of weeks time, hopefully that will be

the last for another 6 months to a year. I am now having blood

tests every 2-3 weeks, but at the start it was every week.

>

> My blood count stabilised after four weeks and I'm hoping to see

good results from now.

>

> I have no side effects apart from a little diarrhoea which is

tolerable so I thank goodness for this.

>

> How are you coping with the Glivec and what about tests?

>

> Hugs,

> Jackie

>

>

> Re: [ ] Digest Number 317

>

>

> Hey Jackie

>

> We are CML twins! I was diagnosed in November 2005 too. How

come

> you are on 800mg? When did you start Gleevec? How often are

you

> testing and what tests are you having?

>

> I am from Cape Town South Africa so we are also somewhat out of

the

> mainstream.

>

> Jane

>

>

> > > >

> > > > Hey Group:

> > > >

> > > > I haven't been online as I should have. . . trying to

> enjoy my

> > > gold life. Now I have over 278 emails, not to add the CML

> groups

> > > emails which carry up to 25 posts each.

> > > >

> > > > Newbies, bear with us. . . I remember joining the

other

> group

> > > just as a difference of opinions was arising and out of

> that. . .

> > > emerged this group. I almost left the group, but now I am

a

> member

> > > of both. You, too, must read the posts and ignore the

> unnecessary

> > as

> > > I did; don't leave the group. Though we are different and

> > > opinionated, there's a wealth of information available to

you

> from

> > > both groups. I'm glad that I stayed. . . hope you will

also.

> > > >

> > > > Take care, I have all you guys in my prayers.

> > > >

> > > >

> > > >

> > > >

> > > > " K "

> > > > " I AIN'T FINISHED YET " !!!

> > > >

> > > >

> > > >

> > > Hello `K'

> > > Thankyou for your reply. I am a little surprised by your

> message

> > > suggesting to me not to leave the group because of the

> > unnecessary

> > > posts - and sharing with me how you were about to leave. I

> have

> > read

> > > quite a few posts and yes I have to admit I was saddened

by

> the

> > > bickering between CMLers and especially after reading your

> message

> > I

> > > looked into it a bit more, curious as to why you would say

> that to

> > > me - As we all need the support here of one another and

there

> will

> > > be times of different opinions, but there is no need to

have

> to

> > have

> > > the final word on a subject. It seemed to get a bit heated

> over

> > the

> > > Having blind faith in your doctor. I tell you I so much am

> leaning

> > > on my doctor at the moment and reading what you wrote

Tracey

> (and

> > you

> > > seem to have a very strong opinion from what I could pick

up

> in

> > the

> > > posts)it shook me up a bit, as at the moment I am very

scared.

> And

> > > it seemed like a rift was happening between the group

because

> of

> > > some strong responses that I read in the posts. I am not

too

> sure

> > at

> > > this stage that I want to be come a part of this group.

> > >

> > > I do thankyou for the warm welcoming I received from some

of

> you

> > A

> > > big thanks to Zavie for inviting me to the chat

> > > Thankyou Tracey for the chat times, I will look into it as

I

> work

> > > odd hours.

> > >

> > >

> > > Dx Jan 2006

> >

> > Hi ,

> > im susie leech from downunder. Im sorry you feel like this

> michelle

> > and im sadden for you that at this time of need when you

need to

> > turn to someone you you cant even turn to a cml group!

> > You said Zavie made contact with you..Ask him any questions,

> please

> > dont attempt to walk this lonely road on your own.

> > id love to chat and get to know you..where are you from? how

old

> are

> > you and do you have a family..?

> > Im hoping we see you in chat soon as i often try and join

them..

> >

> > susie leech

> > dx Nov 2002

> > currently off Gleevec

> >

> >

> > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jane,

I was originally going to go on 600mg which seems the standard for here, but

then because my wbc shot up in a week from 300 to 370 he got permission from

Medicare to put me on 800mg and actually I'm glad he did because the results are

showing. I've also spoken to a good friend here who has CML and she too

believes that he made the right decision. He didn't put me on Hydroxy Urea

because my counts were high on diagnosis and wanted to give Glivec the best

possible chance for me.

From what I understand a 'normal' wbc is anything in the region of 4 and 10

(4,000 and 10,000). As soon as I hit the '10' mark my blood was declared as

'normal'. Since then I have seen my charts at the clinic which I attend and my

white cells were still stabilising within the normal brackets and I have felt

great in myself for some time now thank goodness because quite honestly I was

beginning to feel really shitty.

I also had a massive spleen (at least it was to me!) it was 23cm. Last time I

went to clinic it was 4cm and I could feel it, now I cannot feel it at all so

I'm hoping on Monday to hear that its as it should be.

You must ask your doctor to show you the blood results, even if you don't

understand them. Ask her to explain it to you because you should be aware of

this at least. Other stuff leave until later when you can understand things a

little more. Also read as much as you can without overdoing it. In December I

read heaps of stuff from the Net but I became bogged down with it, your brain

can't take everything all at once. I have now started asking a few people what

things mean and there some good people on this group who can explain things to

you simply to help you understand.

You say that you'll have another biopsy in 3 months.... yes like me. My three

months is due this next week and though I'm dreading having the damned thing

done I want to see some real results this time. How often are you having blood

tests?

I too am bone tired most of the time but I don't care about that, I have no

other real real real side effects apart from some diarrhoea and puffy eyes

because in myself I feel great. You see I'm comparing myself to how I felt in

the last couple of months before I went on Glivec and boy did I feel quite

terrible :-) I also feel the cold more now which has become a joke in this

house.

The summer in Melbourne is up and down. Today it is nice and warm and my

daughter has been for a swim in the pool, she loves it.

Talk soon,

Hugs,

Jackie

Re: [ ] Digest Number 317

>

>

> Hey Jackie

>

> We are CML twins! I was diagnosed in November 2005 too. How

come

> you are on 800mg? When did you start Gleevec? How often are

you

> testing and what tests are you having?

>

> I am from Cape Town South Africa so we are also somewhat out of

the

> mainstream.

>

> Jane

>

>

> > > >

> > > > Hey Group:

> > > >

> > > > I haven't been online as I should have. . . trying to

> enjoy my

> > > gold life. Now I have over 278 emails, not to add the CML

> groups

> > > emails which carry up to 25 posts each.

> > > >

> > > > Newbies, bear with us. . . I remember joining the

other

> group

> > > just as a difference of opinions was arising and out of

> that. . .

> > > emerged this group. I almost left the group, but now I am

a

> member

> > > of both. You, too, must read the posts and ignore the

> unnecessary

> > as

> > > I did; don't leave the group. Though we are different and

> > > opinionated, there's a wealth of information available to

you

> from

> > > both groups. I'm glad that I stayed. . . hope you will

also.

> > > >

> > > > Take care, I have all you guys in my prayers.

> > > >

> > > >

> > > >

> > > >

> > > > " K "

> > > > " I AIN'T FINISHED YET " !!!

> > > >

> > > >

> > > >

> > > Hello `K'

> > > Thankyou for your reply. I am a little surprised by your

> message

> > > suggesting to me not to leave the group because of the

> > unnecessary

> > > posts - and sharing with me how you were about to leave. I

> have

> > read

> > > quite a few posts and yes I have to admit I was saddened

by

> the

> > > bickering between CMLers and especially after reading your

> message

> > I

> > > looked into it a bit more, curious as to why you would say

> that to

> > > me - As we all need the support here of one another and

there

> will

> > > be times of different opinions, but there is no need to

have

> to

> > have

> > > the final word on a subject. It seemed to get a bit heated

> over

> > the

> > > Having blind faith in your doctor. I tell you I so much am

> leaning

> > > on my doctor at the moment and reading what you wrote

Tracey

> (and

> > you

> > > seem to have a very strong opinion from what I could pick

up

> in

> > the

> > > posts)it shook me up a bit, as at the moment I am very

scared.

> And

> > > it seemed like a rift was happening between the group

because

> of

> > > some strong responses that I read in the posts. I am not

too

> sure

> > at

> > > this stage that I want to be come a part of this group.

> > >

> > > I do thankyou for the warm welcoming I received from some

of

> you

> > A

> > > big thanks to Zavie for inviting me to the chat

> > > Thankyou Tracey for the chat times, I will look into it as

I

> work

> > > odd hours.

> > >

> > >

> > > Dx Jan 2006

> >

> > Hi ,

> > im susie leech from downunder. Im sorry you feel like this

> michelle

> > and im sadden for you that at this time of need when you

need to

> > turn to someone you you cant even turn to a cml group!

> > You said Zavie made contact with you..Ask him any questions,

> please

> > dont attempt to walk this lonely road on your own.

> > id love to chat and get to know you..where are you from? how

old

> are

> > you and do you have a family..?

> > Im hoping we see you in chat soon as i often try and join

them..

> >

> > susie leech

> > dx Nov 2002

> > currently off Gleevec

> >

> >

> > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >