hi guys

[Guest guest]

O!!! YIPPEEE!!!

Number 1249 in the Zero Club

Zavie

_____

From: [mailto: ] On Behalf Of

comkick@...

Sent: March-06-09 7:02 AM

Subject: [ ] Hi Guys

This is the fist time I have posted so here goes.

I was Diagnosed on the 9th of October 2008 with CML a date I will

never forget.

At Dianosis I was 113.512, WBC 50000 and was very aneamic with my

haemoglobin down at 8.2 when it should have been 13.0+.

On Spirit trial which is 800mg V 400mg I was randomised to 800mg

twice daily. Other meds Hydroxyurea 1st week + Alluprinol and 250mg Ferrous

Sulphate(Iron) 2 times per day indefinately

I had a breathless episode while I was on holiday and found it

difficult to walk 200 metres I had considered going to the hospital

but I have never been one for them. I decided that I would book an

appointment with my GP when I got home.

He believed that it was an asthama attack but gave me some

antibiotics just in case, and at the same time he noticed that

I was very pale and I did mention that I was feeling a little bit knackered,

so he ordered a blood test which came back with an

Ellevated WBC of 26000 which indicated a infection or so he thought.

He then said lets play it safe and give you an overhaul so that was

a CBC, Endoscopy, Ultrasound, Xray and more, everthing came back ok apart

from my WBC which was 35000, what's going on I feel fine this started to

worry me a bit.

The haemotology department said we will do a BMB of course not being

familiar with that term I thought another blood test, but then when

they explained it to me my respons was you " want to do what " I hope I don't

have to do that again.

Then the call came can you come into the hospital to discuss your results

first thought Oh Crap! so in I went sat down my consultant

his words were it's bad news you have CML that was like being hit by a

freight train, but after what seemed to be an eternity he then said

the good news is it's treatable.

So the weekly visits began as you guys know waiting for the next

result is nerve wracking. On 9th January 2009 I had my first 3 month PCR

test and remebering the baseline was 113,512. My appointment was then set at

six weeks so on Tuesday of this week I went to the hospital

talk about aprehensive.

My consultant said as you remember you were 113,512 and the result from the

PCR which is done at the Hammersmith Hospital London is 1.183 not

being a PCR wiz I said is that good he said it's excellent you have achieved

a 2 log reduction but he didn't mention CCR which is the next milestone.

I surfed the net looking for 2 log and PCR and came across a post from Zavie

, I sent my results to Zavie and asked him if this was CCR

and it was and Zavie has now offered to give me a membership to the zero

club, I find this unreal all in three months. Thank you Zavie for your help

and advice.

I was lucky but I guess it shows 800mg has a profound effect but my triumph

in reaching CCR will only to me be a triumph when we all make it I will be

offering advice and support to all those who are newly diagnosed as many

helped me.

Next stop 3 log reduction but I will still take every day as it comes

will post next results all the best

Mark

[Guest guest]

>

> This is the fist time I have posted so here goes.

>

> I was Diagnosed on the 9th of October 2008 with CML a date I will

> never forget.

>

> At Dianosis I was 113.512, WBC 50000 and was very aneamic with my haemoglobin

down at 8.2 when it should have been 13.0+.

>

> On Spirit trial which is 800mg V 400mg I was randomised to 800mg

> twice daily. Other meds Hydroxyurea 1st week + Alluprinol and 250mg Ferrous

Sulphate(Iron) 2 times per day indefinately

>

> I had a breathless episode while I was on holiday and found it

> difficult to walk 200 metres I had considered going to the hospital

> but I have never been one for them. I decided that I would book an appointment

with my GP when I got home.

>

> He believed that it was an asthama attack but gave me some

> antibiotics just in case, and at the same time he noticed that

> I was very pale and I did mention that I was feeling a little bit knackered,

so he ordered a blood test which came back with an

> Ellevated WBC of 26000 which indicated a infection or so he thought.

>

> He then said lets play it safe and give you an overhaul so that was

> a CBC, Endoscopy, Ultrasound, Xray and more, everthing came back ok apart from

my WBC which was 35000, what's going on I feel fine this started to worry me a

bit.

>

> The haemotology department said we will do a BMB of course not being familiar

with that term I thought another blood test, but then when

> they explained it to me my respons was you " want to do what " I hope I don't

have to do that again.

>

> Then the call came can you come into the hospital to discuss your results

first thought Oh Crap! so in I went sat down my consultant

> his words were it's bad news you have CML that was like being hit by a freight

train, but after what seemed to be an eternity he then said

> the good news is it's treatable.

>

> So the weekly visits began as you guys know waiting for the next

> result is nerve wracking. On 9th January 2009 I had my first 3 month PCR test

and remebering the baseline was 113,512. My appointment was then set at six

weeks so on Tuesday of this week I went to the hospital

> talk about aprehensive.

>

> My consultant said as you remember you were 113,512 and the result from the

PCR which is done at the Hammersmith Hospital London is 1.183 not

> being a PCR wiz I said is that good he said it's excellent you have achieved a

2 log reduction but he didn't mention CCR which is the next milestone.

>

> I surfed the net looking for 2 log and PCR and came across a post from Zavie

, I sent my results to Zavie and asked him if this was CCR

> and it was and Zavie has now offered to give me a membership to the zero club,

I find this unreal all in three months. Thank you Zavie for your help and

advice.

>

> I was lucky but I guess it shows 800mg has a profound effect but my triumph in

reaching CCR will only to me be a triumph when we all make it I will be offering

advice and support to all those who are newly diagnosed as many helped me.

>

> Next stop 3 log reduction but I will still take every day as it comes

> will post next results all the best

>

> Mark

>

Congratulations Mark! Zavie is amazing keeping track of all the zero clubbers

isn't he?

[Guest guest]

Congrats from another Canadian.

Eva in town.

From:

Sent: Friday, March 06, 2009 8:30 AM

Subject: [ ] Re: Hi Guys

>

> This is the fist time I have posted so here goes.

>

> I was Diagnosed on the 9th of October 2008 with CML a date I will

> never forget.

>

> At Dianosis I was 113.512, WBC 50000 and was very aneamic with my haemoglobin

down at 8.2 when it should have been 13.0+.

>

> On Spirit trial which is 800mg V 400mg I was randomised to 800mg

> twice daily. Other meds Hydroxyurea 1st week + Alluprinol and 250mg Ferrous

Sulphate(Iron) 2 times per day indefinately

>

> I had a breathless episode while I was on holiday and found it

> difficult to walk 200 metres I had considered going to the hospital

> but I have never been one for them. I decided that I would book an appointment

with my GP when I got home.

>

> He believed that it was an asthama attack but gave me some

> antibiotics just in case, and at the same time he noticed that

> I was very pale and I did mention that I was feeling a little bit knackered,

so he ordered a blood test which came back with an

> Ellevated WBC of 26000 which indicated a infection or so he thought.

>

> He then said lets play it safe and give you an overhaul so that was

> a CBC, Endoscopy, Ultrasound, Xray and more, everthing came back ok apart from

my WBC which was 35000, what's going on I feel fine this started to worry me a

bit.

>

> The haemotology department said we will do a BMB of course not being familiar

with that term I thought another blood test, but then when

> they explained it to me my respons was you " want to do what " I hope I don't

have to do that again.

>

> Then the call came can you come into the hospital to discuss your results

first thought Oh Crap! so in I went sat down my consultant

> his words were it's bad news you have CML that was like being hit by a freight

train, but after what seemed to be an eternity he then said

> the good news is it's treatable.

>

> So the weekly visits began as you guys know waiting for the next

> result is nerve wracking. On 9th January 2009 I had my first 3 month PCR test

and remebering the baseline was 113,512. My appointment was then set at six

weeks so on Tuesday of this week I went to the hospital

> talk about aprehensive.

>

> My consultant said as you remember you were 113,512 and the result from the

PCR which is done at the Hammersmith Hospital London is 1.183 not

> being a PCR wiz I said is that good he said it's excellent you have achieved a

2 log reduction but he didn't mention CCR which is the next milestone.

>

> I surfed the net looking for 2 log and PCR and came across a post from Zavie

, I sent my results to Zavie and asked him if this was CCR

> and it was and Zavie has now offered to give me a membership to the zero club,

I find this unreal all in three months. Thank you Zavie for your help and

advice.

>

> I was lucky but I guess it shows 800mg has a profound effect but my triumph in

reaching CCR will only to me be a triumph when we all make it I will be offering

advice and support to all those who are newly diagnosed as many helped me.

>

> Next stop 3 log reduction but I will still take every day as it comes

> will post next results all the best

>

> Mark

>

Congratulations Mark! Zavie is amazing keeping track of all the zero clubbers

isn't he?

[Guest guest]

Hi Mark: Welcome to our group. It can be so overwhelming in the beginning.

All of us can still remember our original diagnosis and day and year. I hope

you find you get what your looking for on here. IT is so good to talk to

someone who will understand exactly what your going through. There are a lot of

new people like you, and lot of old timers that have been living with CML. Take

one Day at a Time.

Suzzie

[Guest guest]

>

> Hi Mark: Welcome to our group. It can be so overwhelming in the beginning.

All of us can still remember our original diagnosis and day and year. I hope

you find you get what your looking for on here. IT is so good to talk to

someone who will understand exactly what your going through. There are a lot of

new people like you, and lot of old timers that have been living with CML. Take

one Day at a Time.

> Suzzie

>

Hi Suzzie,

Your absolutely right the first few months is hard mentally to adapt, but after

a while when you learn more about CML and the fact it is now treatable, and

there are other options it does get easier.

I think the point for me was the results of my first PCR, but now I know all is

well with a good result it's a lot of your shoulders, but as you said one day at

a time.

Mark

[Guest guest]

> >

> > This is the fist time I have posted so here goes.

> >

> > I was Diagnosed on the 9th of October 2008 with CML a date I will

> > never forget.

> >

> > At Dianosis I was 113.512, WBC 50000 and was very aneamic with my

haemoglobin down at 8.2 when it should have been 13.0+.

> >

> > On Spirit trial which is 800mg V 400mg I was randomised to 800mg

> > twice daily. Other meds Hydroxyurea 1st week + Alluprinol and 250mg Ferrous

Sulphate(Iron) 2 times per day indefinately

> >

> > I had a breathless episode while I was on holiday and found it

> > difficult to walk 200 metres I had considered going to the hospital

> > but I have never been one for them. I decided that I would book an

appointment with my GP when I got home.

> >

> > He believed that it was an asthama attack but gave me some

> > antibiotics just in case, and at the same time he noticed that

> > I was very pale and I did mention that I was feeling a little bit knackered,

so he ordered a blood test which came back with an

> > Ellevated WBC of 26000 which indicated a infection or so he thought.

> >

> > He then said lets play it safe and give you an overhaul so that was

> > a CBC, Endoscopy, Ultrasound, Xray and more, everthing came back ok apart

from my WBC which was 35000, what's going on I feel fine this started to worry

me a bit.

> >

> > The haemotology department said we will do a BMB of course not being

familiar with that term I thought another blood test, but then when

> > they explained it to me my respons was you " want to do what " I hope I don't

have to do that again.

> >

> > Then the call came can you come into the hospital to discuss your results

first thought Oh Crap! so in I went sat down my consultant

> > his words were it's bad news you have CML that was like being hit by a

freight train, but after what seemed to be an eternity he then said

> > the good news is it's treatable.

> >

> > So the weekly visits began as you guys know waiting for the next

> > result is nerve wracking. On 9th January 2009 I had my first 3 month PCR

test and remebering the baseline was 113,512. My appointment was then set at six

weeks so on Tuesday of this week I went to the hospital

> > talk about aprehensive.

> >

> > My consultant said as you remember you were 113,512 and the result from the

PCR which is done at the Hammersmith Hospital London is 1.183 not

> > being a PCR wiz I said is that good he said it's excellent you have achieved

a 2 log reduction but he didn't mention CCR which is the next milestone.

> >

> > I surfed the net looking for 2 log and PCR and came across a post from Zavie

, I sent my results to Zavie and asked him if this was CCR

> > and it was and Zavie has now offered to give me a membership to the zero

club, I find this unreal all in three months. Thank you Zavie for your help and

advice.

> >

> > I was lucky but I guess it shows 800mg has a profound effect but my triumph

in reaching CCR will only to me be a triumph when we all make it I will be

offering advice and support to all those who are newly diagnosed as many helped

me.

> >

> > Next stop 3 log reduction but I will still take every day as it comes

> > will post next results all the best

> >

> > Mark

> >

> Congratulations Mark! Zavie is amazing keeping track of all the zero clubbers

isn't he?

>

Hi ,

Thankyou, Yes Zavie is an inspiration considering how far he has come and the

fact he is 70, and the fact he has given all of us CMLer's a goal if you like

the zero club.

Mark

[Guest guest]

Hi Angie,

Good to hear from you. I can't believe your son is going to be 18 already! Time sure seems to go by fast. About your son's transition, have you been able to contact your local MRDD? They might be able to assist you in finding workshop programs or daily living assistance. I'm not sure what else you could try being you live in a different county I don't know what services are available in your area. Your MRDD should be able to recommend services (hopefully.)

btw: What county are you living in? I'm not familiar with very many county programs.

Yours, n

In a message dated 8/25/09 8:44:26 AM Eastern Daylight Time, angelina8863@... writes:

hi there soory i havent been on here along time. i kinda expline here later, i need some help imgo about like how my son has autism and his bipolar on top. how do you go about like getting the thng before the reach 18 to get some type of not custody, but like you do for older poeople when they cant take care of there selfs??

i need to know how to do this b/c my son will not know how to mange or handle things in life with out adult superviosn help... he be 18 in nov.

thank guys .. angie

[Guest guest]

hi there soory i havent been on here along time. i kinda expline here later, i

need some help imgo about like how my son has autism and his bipolar on top.

how do you go about like getting the thng before the reach 18 to get some type

of not custody, but like you do for older poeople when they cant take care of

there selfs??

i need to know how to do this b/c my son will not know how to mange or handle

things in life with out adult superviosn help... he be 18 in nov.

thank guys .. angie

[Guest guest]

If any of our kids don't have the capacity to make and communicate decisions for themselves, they have to have a legal guardian by the age of 18. If your son is higher functioning, then the guardianship could be a partial one, whereby you and the court work out what decisions your son can make for himself. But if adequate ability isn't present, then you apply for a plenary guardianship, whereby you make all of the decisions for your son and you are responsible for him unless his abilities improve at which point the guardianship can be revoked. The forms for guardianship differ from state to state, but are generally not difficult to figure out. A doctor that knows your son well would fill out a court form that overviews his conditions and why a guardianship is necessary. There are notifications that are then sent, actually to your son and any relevant relatives or friends, to make sure that if anyone thinks that the guardianship isn't necessary, they are able to step forward. The paperwork is reviewed by the court, and during an in-person court date, if the evidence indicates that guardianship is necessary, your son would be adjudicated as incompetent (an unfortunate, but legal, word), and you would receive letters of office indicating that you are his legal guardian.

Most people go through an attorney, but you can also do this yourself, and sometimes the courts have a help desk or something similar to help you. Your first step would either be to contact the courthouse in your county to get the forms, or to contact an attorney in your area.

Carol

-----Original Message-----

From: angelina8863 <angelina8863@...>

Sent: Tue, Aug 25, 2009 8:43 am

Subject: [ ] hi guys

hi there soory i havent been on here along time. i kinda expline here later, i need some help imgo about like how my son has autism and his bipolar on top. how do you go about like getting the thng before the reach 18 to get some type of not custody, but like you do for older poeople when they cant take care of there selfs??

i need to know how to do this b/c my son will not know how to mange or handle things in life with out adult superviosn help... he be 18 in nov.

thank guys .. angie

[Guest guest]

Thank you for this information.

My son is only going on 10, but I highly doubt he will progressive enough to every be able to live and function on his own. This email was extremely helpful.

Thank you very much

Chrosniak

From: C6885@... <C6885@...>Subject: Re: [ ] hi guys Date: Tuesday, August 25, 2009, 11:24 AM

If any of our kids don't have the capacity to make and communicate decisions for themselves, they have to have a legal guardian by the age of 18. If your son is higher functioning, then the guardianship could be a partial one, whereby you and the court work out what decisions your son can make for himself. But if adequate ability isn't present, then you apply for a plenary guardianship, whereby you make all of the decisions for your son and you are responsible for him unless his abilities improve at which point the guardianship can be revoked. The forms for guardianship differ from state to state, but are generally not difficult to figure out. A doctor that knows your son well would fill out a court form that overviews his conditions and why a guardianship is necessary. There are notifications that are then sent, actually to your son and any relevant relatives or friends, to make sure that if anyone

thinks that the guardianship isn't necessary, they are able to step forward. The paperwork is reviewed by the court, and during an in-person court date, if the evidence indicates that guardianship is necessary, your son would be adjudicated as incompetent (an unfortunate, but legal, word), and you would receive letters of office indicating that you are his legal guardian.

Most people go through an attorney, but you can also do this yourself, and sometimes the courts have a help desk or something similar to help you. Your first step would either be to contact the courthouse in your county to get the forms, or to contact an attorney in your area.

Carol -----Original Message-----From: angelina8863 <angelina8863@ hotmail.com> @group s.comSent: Tue, Aug 25, 2009 8:43 amSubject: [ ] hi guys

hi there soory i havent been on here along time. i kinda expline here later, i need some help imgo about like how my son has autism and his bipolar on top. how do you go about like getting the thng before the reach 18 to get some type of not custody, but like you do for older poeople when they cant take care of there selfs??i need to know how to do this b/c my son will not know how to mange or handle things in life with out adult superviosn help... he be 18 in nov.thank guys .. angie

[Guest guest]

I'm glad that it helped:) I was so confused about the legal issues of disabilities, that I went back to school at night to study Health Law. Now I volunteer informally as an advocate in our area. But I was still nervous when our daughter turned 18 and it was our turn to stand in front of the judge. (Everyone was so nice, though - the court clerks all talked about their dogs so that our daughter, who thought the courthouse looked like a doctor's office, wouldn't be scared!)

-----Original Message-----

From: Chrosniak <nchrosniak@...>

Sent: Tue, Aug 25, 2009 11:45 am

Subject: Re: [ ] hi guys

Thank you for this information.

My son is only going on 10, but I highly doubt he will progressive enough to every be able to live and function on his own. This email was extremely helpful.

Thank you very much

Chrosniak

From: C6885aol <C6885aol>

Subject: Re: [ ] hi guys

Date: Tuesday, August 25, 2009, 11:24 AM

If any of our kids don't have the capacity to make and communicate decisions for themselves, they have to have a legal guardian by the age of 18. If your son is higher functioning, then the guardianship could be a partial one, whereby you and the court work out what decisions your son can make for himself. But if adequate ability isn't present, then you apply for a plenary guardianship, whereby you make all of the decisions for your son and you are responsible for him unless his abilities improve at which point the guardianship can be revoked. The forms for guardianship differ from state to state, but are generally not difficult to figure out. A doctor that knows your son well would fill out a court form that overviews his conditions and why a guardianship is necessary. There are notifications that are then sent, actually to your son and any relevant relatives or friends, to make sure that if anyone thinks that the guardianship isn't necessary, they are able to step forward. The paperwork is reviewed by the court, and during an in-person court date, if the evidence indicates that guardianship is necessary, your son would be adjudicated as incompetent (an unfortunate, but legal, word), and you would receive letters of office indicating that you are his legal guardian.

Most people go through an attorney, but you can also do this yourself, and sometimes the courts have a help desk or something similar to help you. Your first step would either be to contact the courthouse in your county to get the forms, or to contact an attorney in your area.

Carol

-----Original Message-----

From: angelina8863 <angelina8863@ hotmail.com>

@group s.com

Sent: Tue, Aug 25, 2009 8:43 am

Subject: [ ] hi guys

hi there soory i havent been on here along time. i kinda expline here later, i need some help imgo about like how my son has autism and his bipolar on top. how do you go about like getting the thng before the reach 18 to get some type of not custody, but like you do for older poeople when they cant take care of there selfs??

i need to know how to do this b/c my son will not know how to mange or handle things in life with out adult superviosn help... he be 18 in nov.

thank guys .. angie

[Guest guest]

There are several things that can help keep yeast infections at bay.

1. Large doses of high-quality probiotics taken IN BETWEEN your antibiotic

doses.

2. Avoid all sources of sugar in your diet----honey, agave syrup, all of

it!

3. Limit or avoid grains, especially refined grains like white flour, white

rice, etc.

4. Be very careful of oral hygiene and consider doing a nighttime rinse and

gargle with dilute peroxide, then swishing a mouthful of plain,

unsweetened kefir in your mouth. (You can brush as usual after the kefir swish

and

swallow)

5. For skin, consider moisturizing by rubbing coconut oil all over you.

Coconut oil is considered to be a natural antifungal and may also be taken

orally.

Good luck!

Susie

In a message dated 3/16/2011 11:57:15 P.M. Eastern Daylight Time,

JPMyra@... writes:

I meet with my lyme doctor on monday and we may be going on the antibiotics

. I have a question?? I never had a yeast infection in my life and I was

wondering............will I get one? AND, I just started taking a very high

quality probiotic. Will this help keep a yeast infection at bay?

Thanks, Myra In NH