diary, good idea Lottie

[Guest guest]

Hi all you newbies, Lottie has a good idea, for us old timers to put down a

little of our history for the benefit of you new comers.  I'm 79 and here's a

bit of my history.

May of 1995, at 65, I went in for an annual check up, I had no symptoms of any

kind, for anything, it was just a check up.

She was a new doctor, and i really liked her. When she called me with my blood

results, she said she felt real bad, me being a brand new patient, and her with

a bit of bad news.  She said my white count was 25,000 and she was sending me to

a specialist.  Did not say what kind of specialist, needless to say when i got

to the proper address, I was sure I was in the wrong department, as this was the

cancer center. It turned out I was in the right place, and the doctor explained

why she should do a

bone marrow biopsy, right

then and there.  And it showed I had CML, and the treatment would be

Interferon. Now that was the nightmare from hell, and it has always amazed me

that one time I met a man who was on it for 9 years, and he said it never

bothered him at all.  It made me so sick, and every day I had to drive to the

hospital, get the shot, go home and crawl into bed for the next 8 hours before I

felt better.  Headache, chills, nausea, fever, and terrible aches and pains, 

every day for 9 weeks.  And then i told her, no more, I don't care if I die!  So

for the next  5 years, which incidentally is about the time they said I had to

live, I was treated with Hydroxyurea.

Now, I truly don't remember how I felt about this diagnosis ,cancer was rampant

in my family, so I really wasn't shocked.  My 6 children were, and they were

sure I was not going to be around long.  It was lunches, dinners, parties,

picnics, you name it, and I

finally begged them to quit entertaining me, I was going to be around a long

time, and I would weigh 200 lbs if they didn't quit feeding me.  They were all

just trying to get every last minute with me that they could, and that was

really nice. 

I also remember I told them that day, this is not a secret, I have cancer, let's

talk about it, let's not hide it, you can tell your friends, I don't care.  And

it's always been that way, when I enter a new trial, the whole town knows it.

Well, that went on for 5 years, and time was about to run out on me, my labs

were going sky high.  One night I had the TV on and saw Dr. Druker talking

about his magic orange pill, it didn't have a name then,  it was STI571.  My

doctor wrote to him, and in a week I was headed to Portland, Oregon,  We had one

heck of a party here, it was one big celebration.  I remember my granddaughter

was in 5thpan>

grade and had her whole class

pray for her gramma to get in the trial, and she told me for years, they were

responsible for saving my life.  I left Feb. 11, 1996.

I landed in Portland late at night, in the cold rain, all by myself  as none of

my 6 kids were available that week to accompany me.  One was going to be there

for a week , in a week, but could not go with me in the beginning.  The next day

i met the wonderful Dr. Druker and Dr. O'Dwyer, I met the protocol for the

trial, and I started my journey with STI.

First I had to rent an apartment, get it furnished, learn how to get to and from

the hospital, and cope with the meds at the same time.  It's been a while,

memory dims, but I do remember feeling like poop ( can I say that here?)  most

of the time, aches and pains, nauseous, and in general, almost as bad as I did

on Interferon.  I had to eat, then two hours later take 300 mg, and the same at

dinner.  If I didn't eat a lot, I

would be sick.  

I was not totally alone, 3 of my kids were able to come and stay a week, and my

sister and her daughter and son in law from California came to visit.  When i

started to feel better, I went  and visited them, and that was great to get out

of the apartment and even the city.

So , two months passed, I could come home, but had to fly back in one month,

then every 3 months for check ups.  And after 2 months on  it, I got the rash

from hell.  I have scars on my legs from the uncers it caused, and it was the

second worst nightmare of my cml journey.

Well, not all went well, after 1 1/2 years Gleevec ( it was now FDA approved) 

failed.  I had to move to Portland again for another 2 months as I entered the

Arsenic/Gleevec trial.  That lasted about 6 months, and the following July I

moved to Portland again for 2 months to try the Zarnestra/Gleevec trial.  all

this time, it was fly

from Cleveland Ohio to Portland every 3-4 months, for 4 years.

And none of them worked. 

In July of 2004 I was fortunate enough to get into the BMS trial in Houston,

where I met all those wonderful people, Lottie, Jerry mayfield, Len and Ernie

Paschal and Everett and Jan , may she rest in peace.  And the drug worked

wonders for me.  A few headaches at first, then nothing.  I loved Sprycel, I was

in CCR in 10 months, and never felt better.  For some reason, after about 1 1/2

years, pleural effusion hit me like a ton of bricks.  Not going into detail

here, just to say, I had to stop that drug too.

Lottie calls me the queen of trials, not true, I believe my good buddy Len has

that title, she is up on me by one.

Now I did forget a lot of things,but most important was my doctor in Houston at

MDACC. Dr. Talpaz made the decision to move to the U. of Mich, and I followed

him there,  Not just because he is

such a great doctor, but also because it is only a 175mile drive for me, and

that beats the heck out of flying to Houston all the time.

So, now I'm driving to Ann Arbor MI and another trial comes around.  The XL228

trial, which is an infusion, and I started that in May of this year.  This drug

worked, I was in CCR, but eventually the side effects were such that my quality

of life was not as good  as I wanted it to be, and ended it just two weeks ago,

the beginning of Feb.  I must live under a lucky star, with all these trials

coming along just in the nick of time, because now i have another one, which

should start for me in about a month, the Ariad trial, under Dr. Talpaz, at the

U. of Mich. 

These trials have kept me alive for the last 9 years, 9 years longer than I

was given in 1995.  I have been extremely fortunate in that I was able to do

all that travel to be in the trials, and fortunate that the research doctors

like Dr. Druker and Dr., Talpaz have paid off and we are all going to live as

long as we would have if we didn't have cml;  it's no longer  a death penalty,

and all you newbies will soon get accustomed to living with it.  Granted, my 6

children were all adults when I was dx, so i have not had the fear of dying and

not knowing what would happen to my family.  Not with cml, that is.  In 1969 I

was dx with uterine cancer, I was 39 and at the time my children were

6,8,9,11,12,and 15,and I was a widow, having lost my husband in 1966.  So I am

familar with the fears and the agony of being dx with cancer as a parent.  But

today is a different day, it is a better time than 20 years ago, and the life

expectancy is no longer 5 years.  Count your

blessings, you could be much

worse off, brain cancer, bone cancer, or any number of things that are far

worse than cml.  Live your life and enjoy every day and count your blessings,

and I didn't intend for this to be so long, it is not a bit of history, it IS my

history!! 

ps  I don't know where this line came from and don't know how to get rid of it,

and I don't know why the type changes, I better get out my instruction book

!!!!!!  can someone help me out here?

I'm sending this before I end up deleting it by mistake!!

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4

weeks)

02/13/09 - XL trial ended due to side effects

 

[Guest guest]

Hi, I see in being sent the type did not change, nor did the line in the middle

of the words show up, tht is weird.  This lap top goes a little bezerk every now

and then, but it is all better now, bobby

From: ROBERTA DOYLE <rcd1929@...>

Subject: [ ] diary, good idea Lottie

" " < >

Date: Monday, March 2, 2009, 11:30 PM

Hi all you newbies, Lottie has a good idea, for us old timers to put

down a little of our history for the benefit of you new comers.  I'm 79 and

here's a bit of my history.

May of 1995, at 65, I went in for an annual check up, I had no symptoms of any

kind, for anything, it was just a check up.

She was a new doctor, and i really liked her. When she called me with my blood

results, she said she felt real bad, me being a brand new patient, and her with

a bit of bad news.  She said my white count was 25,000 and she was sending me to

a specialist.  Did not say what kind of specialist, needless to say when i got

to the proper address, I was sure I was in the wrong department, as this was the

cancer center. It turned out I was in the right place, and the doctor explained

why she should do a

bone marrow biopsy, right

then and there.  And it showed I had CML, and the treatment would be

Interferon. Now that was the nightmare from hell, and it has always amazed me

that one time I met a man who was on it for 9 years, and he said it never

bothered him at all.  It made me so sick, and every day I had to drive to the

hospital, get the shot, go home and crawl into bed for the next 8 hours before I

felt better.  Headache, chills, nausea, fever, and terrible aches and pains, 

every day for 9 weeks.  And then i told her, no more, I don't care if I die!  So

for the next  5 years, which incidentally is about the time they said I had to

live, I was treated with Hydroxyurea.

Now, I truly don't remember how I felt about this diagnosis ,cancer was rampant

in my family, so I really wasn't shocked.  My 6 children were, and they were

sure I was not going to be around long.  It was lunches, dinners, parties,

picnics, you name it, and I

finally begged them to quit entertaining me, I was going to be around a long

time, and I would weigh 200 lbs if they didn't quit feeding me.  They were all

just trying to get every last minute with me that they could, and that was

really nice. 

I also remember I told them that day, this is not a secret, I have cancer, let's

talk about it, let's not hide it, you can tell your friends, I don't care.  And

it's always been that way, when I enter a new trial, the whole town knows it.

Well, that went on for 5 years, and time was about to run out on me, my labs

were going sky high.  One night I had the TV on and saw Dr. Druker talking

about his magic orange pill, it didn't have a name then,  it was STI571.  My

doctor wrote to him, and in a week I was headed to Portland, Oregon,  We had one

heck of a party here, it was one big celebration.  I remember my granddaughter

was in 5thpan>

grade and had her whole class

pray for her gramma to get in the trial, and she told me for years, they were

responsible for saving my life.  I left Feb. 11, 1996.

I landed in Portland late at night, in the cold rain, all by myself  as none of

my 6 kids were available that week to accompany me.  One was going to be there

for a week , in a week, but could not go with me in the beginning.  The next day

i met the wonderful Dr. Druker and Dr. O'Dwyer, I met the protocol for the

trial, and I started my journey with STI.

First I had to rent an apartment, get it furnished, learn how to get to and from

the hospital, and cope with the meds at the same time.  It's been a while,

memory dims, but I do remember feeling like poop ( can I say that here?)  most

of the time, aches and pains, nauseous, and in general, almost as bad as I did

on Interferon.  I had to eat, then two hours later take 300 mg, and the same at

dinner.  If I didn't eat a lot, I

would be sick.  

I was not totally alone, 3 of my kids were able to come and stay a week, and my

sister and her daughter and son in law from California came to visit.  When i

started to feel better, I went  and visited them, and that was great to get out

of the apartment and even the city.

So , two months passed, I could come home, but had to fly back in one month,

then every 3 months for check ups.  And after 2 months on  it, I got the rash

from hell.  I have scars on my legs from the uncers it caused, and it was the

second worst nightmare of my cml journey.

Well, not all went well, after 1 1/2 years Gleevec ( it was now FDA approved) 

failed.  I had to move to Portland again for another 2 months as I entered the

Arsenic/Gleevec trial.  That lasted about 6 months, and the following July I

moved to Portland again for 2 months to try the Zarnestra/Gleevec trial.  all

this time, it was fly

from Cleveland Ohio to Portland every 3-4 months, for 4 years.

And none of them worked. 

In July of 2004 I was fortunate enough to get into the BMS trial in Houston,

where I met all those wonderful people, Lottie, Jerry mayfield, Len and Ernie

Paschal and Everett and Jan , may she rest in peace.  And the drug worked

wonders for me.  A few headaches at first, then nothing.  I loved Sprycel, I was

in CCR in 10 months, and never felt better.  For some reason, after about 1 1/2

years, pleural effusion hit me like a ton of bricks.  Not going into detail

here, just to say, I had to stop that drug too.

Lottie calls me the queen of trials, not true, I believe my good buddy Len has

that title, she is up on me by one.

Now I did forget a lot of things,but most important was my doctor in Houston at

MDACC. Dr. Talpaz made the decision to move to the U. of Mich, and I followed

him there,  Not just because he is

such a great doctor, but also because it is only a 175mile drive for me, and

that beats the heck out of flying to Houston all the time.

So, now I'm driving to Ann Arbor MI and another trial comes around.  The XL228

trial, which is an infusion, and I started that in May of this year.  This drug

worked, I was in CCR, but eventually the side effects were such that my quality

of life was not as good  as I wanted it to be, and ended it just two weeks ago,

the beginning of Feb.  I must live under a lucky star, with all these trials

coming along just in the nick of time, because now i have another one, which

should start for me in about a month, the Ariad trial, under Dr. Talpaz, at the

U. of Mich. 

These trials have kept me alive for the last 9 years, 9 years longer than I

was given in 1995.  I have been extremely fortunate in that I was able to do

all that travel to be in the trials, and fortunate that the research doctors

like Dr. Druker and Dr., Talpaz have paid off and we are all going to live as

long as we would have if we didn't have cml;  it's no longer  a death penalty,

and all you newbies will soon get accustomed to living with it.  Granted, my 6

children were all adults when I was dx, so i have not had the fear of dying and

not knowing what would happen to my family.  Not with cml, that is.  In 1969 I

was dx with uterine cancer, I was 39 and at the time my children were

6,8,9,11,12, and 15,and I was a widow, having lost my husband in 1966.  So I am

familar with the fears and the agony of being dx with cancer as a parent.  But

today is a different day, it is a better time than 20 years ago, and the life

expectancy is no longer 5 years.  Count your

blessings, you could be much

worse off, brain cancer, bone cancer, or any number of things that are far

worse than cml.  Live your life and enjoy every day and count your blessings,

and I didn't intend for this to be so long, it is not a bit of history, it IS my

history!! 

ps  I don't know where this line came from and don't know how to get rid of it,

and I don't know why the type changes, I better get out my instruction book

!!!!!!  can someone help me out here?

I'm sending this before I end up deleting it by mistake!!

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4

weeks)

02/13/09 - XL trial ended due to side effects

 

[Guest guest]

wow bobby god bless you every minute of each day i'm in aw of you and thank

you for having such determination it's you wariors we owe our lives to and of

course god

aliza yaffa

**************Worried about job security? Check out the 5 safest jobs in a

recession.

(http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000002)

[Guest guest]

Dear Bobby and Lottie and all the other trial warriors. You have certainly had

a time of it. You make me ashamed of myself for whining about some bone and

muscle pain. You are all in my prayers for helping to pave this road for me and

those that have travelled and will travel this road behind me.. You make me look

at how light my load really is. Thank you and God Bless you all. Eva XXOO

From: ROBERTA DOYLE

Sent: Tuesday, March 03, 2009 7:06 AM

Subject: Re: [ ] diary, good idea Lottie

Hi, I see in being sent the type did not change, nor did the line in the middle

of the words show up, tht is weird. This lap top goes a little bezerk every now

and then, but it is all better now, bobby

From: ROBERTA DOYLE <rcd1929@...>

Subject: [ ] diary, good idea Lottie

" " < >

Date: Monday, March 2, 2009, 11:30 PM

Hi all you newbies, Lottie has a good idea, for us old timers to put down a

little of our history for the benefit of you new comers. I'm 79 and here's a

bit of my history.

May of 1995, at 65, I went in for an annual check up, I had no symptoms of any

kind, for anything, it was just a check up.

She was a new doctor, and i really liked her. When she called me with my blood

results, she said she felt real bad, me being a brand new patient, and her with

a bit of bad news. She said my white count was 25,000 and she was sending me to

a specialist. Did not say what kind of specialist, needless to say when i got

to the proper address, I was sure I was in the wrong department, as this was the

cancer center. It turned out I was in the right place, and the doctor explained

why she should do a

bone marrow biopsy, right

then and there. And it showed I had CML, and the treatment would be Interferon.

Now that was the nightmare from hell, and it has always amazed me that one time

I met a man who was on it for 9 years, and he said it never bothered him at all.

It made me so sick, and every day I had to drive to the hospital, get the shot,

go home and crawl into bed for the next 8 hours before I felt better. Headache,

chills, nausea, fever, and terrible aches and pains, every day for 9 weeks.

And then i told her, no more, I don't care if I die! So for the next 5 years,

which incidentally is about the time they said I had to live, I was treated with

Hydroxyurea.

Now, I truly don't remember how I felt about this diagnosis ,cancer was rampant

in my family, so I really wasn't shocked. My 6 children were, and they were

sure I was not going to be around long. It was lunches, dinners, parties,

picnics, you name it, and I

finally begged them to quit entertaining me, I was going to be around a long

time, and I would weigh 200 lbs if they didn't quit feeding me. They were all

just trying to get every last minute with me that they could, and that was

really nice.

I also remember I told them that day, this is not a secret, I have cancer, let's

talk about it, let's not hide it, you can tell your friends, I don't care. And

it's always been that way, when I enter a new trial, the whole town knows it.

Well, that went on for 5 years, and time was about to run out on me, my labs

were going sky high. One night I had the TV on and saw Dr. Druker talking

about his magic orange pill, it didn't have a name then, it was STI571. My

doctor wrote to him, and in a week I was headed to Portland, Oregon, We had one

heck of a party here, it was one big celebration. I remember my granddaughter

was in 5thpan>

grade and had her whole class

pray for her gramma to get in the trial, and she told me for years, they were

responsible for saving my life. I left Feb. 11, 1996.

I landed in Portland late at night, in the cold rain, all by myself as none of

my 6 kids were available that week to accompany me. One was going to be there

for a week , in a week, but could not go with me in the beginning. The next day

i met the wonderful Dr. Druker and Dr. O'Dwyer, I met the protocol for the

trial, and I started my journey with STI.

First I had to rent an apartment, get it furnished, learn how to get to and from

the hospital, and cope with the meds at the same time. It's been a while,

memory dims, but I do remember feeling like poop ( can I say that here?) most

of the time, aches and pains, nauseous, and in general, almost as bad as I did

on Interferon. I had to eat, then two hours later take 300 mg, and the same at

dinner. If I didn't eat a lot, I

would be sick.

I was not totally alone, 3 of my kids were able to come and stay a week, and my

sister and her daughter and son in law from California came to visit. When i

started to feel better, I went and visited them, and that was great to get out

of the apartment and even the city.

So , two months passed, I could come home, but had to fly back in one month,

then every 3 months for check ups. And after 2 months on it, I got the rash

from hell. I have scars on my legs from the uncers it caused, and it was the

second worst nightmare of my cml journey.

Well, not all went well, after 1 1/2 years Gleevec ( it was now FDA approved)

failed. I had to move to Portland again for another 2 months as I entered the

Arsenic/Gleevec trial. That lasted about 6 months, and the following July I

moved to Portland again for 2 months to try the Zarnestra/Gleevec trial. all

this time, it was fly

from Cleveland Ohio to Portland every 3-4 months, for 4 years.

And none of them worked.

In July of 2004 I was fortunate enough to get into the BMS trial in Houston,

where I met all those wonderful people, Lottie, Jerry mayfield, Len and Ernie

Paschal and Everett and Jan , may she rest in peace. And the drug worked

wonders for me. A few headaches at first, then nothing. I loved Sprycel, I was

in CCR in 10 months, and never felt better. For some reason, after about 1 1/2

years, pleural effusion hit me like a ton of bricks. Not going into detail

here, just to say, I had to stop that drug too.

Lottie calls me the queen of trials, not true, I believe my good buddy Len has

that title, she is up on me by one.

Now I did forget a lot of things,but most important was my doctor in Houston at

MDACC. Dr. Talpaz made the decision to move to the U. of Mich, and I followed

him there, Not just because he is

such a great doctor, but also because it is only a 175mile drive for me, and

that beats the heck out of flying to Houston all the time.

So, now I'm driving to Ann Arbor MI and another trial comes around. The XL228

trial, which is an infusion, and I started that in May of this year. This drug

worked, I was in CCR, but eventually the side effects were such that my quality

of life was not as good as I wanted it to be, and ended it just two weeks ago,

the beginning of Feb. I must live under a lucky star, with all these trials

coming along just in the nick of time, because now i have another one, which

should start for me in about a month, the Ariad trial, under Dr. Talpaz, at the

U. of Mich.

These trials have kept me alive for the last 9 years, 9 years longer than I

was given in 1995. I have been extremely fortunate in that I was able to do all

that travel to be in the trials, and fortunate that the research doctors like

Dr. Druker and Dr., Talpaz have paid off and we are all going to live as long as

we would have if we didn't have cml; it's no longer a death penalty, and all

you newbies will soon get accustomed to living with it. Granted, my 6 children

were all adults when I was dx, so i have not had the fear of dying and not

knowing what would happen to my family. Not with cml, that is. In 1969 I was

dx with uterine cancer, I was 39 and at the time my children were 6,8,9,11,12,

and 15,and I was a widow, having lost my husband in 1966. So I am familar with

the fears and the agony of being dx with cancer as a parent. But today is a

different day, it is a better time than 20 years ago, and the life expectancy is

no longer 5 years. Count your

blessings, you could be much

worse off, brain cancer, bone cancer, or any number of things that are far worse

than cml. Live your life and enjoy every day and count your blessings, and I

didn't intend for this to be so long, it is not a bit of history, it IS my

history!!

ps I don't know where this line came from and don't know how to get rid of it,

and I don't know why the type changes, I better get out my instruction book

!!!!!! can someone help me out here?

I'm sending this before I end up deleting it by mistake!!

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 -

CCR ( in 4

weeks)

02/13/09 - XL trial ended due to side effects