Late, not great news

[Guest guest]

Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in

any new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna. I will need a lot of blood work

done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had

many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

Welcome back Lottie so very good to see your handwriting on the wall again..

best to Jimmy and great to have you home

Skip

dx'ed 33++

1977 that is as far as we got,

________________________________

From: Lottie Duthu     <lotajam@...>

CML < >

Sent: Sun, July 4, 2010 1:28:57 AM

Subject: [ ] Late, not great news

 

Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in any

new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna. I will need a lot of blood work

done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to our

group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had many

ups and downs, yet he continually urges us to press on. Wow, what fortitude. We

wish all the best for our buddy. I think I may be the oldest in the group (82),

with Bobby Doyle running a close second. Make your plans as usual, you will get

to see them come to fruition. At first, I wouldn't buy anything for myself, but

after joining a support group, I saw that there was hope on the horizon and went

out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu    

[Guest guest]

Welcome back Lottie, I have missed you so much. Hang in there, you are such

a battler and I truly hope you can find some relief for your pain and that

Tasigna works for you. I can't imagine how difficult it is for you to travel

when you are in so much pain.

Big hugs,

From: [mailto: ] On Behalf Of Lottie

Duthu

Sent: Sunday, 4 July 2010 2:29 PM

CML

Subject: [ ] Late, not great news

Hi everyone, I have been wanting to post, but as you know, I have been ill

and in a lot of pain. I went to MDACC this week and I was officially taken

off SKI after being unofficially off for nearly 2 months. There are no slots

open in any new drug trials, but the plan is to stay as I am for a month and

if no slots open in that time, I will be put on Tasigna. I will need a lot

of blood work done, but since I have Home Health come to my home since my

last hospitalization, the nurses advised that they can draw the samples so I

won't have to travel out of town as much. I see a local oncologist, but he

is in the next burg from me and an inconvenience, albiet a small one

compared to some.

I have some relief from the pain after receiving two hip injections on

Friday. We are hoping this is a small blip on the radar screen. Just keep

the prayers going and going. I see by today's mail we have some new members.

Welcome to our group, this is a 24/7 help line, with someone always willing

to answer your questions. I was diagnosed 15 years ago this month, so I hope

you understand that this is a chronic disease that you can live with for a

long time. We have been on every drug used to treat CML, some which are no

longer used as a general rule, but I'm sure they have found a use for the

formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how

long, but it is well over 30 years at this point. He is our bellweather.

He's had many ups and downs, yet he continually urges us to press on. Wow,

what fortitude. We wish all the best for our buddy. I think I may be the

oldest in the group (82), with Bobby Doyle running a close second. Make your

plans as usual, you will get to see them come to fruition. At first, I

wouldn't buy anything for myself, but after joining a support group, I saw

that there was hope on the horizon and went out and bought a life insurance

policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

Lottie, what do you mean, Bobby Doyle is right behind you in age???? I am WAAAAY

younger, just turned 80 in Dec.!!!!!!!!!!! Glad to see you post, love, Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Lottie Duthu <lotajam@...>

Subject: [ ] Late, not great news

" CML " < >

Date: Sunday, July 4, 2010, 12:28 AM

 

Hi everyone, I have been wanting to post, but as you know, I have been ill

and in a lot of pain. I went to MDACC this week and I was officially taken off

SKI after being unofficially off for nearly 2 months. There are no slots open

in any new drug trials, but the plan is to stay as I am for a month and if no

slots open in that time, I will be put on Tasigna. I will need a lot of blood

work done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had

many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

Lottie It is great to see you posting again. I am sorry to hear that you are

still in pain. I will keep praying for you. You are just an inspiring person for

this group and Bobby ofcourse. Please keep in touch and let us know how you are

doIng. GOD BLESS

T

Dxd 2/2003

Sent from my Verizon Wireless BlackBerry

[ ] Late, not great news

Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in

any new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna. I will need a lot of blood work

done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had

many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

>

> Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in

any new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna.

_______________________________

Hi Lottie-da!

Glad to hear from you and sorry that you are in so much pain and having other

problems also. Hope it will soon be much better.

The Ariad phase 2 trials are supposed to start late Fall.

Have you not been on Tasigna yet? I started it just over 3 months ago and I

like this drug....I did get a very itchy rash but it is much better now (I am

doing some light treatments at the dermatologist's office). I have more energy

on this drug...just over-all feel better. Also my 3mo results were VERY good for

me...trying to get my pcr down after my episodes off drug with Sprycel for PE.

IF you have to do Tasigna through Medicare Part D....remember to look at PSI

(Patient Services Inc) for co-pay assistance.

I will keep sending healing vibes into the universe for you...you deserve lots

of good Karma.

hugs to you, Maui Nanc

[Guest guest]

Lottie, so great so see your post. You've been in my thoughts and

prayers. You are missed when you don't post.

Take care,

Love to a dear friend,

Gay

On Jul 3, 2010, at 11:28 PM, Lottie Duthu wrote:

> Hi everyone, I have been wanting to post, but as you know, I have

> been ill and in a lot of pain. I went to MDACC this week and I was

> officially taken off SKI after being unofficially off for nearly 2

> months. There are no slots open in any new drug trials, but the plan

> is to stay as I am for a month and if no slots open in that time, I

> will be put on Tasigna. I will need a lot of blood work done, but

> since I have Home Health come to my home since my last

> hospitalization, the nurses advised that they can draw the samples

> so I won't have to travel out of town as much. I see a local

> oncologist, but he is in the next burg from me and an inconvenience,

> albiet a small one compared to some.

>

> I have some relief from the pain after receiving two hip injections

> on Friday. We are hoping this is a small blip on the radar screen.

> Just keep the prayers going and going. I see by today's mail we have

> some new members. Welcome to our group, this is a 24/7 help line,

> with someone always willing to answer your questions. I was

> diagnosed 15 years ago this month, so I hope you understand that

> this is a chronic disease that you can live with for a long time. We

> have been on every drug used to treat CML, some which are no longer

> used as a general rule, but I'm sure they have found a use for the

> formula elsewhere.

>

> Our friend, Skip in Nova Scotia has had CML so long, they are not

> sure how long, but it is well over 30 years at this point. He is our

> bellweather. He's had many ups and downs, yet he continually urges

> us to press on. Wow, what fortitude. We wish all the best for our

> buddy. I think I may be the oldest in the group (82), with Bobby

> Doyle running a close second. Make your plans as usual, you will get

> to see them come to fruition. At first, I wouldn't buy anything for

> myself, but after joining a support group, I saw that there was hope

> on the horizon and went out and bought a life insurance policy.

> Best of the best to everyone,

> Lottie Duthu

>

>

[Guest guest]

Lottie,

So great to see your post.I will continue to pray for you.I am so sorry you

are in so much pain.I hope they find a solution for it.Happy 4th of July to you

and all my fellow CMLers..

SharonS

>

> Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in

any new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna. I will need a lot of blood work

done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

>

> I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

>

> Our friend, Skip in Nova Scotia has had CML so long, they are not sure how

long, but it is well over 30 years at this point. He is our bellweather. He's

had many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

> Best of the best to everyone,

> Lottie Duthu

>

>

>

[Guest guest]

Dear Lottiescreen. Just keep the prayers going and going. I see by today's mail

we have some new members. Welcome to our group, this is a 24/7 help line, with

someone always willing to answer your questions. I was diagnosed 15 years ago

this month, so I hope you understand that this is a chronic disease that you can

live with for a long time. We have been on every drug used to treat CML, some

which are no longer used as a general rule, but I'm sure they have found a use

for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had many

ups and downs, yet he continually urges us to press on. Wow, what fortitude. We

wish all the best for our buddy. I think I may be the oldest in the group (82),

with Bobby Doyle running a close second. Make your plans as usual, you will get

to see them come to fruition. At first, I wouldn't buy anything for myself, but

after joining a support group, I saw that there was hope on the horizon and went

out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

God Bless You Lottie!!!  We sure have missed you!!!

Jo-Dee

From: Lottie Duthu <lotajam@...>

Subject: [ ] Late, not great news

" CML " < >

Date: Sunday, July 4, 2010, 12:28 AM

 

Hi everyone, I have been wanting to post, but as you know, I have been ill

and in a lot of pain. I went to MDACC this week and I was officially taken off

SKI after being unofficially off for nearly 2 months. There are no slots open

in any new drug trials, but the plan is to stay as I am for a month and if no

slots open in that time, I will be put on Tasigna. I will need a lot of blood

work done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

Our friend, Skip in Nova Scotia has had CML so long, they are not sure how long,

but it is well over 30 years at this point. He is our bellweather. He's had

many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

Best of the best to everyone,

Lottie Duthu

[Guest guest]

Lottie--God bless you! I am so glad you are back. I checked in tonight just to

see if you might be and sure enough--here you were! It is encouraging to see

how our prayers are answered on your behalf! I know it isn't easy to go through

all these trials and tribulations, but you are a beacon to the rest of us in how

to handle it all with such grace and fortitude.

Take care, Dear Lottie, and remember you are in my prayers every single day.

God bless!

Vicki

>

> Hi everyone, I have been wanting to post, but as you know, I have been ill and

in a lot of pain. I went to MDACC this week and I was officially taken off SKI

after being unofficially off for nearly 2 months. There are no slots open in

any new drug trials, but the plan is to stay as I am for a month and if no slots

open in that time, I will be put on Tasigna. I will need a lot of blood work

done, but since I have Home Health come to my home since my last

hospitalization, the nurses advised that they can draw the samples so I won't

have to travel out of town as much. I see a local oncologist, but he is in the

next burg from me and an inconvenience, albiet a small one compared to some.

>

> I have some relief from the pain after receiving two hip injections on Friday.

We are hoping this is a small blip on the radar screen. Just keep the prayers

going and going. I see by today's mail we have some new members. Welcome to

our group, this is a 24/7 help line, with someone always willing to answer your

questions. I was diagnosed 15 years ago this month, so I hope you understand

that this is a chronic disease that you can live with for a long time. We have

been on every drug used to treat CML, some which are no longer used as a general

rule, but I'm sure they have found a use for the formula elsewhere.

>

> Our friend, Skip in Nova Scotia has had CML so long, they are not sure how

long, but it is well over 30 years at this point. He is our bellweather. He's

had many ups and downs, yet he continually urges us to press on. Wow, what

fortitude. We wish all the best for our buddy. I think I may be the oldest in

the group (82), with Bobby Doyle running a close second. Make your plans as

usual, you will get to see them come to fruition. At first, I wouldn't buy

anything for myself, but after joining a support group, I saw that there was

hope on the horizon and went out and bought a life insurance policy.

> Best of the best to everyone,

> Lottie Duthu

>

>

>