Intro

[Guest guest]

Hi ,

Thanks for the welcome. I had posted quite a bit last year, but haven't had

time since Summer began. Our son had an MRI at age 10-months, which showed ACC.

A neurologist ordered the test.

Re: Intro

, welcome aboard! How did you know that your son had a congenital ACC?

Who tested for that?

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Kathy, is it possible to have my DAN nutritionist do the protocol if I

show him Goldberg's list? He is very open-minded, but I am not to sure if he

is updated with DrG latest treatments. I really hope that the Northern N. Y

..clinic will open this year- the thought of that makes me feel so much more

alive! Thanks again!

[Guest guest]

You have to have an MD or a Nurse Practitioner or P.A. working with a

Physician. Someone has to interpret the tests which a nutritionist could not

do either by training or legally and then the medications have to be ordered

based upon the test results, history, and physical. Since the child is

constantly being bombarded by triggers to the immune system and is growing

the medication schedule has to be evaluated on a weekly basis. Lab tests have

to be done periodically. This is a medical protocol that is no different from

the protocol for TB or Diabetes or any other disease. Kathy R

[Guest guest]

Hi ,

Sensory Integration is a " soft " neurological sign. If I remember correctly, I

believe according to the book " THE OUT OF SYNC CHILD " that anyone can have

sensory integration disorder, even those with " no other issues, " however it is

very common in children with autism, and other autistic spectrum neurological

disorders such as PDD. It is now known by many to also be common in children

with apraxia.

If you have not yet taken your child to a qualified SLP I suggest that would be

an important part of finding out if your child has apraxia. You need to locate

a Speech Language Pathologist who has experience and training in working with

apraxic children since not all SLPs are knowledgeable about oral motor disorders

like apraxia. You can contact the American Speech Hearing Association (ASHA)

which there are links for at our website http://www.apraxia.cc

I also suggest that you should seek the diagnosis of a Developmental

Pediatrician and/or Neurologist that is experienced and knowledgeable in

diagnosing and treating condition like apraxia, autism, and other disorders.

I'm not saying this is the case with your child, but it is not unheard of for

apraxic children to be MIS diagnosed as PDD by professionals who are not

knowledgeable. You need to seek out those that are knowledgeable and respected

in both the medical and speech field.

If in fact your child is PDD, I've heard wonderful things about ABA therapy.

The only criticism I've heard from speech professionals is that there is not

enough ST (speech therapy) or OT (occupational therapy) to address the apraxia.

Even though the medical community is just beginning to suspect that many

autistic children have oral and verbal apraxia, this has been accepted as true

by many speech professionals who specialized in this area for awhile.

I'm a parent like you, not a professional, and I do hope that the professionals

on this list will be able to direct you better than I. It may help for you to

say what state or country you are from?

Hope that helps!

Best,

[Guest guest]

Hi and Welcome!

It is agreed that oral apraxia can be diagnosed as young as 18 months

old, but like you, when my son was first diagnosed I read online at another

apraxia website that a child could not be positively diagnosed with verbal

apraxia until the age of three. Dr. Marilyn Agin, who is a medical expert in

apraxia and autism, and the key medical person behind the CHERAB Foundation,

believes that verbal apraxia can be diagnosed sooner than the age of three. She

can more specifically address what she looks for.

In addition, there are other " soft " neurological signs to look for

when you have a child with apraxia: specifically hypotonia and

sensory integration disorders. Many apraxic children have either one

or both of these signs as well, and these " soft " signs are not

always " picked up " by the average parent or pediatrician. This is

one of the reasons why we say to seek out a knowledgeable

developmental pediatrician and/or neurologist. It's shocking that

not all apraxia websites stress the importance of seeking medical

evaluations for a child with suspected apraxia-but that's why we are

here!

Whether you know 100% or not if your child has apraxia, it is

believed by the experts that if apraxia is suspected, that

appropriate therapy should begin as early as possible.

You can find all the early warning signs of verbal or oral apraxia at

our website at http://www.apraxia.cc Please check our index. Hope

that helps!

Best,

[Guest guest]

Could you please explain what hypotonia and sensory integration

disorders are? Have you ever heard of a link between

seizures/epilepsy and apraxia? It seems as if somehow a child that

has had a seizure and has been diagnosed w/apraxia that they are

somehow linked and not just random, separate conditions. Any

comments?

[Guest guest]

lisa ,

we have seen a ped developmental specialist in oct last year and we have a return visit this week..some one from the list gave me the name of a slp here in va that deals alot with apraxia and i will be asking for a referal...

it concerns me to start the aba without a proper dx for the apraxia since she will have some things with held from her as to prompt her to speek...what if she cant!

when she was dx pdd i agred with the dx because last june she showed all the signs of autism although they were mild...she has made so much progress at this point i honestly dont know the correct answer..she still has sensory issues as well as social and of course speech( at 31 months her age level is 12 mos )...i do see apraxia in her..they way she looks so strained to make words( she says 6..baby,ball,book,bird,bye and whe for where) also in the way her pitch changes ie baaaaaBEE...she bables alot with mostly vowel sounds..all of these i understand are typical of apraxia...

thanks for your help and advice as i feel lost!

wendy

HAPPY VALENTINES DAY

[Guest guest]

Welcome to the group, Cecilia! Sorry about your RA diagnosis, and I hope

you can feel well enough to spend more time with us soon.

Looking forward to hearing more from you,

[ ] Intro

> Hello,

>

> My name is Cecilia. I thought I would say hello because I did join a

> few months ago and it is about time I introduced myself.

>

> I have RA which was offically diagnosed about 4 years ago although I

> think I had it a few years before that but my doctors just didn't get

> it.

>

> I will keep this short because sitting at the computer is not

> comfortable for me ar times.

[Guest guest]

Welcome, Cecelia. I hope you will avail yourelf of the wonderful

support and friendships found here. I know sometimes keyboarding is

rough...but as you can, this is a wonderful place to come & share.

Hugs of Hope...

Tess

[Guest guest]

Welcome to the club, Donna. I too was an honor student and now am reduced

to a quivering, useless blob of protoplasm who has to leave a trail of bread

crumbs to find my way back from the mailbox. Methinks the human species has

gone way overboard playing around with chemicals and many inventions in an

attempt to improve our condition only to have let a monster out of its cage.

I am seriously toying with the idea of moving into a deep rainforest

somewhere and take my chances with the coral snakes and devilish assorted

predators just for the chance of breathing decent air and sipping

unpolluted, non-chemically poisoned water.

Best wishes to you..............Betsy

----- Original Message -----

From: " D J " <djnova50@...>

< >

Sent: Tuesday, January 18, 2005 3:01 PM

Subject: [] Intro

><snip>

> To think that at one time i was an honor student.

>

> Donna

>

[Guest guest]

Hi ,

Welcome to our group! Amazing faith and strength you must have to be a single Mom with 3 beautiful children with autism. I hope you will find the support and friendship you need in our group.

Give me a call if you need anything.

Yours,

n

216-310-9692

In a message dated 1/14/07 9:19:35 PM Eastern Standard Time, DillardRN@... writes:

I'd like to introduce myself...My name is and I plan on moving my children to Cuyahoga County very soon...I am the mother to 3 beautiful children, all who have autism...I just recently became a single mom too...life is chaotic and hard...I have family in Cuyahoga county, thus the reason for the move...my children have been involved in ABA, ST, OT, PT, horse riding therapy, pool therapy, and music therapy...we tried the GFCF diet with no change...my children are incredibly social and loving...i am truly blessed to have them in my life...I look forward to meeting you and learning much from all of you...

--mom to Hayden (6), Reagan (5), Savannah (3.5)

[Guest guest]

- Welcome to Cuyahoga County and to the group! Let us know if

you need to find service providers, etc, and I hope you have an

uneventful move. - mom to Bobby 8, Ian 6, Yoli 3

>

> I'd like to introduce myself...My name is and I plan on moving

my children to Cuyahoga County very soon...I am the mother to 3

beautiful children, all who have autism...I just recently became a

single mom too...life is chaotic and hard...I have family in Cuyahoga

county, thus the reason for the move...my children have been involved

in ABA, ST, OT, PT, horse riding therapy, pool therapy, and music

therapy...we tried the GFCF diet with no change...my children are

incredibly social and loving...i am truly blessed to have them in my

life...I look forward to meeting you and learning much from all of

you...

>

> --mom to Hayden (6), Reagan (5), Savannah (3.5)

>

[Guest guest]

- Welcome to Cuyahoga County and to the group! Let us know if

you need to find service providers, etc, and I hope you have an

uneventful move. - mom to Bobby 8, Ian 6, Yoli 3

>

> I'd like to introduce myself...My name is and I plan on moving

my children to Cuyahoga County very soon...I am the mother to 3

beautiful children, all who have autism...I just recently became a

single mom too...life is chaotic and hard...I have family in Cuyahoga

county, thus the reason for the move...my children have been involved

in ABA, ST, OT, PT, horse riding therapy, pool therapy, and music

therapy...we tried the GFCF diet with no change...my children are

incredibly social and loving...i am truly blessed to have them in my

life...I look forward to meeting you and learning much from all of

you...

>

> --mom to Hayden (6), Reagan (5), Savannah (3.5)

>

[Guest guest]

I was on it for about 16 mths it worked for awhile then I became immune again.

the nice thing about it was no side effects & it worked great for awhile now Im

on a clinical trial for amn 107 seems to be working fine.

[ ] Intro

Hi from Canada. I was diagnosed with CML 14 months ago. I have been

on Gleevec for about 12 months, but it is not achieving the results the

hematologist is looking for so I am going to be in the clinical trials

for a new drug...Dasatinib/ Sprycel starting next Wednesday. It was

just approved in Canada 2 weeks ago. Is there anyone in the group who

takes this drug for their CML?

________________________________________________________________________________\

____

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

[Guest guest]

Hello from Newfoundland, the deep freeze of the east

coast. 8-( brrrrr

I was Dx in Oct./03 and have been on Gleevec since

Feb/04/

The Gleevec is no longer doing the job it once did for

me so I am being considered for the AMN107 trials.

I hope that this will happen as I don't know what

course my Dr would take if it doesn't.

I am hoping that taking part in this trial will be a

bit of payback for all the people that tested Gleevec.

I will try to keep the group informed on what is

happening with the trial.

Best wishes and long life to all!

Terry

$2.00 Is All You need Spend!

http://starturl.com/amlhi

Get news delivered with the All new . Enjoy RSS feeds right on

your Mail page. Start today at http://mrd.mail./try_beta?.intl=ca

[Guest guest]

Hi

I just rejoined the List a couple of weeks ago so I wasn't aware you had become

resistant to Sprycel. I'm on it now--almost a year now--and my QPCR is 0.0003.I

went into this trial because I became resistant to Gleevec. You're the first

person I've heard of that has become resistant to Sprycel. Sorry you're having

to go through this. Do you know of others who have become resistant after such

a short time? Best of luck with AMN 107. Also there's the other vaccine at

Cancer Center in Houston.

Warmly,

L

[ ] Intro

Hi from Canada. I was diagnosed with CML 14 months ago. I have been

on Gleevec for about 12 months, but it is not achieving the results the

hematologist is looking for so I am going to be in the clinical trials

for a new drug...Dasatinib/ Sprycel starting next Wednesday. It was

just approved in Canada 2 weeks ago. Is there anyone in the group who

takes this drug for their CML?

__________________________________________________________

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

[Guest guest]

Hi there,

I am also from Canada and my husband started with Sprycel 2 months

ago. So far there have been no noticeable side effects. He is

currently on 100mg once a day. What dosage are you going to be

starting on?

Coralee

On May 17, 2007, at 3:11 PM, Lusty wrote:

> Hi from Canada. I was diagnosed with CML 14 months ago. I have been

> on Gleevec for about 12 months, but it is not achieving the results

> the

> hematologist is looking for so I am going to be in the clinical trials

> for a new drug...Dasatinib/Sprycel starting next Wednesday. It was

> just approved in Canada 2 weeks ago. Is there anyone in the group who

> takes this drug for their CML?

>

>

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

[Guest guest]

Hi Terry,

Have you considered asking your doctor about dasatinib (Sprycel)? It

is now approved in Canada. My husband has been on it for 2 months now

and things are going well. Brisol Myers Squibbs who makes the drug

has a special program called " Pathways " for those who do not have

insurance to cover the drug.

Coralee

On May 17, 2007, at 4:34 PM, Terry & Whelan wrote:

> Hello from Newfoundland, the deep freeze of the east

> coast. 8-( brrrrr

>

> I was Dx in Oct./03 and have been on Gleevec since

> Feb/04/

> The Gleevec is no longer doing the job it once did for

> me so I am being considered for the AMN107 trials.

> I hope that this will happen as I don't know what

> course my Dr would take if it doesn't.

> I am hoping that taking part in this trial will be a

> bit of payback for all the people that tested Gleevec.

> I will try to keep the group informed on what is

> happening with the trial.

> Best wishes and long life to all!

> Terry

>

> $2.00 Is All You need Spend!

> http://starturl.com/amlhi

>

> Get news delivered with the All new . Enjoy RSS feeds

> right on your Mail page. Start today at http://mrd.mail./

> try_beta?.intl=ca

>

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

[Guest guest]

Hi Coralee,

I am going to be taking 100 mg a day I am not sure whether it will be

once a day or twice a day. I'll know when I get my first

prescription. We had to wait for the Insurance Company and Bristol

Myers Squibb to work out the details for the approval. They have

just started using it here in Ontario so most of the private

Insurance Companies are still working out the details. I am glad to

hear that your husband experiences no noticeable side effects as I

was hoping there would be less of those for me also. The Gleevec was

great when I was on 400 mg but once he put me up to 800 I really

started to feel it. Thanks for the info.

Penny(Lusty)

>

> > Hi from Canada. I was diagnosed with CML 14 months ago. I have

been

> > on Gleevec for about 12 months, but it is not achieving the

results

> > the

> > hematologist is looking for so I am going to be in the clinical

trials

> > for a new drug...Dasatinib/Sprycel starting next Wednesday. It was

> > just approved in Canada 2 weeks ago. Is there anyone in the group

who

> > takes this drug for their CML?

> >

> >

> >

>

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

>

>

[Guest guest]

Hi Bobby,

Welcome to the group. It's such an honour to have you with us and

I'm so glad that Lottie told you about us. Between the two of you,

I'm sure we will not only learn a lot but also get tons of

inspiration from learning about your histories and experiences. It's

so comforting to know that even without a great response, people can

still live long and productive lives!

With a fairly constant influx of new members, it's always nice to

introduce or re-introduce ourselves.

I was diagnosed in Jan 2002 at the age of 31. At the time, my kids

were just 7 and 9. I believe I was probably the first one in Canada

to go straight on Gleevec without having to go through the nightmare

of Interferon first. At the time Gleevec was only approved for

people who could not tolerate Interferon so no one that I knew of was

able to start straight away on Gleevec. I felt very blessed (and

still do). I reached CCR after just 5 months and have done well ever

since.

Tracey

#351 in Zavie's famous Zero Club

>

> Hi folks, I just started posting to your site, thanks to Lottie. I

thought I would introduce myself.

> I am 78 yrs old, I have 6 children, 11 grand children, 8 great

grand children and I was dx with cml in May of 1995. I live outside

Cleveland, Ohio, and at present I am still in the BMS trial for

Sprycel. I entered it in July, 2004, at MDACC, under Dr. Talpaz,

and reached CCR in 10 months, on only 70 mg. a day, 5 days on and 2

days off. Unfortunately, after 2 1/2 yrs, the dreaded pleural

effusion caught up with me, and it's been on the drug, off the drug

since Dec. of 2006. Right now I am back on it, 40 mg, 5 days on,

two days off, along with 30 mg Prednisone to help with the effusion.

Seems to be working for me, I have an appointment March 20 at the U.

Of Mich, where Dr. Talpaz is now associated.

> It's been quite a journey for me, in 2000 I was fortunate enough

to get into phase 2 of Dr. Druker's Gleevec trial. I never reached

CCR, and was in two other trials with Gleevec, one with Arsenec, and

one with Zarnestra,both of them at OHSU also, neither of them

worked. So when Sprycel came along I was quite willing to move to

Houston for 3-6 months, or however long it took . In 3 months I was

allowed to come back home, but had to fly back every month for the

next 7 months.

> I was lucky enough to meets lots of great folks, all in the same

trial, including Lottie and her wonderful husband Jimmy. Now I'm

seeing some of them at the U. of Mich. It's like old home week every

now and then.

> So, that's about it, I have posted on Jerry's site, and the Asian

site for several years, but am always looking for new information,

and new faces. It's a pleasure to post here, blessings, Bobby

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

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

> 09/2006 - out of CCR

>

>

>

[Guest guest]

Bobby,

Why have they not put you on AMN 107 (Tasigna) I went through exactly what

you did. I have been off Sprycell now for three weeks. After being on for

three years and then getting Plural Effusion and many other side affects. I

will start Tasigna on Monday 400mg in the morning only. I don't know why

they did not try me on a lesser dose on Sprycel-I was at 50 a day and in

PCRU.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Wednesday, March 05, 2008 4:39 PM

Subject: [ ] intro

Hi folks, I just started posting to your site, thanks to Lottie. I thought I

would introduce myself.

I am 78 yrs old, I have 6 children, 11 grand children, 8 great grand

children and I was dx with cml in May of 1995. I live outside Cleveland,

Ohio, and at present I am still in the BMS trial for Sprycel. I entered it

in July, 2004, at MDACC, under Dr. Talpaz, and reached CCR in 10 months, on

only 70 mg. a day, 5 days on and 2 days off. Unfortunately, after 2 1/2 yrs,

the dreaded pleural effusion caught up with me, and it's been on the drug,

off the drug since Dec. of 2006. Right now I am back on it, 40 mg, 5 days

on, two days off, along with 30 mg Prednisone to help with the effusion.

Seems to be working for me, I have an appointment March 20 at the U. Of

Mich, where Dr. Talpaz is now associated.

It's been quite a journey for me, in 2000 I was fortunate enough to get into

phase 2 of Dr. Druker's Gleevec trial. I never reached CCR, and was in two

other trials with Gleevec, one with Arsenec, and one with Zarnestra,both of

them at OHSU also, neither of them worked. So when Sprycel came along I was

quite willing to move to Houston for 3-6 months, or however long it took .

In 3 months I was allowed to come back home, but had to fly back every month

for the next 7 months.

I was lucky enough to meets lots of great folks, all in the same trial,

including Lottie and her wonderful husband Jimmy. Now I'm seeing some of

them at the U. of Mich. It's like old home week every now and then.

So, that's about it, I have posted on Jerry's site, and the Asian site for

several years, but am always looking for new information, and new faces.

It's a pleasure to post here, blessings, Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

09/2006 - out of CCR

[Guest guest]

Hi Sharon, I think Tasigna is the next step, if the 40 mg works without PE, they

are going to increase it bit by bit, and keep me on it if we can stop the PE.

I hope this works, it has been a great drug for me, considering the side

effeacts of Gleevec, and YIKES ! Interferon, nightmare # 1. I am glad to see

they are starting you on 400 mg, rather than 800, it is my understanding that is

a bit much, causes a few side effects, then gets decreased to 400.

Also, as I am still in the Sprycel trial, it is free, whereas Tasign is not,

good luck on Tasigna, Bobby

Sharon & Denny <onthewtr@...> wrote:

Bobby,

Why have they not put you on AMN 107 (Tasigna) I went through exactly what

you did. I have been off Sprycell now for three weeks. After being on for

three years and then getting Plural Effusion and many other side affects. I

will start Tasigna on Monday 400mg in the morning only. I don't know why

they did not try me on a lesser dose on Sprycel-I was at 50 a day and in

PCRU.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Wednesday, March 05, 2008 4:39 PM

Subject: [ ] intro

Hi folks, I just started posting to your site, thanks to Lottie. I thought I

would introduce myself.

I am 78 yrs old, I have 6 children, 11 grand children, 8 great grand

children and I was dx with cml in May of 1995. I live outside Cleveland,

Ohio, and at present I am still in the BMS trial for Sprycel. I entered it

in July, 2004, at MDACC, under Dr. Talpaz, and reached CCR in 10 months, on

only 70 mg. a day, 5 days on and 2 days off. Unfortunately, after 2 1/2 yrs,

the dreaded pleural effusion caught up with me, and it's been on the drug,

off the drug since Dec. of 2006. Right now I am back on it, 40 mg, 5 days

on, two days off, along with 30 mg Prednisone to help with the effusion.

Seems to be working for me, I have an appointment March 20 at the U. Of

Mich, where Dr. Talpaz is now associated.

It's been quite a journey for me, in 2000 I was fortunate enough to get into

phase 2 of Dr. Druker's Gleevec trial. I never reached CCR, and was in two

other trials with Gleevec, one with Arsenec, and one with Zarnestra,both of

them at OHSU also, neither of them worked. So when Sprycel came along I was

quite willing to move to Houston for 3-6 months, or however long it took .

In 3 months I was allowed to come back home, but had to fly back every month

for the next 7 months.

I was lucky enough to meets lots of great folks, all in the same trial,

including Lottie and her wonderful husband Jimmy. Now I'm seeing some of

them at the U. of Mich. It's like old home week every now and then.

So, that's about it, I have posted on Jerry's site, and the Asian site for

several years, but am always looking for new information, and new faces.

It's a pleasure to post here, blessings, Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

09/2006 - out of CCR

[Guest guest]

Hi Tracey, wow, #251, that's cool ! I doubt I will ever get much better than

CCR, having had cml for 13 years, like Lottie, I think the longer we have had

it, the harder it is to get to MMR.

But that's ok with me, I feel great, my labs are good, and so is life, the

only time I think of cml is when I am reading posts, or posting. Take care and

good luck, Bobby

Tracey <traceyincanada@...> wrote:

Hi Bobby,

Welcome to the group. It's such an honour to have you with us and

I'm so glad that Lottie told you about us. Between the two of you,

I'm sure we will not only learn a lot but also get tons of

inspiration from learning about your histories and experiences. It's

so comforting to know that even without a great response, people can

still live long and productive lives!

With a fairly constant influx of new members, it's always nice to

introduce or re-introduce ourselves.

I was diagnosed in Jan 2002 at the age of 31. At the time, my kids

were just 7 and 9. I believe I was probably the first one in Canada

to go straight on Gleevec without having to go through the nightmare

of Interferon first. At the time Gleevec was only approved for

people who could not tolerate Interferon so no one that I knew of was

able to start straight away on Gleevec. I felt very blessed (and

still do). I reached CCR after just 5 months and have done well ever

since.

Tracey

#351 in Zavie's famous Zero Club

>

> Hi folks, I just started posting to your site, thanks to Lottie. I

thought I would introduce myself.

> I am 78 yrs old, I have 6 children, 11 grand children, 8 great

grand children and I was dx with cml in May of 1995. I live outside

Cleveland, Ohio, and at present I am still in the BMS trial for

Sprycel. I entered it in July, 2004, at MDACC, under Dr. Talpaz,

and reached CCR in 10 months, on only 70 mg. a day, 5 days on and 2

days off. Unfortunately, after 2 1/2 yrs, the dreaded pleural

effusion caught up with me, and it's been on the drug, off the drug

since Dec. of 2006. Right now I am back on it, 40 mg, 5 days on,

two days off, along with 30 mg Prednisone to help with the effusion.

Seems to be working for me, I have an appointment March 20 at the U.

Of Mich, where Dr. Talpaz is now associated.

> It's been quite a journey for me, in 2000 I was fortunate enough

to get into phase 2 of Dr. Druker's Gleevec trial. I never reached

CCR, and was in two other trials with Gleevec, one with Arsenec, and

one with Zarnestra,both of them at OHSU also, neither of them

worked. So when Sprycel came along I was quite willing to move to

Houston for 3-6 months, or however long it took . In 3 months I was

allowed to come back home, but had to fly back every month for the

next 7 months.

> I was lucky enough to meets lots of great folks, all in the same

trial, including Lottie and her wonderful husband Jimmy. Now I'm

seeing some of them at the U. of Mich. It's like old home week every

now and then.

> So, that's about it, I have posted on Jerry's site, and the Asian

site for several years, but am always looking for new information,

and new faces. It's a pleasure to post here, blessings, Bobby

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

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

> 09/2006 - out of CCR

>

>

>

[Guest guest]

Bobby,

I was on the sprycel trial for three years too. Yes it was free. I am very

fortunate that our Kaiser coverage is wonderful. Today I picked up a month

supply of Tasigna and it cost me $30.00. If I had no insurance it would have

been $2800. I can not believe it.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Wednesday, March 05, 2008 7:48 PM

Subject: RE: [ ] intro

Hi Sharon, I think Tasigna is the next step, if the 40 mg works without PE,

they are going to increase it bit by bit, and keep me on it if we can stop

the PE. I hope this works, it has been a great drug for me, considering the

side effeacts of Gleevec, and YIKES ! Interferon, nightmare # 1. I am glad

to see they are starting you on 400 mg, rather than 800, it is my

understanding that is a bit much, causes a few side effects, then gets

decreased to 400.

Also, as I am still in the Sprycel trial, it is free, whereas Tasign is not,

good luck on Tasigna, Bobby

Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net>

wrote:

Bobby,

Why have they not put you on AMN 107 (Tasigna) I went through exactly what

you did. I have been off Sprycell now for three weeks. After being on for

three years and then getting Plural Effusion and many other side affects. I

will start Tasigna on Monday 400mg in the morning only. I don't know why

they did not try me on a lesser dose on Sprycel-I was at 50 a day and in

PCRU.

Sharon

_____

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

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

ROBERTA DOYLE

Sent: Wednesday, March 05, 2008 4:39 PM

groups (DOT) <mailto:%40> com

Subject: [ ] intro

Hi folks, I just started posting to your site, thanks to Lottie. I thought I

would introduce myself.

I am 78 yrs old, I have 6 children, 11 grand children, 8 great grand

children and I was dx with cml in May of 1995. I live outside Cleveland,

Ohio, and at present I am still in the BMS trial for Sprycel. I entered it

in July, 2004, at MDACC, under Dr. Talpaz, and reached CCR in 10 months, on

only 70 mg. a day, 5 days on and 2 days off. Unfortunately, after 2 1/2 yrs,

the dreaded pleural effusion caught up with me, and it's been on the drug,

off the drug since Dec. of 2006. Right now I am back on it, 40 mg, 5 days

on, two days off, along with 30 mg Prednisone to help with the effusion.

Seems to be working for me, I have an appointment March 20 at the U. Of

Mich, where Dr. Talpaz is now associated.

It's been quite a journey for me, in 2000 I was fortunate enough to get into

phase 2 of Dr. Druker's Gleevec trial. I never reached CCR, and was in two

other trials with Gleevec, one with Arsenec, and one with Zarnestra,both of

them at OHSU also, neither of them worked. So when Sprycel came along I was

quite willing to move to Houston for 3-6 months, or however long it took .

In 3 months I was allowed to come back home, but had to fly back every month

for the next 7 months.

I was lucky enough to meets lots of great folks, all in the same trial,

including Lottie and her wonderful husband Jimmy. Now I'm seeing some of

them at the U. of Mich. It's like old home week every now and then.

So, that's about it, I have posted on Jerry's site, and the Asian site for

several years, but am always looking for new information, and new faces.

It's a pleasure to post here, blessings, Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

09/2006 - out of CCR

[Guest guest]

hi bobby; it's encorougeing to see how long you've lived with cml when one

is diognosed all one thinks about is death, how are you doing now? u sound like

you've been through a lot whitch also helps me understand

that even at bad times don't give up.I pray you do great for a long, long

time. can you translate pcru ,bms,pe, ccr and amn

thankx aliza rochester n.y.

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