Etc., etc.

[Guest guest]

Donna, congratulations on beating back your WBC in such short time.

Unvelievable. I hope the trend continues until you reach PCRU and thump your

nose at the blasted disease. Is that a record, or what. You are right, it

doesn't matter what your counts were when you were diagnosed, it's how you get

treatment and respond to it. Are you on Gleevec?

AndeJane, you have a very lovely and unusual name. I regret that you are yet

another patient with CML, but you are not a casualty nor a victim. You can

beat CML by fighting back. CCR will be gradual as the drugs kill off the

immature white cells that are invading your body. You can take a vacation from

CML, get the rash treated by a good dermatologist and you should be able to go

back to Gleevec. It has been the rule that anything below 400 mg. is

sub-optimal, although some have never been able to tolerate 300 mg. better and

have gone on to reach CCR. I, personally would be afraid to go on 100 unless my

counts were very low. That happened to me, getting off Inteferon, they started

me on 100 and gradually increased until I got up to 600 mg., all at my urging.

I am glad that you found this site and want you to know that we are here for

you. You are so lucky to be meeting Zazzy, I don't think any of us had have had

the pleasure yet, but that will change when you have the chance to meet up. I

know you will have a lot to talk about and learn a lot from her.

Marcos, thanks for posting the information, but when I went to the URL your

provided, there was a fee of over $700, a bit much for my budget this week.

LOL.

Congratulations Patti for your patience in enduring the awful rash, for that

you get a medal. I had it on my ankles and and in other places, like needle

tracks, but they don't itch as much as the ankles. I had to put ice bags on it

to relieve the itching. Some people are unable to tolerate the drug and are

therefore resistant. I also wore high top socks to keep me from scratching. I

am now on SKI and even on a sub-optimal dose of 300 mg., somehow managed to get

a reduction in my Ph+, but I have to put up with the side effects of back pain,

fatigue and stomach cramps. If anyone has had a gall bladder removed, they will

mostly always have problems with the digestive tract according to what my doctor

told me yesterday. We all know what the " runs " are. LOL. He showed me a chart

and explained what happens to the bile and then said if I didn't understand it,

he would explain it again. Now that doctor gets a thumbs up from me. It's good

to see that you have such a positive attitude for the future. All best wishes

to you for hanging in there and passing on your exuberance to the rest of us, it

is refreshing.

Vicki, I hope your dark days are over, and that you are now able to work again

is miraculous. I have to admire people who work with CML. I just cannot

imagine how I would do it. You mentioned Lyrica. My gosh, how can you function

with all of those potent drugs? I took one Lyrica the doctor gave me today and

I have been in la la land ever since. I couldn't stand up and had to go back to

bed and stayed there all day. My husband came home from work at about 5:30 p.m.

and I was just starting to stir about. My memory is singed and I can't even

remember names of people I know, I mean totally blank. I told my husband to

just fix everyone a grilled cheese sandwich and that is what we had. Always

good in an emergency. You go girl, and keep rocking the boat.

Lottie

Susie, Bobby knows me well enough to know how I suffer from Big " D " . Immodium

does not work for me, but I do carry some in my purse. My doctor told me

yesterday to use Colace, a prescription that binds the bile that causes it and

to also use pysillium twice a day. I bought the flavored one and it's o.k.

What works for me is Lotmtil and Paregoric, both prescriptions. Bobby and I

have both gone the route with all the older drugs out there and the newer kinase

inhibitors. Though she is a year younger than me, she has had CML one year

longer. She's unstoppable. You wind her up and off she goes. She has a

wonderful adventuresome spirit and a survivor and best of all a good and loyal

friend. Do see a doctor of Internal Medicine to see if he can give you

something for the nausea. For the diarrhea, see a good gastrointerologist. I

went to the Internist first and he sent me to the Gastrointerologist and after

the results were in, went back to Internist. Maybe some would not understand

why I see so many doctors, but I want the best care, so I see an ologist for

everything. I note that some others do the same. I have the comfort in knowing

I sought the best care and the rest is up to GOD. I just have to be sure that

each doctor knows what the other is doing, so I have a history that I bring with

me and update it for every appointment as it is constantly changing. When they

ask if I am still on Gleevec, I laugh because I then know I haven't been there

in a long, long time. I'm in my 5th trial, so it's hard for them to keep track.

My history record brings them up to date.

Lottie

Dear Zazzy, your name is the last letter in the alphabet, so now I get to you. I

was wondering how you could still get Lotronex if it was banned by the FDA. As

for Lyrica, I took one capsule today and now I know why I stopped taking it when

my neurologist gave me a sample last year. I simply cannot take it. It cut the

pain in half but I am insane and my body won't function properly, either. LOL.

Give me a break. I have a drug idiocyncracsy. Our old family doctor used to

give me a child's portion because of the way my tissues and blood retain the

drug. You go Superwoman, I can see you now with a saw and hammer in your hand.

Wishing you all the best and to all on this list I send my blessings,

Lottie

[Guest guest]

Hi Lottie,

As I stated, Lotronex can be prescribed ONLY by GI's who are certifed. The FDA

lifted its ban when so many women that it had helped petitioned them to do so.

I'm so glad they did!!! Note that these GIs have to be recertified (every year I

think).

I'm one of the lucky few who suffer hardly any side-effects from drugs.

Love,

Zazz

[ ] Etc., etc.

Donna, congratulations on beating back your WBC in such short time.

Unvelievable. I hope the trend continues until you reach PCRU and thump your

nose at the blasted disease. Is that a record, or what. You are right, it

doesn't matter what your counts were when you were diagnosed, it's how you get

treatment and respond to it. Are you on Gleevec?

AndeJane, you have a very lovely and unusual name. I regret that you are yet

another patient with CML, but you are not a casualty nor a victim. You can beat

CML by fighting back. CCR will be gradual as the drugs kill off the immature

white cells that are invading your body. You can take a vacation from CML, get

the rash treated by a good dermatologist and you should be able to go back to

Gleevec. It has been the rule that anything below 400 mg. is sub-optimal,

although some have never been able to tolerate 300 mg. better and have gone on

to reach CCR. I, personally would be afraid to go on 100 unless my counts were

very low. That happened to me, getting off Inteferon, they started me on 100 and

gradually increased until I got up to 600 mg., all at my urging. I am glad that

you found this site and want you to know that we are here for you. You are so

lucky to be meeting Zazzy, I don't think any of us had have had the pleasure

yet, but that will change when you have the chance to meet up. I know you will

have a lot to talk about and learn a lot from her.

Marcos, thanks for posting the information, but when I went to the URL your

provided, there was a fee of over $700, a bit much for my budget this week. LOL.

Congratulations Patti for your patience in enduring the awful rash, for that

you get a medal. I had it on my ankles and and in other places, like needle

tracks, but they don't itch as much as the ankles. I had to put ice bags on it

to relieve the itching. Some people are unable to tolerate the drug and are

therefore resistant. I also wore high top socks to keep me from scratching. I am

now on SKI and even on a sub-optimal dose of 300 mg., somehow managed to get a

reduction in my Ph+, but I have to put up with the side effects of back pain,

fatigue and stomach cramps. If anyone has had a gall bladder removed, they will

mostly always have problems with the digestive tract according to what my doctor

told me yesterday. We all know what the " runs " are. LOL. He showed me a chart

and explained what happens to the bile and then said if I didn't understand it,

he would explain it again. Now that doctor gets a thumbs up from me. It's good

to see that you have such a positive attitude for the future. All best wishes to

you for hanging in there and passing on your exuberance to the rest of us, it is

refreshing.

Vicki, I hope your dark days are over, and that you are now able to work again

is miraculous. I have to admire people who work with CML. I just cannot imagine

how I would do it. You mentioned Lyrica. My gosh, how can you function with all

of those potent drugs? I took one Lyrica the doctor gave me today and I have

been in la la land ever since. I couldn't stand up and had to go back to bed and

stayed there all day. My husband came home from work at about 5:30 p.m. and I

was just starting to stir about. My memory is singed and I can't even remember

names of people I know, I mean totally blank. I told my husband to just fix

everyone a grilled cheese sandwich and that is what we had. Always good in an

emergency. You go girl, and keep rocking the boat.

Lottie

Susie, Bobby knows me well enough to know how I suffer from Big " D " . Immodium

does not work for me, but I do carry some in my purse. My doctor told me

yesterday to use Colace, a prescription that binds the bile that causes it and

to also use pysillium twice a day. I bought the flavored one and it's o.k. What

works for me is Lotmtil and Paregoric, both prescriptions. Bobby and I have both

gone the route with all the older drugs out there and the newer kinase

inhibitors. Though she is a year younger than me, she has had CML one year

longer. She's unstoppable. You wind her up and off she goes. She has a wonderful

adventuresome spirit and a survivor and best of all a good and loyal friend. Do

see a doctor of Internal Medicine to see if he can give you something for the

nausea. For the diarrhea, see a good gastrointerologist. I went to the Internist

first and he sent me to the Gastrointerologist and after the results were in,

went back to Internist. Maybe some would not understand why I see so many

doctors, but I want the best care, so I see an ologist for everything. I note

that some others do the same. I have the comfort in knowing I sought the best

care and the rest is up to GOD. I just have to be sure that each doctor knows

what the other is doing, so I have a history that I bring with me and update it

for every appointment as it is constantly changing. When they ask if I am still

on Gleevec, I laugh because I then know I haven't been there in a long, long

time. I'm in my 5th trial, so it's hard for them to keep track. My history

record brings them up to date.

Lottie

Dear Zazzy, your name is the last letter in the alphabet, so now I get to you.

I was wondering how you could still get Lotronex if it was banned by the FDA. As

for Lyrica, I took one capsule today and now I know why I stopped taking it when

my neurologist gave me a sample last year. I simply cannot take it. It cut the

pain in half but I am insane and my body won't function properly, either. LOL.

Give me a break. I have a drug idiocyncracsy. Our old family doctor used to give

me a child's portion because of the way my tissues and blood retain the drug.

You go Superwoman, I can see you now with a saw and hammer in your hand.

Wishing you all the best and to all on this list I send my blessings,

Lottie