Re: Confusion, Descision (sp?) and a birthday!

[Guest guest]

Hi Katy,

I'm sorry you've been having such a hard time with treatment. Have

you tried Tasigna or any other drugs besides Gleevec and Sprycel to

see if you could tolerate them better?

One thing I want to point out to you is that you can't rely on your

CBC's to monitor your CML. You could be 100% PH+ and your CBC

wouldn't show it for months, maybe even years. You need to have

regular BMB's if you're not in CCR and if you are, you can do PCR's

to monitor. Without treatment, I would suggest getting BMB's every 3

months and PCR's every month.

The other thing you need to realize is that by going off all

treatment, you are allowing the Ph cells the chance of repopulating,

which then gives them the chance of mutating. The more cells you

have, the more chance you have of developing mutations.

I understand that your quality of life is important which is why I

would really encourage you to try a new drug before you choose to

stop treatment all together.

Goodluck,

Tracey

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgiving day I will

be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided......not to take anymore chemo. I have an appt. with my Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt

want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.....I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

[Guest guest]

Dear Kathy,

I too understand the quality of life issue with sprycel specifically. While I

understand the desire to stop feeling bad, nt taking meds at all will only lead

to more problems later with meds that will be worse.

Please try another drug or ask for a lower dose of sprycel. It took me months

of trying but i finally got a lower dose of sprycel and i feel much better

already. It's still hard but better.

Please also consider the BMBs or PCRs to follow your phillys! The CBC won't

show the disease progression until much later. I was almost 100 percent PH+ and

my WBC was only 18,000, just a tad over normal!

You have grandbaby to spoil! Please approach the meds with an eye to moderation

that will give you the best quality and length of life.

Best wishes,

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] Re: Confusion, Descision (sp?) and a birthday!

Hi Katy,

I'm sorry you've been having such a hard time with treatment. Have

you tried Tasigna or any other drugs besides Gleevec and Sprycel to

see if you could tolerate them better?

One thing I want to point out to you is that you can't rely on your

CBC's to monitor your CML. You could be 100% PH+ and your CBC

wouldn't show it for months, maybe even years. You need to have

regular BMB's if you're not in CCR and if you are, you can do PCR's

to monitor. Without treatment, I would suggest getting BMB's every 3

months and PCR's every month.

The other thing you need to realize is that by going off all

treatment, you are allowing the Ph cells the chance of repopulating,

which then gives them the chance of mutating. The more cells you

have, the more chance you have of developing mutations.

I understand that your quality of life is important which is why I

would really encourage you to try a new drug before you choose to

stop treatment all together.

Goodluck,

Tracey

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgiving day I will

be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided......not to take anymore chemo. I have an appt. with my Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt

want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.....I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

[Guest guest]

Hi Katy, you sure have a lot on your plate.  About that baby.  Yep, we get upset

with the kids and grand kids that think they are old enough to have sex, and

then old enough to cope with the consequences.  I have a little 2 1/2 yr. great

grand son who is the sweetest most precious little boy, and his mom is single. 

It isn't fair for everyone else involved to be put in a position to have to

pitch in and help for the next several years, but in truth, it is certainly

worth it in the end.

Your daughter has a lot of growing up to do, and the next couple of years will

take care of that, and so will having a baby.   And perhaps when the next couple

of years have passed and she is older, she will realize a lot of why you two

don't get along all the time is SHE IS JUST 16.  All 16 yr, old girls think

their moms are grouches, and don't know anything, and they resent being

restricted with rules and regulations.

But should you stop taking your meds, and should the consequences be severe, and

should you end up not being here, what would she think then?  What will she

think then if she has a baby and no mom to help her out with much needed advice

and love?

You have made the decision to accept her and her baby.  She should  accept you

and your illness , your medications, even help look for new trials coming up,

and  she should be going out of your way to help you through each day. And she

should realize, if you stop your medications, and something dire happens to you,

who is going to be there to help her with that baby?

When I was dx 13 years ago I was told perhaps I had 5 years to live.  Today with

all the new meds and new trials coming up, there no longer is a time limit, it

is a chronic disease, and life is live-able.  I doubt your doctor is going to go

along with your idea, and you do have the right to stop all meds.  But perhaps

you should sit down with your family and discuss what life would be like without

you? I am not the expert on the technicalities of stopping meds, but I am sure

you will hear from those that are, on how dangerous that could be.

I do hope you change your mind, and perhaps for the first time in your married

life with a family, think of you and only you.  This is your life, true it

revolves around your family, but where will they all be if you decide to stop

meds and suffer tragic consequences?  A mom in a bad mood is way better than no

mom at all.

I hope I have not over stepped boundaries here, but I have been through the baby

thing, and I have been through the cml thing. I have raised 6 children, alone, I

have 11 grand children, and I have two great grand children, one with a single

mom, and I have another one on the way, also a single mom at the moment.   The

most important issue here is you, and your health and your life.  And living to

see grand babies, and great grand babies..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

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: <katybug45@...>

Subject: [ ] Confusion, Descision (sp?) and a birthday!

Date: Friday, November 21, 2008, 2:07 AM

Hey guys,

I havent posted in a little while. Things have been kinda crazy

around here. I found out a couple of months ago that my 16 year old

daughter is pregnant, now how angry do you think I was??? Anyway, got

past the anger, and I am excited, although still unhappy about the

situation. My CML birthday just passed....five years in Oct. and my

literal birthday is coming up ..the 27th....thanksgivin g day I will be

48. I have made a discision (I just can not remember how to spell that

word!..lol) I discussed it with my kids and husband. I have been off

Sprycel for about five months. If you remember our a/c went out and we

couldnt afford to fix it or replace it so we were just using window

fans. I couldnt take sprycel because it doesnt mix too well with heat,

at least not for me, I get deathly ill. Anyway I was just waiting for

it to get to the cool part of the year so I could start taking sprycel

again. About three weeks ago (after it had been in the 50's and lower

for a couple of weeks) I decided to go back on it but first I wanted

to get my finger stuck and see what my CBC was doing since I had been

off of it for about three and a half months. My blood work was

absolutely PERFECT! The first time in five years of oral chemo and I

hadnt even been on it. So that got me to thinking. When I am off chemo

I feel pretty decent. I mean I still get reaaaaally tired, and I have

bone pain here and there and a lot of nausea but for the most part I

feel pretty good. When I am on Sprycel I am absolutely miserable I am

sick and tired all the time and have no energy. I went ahead and

started it about ten days ago, within two days I was constipated and

wanting to sleep all day, within five days I was severely depressed. I

stopped taking it. Within two days my mood lifted and I had energy and

my bowels straightened out. And that is when I definately

decided..... .not to take anymore chemo. I have an appt. with my Onc.

in the morning and I dread it because he is gonna be a pain about it.

I want to still be followed and see if my CBC will stay within normal

ranges or at least not get too out of whack. I told my kids and

husband that as long as everything was looking good I didnt want to

take anymore meds for CML but that if my counts went up, waaaay up I

would go back on them. I was very surprised by my 16 yr olds reaction.

She said she wanted me to stop taking it! She said I would wrather you

not take it and you and me get along cause your in a better mood, and

you feel better then for you to take it and be miserable the rest of

your life. That's kinda the confusion because 90 % if me doesnt want

to take anything but the other ten is scared to death! And I am having

another problem. I am having some kind of " attacks " I am having these

" spells " for lack of a good word where I am very very dizzy or

lightheaded, I don't know how to explain it except the room seems to

be moving up and down, kinda how it feels on a elevator, and I feel

like I am going to pass out. It only lasts about five or ten minutes

but usually I feel bad afterward. The last two times it has

happened.... .I was driving. Tonight was the worst, there was like this

vibration that went thru my head and a loud roaring in my head (not my

ears)my voice sound like it was coming from far away, I could barely

hold onto the steering wheel but I slowed the car almost to a stop, my

daughter was terrified, but I couldnt think I couldnt hardly talk, I

just kept saying just a second, it cleared all except a little fog so

I went ahead and drove home, but I had this odd feeling in my head

most of the night and I got really nauseated. Does that sound like a

trans ischemic attack to anyone? A few years ago before I was dx'ed

with CML I was having these quite frequently and asked doctor after

doctor about it and they all just kind of dismissed it. But this one

tonight was downright scary and so have the last few been, I just

don't know who to ask about it, my onc will tell me it's not from CML

so he cant help My Neuro blew me off the first time around and so did

my GP So I just dont know what to do, I know something is going on in

my head, but no one will find out what??? Anyway sorry I wrote a book

just had alot to kinda get off my chest. Hope everyone is doing well.

Hugs,

Katy

[Guest guest]

Hi Katy,

I am sorry to hear about your problems and have some comments. They will be

very harsh, but I hope that some of them will get you to take action.

First of all. Do you realize that you have endangered the lives of many

people by continuing to drive your car? Totally irresponsible!!! If you were

driving alone, along a deserted road and had a death wish, then I would say

that it was OK. Also, what kind of a lesson did you think you taught your

daughter? That it was OK to drive impaired. There are just too many sad

deaths caused by impaired drivers. Impaired doesn't just mean alcohol

impaired.

Now about your CML. It appears that you have taken over treating yourself.

You know what they say about a doctor who treats himself . he has a fool for

a patient.

If you want to go off any CML medications because you would rather have a

reasonable quality of life then that is your choice. Remember, that without

any treatment for your CML, your life expectancy is 3-5 years.

If you don't like your onc or feel that he is not treating you properly,

then switch doctors. Just because your WBC appears normal to you, it doesn't

mean that you are OK.

Also, stopping and starting a CML medication can result in becoming

resistant to the drug.

I hope that this have given you some food for thought,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: November 21, 2008 2:08 AM

Subject: [ ] Confusion, Descision (sp?) and a birthday!

Hey guys,

I havent posted in a little while. Things have been kinda crazy

around here. I found out a couple of months ago that my 16 year old

daughter is pregnant, now how angry do you think I was??? Anyway, got

past the anger, and I am excited, although still unhappy about the

situation. My CML birthday just passed....five years in Oct. and my

literal birthday is coming up ..the 27th....thanksgiving day I will be

48. I have made a discision (I just can not remember how to spell that

word!..lol) I discussed it with my kids and husband. I have been off

Sprycel for about five months. If you remember our a/c went out and we

couldnt afford to fix it or replace it so we were just using window

fans. I couldnt take sprycel because it doesnt mix too well with heat,

at least not for me, I get deathly ill. Anyway I was just waiting for

it to get to the cool part of the year so I could start taking sprycel

again. About three weeks ago (after it had been in the 50's and lower

for a couple of weeks) I decided to go back on it but first I wanted

to get my finger stuck and see what my CBC was doing since I had been

off of it for about three and a half months. My blood work was

absolutely PERFECT! The first time in five years of oral chemo and I

hadnt even been on it. So that got me to thinking. When I am off chemo

I feel pretty decent. I mean I still get reaaaaally tired, and I have

bone pain here and there and a lot of nausea but for the most part I

feel pretty good. When I am on Sprycel I am absolutely miserable I am

sick and tired all the time and have no energy. I went ahead and

started it about ten days ago, within two days I was constipated and

wanting to sleep all day, within five days I was severely depressed. I

stopped taking it. Within two days my mood lifted and I had energy and

my bowels straightened out. And that is when I definately

decided......not to take anymore chemo. I have an appt. with my Onc.

in the morning and I dread it because he is gonna be a pain about it.

I want to still be followed and see if my CBC will stay within normal

ranges or at least not get too out of whack. I told my kids and

husband that as long as everything was looking good I didnt want to

take anymore meds for CML but that if my counts went up, waaaay up I

would go back on them. I was very surprised by my 16 yr olds reaction.

She said she wanted me to stop taking it! She said I would wrather you

not take it and you and me get along cause your in a better mood, and

you feel better then for you to take it and be miserable the rest of

your life. That's kinda the confusion because 90 % if me doesnt want

to take anything but the other ten is scared to death! And I am having

another problem. I am having some kind of " attacks " I am having these

" spells " for lack of a good word where I am very very dizzy or

lightheaded, I don't know how to explain it except the room seems to

be moving up and down, kinda how it feels on a elevator, and I feel

like I am going to pass out. It only lasts about five or ten minutes

but usually I feel bad afterward. The last two times it has

happened.....I was driving. Tonight was the worst, there was like this

vibration that went thru my head and a loud roaring in my head (not my

ears)my voice sound like it was coming from far away, I could barely

hold onto the steering wheel but I slowed the car almost to a stop, my

daughter was terrified, but I couldnt think I couldnt hardly talk, I

just kept saying just a second, it cleared all except a little fog so

I went ahead and drove home, but I had this odd feeling in my head

most of the night and I got really nauseated. Does that sound like a

trans ischemic attack to anyone? A few years ago before I was dx'ed

with CML I was having these quite frequently and asked doctor after

doctor about it and they all just kind of dismissed it. But this one

tonight was downright scary and so have the last few been, I just

don't know who to ask about it, my onc will tell me it's not from CML

so he cant help My Neuro blew me off the first time around and so did

my GP So I just dont know what to do, I know something is going on in

my head, but no one will find out what??? Anyway sorry I wrote a book

just had alot to kinda get off my chest. Hope everyone is doing well.

Hugs,

Katy

[Guest guest]

> HI KATY: Nobody could have said it better than Zavie did, I

was thinking along the same lines, but he said it perfectly. I have

all kinds of side effects from my Gleevec, and so do people on

Tasigna and Sprycel. We are alive and thriving, and we all learn to

live with the side effects in order to keep living. I get dizzy

spells, foot and leg cramps, gained weight, periodic nausea, memory

lapses, FATIGUE CONSTANTLY. I get up every morning and Thank God for

everything. We all have problems, but listen to everything Zavie

said to you for your own good, and so you can be around for your

family and new grandchild.

Suzzie

> Hi Katy,

>

> I am sorry to hear about your problems and have some comments. They

will be

> very harsh, but I hope that some of them will get you to take

action.

>

> First of all. Do you realize that you have endangered the lives of

many

> people by continuing to drive your car? Totally irresponsible!!! If

you were

> driving alone, along a deserted road and had a death wish, then I

would say

> that it was OK. Also, what kind of a lesson did you think you

taught your

> daughter? That it was OK to drive impaired. There are just too many

sad

> deaths caused by impaired drivers. Impaired doesn't just mean

alcohol

> impaired.

>

> Now about your CML. It appears that you have taken over treating

yourself.

> You know what they say about a doctor who treats himself . he has a

fool for

> a patient.

>

> If you want to go off any CML medications because you would rather

have a

> reasonable quality of life then that is your choice. Remember, that

without

> any treatment for your CML, your life expectancy is 3-5 years.

>

> If you don't like your onc or feel that he is not treating you

properly,

> then switch doctors. Just because your WBC appears normal to you,

it doesn't

> mean that you are OK.

>

> Also, stopping and starting a CML medication can result in becoming

> resistant to the drug.

>

> I hope that this have given you some food for thought,

>

> Zavie

>

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> Sent: November 21, 2008 2:08 AM

>

> Subject: [ ] Confusion, Descision (sp?) and a birthday!

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgiving day I will

be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided......not to take anymore chemo. I have an appt. with my Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.....I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

>

>

>

[Guest guest]

I second Tracey- not like she needs one but I tested - CBC for 6 months before

my white cells spiked enough for them to do a BMB and diagnose me.  I was being

seen for high platelets and my hem/onc was actually going to release me back to

my GP because my platelets were normal but then the white count spiked.

 

 

Big hugs for you.

 

Chi

From: Tracey <traceyincanada@...>

Subject: [ ] Re: Confusion, Descision (sp?) and a birthday!

Date: Friday, November 21, 2008, 5:52 AM

Hi Katy,

I'm sorry you've been having such a hard time with treatment. Have

you tried Tasigna or any other drugs besides Gleevec and Sprycel to

see if you could tolerate them better?

One thing I want to point out to you is that you can't rely on your

CBC's to monitor your CML. You could be 100% PH+ and your CBC

wouldn't show it for months, maybe even years. You need to have

regular BMB's if you're not in CCR and if you are, you can do PCR's

to monitor. Without treatment, I would suggest getting BMB's every 3

months and PCR's every month.

The other thing you need to realize is that by going off all

treatment, you are allowing the Ph cells the chance of repopulating,

which then gives them the chance of mutating. The more cells you

have, the more chance you have of developing mutations.

I understand that your quality of life is important which is why I

would really encourage you to try a new drug before you choose to

stop treatment all together.

Goodluck,

Tracey

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgivin g day I will

be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided..... .not to take anymore chemo. I have an appt. with my Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt

want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.... .I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

[Guest guest]

and wisdom from Papa Zavie

From: Zavie <zmiller@...>

Subject: RE: [ ] Confusion, Descision (sp?) and a birthday!

Date: Friday, November 21, 2008, 9:53 AM

Hi Katy,

I am sorry to hear about your problems and have some comments. They will be

very harsh, but I hope that some of them will get you to take action.

First of all. Do you realize that you have endangered the lives of many

people by continuing to drive your car? Totally irresponsible! !! If you were

driving alone, along a deserted road and had a death wish, then I would say

that it was OK. Also, what kind of a lesson did you think you taught your

daughter? That it was OK to drive impaired. There are just too many sad

deaths caused by impaired drivers. Impaired doesn't just mean alcohol

impaired.

Now about your CML. It appears that you have taken over treating yourself.

You know what they say about a doctor who treats himself . he has a fool for

a patient.

If you want to go off any CML medications because you would rather have a

reasonable quality of life then that is your choice. Remember, that without

any treatment for your CML, your life expectancy is 3-5 years.

If you don't like your onc or feel that he is not treating you properly,

then switch doctors. Just because your WBC appears normal to you, it doesn't

mean that you are OK.

Also, stopping and starting a CML medication can result in becoming

resistant to the drug.

I hope that this have given you some food for thought,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

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

Sent: November 21, 2008 2:08 AM

groups (DOT) com

Subject: [ ] Confusion, Descision (sp?) and a birthday!

Hey guys,

I havent posted in a little while. Things have been kinda crazy

around here. I found out a couple of months ago that my 16 year old

daughter is pregnant, now how angry do you think I was??? Anyway, got

past the anger, and I am excited, although still unhappy about the

situation. My CML birthday just passed....five years in Oct. and my

literal birthday is coming up ..the 27th....thanksgivin g day I will be

48. I have made a discision (I just can not remember how to spell that

word!..lol) I discussed it with my kids and husband. I have been off

Sprycel for about five months. If you remember our a/c went out and we

couldnt afford to fix it or replace it so we were just using window

fans. I couldnt take sprycel because it doesnt mix too well with heat,

at least not for me, I get deathly ill. Anyway I was just waiting for

it to get to the cool part of the year so I could start taking sprycel

again. About three weeks ago (after it had been in the 50's and lower

for a couple of weeks) I decided to go back on it but first I wanted

to get my finger stuck and see what my CBC was doing since I had been

off of it for about three and a half months. My blood work was

absolutely PERFECT! The first time in five years of oral chemo and I

hadnt even been on it. So that got me to thinking. When I am off chemo

I feel pretty decent. I mean I still get reaaaaally tired, and I have

bone pain here and there and a lot of nausea but for the most part I

feel pretty good. When I am on Sprycel I am absolutely miserable I am

sick and tired all the time and have no energy. I went ahead and

started it about ten days ago, within two days I was constipated and

wanting to sleep all day, within five days I was severely depressed. I

stopped taking it. Within two days my mood lifted and I had energy and

my bowels straightened out. And that is when I definately

decided..... .not to take anymore chemo. I have an appt. with my Onc.

in the morning and I dread it because he is gonna be a pain about it.

I want to still be followed and see if my CBC will stay within normal

ranges or at least not get too out of whack. I told my kids and

husband that as long as everything was looking good I didnt want to

take anymore meds for CML but that if my counts went up, waaaay up I

would go back on them. I was very surprised by my 16 yr olds reaction.

She said she wanted me to stop taking it! She said I would wrather you

not take it and you and me get along cause your in a better mood, and

you feel better then for you to take it and be miserable the rest of

your life. That's kinda the confusion because 90 % if me doesnt want

to take anything but the other ten is scared to death! And I am having

another problem. I am having some kind of " attacks " I am having these

" spells " for lack of a good word where I am very very dizzy or

lightheaded, I don't know how to explain it except the room seems to

be moving up and down, kinda how it feels on a elevator, and I feel

like I am going to pass out. It only lasts about five or ten minutes

but usually I feel bad afterward. The last two times it has

happened.... .I was driving. Tonight was the worst, there was like this

vibration that went thru my head and a loud roaring in my head (not my

ears)my voice sound like it was coming from far away, I could barely

hold onto the steering wheel but I slowed the car almost to a stop, my

daughter was terrified, but I couldnt think I couldnt hardly talk, I

just kept saying just a second, it cleared all except a little fog so

I went ahead and drove home, but I had this odd feeling in my head

most of the night and I got really nauseated. Does that sound like a

trans ischemic attack to anyone? A few years ago before I was dx'ed

with CML I was having these quite frequently and asked doctor after

doctor about it and they all just kind of dismissed it. But this one

tonight was downright scary and so have the last few been, I just

don't know who to ask about it, my onc will tell me it's not from CML

so he cant help My Neuro blew me off the first time around and so did

my GP So I just dont know what to do, I know something is going on in

my head, but no one will find out what??? Anyway sorry I wrote a book

just had alot to kinda get off my chest. Hope everyone is doing well.

Hugs,

Katy

[Guest guest]

Hi Katy

I to will have to agree with Zavie.

 I do not drive very often anymore because I have concentration problems and get

misplaced easily..

But cannot not and will not complain because I am alive and I am very thankful

to be.

Fatigue muscle and bone pain  weight gain... and a lot of other side efects that

go along with it.

But I am here and can enjoy my children and granddaughter, and my soon to be

grandson.

Sure my children get frusterated with me but also they are thankful that I am

alive.

This is not the life I had wanted but am thankful I have a life.

Anita

 

________________________________

From: suzzienovember <suzzienovember@...>

Sent: Friday, November 21, 2008 12:01:06 PM

Subject: Re: [ ] Confusion, Descision (sp?) and a birthday!

> HI KATY: Nobody could have said it better than Zavie did, I

was thinking along the same lines, but he said it perfectly. I have

all kinds of side effects from my Gleevec, and so do people on

Tasigna and Sprycel. We are alive and thriving, and we all learn to

live with the side effects in order to keep living. I get dizzy

spells, foot and leg cramps, gained weight, periodic nausea, memory

lapses, FATIGUE CONSTANTLY. I get up every morning and Thank God for

everything. We all have problems, but listen to everything Zavie

said to you for your own good, and so you can be around for your

family and new grandchild.

Suzzie

> Hi Katy,

>

> I am sorry to hear about your problems and have some comments. They

will be

> very harsh, but I hope that some of them will get you to take

action.

>

> First of all. Do you realize that you have endangered the lives of

many

> people by continuing to drive your car? Totally irresponsible! !! If

you were

> driving alone, along a deserted road and had a death wish, then I

would say

> that it was OK. Also, what kind of a lesson did you think you

taught your

> daughter? That it was OK to drive impaired. There are just too many

sad

> deaths caused by impaired drivers. Impaired doesn't just mean

alcohol

> impaired.

>

> Now about your CML. It appears that you have taken over treating

yourself.

> You know what they say about a doctor who treats himself . he has a

fool for

> a patient.

>

> If you want to go off any CML medications because you would rather

have a

> reasonable quality of life then that is your choice. Remember, that

without

> any treatment for your CML, your life expectancy is 3-5 years.

>

> If you don't like your onc or feel that he is not treating you

properly,

> then switch doctors. Just because your WBC appears normal to you,

it doesn't

> mean that you are OK.

>

> Also, stopping and starting a CML medication can result in becoming

> resistant to the drug.

>

> I hope that this have given you some food for thought,

>

> Zavie

>

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

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

Of

> Sent: November 21, 2008 2:08 AM

> groups (DOT) com

> Subject: [ ] Confusion, Descision (sp?) and a birthday!

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgivin g day I will

be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided..... .not to take anymore chemo. I have an appt. with my Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.... .I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

>

>

>

[Guest guest]

Katy,

I agree with Bobbie, you need to think hard about this decision. It

is not one to be taken lightly. I would think that maybe you could

tell your heme/onc doctor about your side-effects and see if there is

another medication you could try, or perhaps same one, lower dose.

We just don't know what the ramifications of not taking these meds

are, and as far as we know, Leukemia is not a curable disease except

by bone marrow transplant.

You can't leave your daughter motherless at this critical point in

her life--she needs you and so does that baby. You have too much to

give to take risks like this unecessarily. I don't feel that great

on Gleevec, I have loads of side effects, but I am still taking it--I

want to see my boys grown up and see them married and see their

children! I take it even though I am tired and sick and my skin is

peeling off and I have diarrhea 10 times a day. It is just too

important to go to my Gabe's soccer games and to see my Schuyler's

beading projects. I want to be there for them. My oldest daughter

is turning 30 in three days, and my next oldest is 24, and I want to

see them married and having babies, too.

SO don't make any hasty decisions and talk this over with lots of

people (doctors included) before doing it. Maybe there is a safe way

to do it with close monitoring or maybe a study testing people who

want to go off their meds--I don't know, but do your homework first.

You'll be in my prayers--

Vicki

>

> From: <katybug45@...>

> Subject: [ ] Confusion, Descision (sp?) and a birthday!

>

> Date: Friday, November 21, 2008, 2:07 AM

>

>

>

>

>

>

> Hey guys,

> I havent posted in a little while. Things have been kinda crazy

> around here. I found out a couple of months ago that my 16 year old

> daughter is pregnant, now how angry do you think I was??? Anyway,

got

> past the anger, and I am excited, although still unhappy about the

> situation. My CML birthday just passed....five years in Oct. and my

> literal birthday is coming up ..the 27th....thanksgivin g day I

will be

> 48. I have made a discision (I just can not remember how to spell

that

> word!..lol) I discussed it with my kids and husband. I have been off

> Sprycel for about five months. If you remember our a/c went out and

we

> couldnt afford to fix it or replace it so we were just using window

> fans. I couldnt take sprycel because it doesnt mix too well with

heat,

> at least not for me, I get deathly ill. Anyway I was just waiting

for

> it to get to the cool part of the year so I could start taking

sprycel

> again. About three weeks ago (after it had been in the 50's and

lower

> for a couple of weeks) I decided to go back on it but first I wanted

> to get my finger stuck and see what my CBC was doing since I had

been

> off of it for about three and a half months. My blood work was

> absolutely PERFECT! The first time in five years of oral chemo and I

> hadnt even been on it. So that got me to thinking. When I am off

chemo

> I feel pretty decent. I mean I still get reaaaaally tired, and I

have

> bone pain here and there and a lot of nausea but for the most part I

> feel pretty good. When I am on Sprycel I am absolutely miserable I

am

> sick and tired all the time and have no energy. I went ahead and

> started it about ten days ago, within two days I was constipated and

> wanting to sleep all day, within five days I was severely

depressed. I

> stopped taking it. Within two days my mood lifted and I had energy

and

> my bowels straightened out. And that is when I definately

> decided..... .not to take anymore chemo. I have an appt. with my

Onc.

> in the morning and I dread it because he is gonna be a pain about

it.

> I want to still be followed and see if my CBC will stay within

normal

> ranges or at least not get too out of whack. I told my kids and

> husband that as long as everything was looking good I didnt want to

> take anymore meds for CML but that if my counts went up, waaaay up I

> would go back on them. I was very surprised by my 16 yr olds

reaction.

> She said she wanted me to stop taking it! She said I would wrather

you

> not take it and you and me get along cause your in a better mood,

and

> you feel better then for you to take it and be miserable the rest of

> your life. That's kinda the confusion because 90 % if me doesnt want

> to take anything but the other ten is scared to death! And I am

having

> another problem. I am having some kind of " attacks " I am having

these

> " spells " for lack of a good word where I am very very dizzy or

> lightheaded, I don't know how to explain it except the room seems to

> be moving up and down, kinda how it feels on a elevator, and I feel

> like I am going to pass out. It only lasts about five or ten minutes

> but usually I feel bad afterward. The last two times it has

> happened.... .I was driving. Tonight was the worst, there was like

this

> vibration that went thru my head and a loud roaring in my head (not

my

> ears)my voice sound like it was coming from far away, I could barely

> hold onto the steering wheel but I slowed the car almost to a stop,

my

> daughter was terrified, but I couldnt think I couldnt hardly talk, I

> just kept saying just a second, it cleared all except a little fog

so

> I went ahead and drove home, but I had this odd feeling in my head

> most of the night and I got really nauseated. Does that sound like a

> trans ischemic attack to anyone? A few years ago before I was dx'ed

> with CML I was having these quite frequently and asked doctor after

> doctor about it and they all just kind of dismissed it. But this one

> tonight was downright scary and so have the last few been, I just

> don't know who to ask about it, my onc will tell me it's not from

CML

> so he cant help My Neuro blew me off the first time around and so

did

> my GP So I just dont know what to do, I know something is going on

in

> my head, but no one will find out what??? Anyway sorry I wrote a

book

> just had alot to kinda get off my chest. Hope everyone is doing

well.

> Hugs,

> Katy

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>