No good news

[Guest guest]

((((HUGS))))Penny, I'm sorry you didn't get any closer to the top of the surgery list!!! Hang in there, and we'll send prayers for a speedy move up the list for you!Debbi in Michigan

NO GOOD NEWS

Well I came home not anyfarther ahead then before i left all i know is i will be haven the surgery sometime this summer .Doc also said to take advantage of the fact that i am losing weight aslong as i stay health .So unless i get malnurishment or something i am on the ever so long waiting list Oh well so much for high hopes Penny

[Guest guest]

Oh, Penny, I'm sorry. I sometimes wish these guys could just experience one day of the frustration of not swallowing. Something tells me that they might try to fit us in sooner. Cindi

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I received my results from my last BMA, finally after enough note writing and I

am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and

hot under the collar. I guess if I was a swearing person, I would be doing

that, too. The last time I had gone up to 35% normal diploids and now I am back

to the ground floor. I don't know where to go from here. I know I will come to

my senses and my ire will die down, but for now, I am all of the above. The

smell of sweet success has evaded me yet again. Had it not progressed to the

level it had, I would have been content to go my merry way as I have for all

these years. I feel that something is missing in this equation and it may be so

simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Dear Lottie

I hope you told them that this is the WRONG answer! Wow - I cant say

that I blame you for being royally ticked off with these results....

Nothing I can say will help, just know that we care.

Sending you a really big hug - and one for Jimmy too.

love and light

Annie

's mom

http://livingwithcml.blogspot.com

>

> I received my results from my last BMA, finally after enough note

writing and I am back to 100% Ph+. I am angry, mad as a wet hen,

frustrated, irritated and hot under the collar. I guess if I was a

swearing person, I would be doing that, too. The last time I had

gone up to 35% normal diploids and now I am back to the ground

floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above.

The smell of sweet success has evaded me yet again. Had it not

progressed to the level it had, I would have been content to go my

merry way as I have for all these years. I feel that something is

missing in this equation and it may be so simple that no one is

seeing it.

>

> Well, Jimmy's hair is about a 1/2 inch and he feels like

, so I have to take him to the barber and bring back the heart

monitor so they can check his heart rate for the last 24 hours.

Meanwhile, I hope this turmoil from within will simmer down by chat

time this evening.

>

> Peace and blessings,

> Lottie

>

>

[Guest guest]

WELL NOW LOTTIE, THAT IS A BUMMER. YOU DON'T SWEAR, BUT I DO, SO I'LL DO IT FOR

YOUR: @#$%^ & *()_+ THERE, THAT SAYS IT ALL!

THERE'S NOT A HECK OF A LOT YOU CAN DO ABOUT THIS, WHEN DO YOU GET YOUR NEXT

BMA, IN JULY? I THINK LOTTIE, US OLD UNS THAT HAVE HAD CML SO LONG, DON'T

STAND A VERY GOOD CHANCE OF REMISSION, NOT LIKE THE YOUNGUNS DO. NOT THAT

WE'RE TOO OLD, MIND YOU, BUT WE HAVE HAD IT TOO LONG. BUT I DON'T THINK IT

MATTERS THAT MUCH ANYWAY IF WE REACH REMISSION OR NOT, EXCEPT MAYBE TO SAY

" WE'RE MEMBERS OF A MUCH DESIRED CLUB. " IF WE FEEL OK, AND CAN GET ON WITH OUR

LIVES, THAT SAYS A LOT, RIGHT THERE. LOOK AT IT THIS WAY; WE NEVER GOT TO BE

0.0005, AND THEN HAD A HEART ATTACK BECAUSE WE WENT UP TO 0.0003 !! AND WE DON'T

EVER HAVE TO GO BESERK BECAUSE WE WENT FROM 0.005, TO 0.003, AND BACK TO 0.005

AND WONDER WHY THE NUMBERS ARE DOING A JIG. I KNOW MY PH IS LOWER THAN YOURS,

BUT IT ISN'T WHERE MOST PEOPLE WANT IT EITHER. SO, JUST PUT THOSE FIGURES OUT

OF YOUR MIND, AND SETTLE ON FEELING AS GOOD AS YOU CAN AND REMEMBER, 8 YEARS

AGO NONE OF THESE FIGURES EXISTED TO BEGIN

WITH!!!!!! AND AS LONG AS YOU FEEL BETTER THAN YOU DID ON INTERFERON, BOO

HISS, LIFE IS A PLUS. DR. TALPAZ SAYS THERE ARE DRUGS IN THE PIPE LINE THAT ARE

WONDER DRUGS, AND MAYBE WE ARE GOING TO BE LUCKY ENOUGH TO HIT THE RIGHT ONE -

WE DESERVE IT, FOR BEING GUINEA PIGS FOR THE LAST 8 YEARS KIDDO, YOU JUST HANG

IN THERE. AND LOOK ON THE BRIGHT SIDE - IF IT WEREN'T FOR ALL THE DRUGS YOU

HAVE BEEN EXPERIMENTING WITH, YOU WOULD NOT HAVE BEEN HERE TO HELP JIMMY THROUGH

THIS LAST CRISIS! BETTER DAYS ARE COMING, YOUR BUDDY, BOBBY

Lottie Duthu <lotajam@...> wrote:

I received my results from my last BMA, finally after enough note

writing and I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated,

irritated and hot under the collar. I guess if I was a swearing person, I would

be doing that, too. The last time I had gone up to 35% normal diploids and now I

am back to the ground floor. I don't know where to go from here. I know I will

come to my senses and my ire will die down, but for now, I am all of the above.

The smell of sweet success has evaded me yet again. Had it not progressed to the

level it had, I would have been content to go my merry way as I have for all

these years. I feel that something is missing in this equation and it may be so

simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Bobby

That was so wonderfully put!!! I know Lottie will appreciate it. I did.

I have one question:

What medication are you and Lottie on right now??

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Tuesday, May 20, 2008 12:28 PM

Subject: Re: [ ] No good news

WELL NOW LOTTIE, THAT IS A BUMMER. YOU DON'T SWEAR, BUT I DO, SO I'LL DO IT

FOR YOUR: @#$%^ & *()_+ THERE, THAT SAYS IT ALL!

THERE'S NOT A HECK OF A LOT YOU CAN DO ABOUT THIS, WHEN DO YOU GET YOUR NEXT

BMA, IN JULY? I THINK LOTTIE, US OLD UNS THAT HAVE HAD CML SO LONG, DON'T

STAND A VERY GOOD CHANCE OF REMISSION, NOT LIKE THE YOUNGUNS DO. NOT THAT

WE'RE TOO OLD, MIND YOU, BUT WE HAVE HAD IT TOO LONG. BUT I DON'T THINK IT

MATTERS THAT MUCH ANYWAY IF WE REACH REMISSION OR NOT, EXCEPT MAYBE TO SAY

" WE'RE MEMBERS OF A MUCH DESIRED CLUB. " IF WE FEEL OK, AND CAN GET ON WITH

OUR LIVES, THAT SAYS A LOT, RIGHT THERE. LOOK AT IT THIS WAY; WE NEVER GOT

TO BE 0.0005, AND THEN HAD A HEART ATTACK BECAUSE WE WENT UP TO 0.0003 !!

AND WE DON'T EVER HAVE TO GO BESERK BECAUSE WE WENT FROM 0.005, TO 0.003,

AND BACK TO 0.005 AND WONDER WHY THE NUMBERS ARE DOING A JIG. I KNOW MY PH

IS LOWER THAN YOURS, BUT IT ISN'T WHERE MOST PEOPLE WANT IT EITHER. SO, JUST

PUT THOSE FIGURES OUT OF YOUR MIND, AND SETTLE ON FEELING AS GOOD AS YOU CAN

AND REMEMBER, 8 YEARS AGO NONE OF THESE FIGURES EXISTED TO BEGIN

WITH!!!!!! AND AS LONG AS YOU FEEL BETTER THAN YOU DID ON INTERFERON, BOO

HISS, LIFE IS A PLUS. DR. TALPAZ SAYS THERE ARE DRUGS IN THE PIPE LINE THAT

ARE WONDER DRUGS, AND MAYBE WE ARE GOING TO BE LUCKY ENOUGH TO HIT THE RIGHT

ONE - WE DESERVE IT, FOR BEING GUINEA PIGS FOR THE LAST 8 YEARS KIDDO, YOU

JUST HANG IN THERE. AND LOOK ON THE BRIGHT SIDE - IF IT WEREN'T FOR ALL THE

DRUGS YOU HAVE BEEN EXPERIMENTING WITH, YOU WOULD NOT HAVE BEEN HERE TO HELP

JIMMY THROUGH THIS LAST CRISIS! BETTER DAYS ARE COMING, YOUR BUDDY, BOBBY

Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> wrote:

I received my results from my last BMA, finally after enough note writing

and I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated,

irritated and hot under the collar. I guess if I was a swearing person, I

would be doing that, too. The last time I had gone up to 35% normal diploids

and now I am back to the ground floor. I don't know where to go from here. I

know I will come to my senses and my ire will die down, but for now, I am

all of the above. The smell of sweet success has evaded me yet again. Had it

not progressed to the level it had, I would have been content to go my merry

way as I have for all these years. I feel that something is missing in this

equation and it may be so simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil

from within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Dearest Lottie,

Sorry to hear about the results. It sucks especially when you are so on top of

your treatment and care.

Let me know when yall may be interested in some visitors. If you are willing I

am happy to come over and make some raw vegan foods and green juices to see if

that may help you. It may also be worth a look around to see what chemicals may

be overloading your system. The chemo seems to keep you for a while and then

stops. Perhaps we can eliminate some chemical exposure and help your everso

strong body fight the nasty cml.

If you aren't interested that's ok too. I just wanted to offer up all that I

have to help you fight.

More prayers and support flowing to you,

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] No good news

I received my results from my last BMA, finally after enough note writing and I

am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and hot

under the collar. I guess if I was a swearing person, I would be doing that,

too. The last time I had gone up to 35% normal diploids and now I am back to the

ground floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above. The smell

of sweet success has evaded me yet again. Had it not progressed to the level it

had, I would have been content to go my merry way as I have for all these years.

I feel that something is missing in this equation and it may be so simple that

no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

You deserve all the sturm und drang you can muster!! A bummer -- but you're

down, not out. Meantime, consider yourself hugged. My warmest feelings to you

and Jimmy.

@...: lotajam@...: Tue, 20 May 2008 13:49:54

-0500Subject: [ ] No good news

I received my results from my last BMA, finally after enough note writing and I

am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and hot

under the collar. I guess if I was a swearing person, I would be doing that,

too. The last time I had gone up to 35% normal diploids and now I am back to the

ground floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above. The smell

of sweet success has evaded me yet again. Had it not progressed to the level it

had, I would have been content to go my merry way as I have for all these years.

I feel that something is missing in this equation and it may be so simple that

no one is seeing it. Well, Jimmy's hair is about a 1/2 inch and he feels like

, so I have to take him to the barber and bring back the heart

monitor so they can check his heart rate for the last 24 hours. Meanwhile, I

hope this turmoil from within will simmer down by chat time this evening. Peace

and blessings,Lottie

[Guest guest]

I am so sorry, Lottie. you are in my prayers.

I wish you strength and perseverence.

chris in minn

[ ] No good news

I received my results from my last BMA, finally after enough note writing and

I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and

hot under the collar. I guess if I was a swearing person, I would be doing that,

too. The last time I had gone up to 35% normal diploids and now I am back to the

ground floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above. The smell

of sweet success has evaded me yet again. Had it not progressed to the level it

had, I would have been content to go my merry way as I have for all these years.

I feel that something is missing in this equation and it may be so simple that

no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Dear Lottie,

I curse like a truck driver so I let out a colorful stream of

expletives in your honor. I am sorry that your BMA results did not

return with the desired results, however, this is not the kind of

thing that should cause you to stop fighting. There are many drugs

coming down the pipe and maybe you just have not received the right

one for you yet. I'm sure it is frustrating because that is the

nature of this condition, to frustrate the patient with as much

aggravation and waiting on test results as possible. Just remember

that God squeezes but never more than what you can handle. I am

sending you a big hug from New York City where it is raining cats and

dogs.

Love,

>

> I received my results from my last BMA, finally after enough note

writing and I am back to 100% Ph+. I am angry, mad as a wet hen,

frustrated, irritated and hot under the collar. I guess if I was a

swearing person, I would be doing that, too. The last time I had

gone up to 35% normal diploids and now I am back to the ground

floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above.

The smell of sweet success has evaded me yet again. Had it not

progressed to the level it had, I would have been content to go my

merry way as I have for all these years. I feel that something is

missing in this equation and it may be so simple that no one is

seeing it.

>

> Well, Jimmy's hair is about a 1/2 inch and he feels like

, so I have to take him to the barber and bring back the heart

monitor so they can check his heart rate for the last 24 hours.

Meanwhile, I hope this turmoil from within will simmer down by chat

time this evening.

>

> Peace and blessings,

> Lottie

>

>

[Guest guest]

Lottie,

Bless your heart! If it weren't for people like you, the rest of us

would not be reaping the benefits of the wonder drugs we are on.

You have your chance coming and you will prevail! I just know it.

Life is sweet, and it is as sweet today as it was yesterday. You

have Jimmy and he is getting better, and you are hanging in there.

Keep on doing it. You're both in my prayers.

Big hug,

Vicki

>

> Bobby

>

> That was so wonderfully put!!! I know Lottie will appreciate it. I

did.

>

>

>

> I have one question:

>

> What medication are you and Lottie on right now??

>

>

>

> Sharon

>

>

>

> _____

>

> From: [mailto: ] On Behalf

Of

> ROBERTA DOYLE

> Sent: Tuesday, May 20, 2008 12:28 PM

>

> Subject: Re: [ ] No good news

>

>

>

> WELL NOW LOTTIE, THAT IS A BUMMER. YOU DON'T SWEAR, BUT I DO, SO

I'LL DO IT

> FOR YOUR: @#$%^ & *()_+ THERE, THAT SAYS IT ALL!

> THERE'S NOT A HECK OF A LOT YOU CAN DO ABOUT THIS, WHEN DO YOU GET

YOUR NEXT

> BMA, IN JULY? I THINK LOTTIE, US OLD UNS THAT HAVE HAD CML SO

LONG, DON'T

> STAND A VERY GOOD CHANCE OF REMISSION, NOT LIKE THE YOUNGUNS DO.

NOT THAT

> WE'RE TOO OLD, MIND YOU, BUT WE HAVE HAD IT TOO LONG. BUT I DON'T

THINK IT

> MATTERS THAT MUCH ANYWAY IF WE REACH REMISSION OR NOT, EXCEPT

MAYBE TO SAY

> " WE'RE MEMBERS OF A MUCH DESIRED CLUB. " IF WE FEEL OK, AND CAN GET

ON WITH

> OUR LIVES, THAT SAYS A LOT, RIGHT THERE. LOOK AT IT THIS WAY; WE

NEVER GOT

> TO BE 0.0005, AND THEN HAD A HEART ATTACK BECAUSE WE WENT UP TO

0.0003 !!

> AND WE DON'T EVER HAVE TO GO BESERK BECAUSE WE WENT FROM 0.005, TO

0.003,

> AND BACK TO 0.005 AND WONDER WHY THE NUMBERS ARE DOING A JIG. I

KNOW MY PH

> IS LOWER THAN YOURS, BUT IT ISN'T WHERE MOST PEOPLE WANT IT

EITHER. SO, JUST

> PUT THOSE FIGURES OUT OF YOUR MIND, AND SETTLE ON FEELING AS GOOD

AS YOU CAN

> AND REMEMBER, 8 YEARS AGO NONE OF THESE FIGURES EXISTED TO BEGIN

> WITH!!!!!! AND AS LONG AS YOU FEEL BETTER THAN YOU DID ON

INTERFERON, BOO

> HISS, LIFE IS A PLUS. DR. TALPAZ SAYS THERE ARE DRUGS IN THE PIPE

LINE THAT

> ARE WONDER DRUGS, AND MAYBE WE ARE GOING TO BE LUCKY ENOUGH TO HIT

THE RIGHT

> ONE - WE DESERVE IT, FOR BEING GUINEA PIGS FOR THE LAST 8 YEARS

KIDDO, YOU

> JUST HANG IN THERE. AND LOOK ON THE BRIGHT SIDE - IF IT WEREN'T

FOR ALL THE

> DRUGS YOU HAVE BEEN EXPERIMENTING WITH, YOU WOULD NOT HAVE BEEN

HERE TO HELP

> JIMMY THROUGH THIS LAST CRISIS! BETTER DAYS ARE COMING, YOUR

BUDDY, BOBBY

>

> Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net>

wrote:

> I received my results from my last BMA, finally after enough note

writing

> and I am back to 100% Ph+. I am angry, mad as a wet hen,

frustrated,

> irritated and hot under the collar. I guess if I was a swearing

person, I

> would be doing that, too. The last time I had gone up to 35%

normal diploids

> and now I am back to the ground floor. I don't know where to go

from here. I

> know I will come to my senses and my ire will die down, but for

now, I am

> all of the above. The smell of sweet success has evaded me yet

again. Had it

> not progressed to the level it had, I would have been content to

go my merry

> way as I have for all these years. I feel that something is

missing in this

> equation and it may be so simple that no one is seeing it.

>

> Well, Jimmy's hair is about a 1/2 inch and he feels like

, so I

> have to take him to the barber and bring back the heart monitor so

they can

> check his heart rate for the last 24 hours. Meanwhile, I hope this

turmoil

> from within will simmer down by chat time this evening.

>

> Peace and blessings,

> Lottie

>

>

[Guest guest]

So did you both go through all the gleevec, sprycel and tasigna

stuff????????

I know you posted this information before but like you my memory has failed

a little too.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Tuesday, May 20, 2008 12:39 PM

Subject: RE: [ ] No good news

I'M IN A NEW TRIAL, XL228, IT'S AN INFUSION, I HAVE HAD TWO. THIS THUR. WILL

BE MY THIRD, LAST WEEK THEY DID NOT INFUSE ME AS MY LABS WERE TO LOW, AND I

HAD TO HAVE 2 UNITS OF BLOOD YESTERDAY.

I THINK LOTTIE IS ON SKI, BUT MY MEMORY IS SO BAD I COULD BE WRONG. WE HAVE

BOTH BEEN IN 5 TRIALS, AND WE'RE STILL HANGING IN THERE. BOBBY

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

wrote:

Bobby

That was so wonderfully put!!! I know Lottie will appreciate it. I did.

I have one question:

What medication are you and Lottie on right now??

Sharon

_____

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

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

ROBERTA DOYLE

Sent: Tuesday, May 20, 2008 12:28 PM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] No good news

WELL NOW LOTTIE, THAT IS A BUMMER. YOU DON'T SWEAR, BUT I DO, SO I'LL DO IT

FOR YOUR: @#$%^ & *()_+ THERE, THAT SAYS IT ALL!

THERE'S NOT A HECK OF A LOT YOU CAN DO ABOUT THIS, WHEN DO YOU GET YOUR NEXT

BMA, IN JULY? I THINK LOTTIE, US OLD UNS THAT HAVE HAD CML SO LONG, DON'T

STAND A VERY GOOD CHANCE OF REMISSION, NOT LIKE THE YOUNGUNS DO. NOT THAT

WE'RE TOO OLD, MIND YOU, BUT WE HAVE HAD IT TOO LONG. BUT I DON'T THINK IT

MATTERS THAT MUCH ANYWAY IF WE REACH REMISSION OR NOT, EXCEPT MAYBE TO SAY

" WE'RE MEMBERS OF A MUCH DESIRED CLUB. " IF WE FEEL OK, AND CAN GET ON WITH

OUR LIVES, THAT SAYS A LOT, RIGHT THERE. LOOK AT IT THIS WAY; WE NEVER GOT

TO BE 0.0005, AND THEN HAD A HEART ATTACK BECAUSE WE WENT UP TO 0.0003 !!

AND WE DON'T EVER HAVE TO GO BESERK BECAUSE WE WENT FROM 0.005, TO 0.003,

AND BACK TO 0.005 AND WONDER WHY THE NUMBERS ARE DOING A JIG. I KNOW MY PH

IS LOWER THAN YOURS, BUT IT ISN'T WHERE MOST PEOPLE WANT IT EITHER. SO, JUST

PUT THOSE FIGURES OUT OF YOUR MIND, AND SETTLE ON FEELING AS GOOD AS YOU CAN

AND REMEMBER, 8 YEARS AGO NONE OF THESE FIGURES EXISTED TO BEGIN

WITH!!!!!! AND AS LONG AS YOU FEEL BETTER THAN YOU DID ON INTERFERON, BOO

HISS, LIFE IS A PLUS. DR. TALPAZ SAYS THERE ARE DRUGS IN THE PIPE LINE THAT

ARE WONDER DRUGS, AND MAYBE WE ARE GOING TO BE LUCKY ENOUGH TO HIT THE RIGHT

ONE - WE DESERVE IT, FOR BEING GUINEA PIGS FOR THE LAST 8 YEARS KIDDO, YOU

JUST HANG IN THERE. AND LOOK ON THE BRIGHT SIDE - IF IT WEREN'T FOR ALL THE

DRUGS YOU HAVE BEEN EXPERIMENTING WITH, YOU WOULD NOT HAVE BEEN HERE TO HELP

JIMMY THROUGH THIS LAST CRISIS! BETTER DAYS ARE COMING, YOUR BUDDY, BOBBY

Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> wrote:

I received my results from my last BMA, finally after enough note writing

and I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated,

irritated and hot under the collar. I guess if I was a swearing person, I

would be doing that, too. The last time I had gone up to 35% normal diploids

and now I am back to the ground floor. I don't know where to go from here. I

know I will come to my senses and my ire will die down, but for now, I am

all of the above. The smell of sweet success has evaded me yet again. Had it

not progressed to the level it had, I would have been content to go my merry

way as I have for all these years. I feel that something is missing in this

equation and it may be so simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil

from within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

I WAS IN THE PHASE 2 TRIAL OF GLEEVEC, THEN CALLED STE571. WHEN THAT FAILED I

WAS IN COMBINATION ARSENIC/GLEEVEC, WHEN THAT FAILED I WAS IN ZARNESTRA/GLEEVEC,

THEN ON TO SPRYCEL IN HOUSTON, WHERE I MET LOTTIE. NOW THAT HAS FAILED AND I AM

IN XL228. I KNOW LOTTIE WAS IN THE GLEEVEC TRIAL, BUT AM NOT SURE WHAT FOLLOWED

WITH HER, EXCEPT I'M SURE THERE WERE 4 MORE FOR HER. SHE'LL NO DOUBT FILL YOU

IN ON THEM. WE'RE OPEN FOR ANYTHING THAT COMES ALONG, IT'S BEEN KEEPING US BOTH

ALIVE FOR 8 EXTRA YEARS WE WOULD NOT HAVE HAD. AND BEFORE ALL THESE TRIALS,

DON'T FORGET, WE WERE BOTH ON INTERFERON, YUCK, THOSE MEMORIES ARE NOT HAPPY

ONES, BUT ARE THERE TO REMIND US " IF IT'S NOT AS BAD AS INTERFERON, IT'S NOT ALL

THAT BAD! " BOBBY

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

So did you both go through all the gleevec, sprycel and tasigna

stuff????????

I know you posted this information before but like you my memory has failed

a little too.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Tuesday, May 20, 2008 12:39 PM

Subject: RE: [ ] No good news

I'M IN A NEW TRIAL, XL228, IT'S AN INFUSION, I HAVE HAD TWO. THIS THUR. WILL

BE MY THIRD, LAST WEEK THEY DID NOT INFUSE ME AS MY LABS WERE TO LOW, AND I

HAD TO HAVE 2 UNITS OF BLOOD YESTERDAY.

I THINK LOTTIE IS ON SKI, BUT MY MEMORY IS SO BAD I COULD BE WRONG. WE HAVE

BOTH BEEN IN 5 TRIALS, AND WE'RE STILL HANGING IN THERE. BOBBY

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

wrote:

Bobby

That was so wonderfully put!!! I know Lottie will appreciate it. I did.

I have one question:

What medication are you and Lottie on right now??

Sharon

_____

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

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

ROBERTA DOYLE

Sent: Tuesday, May 20, 2008 12:28 PM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] No good news

WELL NOW LOTTIE, THAT IS A BUMMER. YOU DON'T SWEAR, BUT I DO, SO I'LL DO IT

FOR YOUR: @#$%^ & *()_+ THERE, THAT SAYS IT ALL!

THERE'S NOT A HECK OF A LOT YOU CAN DO ABOUT THIS, WHEN DO YOU GET YOUR NEXT

BMA, IN JULY? I THINK LOTTIE, US OLD UNS THAT HAVE HAD CML SO LONG, DON'T

STAND A VERY GOOD CHANCE OF REMISSION, NOT LIKE THE YOUNGUNS DO. NOT THAT

WE'RE TOO OLD, MIND YOU, BUT WE HAVE HAD IT TOO LONG. BUT I DON'T THINK IT

MATTERS THAT MUCH ANYWAY IF WE REACH REMISSION OR NOT, EXCEPT MAYBE TO SAY

" WE'RE MEMBERS OF A MUCH DESIRED CLUB. " IF WE FEEL OK, AND CAN GET ON WITH

OUR LIVES, THAT SAYS A LOT, RIGHT THERE. LOOK AT IT THIS WAY; WE NEVER GOT

TO BE 0.0005, AND THEN HAD A HEART ATTACK BECAUSE WE WENT UP TO 0.0003 !!

AND WE DON'T EVER HAVE TO GO BESERK BECAUSE WE WENT FROM 0.005, TO 0.003,

AND BACK TO 0.005 AND WONDER WHY THE NUMBERS ARE DOING A JIG. I KNOW MY PH

IS LOWER THAN YOURS, BUT IT ISN'T WHERE MOST PEOPLE WANT IT EITHER. SO, JUST

PUT THOSE FIGURES OUT OF YOUR MIND, AND SETTLE ON FEELING AS GOOD AS YOU CAN

AND REMEMBER, 8 YEARS AGO NONE OF THESE FIGURES EXISTED TO BEGIN

WITH!!!!!! AND AS LONG AS YOU FEEL BETTER THAN YOU DID ON INTERFERON, BOO

HISS, LIFE IS A PLUS. DR. TALPAZ SAYS THERE ARE DRUGS IN THE PIPE LINE THAT

ARE WONDER DRUGS, AND MAYBE WE ARE GOING TO BE LUCKY ENOUGH TO HIT THE RIGHT

ONE - WE DESERVE IT, FOR BEING GUINEA PIGS FOR THE LAST 8 YEARS KIDDO, YOU

JUST HANG IN THERE. AND LOOK ON THE BRIGHT SIDE - IF IT WEREN'T FOR ALL THE

DRUGS YOU HAVE BEEN EXPERIMENTING WITH, YOU WOULD NOT HAVE BEEN HERE TO HELP

JIMMY THROUGH THIS LAST CRISIS! BETTER DAYS ARE COMING, YOUR BUDDY, BOBBY

Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> wrote:

I received my results from my last BMA, finally after enough note writing

and I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated,

irritated and hot under the collar. I guess if I was a swearing person, I

would be doing that, too. The last time I had gone up to 35% normal diploids

and now I am back to the ground floor. I don't know where to go from here. I

know I will come to my senses and my ire will die down, but for now, I am

all of the above. The smell of sweet success has evaded me yet again. Had it

not progressed to the level it had, I would have been content to go my merry

way as I have for all these years. I feel that something is missing in this

equation and it may be so simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil

from within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

My thoughts and oh so many prayers are with you and your husband . Keep the

faith , we are all pulling for you. Eva XXOO

From: Lottie Duthu

Sent: Tuesday, May 20, 2008 2:49 PM

CML

Subject: [ ] No good news

I received my results from my last BMA, finally after enough note writing and I

am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and hot

under the collar. I guess if I was a swearing person, I would be doing that,

too. The last time I had gone up to 35% normal diploids and now I am back to the

ground floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above. The smell

of sweet success has evaded me yet again. Had it not progressed to the level it

had, I would have been content to go my merry way as I have for all these years.

I feel that something is missing in this equation and it may be so simple that

no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Dear Lottie,

I won't argue that your results suck and that you have every right in

the world to be angry. I do want to point out what I think is

important right now though and that's that you're still solidly in

chronic phase.....(or so I'm assuming.....your BMA report will tell you

if there are signs of acceleration). If there are no signs of

acceleration then I think you should celebrate anyway and to heck with

the PH count!

Tracey

[Guest guest]

Dearest Lottie,

I'm really sorry that you got those results. I totally understand

how diappointing it must be. Bobby and others responded with such

great perspective that I'm not sure I can add much other than to send

my love and prayers to you and Jimmy. I know it may not feel like

it, but, given how long you've had CML, it seems pretty clear to me

that you are kicking CML's butt rather than the other way around.

Just keep on keeping on -- every day is a gift.

Love,

>

> I received my results from my last BMA, finally after enough note

writing and I am back to 100% Ph+. I am angry, mad as a wet hen,

frustrated, irritated and hot under the collar. I guess if I was a

swearing person, I would be doing that, too. The last time I had

gone up to 35% normal diploids and now I am back to the ground

floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above.

The smell of sweet success has evaded me yet again. Had it not

progressed to the level it had, I would have been content to go my

merry way as I have for all these years. I feel that something is

missing in this equation and it may be so simple that no one is

seeing it.

>

> Well, Jimmy's hair is about a 1/2 inch and he feels like

, so I have to take him to the barber and bring back the heart

monitor so they can check his heart rate for the last 24 hours.

Meanwhile, I hope this turmoil from within will simmer down by chat

time this evening.

>

> Peace and blessings,

> Lottie

>

>

[Guest guest]

Lottie - I am so sorry to hear your news, I can't imagine how frustrating

and depressing the news is.....however, you are still here, fighting mad and

I'm sure something else will come along for you. I know you have been in

lots of trials - please refresh my memory and tell me what you have been on

recently? Have you trialled Tasigna?

Ha ha I can sympathise with Jimmy after shaving my head for our Shave for A

Cure Leaukaemia fundraiser. I have lots of pepper and salt kinky (hair) at

present which has been very liberating - at least no bad hair days!

Regards,

Downunder

_____

From: [mailto: ] On Behalf Of Lottie

Duthu

Sent: Wednesday, 21 May 2008 4:50 AM

CML

Subject: [ ] No good news

I received my results from my last BMA, finally after enough note writing

and I am back to 100% Ph+. I am angry, mad as a wet hen, frustrated,

irritated and hot under the collar. I guess if I was a swearing person, I

would be doing that, too. The last time I had gone up to 35% normal diploids

and now I am back to the ground floor. I don't know where to go from here. I

know I will come to my senses and my ire will die down, but for now, I am

all of the above. The smell of sweet success has evaded me yet again. Had it

not progressed to the level it had, I would have been content to go my merry

way as I have for all these years. I feel that something is missing in this

equation and it may be so simple that no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil

from within will simmer down by chat time this evening.

Peace and blessings,

Lottie

[Guest guest]

Big hugs Lottie!

:{

J.

[ ] No good news

I received my results from my last BMA, finally after enough note writing and I

am back to 100% Ph+. I am angry, mad as a wet hen, frustrated, irritated and hot

under the collar. I guess if I was a swearing person, I would be doing that,

too. The last time I had gone up to 35% normal diploids and now I am back to the

ground floor. I don't know where to go from here. I know I will come to my

senses and my ire will die down, but for now, I am all of the above. The smell

of sweet success has evaded me yet again. Had it not progressed to the level it

had, I would have been content to go my merry way as I have for all these years.

I feel that something is missing in this equation and it may be so simple that

no one is seeing it.

Well, Jimmy's hair is about a 1/2 inch and he feels like , so I

have to take him to the barber and bring back the heart monitor so they can

check his heart rate for the last 24 hours. Meanwhile, I hope this turmoil from

within will simmer down by chat time this evening.

Peace and blessings,

Lottie