New Trial

[Guest guest]

As some of you may already know, I will be leaving for MDACC on Sept. 13 to try

out for the Ariad trial. I just hope I qualify and able to meet the

requirements. We have gotten such good reports back from our membership who

haved been willing to share that part of their lives with us, that I feel

strongly that is the best option for me at this time. We all have to make

choices that are difficult in life and this was a time where I had to deliberate

and weigh which trial was best for me. I was offered the DCC 2036 the day

before, but my heart told me to follow the Ariad trial. I was willing to wait

for it, but I didn't think it would so soon from earlier reports about the

starting date. (They like to keep you in the dark). For those of you who have

never been in a trial, it is like a rite of passage. It's almost like

auditioning for a part, only your health is at play instead of your talent.

There is the initial x-ray, then the blood work every few hours, ECGs every hour

and then you wait for 4 hours and do it again. I remember standing in the

middle of the doctor's office and the crew that works with him were all there as

they watched me down my first dose of the drug.

Does anyone remember their experience they would like to share? I know Bobby

has lots and lots of memories, she has been in more trials than me. She is

always one step ahead of me and 1 year more CML birthdays, right Bobby? I think

she has earned a blue ribbon for having traveled the most to get into a trial.

The fact that she earned so many frequent flyer miles in her quest was daunting

enough, but she did it in a wheel chair, traveling alone many times. Now that

is a gutsy lady. Not only that, she raises money for good causes and gives of

her time and talents very generously and she is always ready to help our newbes.

Salut, Bobby.

Carpe diem,

Lottie Duthu

[Guest guest]

Hi Lottie:  First let me say that as you know we all wish you the best results

from this trial, but let me say that you are a fantastic writer with the way you

put things into words.

You should write a book.  It would be a best seller.

     I am reading about how you will get prepared for your trial drug.  It

made me think back to my trial in Oct. of 2000 in NY. for my Gleevec.  It was

done through NY Presbyterian Hospital, but I went to the doctors office for my

BMB.  All he gave me was Lidocaine, and the pain was excruciating. He would

knock my back out everytime, as I have bad discs in my back.  I always

brought my rib belt with me on the days I knew I would be getting a biopsy. 

This way I could tolerate the pain on the trip back to New Jersey by Train.  He

told me I was too high strung when I asked if I could have something else with

the Lidocaine. I  could not wait till the trial was over so I could go back to

my regular Oncologist and be able to get my BMB at the hospital with some

sedation.  I had nothing else done.  No testing of any kind except blood work,

and a EKG.  Then my husband and I would walk about 3 city blocks to get to the

hospital where I would

go to pick up my STI-571 pills.  Most times it was faster to walk then to try

to get a taxi. I would get 30 pills, and have to travel back to NY every

month.  Nobody watched me take my pills or anything.  We picked them up, and

then take a taxi back to the train station to go home.  Then the next morning I

got up and ate breakfast and took my first pill. It was my husband who watched

me take my pill to be sure I was okay. Then waited to see what would happen if

anything. I got the bad nausea at first, and then the other side effects

developed later on.

I did that for 8 months until the FDA approved STI-571 and made it Gleevec in

May 2001.

I have to say that these other hospitals are more professional and cautious in

how they do their trials, and maybe if anything is going on in NY its done

differently all these years later.

I do not regret that I went to NY to get started on my Gleevec, as there was

nothing else available to me at that time after failing the Interferon and

Ara-C.  I was ignorant to how trials should be done as I never had to do one

before.  In the long run it was a Victory for me, and still taking my 400mg.of

Gleevec every morning with my breakfast. I always feel that I was blessed, as

the terrible 9/11 happened only 3 months after my last visit to NY.

From: Lottie Duthu <lotajam@...>

Subject: [ ] New Trial

" CML " < >

Date: Sunday, September 5, 2010, 6:44 PM

 

As some of you may already know, I will be leaving for MDACC on Sept. 13 to try

out for the Ariad trial. I just hope I qualify and able to meet the

requirements. We have gotten such good reports back from our membership who

haved been willing to share that part of their lives with us, that I feel

strongly that is the best option for me at this time. We all have to make

choices that are difficult in life and this was a time where I had to deliberate

and weigh which trial was best for me. I was offered the DCC 2036 the day

before, but my heart told me to follow the Ariad trial. I was willing to wait

for it, but I didn't think it would so soon from earlier reports about the

starting date. (They like to keep you in the dark). For those of you who have

never been in a trial, it is like a rite of passage. It's almost like

auditioning for a part, only your health is at play instead of your talent.

There is the initial x-ray, then the blood work every few hours,

ECGs every hour and then you wait for 4 hours and do it again. I remember

standing in the middle of the doctor's office and the crew that works with him

were all there as they watched me down my first dose of the drug.

Does anyone remember their experience they would like to share? I know Bobby has

lots and lots of memories, she has been in more trials than me. She is always

one step ahead of me and 1 year more CML birthdays, right Bobby? I think she has

earned a blue ribbon for having traveled the most to get into a trial. The fact

that she earned so many frequent flyer miles in her quest was daunting enough,

but she did it in a wheel chair, traveling alone many times. Now that is a gutsy

lady. Not only that, she raises money for good causes and gives of her time and

talents very generously and she is always ready to help our newbes. Salut,

Bobby.

Carpe diem,

Lottie Duthu

[Guest guest]

good luck and may god bless you

From: Lottie Duthu <lotajam@...>

Subject: [ ] New Trial

" CML " < >

Date: Sunday, September 5, 2010, 6:44 PM

 

As some of you may already know, I will be leaving for MDACC on Sept. 13

to try out for the Ariad trial. I just hope I qualify and able to meet the

requirements. We have gotten such good reports back from our membership who

haved been willing to share that part of their lives with us, that I feel

strongly that is the best option for me at this time. We all have to make

choices that are difficult in life and this was a time where I had to deliberate

and weigh which trial was best for me. I was offered the DCC 2036 the day

before, but my heart told me to follow the Ariad trial. I was willing to wait

for it, but I didn't think it would so soon from earlier reports about the

starting date. (They like to keep you in the dark). For those of you who have

never been in a trial, it is like a rite of passage. It's almost like

auditioning for a part, only your health is at play instead of your talent.

There is the initial x-ray, then the blood work

every few hours, ECGs every hour and then you wait for 4 hours and do it again.

I remember standing in the middle of the doctor's office and the crew that works

with him were all there as they watched me down my first dose of the drug.

Does anyone remember their experience they would like to share? I know Bobby

has lots and lots of memories, she has been in more trials than me. She is

always one step ahead of me and 1 year more CML birthdays, right Bobby? I think

she has earned a blue ribbon for having traveled the most to get into a trial.

The fact that she earned so many frequent flyer miles in her quest was daunting

enough, but she did it in a wheel chair, traveling alone many times. Now that

is a gutsy lady. Not only that, she raises money for good causes and gives of

her time and talents very generously and she is always ready to help our newbes.

Salut, Bobby.

Carpe diem,

Lottie Duthu

[Guest guest]

Lottie, I wish youall the best luck in your trial. I want to take chance and

thank you for your continuous support the group. Have a blessed days in trial

and please keep us posted. GOD BLESS

Sent from my Verizon Wireless BlackBerry

[ ] New Trial

As some of you may already know, I will be leaving for MDACC on Sept. 13 to try

out for the Ariad trial. I just hope I qualify and able to meet the

requirements. We have gotten such good reports back from our membership who

haved been willing to share that part of their lives with us, that I feel

strongly that is the best option for me at this time. We all have to make

choices that are difficult in life and this was a time where I had to deliberate

and weigh which trial was best for me. I was offered the DCC 2036 the day

before, but my heart told me to follow the Ariad trial. I was willing to wait

for it, but I didn't think it would so soon from earlier reports about the

starting date. (They like to keep you in the dark). For those of you who have

never been in a trial, it is like a rite of passage. It's almost like

auditioning for a part, only your health is at play instead of your talent.

There is the initial x-ray, then the blood work every few hours, ECGs every hour

and then you wait for 4 hours and do it again. I remember standing in the

middle of the doctor's office and the crew that works with him were all there as

they watched me down my first dose of the drug.

Does anyone remember their experience they would like to share? I know Bobby

has lots and lots of memories, she has been in more trials than me. She is

always one step ahead of me and 1 year more CML birthdays, right Bobby? I think

she has earned a blue ribbon for having traveled the most to get into a trial.

The fact that she earned so many frequent flyer miles in her quest was daunting

enough, but she did it in a wheel chair, traveling alone many times. Now that

is a gutsy lady. Not only that, she raises money for good causes and gives of

her time and talents very generously and she is always ready to help our newbes.

Salut, Bobby.

Carpe diem,

Lottie Duthu

[Guest guest]

Lottie:

God bless and keep you!

Sent from my iPhone

On Sep 5, 2010, at 6:44 PM, " Lottie Duthu " <lotajam@...> wrote:

> As some of you may already know, I will be leaving for MDACC on Sept. 13 to

try out for the Ariad trial. I just hope I qualify and able to meet the

requirements. We have gotten such good reports back from our membership who

haved been willing to share that part of their lives with us, that I feel

strongly that is the best option for me at this time. We all have to make

choices that are difficult in life and this was a time where I had to deliberate

and weigh which trial was best for me. I was offered the DCC 2036 the day

before, but my heart told me to follow the Ariad trial. I was willing to wait

for it, but I didn't think it would so soon from earlier reports about the

starting date. (They like to keep you in the dark). For those of you who have

never been in a trial, it is like a rite of passage. It's almost like

auditioning for a part, only your health is at play instead of your talent.

There is the initial x-ray, then the blood work every few hours, ECGs e very

hour and then you wait for 4 hours and do it again. I remember standing in the

middle of the doctor's office and the crew that works with him were all there as

they watched me down my first dose of the drug.

>

> Does anyone remember their experience they would like to share? I know Bobby

has lots and lots of memories, she has been in more trials than me. She is

always one step ahead of me and 1 year more CML birthdays, right Bobby? I think

she has earned a blue ribbon for having traveled the most to get into a trial.

The fact that she earned so many frequent flyer miles in her quest was daunting

enough, but she did it in a wheel chair, traveling alone many times. Now that is

a gutsy lady. Not only that, she raises money for good causes and gives of her

time and talents very generously and she is always ready to help our newbes.

Salut, Bobby.

>

> Carpe diem,

> Lottie Duthu

>

>

[Guest guest]

Hi Lottie,

Dr Cerny told me via our phone conversation yesterday that he had plenty of

volunteers locally for this trial. He currently has five enrolled with a target

goal of 15. Once he gets the go-ahead from the IRB and Safety board, then he

will begin recruiting again. He thinks that will be very soon.

Jerry Mayfield posted the following on his site:

The trial is based on data in an article published in NATURE GENETICS VOLUME 41

NUMBER 7 JULY 2009 titled " Loss of the Alox5 gene impairs leukemia stem cells

and prevents chronic myeloid leukemia "

Here is a link to the article:

http://newcmldrug.com/Discuss/Alox5_gene.pdf

Warmest Regards to both you and Jimmy,

Don

>

> Thanks Don, for your update, and now everyone will know it came from here

first. LOL. This is certainly a novel idea, combining already tested drugs

together for another CML trial. Do you know anyone who is interested in it that

you inquired of Dr. LI in Worcester.

> Do they have a name for the trial yet?

>

> They have the best seafood houses up there and a company that makes

chocolates. I remember the name: Hebert's Chocolate Candies and we went and

tried a few samples.

> Hi to you both,

> Lottie

>

>

[Guest guest]

Hi Again,

Here is the link outlining the criteria to see if you qualify to be a

participant in this trial. As you can see at the top of the page they have

announced that recruiting has stopped. They will open it up for new recruits

when they get the go-ahead.

http://clinicaltrials.gov/ct2/show/NCT01130688?intr=zileuton & rank=1

Don

> >

> > Thanks Don, for your update, and now everyone will know it came from here

first. LOL. This is certainly a novel idea, combining already tested drugs

together for another CML trial. Do you know anyone who is interested in it that

you inquired of Dr. LI in Worcester.

> > Do they have a name for the trial yet?

> >

> > They have the best seafood houses up there and a company that makes

chocolates. I remember the name: Hebert's Chocolate Candies and we went and

tried a few samples.

> > Hi to you both,

> > Lottie

> >

> >