Re: new member 27yr veteran of CML

[Guest guest]

Wow Skip, you must have the record for logevity! Welcome to the

group. I can't imagine being on Myleran for that number of years.

Why didn't they give you Gleevec when it was first approved in

2001?

By the way, the chats happen on Tuesday nights and Saturday mornings

but I think the Tuesday evening chats are much more popular than the

Saturday morning chats. To participate you need to have the

messenger. Zavie runs the chats and when he sees you signed into

the messenger, he'll invite you to join in the chat. I hope to see

you there on Tuesday.

Take care,

Tracey dx Jan 2002

> Hi just a thankyou to Zevie for inviting me to this group

> diagnosed 27 years ago.. was on myleran for 26 years ran into

trouble

> now on Gleevec..

> It is only with the heart that one see rightly

> what is essential is invisible to the eyes..

> Skip

[Guest guest]

Thanks for the welcome, well I am not sure when Canada allowed

Gleevec to be used, we are a bit behind the USA in that respect

I could be wrong and I did not need it..It was only last Christmas

2004 that I became very very ill, and my GP sent me to the city

and I have not been right yet.. but on the other hand I am looking

at the grass on the green side so I am doing great... as for myleran

it worked very well..I know that it is use to kill all cells but I

guess I have a high tolerance to drugs..

Skip

" it is only with the heart one see rightly, what is essential is

invisible to the eye "

> > Hi just a thankyou to Zevie for inviting me to this group

> > diagnosed 27 years ago.. was on myleran for 26 years ran into

> trouble

> > now on Gleevec..

> > It is only with the heart that one see rightly

> > what is essential is invisible to the eyes..

> > Skip

[Guest guest]

Hi Skip,

Canada approved Gleevec in September 2001. I believe the US

approved it in May of 2001 so by Canadian standards, we did pretty

good, just 4 months after the Americans.

I was lucky in that I managed to get it without first going on

Interferon. In those early days, most doctors made their patients

start with Interferon, then only when they couldn't tolerate it

anymore, they would switch them over.

I've heard of people taking Hydrea for many years but you're the

first one I've heard of that took Myleran for so long (or at all for

that matter) although I know they use it often as a conditioning

treatment before BMT's. In any case, it obviously worked well for

you since you're still here 27 years later.

All the best,

Tracey

> Thanks for the welcome, well I am not sure when Canada allowed

> Gleevec to be used, we are a bit behind the USA in that respect

> I could be wrong and I did not need it..It was only last Christmas

> 2004 that I became very very ill, and my GP sent me to the city

> and I have not been right yet.. but on the other hand I am looking

> at the grass on the green side so I am doing great... as for

myleran

> it worked very well..I know that it is use to kill all cells but I

> guess I have a high tolerance to drugs..

> Skip

> " it is only with the heart one see rightly, what is essential is

> invisible to the eye "

>

>

[Guest guest]

Hello Skip,

Thank you so much for posting to the group. Twenty-seven years is marvelous and

marvelous to hear about. It's only been two years since my husband's diagnosis

and even though he started on Gleevec, he still has in his mind that not too

long ago the average life expectancy was about 5 years from diagnosis. You've

obviously proved those estimates wrong. Do you mind my asking what sort of

trouble you've run into now that you're on Gleevec. If you've already answered

this question, I apologize. I've been off the list for a few days.

Continued long life!

Adrienne

skipd_2002 <skipd@...> wrote:

Hi just a thankyou to Zevie for inviting me to this group

diagnosed 27 years ago.. was on myleran for 26 years ran into trouble

now on Gleevec..

It is only with the heart that one see rightly

what is essential is invisible to the eyes..

Skip

[Guest guest]

Hi and thanks for the e-mail

the reason I joined these groups is that very reason,

to show that not all CML has to be that bad....I was

given 2 months to 2 years when first dx. They did a

PHILADELPHIA test to see if Myleran would help. It

helped a lot 26.5 years..now over 27

I have over the years have had very high white counts

my other counts were down a bit but in most cased they

stayed the same.I would walk around with wbc of over

30 most months going up to around 60,00 to 100,000

before they would start again. I would go on myleran

2 or four mil a day for a period and then reduce it as

the counts got better.. I was tired all the time but

felt pretty good. Then came my lose of blood.. and

increased spleen size. My GP found a Specialists in

the city, first he has to get me some blood, 8 units

over a month. then to reduce my spleen with a drug I

cannot remember the name. and then when my counts

were close to normal. I started 400mil of gleevec..

wow did my counts drop like a stone again. my

platlets went down below 27K white dropped to around

2000 and hem went down not sure.. and I was itchy,

eyes red and retaining water. rash all over. I was

taken off gleeve and let go for a month. put back on

at 400mils a month. bang went my counts. taken of

gleevec and my

counts went up again..

felt really ill all the time. but nothing serious I

could live with it as I am use to being ill. I gave

up my positions as a JP and restorative justice

facilitator and thought about presenting my living

will. But the Doc put me back on at 100mils a day.

Felt a little better but my plat count went down to

about 3.2k wbc stayed in the 4.8 range hem went to

about 122k

the nurse called took me off gleevec but a day later

called and said the doctor wanted to see me...He said

he could not keep taking me off and on.. so he said he

would let my counts go. until my plat were around 20

not 20,000 but instead my counts went up a week later

to 50,000 plat and 5.6 wbc still around 122k hem

now counts same except for plat they are over 70k as

of last week

Now I made this reply long so that you can see I

became adjusted to the drug as I did with myleran.

Not sure why but most drugs take long time to work on

me.. I think my doctor could see that I would adjust.

so he kept at it.. I feel real good was for labs this

am as I am every Mon. I will suggest that every eat

proper I do not drink nor smoke. I eat lots of green

veggie when I am ill I drink lots juice, popsicle.

lots of fish and chicken, and small amounts of red

meat. I only bring up my diet because of my first

Leukemia Doctor a

Dr Sheridan..who left this area..He was from Britain

and he said make sure you eat properly and gave me

above as a guideline.

Hope this helps and answers my living with Leukemia

may I should make a blog ... but I do thank you for

you e-mail..the main thing is

it is only with the heart that one sees rightly, what

is essential is invisible to the eye..

SkipD

--- Adrienne <artist934@...> wrote:

> Hello Skip,

>

> Thank you so much for posting to the group.

> Twenty-seven years is marvelous and marvelous to

> hear about. It's only been two years since my

> husband's diagnosis and even though he started on

> Gleevec, he still has in his mind that not too long

> ago the average life expectancy was about 5 years

> from diagnosis. You've obviously proved those

> estimates wrong. Do you mind my asking what sort of

> trouble you've run into now that you're on Gleevec.

> If you've already answered this question, I

> apologize. I've been off the list for a few days.

>

> Continued long life!

>

> Adrienne

>

> skipd_2002 <skipd@...> wrote:

> Hi just a thankyou to Zevie for inviting me to this

> group

> diagnosed 27 years ago.. was on myleran for 26 years

> ran into trouble

> now on Gleevec..

> It is only with the heart that one see rightly

> what is essential is invisible to the eyes..

> Skip

>

>

>

>

>

[Guest guest]

At 08:06 AM 8/29/05 -0700, you wrote:

> I will suggest that every eat

>proper I do not drink nor smoke. I eat lots of green

>veggie when I am ill I drink lots juice, popsicle.

>lots of fish and chicken, and small amounts of red

>meat. I only bring up my diet because of my first

>Leukemia Doctor a

>Dr Sheridan..who left this area..He was from Britain

>and he said make sure you eat properly and gave me

>above as a guideline.

Hi Skip,

Hooray for your cml longevity and also for the good diet.

I agree with you and your British doctor that when you have

a chronic illness, you need to eat well.

I'm glad you found and joined this list, and can offer your

perspective about things.

C. (Eugene, Oregon)

[Guest guest]

Skip,

Your long post was much appreciated. Welcome to the group!

Adrienne

Skio Duffie <skipd_2002@...> wrote:

Hi and thanks for the e-mail

the reason I joined these groups is that very reason,

to show that not all CML has to be that bad....I was

given 2 months to 2 years when first dx. They did a

PHILADELPHIA test to see if Myleran would help. It

helped a lot 26.5 years..now over 27

I have over the years have had very high white counts

my other counts were down a bit but in most cased they

stayed the same.I would walk around with wbc of over

30 most months going up to around 60,00 to 100,000

before they would start again. I would go on myleran

2 or four mil a day for a period and then reduce it as

the counts got better.. I was tired all the time but

felt pretty good. Then came my lose of blood.. and

increased spleen size. My GP found a Specialists in

the city, first he has to get me some blood, 8 units

over a month. then to reduce my spleen with a drug I

cannot remember the name. and then when my counts

were close to normal. I started 400mil of gleevec..

wow did my counts drop like a stone again. my

platlets went down below 27K white dropped to around

2000 and hem went down not sure.. and I was itchy,

eyes red and retaining water. rash all over. I was

taken off gleeve and let go for a month. put back on

at 400mils a month. bang went my counts. taken of

gleevec and my

counts went up again..

felt really ill all the time. but nothing serious I

could live with it as I am use to being ill. I gave

up my positions as a JP and restorative justice

facilitator and thought about presenting my living

will. But the Doc put me back on at 100mils a day.

Felt a little better but my plat count went down to

about 3.2k wbc stayed in the 4.8 range hem went to

about 122k

the nurse called took me off gleevec but a day later

called and said the doctor wanted to see me...He said

he could not keep taking me off and on.. so he said he

would let my counts go. until my plat were around 20

not 20,000 but instead my counts went up a week later

to 50,000 plat and 5.6 wbc still around 122k hem

now counts same except for plat they are over 70k as

of last week

Now I made this reply long so that you can see I

became adjusted to the drug as I did with myleran.

Not sure why but most drugs take long time to work on

me.. I think my doctor could see that I would adjust.

so he kept at it.. I feel real good was for labs this

am as I am every Mon. I will suggest that every eat

proper I do not drink nor smoke. I eat lots of green

veggie when I am ill I drink lots juice, popsicle.

lots of fish and chicken, and small amounts of red

meat. I only bring up my diet because of my first

Leukemia Doctor a

Dr Sheridan..who left this area..He was from Britain

and he said make sure you eat properly and gave me

above as a guideline.

Hope this helps and answers my living with Leukemia

may I should make a blog ... but I do thank you for

you e-mail..the main thing is

it is only with the heart that one sees rightly, what

is essential is invisible to the eye..

SkipD

--- Adrienne <artist934@...> wrote:

> Hello Skip,

>

> Thank you so much for posting to the group.

> Twenty-seven years is marvelous and marvelous to

> hear about. It's only been two years since my

> husband's diagnosis and even though he started on

> Gleevec, he still has in his mind that not too long

> ago the average life expectancy was about 5 years

> from diagnosis. You've obviously proved those

> estimates wrong. Do you mind my asking what sort of

> trouble you've run into now that you're on Gleevec.

> If you've already answered this question, I

> apologize. I've been off the list for a few days.

>

> Continued long life!

>

> Adrienne

>

> skipd_2002 <skipd@...> wrote:

> Hi just a thankyou to Zevie for inviting me to this

> group

> diagnosed 27 years ago.. was on myleran for 26 years

> ran into trouble

> now on Gleevec..

> It is only with the heart that one see rightly

> what is essential is invisible to the eyes..

> Skip

>

>

>

>

>