Beth has been outed

[Guest guest]

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and

at 80, I am told I am a miracle. I asked the local oncologist if I had lived

longer than any of his patients and he said I was their miracle. Had I not left

his care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this

is the reason I am what some would call a miracle. Sometimes you will find that

you can offer information your doctor was not aware of, as with your own

upcoming trial, so you see, persistance pays off. Even when life sucks, we

never give up. Other types of leukemia patients are not as lucky, their trials

are elusive and they don't have as many chances or choices as we do. If we fail

one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

Thanks for the warm welcome Lottie! The last few months have been a wild ride.

I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts started

going up, doc put me on Sprycel and did the mutation test. Also, because my

basos were going up he said I was in accelerated phase and needed to go to

transplant ASAP.  Like a good little patient I went for the consult and the

process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners is a

doctor who used to be a big wig at UCSF. He was able to get me in to see Dr.

Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has just been

amazing. Anyways, Stanford had told me there were no trials in California that

would be appropriate for me. Before I even had my first appointment, Dr. Shah

had his research coordinator e-mail me the informed consent for the Ariad trial.

(As a side note, I knew about the trial from this group, but didn't think it was

realistic for me because the sites were too far away). Needless to say, I signed

up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was based

on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I was quite

firmly in chronic phase! I would much rather be facing what I'm facing in

chronic phase! Needless to say, I feel a bit betrayed by the folks at Stanford

and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the " high "

points of my journey. I am so excited to start the Ariad trial and kick this

beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Beth,

 

I am 51 yrs and 5 yrs diagnosed CML and have not reached CCR and Zavie

recommended Dr. Shaw.  I, too am scheduled to see a few Dr. at Stanford myself,

which Dr.'s treated you?  I want to equip myself with the right resources, thank

you

From: bethgalliart@... <bethgalliart@...>

Subject: Re: [ ] Beth has been " outed "

Date: Friday, June 12, 2009, 8:27 AM

Thanks for the warm welcome Lottie! The last few months have been a wild ride.

I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts started

going up, doc put me on Sprycel and did the mutation test. Also, because my

basos were going up he said I was in accelerated phase and needed to go to

transplant ASAP.  Like a good little patient I went for the consult and the

process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners is a

doctor who used to be a big wig at UCSF. He was able to get me in to see Dr.

Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has just been

amazing. Anyways, Stanford had told me there were no trials in California that

would be appropriate for me. Before I even had my first appointment, Dr. Shah

had his research coordinator e-mail me the informed consent for the Ariad trial.

(As a side note, I knew about the trial from this group, but didn't think it was

realistic for me because the sites were too far away). Needless to say, I signed

up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was based

on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I was quite

firmly in chronic phase! I would much rather be facing what I'm facing in

chronic phase! Needless to say, I feel a bit betrayed by the folks at Stanford

and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the " high "

points of my journey. I am so excited to start the Ariad trial and kick this

beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Beth,

I have not read the whole story but I just wanted to ask you where do you

live?

I live in the Bay Area.

I have CML. Have had it since Juluy 2004-coming up on my 5 year anniversary.

I was just inquisitive as to where you are from.

Sharon T

_____

From: [mailto: ] On Behalf Of

bethgalliart@...

Sent: Friday, June 12, 2009 8:28 AM

Subject: Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild

ride. I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts

started going up, doc put me on Sprycel and did the mutation test. Also,

because my basos were going up he said I was in accelerated phase and needed

to go to transplant ASAP. Like a good little patient I went for the consult

and the process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners

is a doctor who used to be a big wig at UCSF. He was able to get me in to

see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

just been amazing. Anyways, Stanford had told me there were no trials in

California that would be appropriate for me. Before I even had my first

appointment, Dr. Shah had his research coordinator e-mail me the informed

consent for the Ariad trial. (As a side note, I knew about the trial from

this group, but didn't think it was realistic for me because the sites were

too far away). Needless to say, I signed up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was

based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

was quite firmly in chronic phase! I would much rather be facing what I'm

facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

at Stanford and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the

" high " points of my journey. I am so excited to start the Ariad trial and

kick this beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Sharon,

 

I was diagnosed the same month and I live not far from you, Sacramento.  May I

ask which Dr. you are seeing and which treatment you are on?

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Beth has been " outed "

Date: Friday, June 12, 2009, 8:42 AM

Hi Beth,

I have not read the whole story but I just wanted to ask you where do you

live?

I live in the Bay Area.

I have CML. Have had it since Juluy 2004-coming up on my 5 year anniversary.

I was just inquisitive as to where you are from.

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

bethgalliart@ comcast.net

Sent: Friday, June 12, 2009 8:28 AM

groups (DOT) com

Subject: Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild

ride. I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts

started going up, doc put me on Sprycel and did the mutation test. Also,

because my basos were going up he said I was in accelerated phase and needed

to go to transplant ASAP. Like a good little patient I went for the consult

and the process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners

is a doctor who used to be a big wig at UCSF. He was able to get me in to

see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

just been amazing. Anyways, Stanford had told me there were no trials in

California that would be appropriate for me. Before I even had my first

appointment, Dr. Shah had his research coordinator e-mail me the informed

consent for the Ariad trial. (As a side note, I knew about the trial from

this group, but didn't think it was realistic for me because the sites were

too far away). Needless to say, I signed up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was

based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

was quite firmly in chronic phase! I would much rather be facing what I'm

facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

at Stanford and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the

" high " points of my journey. I am so excited to start the Ariad trial and

kick this beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

Awesome story!

Congrats on confirming you are in chronic phase! Surely a relief. Great news

that you also like Dr Shah! It is always good to like your doctor!

Glad you got the BMB, and will pray the Ariad meds do the trick!

Congrats on good news.

Rhonda

Sent from my Verizon Wireless BlackBerry

Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild ride.

I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts started

going up, doc put me on Sprycel and did the mutation test. Also, because my

basos were going up he said I was in accelerated phase and needed to go to

transplant ASAP.  Like a good little patient I went for the consult and the

process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners is a

doctor who used to be a big wig at UCSF. He was able to get me in to see Dr.

Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has just been

amazing. Anyways, Stanford had told me there were no trials in California that

would be appropriate for me. Before I even had my first appointment, Dr. Shah

had his research coordinator e-mail me the informed consent for the Ariad trial.

(As a side note, I knew about the trial from this group, but didn't think it was

realistic for me because the sites were too far away). Needless to say, I signed

up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was based

on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I was quite

firmly in chronic phase! I would much rather be facing what I'm facing in

chronic phase! Needless to say, I feel a bit betrayed by the folks at Stanford

and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the " high "

points of my journey. I am so excited to start the Ariad trial and kick this

beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi ,

I was treated by Dr. Coutre. Who is your appointment with at Stanford?

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Thanks Rhonda. It is interesting, my body actually " tells " me the difference in

how I feel about my doc. When I go to Stanford, my blood pressure is through the

roof, to the point where the nurse was asking me if I felt okay. When I go to

UCSF, my blood pressure is always normal...

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

 Sharon,

I live in Atherton, near Stanford. (I wish I could say I " owned " a house in my

community, but I rent a cottage and act as caretaker when my landlords are out

of town..lol) How about you?

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

Hmmmmm, he is the trial Dr. and Dr. Miklos is the transplant Dr.  

From: bethgalliart@... <bethgalliart@...>

Subject: Re: [ ] Beth has been " outed "

Date: Friday, June 12, 2009, 8:48 AM

Hi ,

I was treated by Dr. Coutre. Who is your appointment with at Stanford?

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

I belong to Kaiser. When I was first diagnosed in July of 2004 I was so

scared I did not know what to think. Had never heard of CML and I am usually

up on most diseases. I was sent to an oncologist at the Walnut Creek

Kaiser. Dr. Russin. He did not know too much about CML either. But through

my diligent pushing and learning about it, through the internet and

especially this group we belong to I and he learned about it. I knew exactly

what I needed to have done and what the results should be. Occasionally I

would email Dr. Courtier (spelling is wrong) at Stanford (I think) and he

would ans my questions. Dr. Russin listened to me and I feel that I know my

body very well now. I follow all tests, I even know how many tubes of blood

should be taken and what color they should be. I remember telling the lab

that I needed two purple not two pink at one point and they did not like

that but I was right!!! But they would not admit it. But I feel it is my

body and I have control. So now I only see Dr. Russin every three months.

But he has a wonderful Dr. that works with him a Dr. Lam she is a

specialist in medication and knows so much about Tasigna, Gleevec and

Sprycel. She is amazed at how much I know. I did not even have a PCR test

for 3 years. I found out about it through our group here and pushed for it

and now I get them done. I am PCRU. I did not know about QTc for the heart

(being on Tasigna) I asked for it and now I have that done occasionally.. It

is through this group that I have learned all about CML and I take charge of

my care. My Dr. Russin is wonderful because he goes to seminars about it and

has learned a lot too.

My life is wonderful right now. I am PCRU and I feel great. I have no side

effects to care about. I was on Gleevec for 9 months went off because of

horrendous side effects. Went on Sprycel for 3 years then got Plural Efusion

and other bad things. Now on Tasigna for over a year and feel like a new

person.

I live in Discovery Bay-know where that is?

Sharon T

_____

From: [mailto: ] On Behalf Of mary

mary

Sent: Friday, June 12, 2009 8:46 AM

Subject: RE: [ ] Beth has been " outed "

Hi Sharon,

I was diagnosed the same month and I live not far from you, Sacramento. May

I ask which Dr. you are seeing and which treatment you are on?

From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net>

net>

Subject: RE: [ ] Beth has been " outed "

groups (DOT) <mailto:%40> com

Date: Friday, June 12, 2009, 8:42 AM

Hi Beth,

I have not read the whole story but I just wanted to ask you where do you

live?

I live in the Bay Area.

I have CML. Have had it since Juluy 2004-coming up on my 5 year anniversary.

I was just inquisitive as to where you are from.

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

bethgalliart@ comcast.net

Sent: Friday, June 12, 2009 8:28 AM

groups (DOT) com

Subject: Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild

ride. I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts

started going up, doc put me on Sprycel and did the mutation test. Also,

because my basos were going up he said I was in accelerated phase and needed

to go to transplant ASAP. Like a good little patient I went for the consult

and the process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners

is a doctor who used to be a big wig at UCSF. He was able to get me in to

see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

just been amazing. Anyways, Stanford had told me there were no trials in

California that would be appropriate for me. Before I even had my first

appointment, Dr. Shah had his research coordinator e-mail me the informed

consent for the Ariad trial. (As a side note, I knew about the trial from

this group, but didn't think it was realistic for me because the sites were

too far away). Needless to say, I signed up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was

based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

was quite firmly in chronic phase! I would much rather be facing what I'm

facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

at Stanford and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the

" high " points of my journey. I am so excited to start the Ariad trial and

kick this beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

I too have learned quite a bit this group and feel  my Kaiser Dr. (Grennan) has

been very proactive from the beginning and appreciate his honesty when he says

he does not quite have an answer to my question or concerns but will consult

with others.  I too keep him abreast of info I may find including emails from

this group.  He had me consult with Dr. Miklos from Standford in the beginning

and he actually advised me on the types of testing that should be performed to

monitor my CML, he did not recommend a transplant (I have a mtached sibling)

because he felt the Gleevec was working it's miracle but he did warn me to keep

an eye on the possibility of resistance and mutations.  I was on Gleevec 3 1/2

yrs but it was hard on my liver and uncomfortable side effects, then I went on

Sprycel, my counts for the first time elevated and now am looking at what

treatment will be best. 

 

I must say that I got a little complacent over the years because my counts were

always normal so i didn't pay close enough attention to reaching CCR.  Just so

much to think about these days ... thanks for sharing with me.  i am definitely

being more alert and inquisitive. 

From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net>

net>

Subject: RE: [ ] Beth has been " outed "

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, June 12, 2009, 8:42 AM

Hi Beth,

I have not read the whole story but I just wanted to ask you where do you

live?

I live in the Bay Area.

I have CML. Have had it since Juluy 2004-coming up on my 5 year anniversary.

I was just inquisitive as to where you are from.

Sharon T

_____

From: groups (DOT) com [mailto:] On Behalf Of

bethgalliart@ comcast.net

Sent: Friday, June 12, 2009 8:28 AM

groups (DOT) com

Subject: Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild

ride. I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts

started going up, doc put me on Sprycel and did the mutation test. Also,

because my basos were going up he said I was in accelerated phase and needed

to go to transplant ASAP. Like a good little patient I went for the consult

and the process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners

is a doctor who used to be a big wig at UCSF. He was able to get me in to

see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

just been amazing. Anyways, Stanford had told me there were no trials in

California that would be appropriate for me. Before I even had my first

appointment, Dr. Shah had his research coordinator e-mail me the informed

consent for the Ariad trial. (As a side note, I knew about the trial from

this group, but didn't think it was realistic for me because the sites were

too far away). Needless to say, I signed up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was

based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

was quite firmly in chronic phase! I would much rather be facing what I'm

facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

at Stanford and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the

" high " points of my journey. I am so excited to start the Ariad trial and

kick this beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

I didn't answer that very well but i believe my appointment is with Dr. Miklos

From: bethgalliart@... <bethgalliart@...>

Subject: Re: [ ] Beth has been " outed "

Date: Friday, June 12, 2009, 8:48 AM

Hi ,

I was treated by Dr. Coutre. Who is your appointment with at Stanford?

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Beth,

I am sorry you had such a bad time with the stanford drs. I d like to

be in a position to say something good for stanford hospital but I had

a nightmarish experience there myself (I work across the street at the

university, not the hospital), I wouldn't recommend it to anyone. Here

I stick with Kaiser and see a cml specialist in Paris when in doubt,

but I have been doing pretty good these last few years and I just need

the pills and the tests from Kaiser. I also had elevated basophils at

dx and it spiked a few time in the first 2 years (now it stays at 0 or

1), a bad sokal score and a dr no too optimistic at the beginning and

pushing for transplant what I flatly refused. Fortunately that's one

time when my pigheaded tendencies were really useful. Now, 4 years

later I am PCRU. I am glad you found a competent and level headed dr,

that's half the battle.

Cheers,

Marcos.

On Fri, Jun 12, 2009 at 8:27 AM, <bethgalliart@...> wrote:

>

>

>

>

> Thanks for the warm welcome Lottie! The last few months have been a wild

> ride. I'm still processing some of what happened.

>

> I had been treated at Stanford since diagnosis. In March, when my counts

> started going up, doc put me on Sprycel and did the mutation test. Also,

> because my basos were going up he said I was in accelerated phase and needed

> to go to transplant ASAP.  Like a good little patient I went for the consult

> and the process for a donor is ongoing.

>

> Fortunately for me, I work at a Private Equity firm and one of our partners

> is a doctor who used to be a big wig at UCSF. He was able to get me in to

> see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

> just been amazing. Anyways, Stanford had told me there were no trials in

> California that would be appropriate for me. Before I even had my first

> appointment, Dr. Shah had his research coordinator e-mail me the informed

> consent for the Ariad trial. (As a side note, I knew about the trial from

> this group, but didn't think it was realistic for me because the sites were

> too far away). Needless to say, I signed up immediately.

>

> Also, back to the accelerated phase. I had never had a BMB, everything was

> based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

> was quite firmly in chronic phase! I would much rather be facing what I'm

> facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

> at Stanford and I'm still sorting it all out.

>

> Anyways, bravo to anyone who has read this whole novel. You now know the

> " high " points of my journey. I am so excited to start the Ariad trial and

> kick this beastie back to the curb where it belongs.

>

> Beth

>

> [ ] Beth has been " outed "

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

> no matter when you joined the group. We are here to give you support no

> matter where you are in your journey, you have only to ask for help or just

> to share something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

> share information which can be of benefit to another member. I am sorry that

> you have been informed that you have the T315i mutation. Jackie had it and

> HHT took care of it. Hopefully for you it will also become a thing of the

> past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best

> in this next step of your journey. I have been on my journey nearly 14 years

> and at 80, I am told I am a miracle. I asked the local oncologist if I had

> lived longer than any of his patients and he said I was their miracle. Had I

> not left his care to go to a large institution that had a large research

> department and clinical trials, it would not be the case. I am in my 5th

> trial and feel this is the reason I am what some would call a miracle.

> Sometimes you will find that you can offer information your doctor was not

> aware of, as with your own upcoming trial, so you see, persistance pays off.

> Even when life sucks, we never give up. Other types of leukemia patients are

> not as lucky, their trials are elusive and they don't have as many chances

> or choices as we do. If we fail one, there is another.

> Hearts and hands together,

> Lottie

>

>

[Guest guest]

Dear Beth,

What a remarkable story! I am a Cmler who was diagnosis in November 2000, after

a routine blood work

with a Gyno/Endocrinologist, who formerly was the Head

Department of Loyola Medical School. Although Gleevec

was not available to the general public, I had to go on

Interferon. This was a very difficult drug, and during the time I was on this

almost 2 1/2 years, I never had a reduction in the white blood cells, or reached

a cytogenic or anywhere near remission.

After I had a horrible episode with Interferon and was rushed to an Emergency

local hospital, I had a major health problem with cancer anorexia.The problem

was a mixture of Levinquil antibiotics and Interferon. I soon flew out to Mayo

Clinic, in Rochester, MN., for a 2nd opinion. THere I had learned of many other

resources and about the Clinical Trials in many of the larger hospitals back in

Chicago, IL.

WHile I was on Interferon and it did not help me much.

I lost over 80Lbs., and was reduced down to 70lbs. person. It took me over 2

years to gain weight. In the mean I had started Gleevec, but only started on

smaller dosages, because I was in such a mental & physical wreck, much after

Interferon and antibiotics. There was not much F.Y.I's on Gleevec at that time

of my diagnosis, and there was no Cml support group either. Gleevec was in

Clinical Trials, however, being sick and weak, even the Internet was not at it

optima, where one could research and find another means. So for me there was

really no choices but to start Interferon.

In all of this I would support BMB & BMA, as the best indicator or diagnostic

tool there is in the world of Cml Leukemia. If you find yourself a excellent

Oncologist/Hematologist who is a Surgeon, and has a excellent bedside

manners,and treats you as a human, it is vital that you have your BMB with him

or her, as the

the thought of having them in many larger hospital Institutions, most medical

professional who are in these hospital are mostly in a rush, when it comes to

performing these BMB & BMA.

What I have learned from this web-site and other support groups, who's good at

BMA & BMB, and where one wouldn't go! My first BMB & BMA came from my current

General Oncologist, and I will continue to have them periodically, however, when

I seek other larger hospital Institutions, I will not permit them to have a new

BMB & BMA, just because they have their own Pathologist on sight. I learned this

the hardway, as last March 2008, I was interested in learning if I had any

mutations going against Gleevec, and or any of the other drugs, such as Sprycel,

or Tasigna. I sought the attention of MSKCC-Memorial Sloan Kettering. Lottie

put me in touch with a women who was in there clinical trials and even though I

wanted her Physician, I got stuck with the Head Department Chef of Staff, I

would like to mention that even a General Oncologist who does not have the same

diagnostic tools as larger Institional Hospital, cannot give one the same

treatment as the

hospitals can. However, if one finds a Oncologist/Hematologist who does not

rush to get the final results, and does not harm the patient by injury while

performing a BMB & BMA, then there is nothing wrong by selecting the right

person to do this testings. It is difficult to know whether you have the right

Physician who is in his or her right intentions for treament of cancer drugs, in

this illness. I would

asked about how the treatment is performed, and if there is any written

literature which explains clearly

how a BMB, and or a BMA is performed. Then if you have

any questions post them to our group, and surely you will receive many replies

to where you are traveling with this disease.

At MSKCC-Memorial Sloan-Kettering, they advise me on

being HLA blood typed. With much tripedation, I decided

I didn't want to do this. I have 7 other siblings who

are disease free, and if I ever really need this I will know who I want this

service with. In the mean time it

makes no sense in performing this test, if one is not

utilizing siblings blood. Because should you need a transfusion you must have

another HLA performed again.

So what's the point in speading unecessary funds for testing when they are not

in use, for the time?

Currently even though I have only been on Gleevec 400 mgs. for maybe 3 years, I

am in remission, and have

reached a CCR. Quarterly, I have PCR-Q from a University Hospital, and have a

General Oncologist,

who I would not trade for any big name hospital.

He is the only person I would trust in performing

a BMB & BMA. He is compassionate, and has NEVER

injuried me while performing one. I have my BMB & BMA

performed once every 2 1/2 years. I am due for one

soon in Aug 2009.

With all this new information, you may want to keep a short writing journal

before you start your therapy,

then write a letter to the Stanford's Medical Physician

and complain!!!! He perhaps would be removed from his position and placed maybe

somewhere in the Engineering

Department of Janitoral, on Stanford's Medical campus.

Nevertheless, it has been your fortune to have had an investor who is a Medical

Physician, to have taken

interested and found you the right resources. They

must be pretty desperate at Stanford, to jeopardize

someones health and to cohort them into a transplant!

Lucky for you, your angel was guiding you into a diffent directions.

Blessings to you, and may your happiness come in abundance, of learning the

lingo of Cmlers2 too!

Dory Doggie

________________________________

From: " bethgalliart@... " <bethgalliart@...>

Sent: Friday, June 12, 2009 10:27:57 AM

Subject: Re: [ ] Beth has been " outed "

Thanks for the warm welcome Lottie! The last few months have been a wild ride.

I'm still processing some of what happened.

I had been treated at Stanford since diagnosis. In March, when my counts started

going up, doc put me on Sprycel and did the mutation test. Also, because my

basos were going up he said I was in accelerated phase and needed to go to

transplant ASAP. Like a good little patient I went for the consult and the

process for a donor is ongoing.

Fortunately for me, I work at a Private Equity firm and one of our partners is a

doctor who used to be a big wig at UCSF. He was able to get me in to see Dr.

Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has just been

amazing. Anyways, Stanford had told me there were no trials in California that

would be appropriate for me. Before I even had my first appointment, Dr. Shah

had his research coordinator e-mail me the informed consent for the Ariad trial.

(As a side note, I knew about the trial from this group, but didn't think it was

realistic for me because the sites were too far away). Needless to say, I signed

up immediately.

Also, back to the accelerated phase. I had never had a BMB, everything was based

on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I was quite

firmly in chronic phase! I would much rather be facing what I'm facing in

chronic phase! Needless to say, I feel a bit betrayed by the folks at Stanford

and I'm still sorting it all out.

Anyways, bravo to anyone who has read this whole novel. You now know the " high "

points of my journey. I am so excited to start the Ariad trial and kick this

beastie back to the curb where it belongs.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Sharon,

Good for you! Sounds like you have been super proactive and made a difference in

your care.

I do know where Discovery Bay is--my parents have some friends that live in that

area.

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no

matter where you are in your journey, you have only to ask for help or just

to share something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that

you have been informed that you have the T315i mutation. Jackie had it and

HHT took care of it. Hopefully for you it will also become a thing of the

past.

Keep in touch; we will keep the light on for you. Wishing you all the best

in this next step of your journey. I have been on my journey nearly 14 years

and at 80, I am told I am a miracle. I asked the local oncologist if I had

lived longer than any of his patients and he said I was their miracle. Had I

not left his care to go to a large institution that had a large research

department and clinical trials, it would not be the case. I am in my 5th

trial and feel this is the reason I am what some would call a miracle.

Sometimes you will find that you can offer information your doctor was not

aware of, as with your own upcoming trial, so you see, persistance pays off.

Even when life sucks, we never give up. Other types of leukemia patients are

not as lucky, their trials are elusive and they don't have as many chances

or choices as we do. If we fail one, there is another.

Hearts and hands together,

Lottie

[Guest guest]

Hi ,

I know that Dr. Coutre has started a new trial. I don't remember the details (I

read about it on the Internet), but it started in January...

This will sound strange, but I have no doubt he is a good doctor and has done

good things. I just don't think he was the right doctor for me. I'll be curious

to see what your thoughts are after you meet with him.

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

Hi Marcos,

Thanks for your comments. I had seen your posts, and always wondered why you

were going to Kaiser, when Stanford was right there. I figured it was an

insurance thing.

I'm sure all hospitals/doctors have some sort of " story " in their past, we just

have to find the situation that works the best for ourselves!

Glad to hear that you are doing so well!

Beth

[ ] Beth has been " outed "

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

> no matter when you joined the group. We are here to give you support no

> matter where you are in your journey, you have only to ask for help or just

> to share something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

> share information which can be of benefit to another member. I am sorry that

> you have been informed that you have the T315i mutation. Jackie had it and

> HHT took care of it. Hopefully for you it will also become a thing of the

> past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best

> in this next step of your journey. I have been on my journey nearly 14 years

> and at 80, I am told I am a miracle. I asked the local oncologist if I had

> lived longer than any of his patients and he said I was their miracle. Had I

> not left his care to go to a large institution that had a large research

> department and clinical trials, it would not be the case. I am in my 5th

> trial and feel this is the reason I am what some would call a miracle.

> Sometimes you will find that you can offer information your doctor was not

> aware of, as with your own upcoming trial, so you see, persistance pays off.

> Even when life sucks, we never give up. Other types of leukemia patients are

> not as lucky, their trials are elusive and they don't have as many chances

> or choices as we do. If we fail one, there is another.

> Hearts and hands together,

> Lottie

>

>

[Guest guest]

Hi Dory,

Wow! What a journey you've had. Thank you for your kind words. The whole

situation is so surreal, I'm trying to just look forward right now!

Beth

[ ] Beth has been " outed "

Dear Beth,

You picked a good time to " out yourself " We are glad to have you as a member no

matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

We like to keep life as uncomplicated as possible, so we band together and share

information which can be of benefit to another member. I am sorry that you have

been informed that you have the T315i mutation. Jackie had it and HHT took care

of it. Hopefully for you it will also become a thing of the past.

Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

Hearts and hands together,

Lottie

[Guest guest]

HI Beth,

 

Are you ready for this week? I have heard many good things about Dr. Shah. Keep

us updated.

 

God Bless,

Jackie S.

>

>

>

>

> Thanks for the warm welcome Lottie! The last few months have been a wild

> ride. I'm still processing some of what happened.

>

> I had been treated at Stanford since diagnosis. In March, when my counts

> started going up, doc put me on Sprycel and did the mutation test. Also,

> because my basos were going up he said I was in accelerated phase and needed

> to go to transplant ASAP.  Like a good little patient I went for the consult

> and the process for a donor is ongoing.

>

> Fortunately for me, I work at a Private Equity firm and one of our partners

> is a doctor who used to be a big wig at UCSF. He was able to get me in to

> see Dr. Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has

> just been amazing. Anyways, Stanford had told me there were no trials in

> California that would be appropriate for me. Before I even had my first

> appointment, Dr. Shah had his research coordinator e-mail me the informed

> consent for the Ariad trial. (As a side note, I knew about the trial from

> this group, but didn't think it was realistic for me because the sites were

> too far away). Needless to say, I signed up immediately.

>

> Also, back to the accelerated phase. I had never had a BMB, everything was

> based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I

> was quite firmly in chronic phase! I would much rather be facing what I'm

> facing in chronic phase! Needless to say, I feel a bit betrayed by the folks

> at Stanford and I'm still sorting it all out.

>

> Anyways, bravo to anyone who has read this whole novel. You now know the

> " high " points of my journey. I am so excited to start the Ariad trial and

> kick this beastie back to the curb where it belongs.

>

> Beth

>

> [ ] Beth has been " outed "

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

> no matter when you joined the group. We are here to give you support no

> matter where you are in your journey, you have only to ask for help or just

> to share something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

> share information which can be of benefit to another member. I am sorry that

> you have been informed that you have the T315i mutation. Jackie had it and

> HHT took care of it. Hopefully for you it will also become a thing of the

> past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best

> in this next step of your journey. I have been on my journey nearly 14 years

> and at 80, I am told I am a miracle. I asked the local oncologist if I had

> lived longer than any of his patients and he said I was their miracle. Had I

> not left his care to go to a large institution that had a large research

> department and clinical trials, it would not be the case. I am in my 5th

> trial and feel this is the reason I am what some would call a miracle.

> Sometimes you will find that you can offer information your doctor was not

> aware of, as with your own upcoming trial, so you see, persistance pays off.

> Even when life sucks, we never give up. Other types of leukemia patients are

> not as lucky, their trials are elusive and they don't have as many chances

> or choices as we do. If we fail one, there is another.

> Hearts and hands together,

> Lottie

>

>

[Guest guest]

Hi Beth,

Stanford's benefits gives me the choice between quite a few insurance

plans and I considered switching to a plan paying for Stanford

hospital, but the times I went there they were consistently late (far

beyond acceptable limits), reliable only in being always rude, with an

inept bureaucracy like some mad soviet union era institution. And the

dr we saw for about 3mn didn't strike me as the most competent or

caring dr I have ever met, and I have seen some really sad examples in

army hospitals (in France). I could switch my insurance to see

somebody at UCSF but it would cost me about $10K more, and as long as

I stay in remission I d rather use the money to enjoy my good health

while I can, I have some expensive hobbies limited by an academic

salary. So far Kaiser has been ok, it has some up and downs and the

drs are not cml specialists (I see one in Paris), but with the

exception of one dr I didn't like (she was changed immediately)

everything was pretty smooth, including surgeries and ER visits. If

you can see a CML specialist like dr Shah you certainly should do it,

the first year is critical and until you are in remission you want

knowledgeable advice from your dr. And you deserve some peace of mind

with a dr you can trust.

I wish you a quick remission, hang in there, once you settle down

things will come back to normal.

Cheers,

Marcos.

On Sat, Jun 13, 2009 at 4:13 PM, <bethgalliart@...> wrote:

>

>

>

>

> Hi Marcos,

>

> Thanks for your comments. I had seen your posts, and always wondered why you

> were going to Kaiser, when Stanford was right there. I figured it was an

> insurance thing.

>

> I'm sure all hospitals/doctors have some sort of " story " in their past, we

> just have to find the situation that works the best for ourselves!

>

> Glad to hear that you are doing so well!

>

> Beth

>

> [ ] Beth has been " outed "

>>

>> Dear Beth,

>> You picked a good time to " out yourself " We are glad to have you as a

>> member

>> no matter when you joined the group. We are here to give you support no

>> matter where you are in your journey, you have only to ask for help or

>> just

>> to share something that happened to you or a story to tell.

>> We like to keep life as uncomplicated as possible, so we band together and

>> share information which can be of benefit to another member. I am sorry

>> that

>> you have been informed that you have the T315i mutation. Jackie had it and

>> HHT took care of it. Hopefully for you it will also become a thing of the

>> past.

>>

>> Keep in touch; we will keep the light on for you. Wishing you all the best

>> in this next step of your journey. I have been on my journey nearly 14

>> years

>> and at 80, I am told I am a miracle. I asked the local oncologist if I had

>> lived longer than any of his patients and he said I was their miracle. Had

>> I

>> not left his care to go to a large institution that had a large research

>> department and clinical trials, it would not be the case. I am in my 5th

>> trial and feel this is the reason I am what some would call a miracle.

>> Sometimes you will find that you can offer information your doctor was not

>> aware of, as with your own upcoming trial, so you see, persistance pays

>> off.

>> Even when life sucks, we never give up. Other types of leukemia patients

>> are

>> not as lucky, their trials are elusive and they don't have as many chances

>> or choices as we do. If we fail one, there is another.

>> Hearts and hands together,

>> Lottie

>>

>>

[Guest guest]

Hi Jackie!

Can't wait. How about you? You are on deck for tomorrow! Yee haw.

[ ] Beth has been " outed "

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

> no matter when you joined the group. We are here to give you support no

> matter where you are in your journey, you have only to ask for help or just

> to share something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

> share information which can be of benefit to another member. I am sorry that

> you have been informed that you have the T315i mutation. Jackie had it and

> HHT took care of it. Hopefully for you it will also become a thing of the

> past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best

> in this next step of your journey. I have been on my journey nearly 14 years

> and at 80, I am told I am a miracle. I asked the local oncologist if I had

> lived longer than any of his patients and he said I was their miracle. Had I

> not left his care to go to a large institution that had a large research

> department and clinical trials, it would not be the case. I am in my 5th

> trial and feel this is the reason I am what some would call a miracle.

> Sometimes you will find that you can offer information your doctor was not

> aware of, as with your own upcoming trial, so you see, persistance pays off.

> Even when life sucks, we never give up. Other types of leukemia patients are

> not as lucky, their trials are elusive and they don't have as many chances

> or choices as we do. If we fail one, there is another.

> Hearts and hands together,

> Lottie

>

>

[Guest guest]

Always good to get a second opinion. I don't understand why anyone is

determining what phase without a BMB. My heme wouldn't even say " CML " before he

got my BMB results back to be sure. They need to the percentage of blasts that

are present, right? I'm sorry to hear that happened. It's so weird for me to

hear that since I had been so impressed with Stanford when I went there in 2002

for a second opinion when I had non hodgkin's lymphoma. Good look with the

clinical trial.

>

>

>

> Thanks for the warm welcome Lottie! The last few months have been a wild ride.

I'm still processing some of what happened.

>

>

>

> I had been treated at Stanford since diagnosis. In March, when my counts

started going up, doc put me on Sprycel and did the mutation test. Also, because

my basos were going up he said I was in accelerated phase and needed to go to

transplant ASAP.  Like a good little patient I went for the consult and the

process for a donor is ongoing.

>

>

>

> Fortunately for me, I work at a Private Equity firm and one of our partners is

a doctor who used to be a big wig at UCSF. He was able to get me in to see Dr.

Shah. BTW--I cannot begin to say how much I like Dr. Shah, he has just been

amazing. Anyways, Stanford had told me there were no trials in California that

would be appropriate for me. Before I even had my first appointment, Dr. Shah

had his research coordinator e-mail me the informed consent for the Ariad trial.

(As a side note, I knew about the trial from this group, but didn't think it was

realistic for me because the sites were too far away). Needless to say, I signed

up immediately.

>

>

>

> Also, back to the accelerated phase. I had never had a BMB, everything was

based on blood work. First thing, Dr. Shah ordered a BMB and it confirmed I was

quite firmly in chronic phase! I would much rather be facing what I'm facing in

chronic phase! Needless to say, I feel a bit betrayed by the folks at Stanford

and I'm still sorting it all out.

>

>

>

> Anyways, bravo to anyone who has read this whole novel. You now know the

" high " points of my journey. I am so excited to start the Ariad trial and kick

this beastie back to the curb where it belongs.

>

>

>

> Beth

> [ ] Beth has been " outed "

>

>

>

>

>

>

>

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that you

have been informed that you have the T315i mutation. Jackie had it and HHT took

care of it. Hopefully for you it will also become a thing of the past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

> Hearts and hands together,

> Lottie

>

>

[Guest guest]

The whole thing is still a bit surreal to me. But, I am glad to be on track now

before undergoing a huge treatment without the " right " data!

[ ] Beth has been " outed "

>

>

>

>

>

>

>

>

> Dear Beth,

> You picked a good time to " out yourself " We are glad to have you as a member

no matter when you joined the group. We are here to give you support no matter

where you are in your journey, you have only to ask for help or just to share

something that happened to you or a story to tell.

> We like to keep life as uncomplicated as possible, so we band together and

share information which can be of benefit to another member. I am sorry that you

have been informed that you have the T315i mutation. Jackie had it and HHT took

care of it. Hopefully for you it will also become a thing of the past.

>

> Keep in touch; we will keep the light on for you. Wishing you all the best in

this next step of your journey. I have been on my journey nearly 14 years and at

80, I am told I am a miracle. I asked the local oncologist if I had lived longer

than any of his patients and he said I was their miracle. Had I not left his

care to go to a large institution that had a large research department and

clinical trials, it would not be the case. I am in my 5th trial and feel this is

the reason I am what some would call a miracle. Sometimes you will find that you

can offer information your doctor was not aware of, as with your own upcoming

trial, so you see, persistance pays off. Even when life sucks, we never give up.

Other types of leukemia patients are not as lucky, their trials are elusive and

they don't have as many chances or choices as we do. If we fail one, there is

another.

> Hearts and hands together,

> Lottie

>

>