Re: Starting Gleevec on Mondy couple of questions?

[Guest guest]

Hi Ray,

It sounds like Beth's job is quite risky. I'm not sure if she's at

any more risk than anyone else though. I don't think anyone wants to

get any of the infections that she's exposed to, CML or not.

That being said, she should be getting CBC's every week at this point

so if she does become neutropenic, you'll know about it pretty soon.

Some patients don't get neutropenic at all while others do and

there's no way to predict if Beth's counts will tank or not.

As for the side effects, there's a huge range of them which may or

may not effect Beth. There are a variety of ways to deal with them

though so if Beth does get a few of them, let us know and we'll give

you some tips on how to cope with them. For starters though, Imodium

usually works great for the diarreah, eating lots of food when she

takes the Gleevec, should help with the nausea and calcium can help

with the muscle cramps but don't take the calcium within 2 hours of

the Gleevec or it can interfere with the absorption of the

Gleevec.

Take care,

Tracey

dx Jan 2002

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, folks. Beth is starting Gleevec on monday at 400mg. I know all

> cases are different but are there side effects that allmost

everyone

> gets and we should be ready for? I'm nervous that she will drop

her

> white counts and become neutropenic. She works as a respiratory

> therapist and has to treat the worst infectious pt.s in the

hospital.

> MRSA,Pneumonia,RSV the works. Gowns,Gloves and Masks are worn by

all

> entering these rooms but just the same I hate the idea of her

entering

> these rooms if she is imunosuppresd. She also gets called to the

ER.

> to treat pt.s and sometimes where you don't allways know about

> isolation precautions untill a diagnosis is made. Time to consider

a

> carrer change?? Anyone out there work in similar circumstances?

Are

> there folks who never get neutropenic and have no worries at all?

> Guess thats enough questions for now. This is still very new to us

> and we have no idea what to expect or the impact it will make on

our

> day to day.

> Thanks again,

> Ray

>

[Guest guest]

Hi, Ray

Keep a positive outlook. I have been on gleevec for over four years

and have never had any side effects or missed days of work because of

being sick. I am a special education teacher -- lots of germs. Other

staff around me gets sick and takes many sick days.

I truly believe that if you think positively that positive things

will happen. It never crossed my mind that I would get side effects.

I take gleevec after dinner with a glass of water. I drink no

alcohol and do not eat grapefruit. Deal with side effects as they

come up, but do not live your life worrying about what ifs.

Sue

--- In , " monkeyfun_16901 " <monkeyfun_16901@...>

wrote:

>

> Hi, folks. Beth is starting Gleevec on monday at 400mg. I know all

> cases are different but are there side effects that allmost

everyone

> gets and we should be ready for? I'm nervous that she will drop

her

> white counts and become neutropenic. She works as a respiratory

> therapist and has to treat the worst infectious pt.s in the

hospital.

> MRSA,Pneumonia,RSV the works. Gowns,Gloves and Masks are worn by

all

> entering these rooms but just the same I hate the idea of her

entering

> these rooms if she is imunosuppresd. She also gets called to the

ER.

> to treat pt.s and sometimes where you don't allways know about

> isolation precautions untill a diagnosis is made. Time to consider

a

> carrer change?? Anyone out there work in similar circumstances?

Are

> there folks who never get neutropenic and have no worries at all?

> Guess thats enough questions for now. This is still very new to us

> and we have no idea what to expect or the impact it will make on

our

> day to day.

> Thanks again,

> Ray

>

[Guest guest]

She should be careful until she's in blood remission. As Tracey said she

should have CBCs on a weekly basis until blood remission. At the beginning

of the treatment a lot is going on in the body, it 's good to take it easy.

My ldh (waste from dead cells) was sky high at the beginning, blood ph is

low, all of this hard on kidneys and on the body in general (drink

water). Also, as another post mentioned, until she reaches cytogenetic

remission, some of the white cells are not working well, so even if the cbc

is normal on the paper, you should be a little cautious. On the reassuring

side, in the year before dx I was having small infections, bad colds, wounds

not healing well. At dx I had 250k wbc, 3 weeks after 400mg gleevec I was

back at 6, and stayed in the normal range ever since (2 years 1/2). I had no

infection at all, not even a cold, for about a year after dx. Just a few

colds and some ear infections (I am a diver) since. But I did take some

precautions in the first year, although nothing very special, just things

like washing hands, avoiding too risky foods or when possible obviously sick

persons.

Marcos.

On 11/3/07, monkeyfun_16901 <monkeyfun_16901@...> wrote:

>

> Hi, folks. Beth is starting Gleevec on monday at 400mg. I know all

> cases are different but are there side effects that allmost everyone

> gets and we should be ready for? I'm nervous that she will drop her

> white counts and become neutropenic. She works as a respiratory

> therapist and has to treat the worst infectious pt.s in the hospital.

> MRSA,Pneumonia,RSV the works. Gowns,Gloves and Masks are worn by all

> entering these rooms but just the same I hate the idea of her entering

> these rooms if she is imunosuppresd. She also gets called to the ER.

> to treat pt.s and sometimes where you don't allways know about

> isolation precautions untill a diagnosis is made. Time to consider a

> carrer change?? Anyone out there work in similar circumstances? Are

> there folks who never get neutropenic and have no worries at all?

> Guess thats enough questions for now. This is still very new to us

> and we have no idea what to expect or the impact it will make on our

> day to day.

> Thanks again,

> Ray

>

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

Dear Ray, when I started Gleevec, last April, I sat in my doctor's

private office and he showed me the 3 long pages of side-effects in the

dictionary of medicine, under Gleevec. On those pages there are also

probabilities. Depending on her age and other health issues, if Beth is

in the chronic phase and generally in good health, the probabilities of

having side effects are extremely limited. The most common and probable

is edema, sometimes fatigue/anemia (those came true for me but take

notes that my wbc was 306k, lots of clean up to do!).

My wbc did get extremely close to nothing. I was also concerned with

infections like you are but for other reasons. Just imagine what it is

to get that diagnosis when you are single and you'll get it. So, what

about men, doctor? and the answer was, drumroll: don't tempt the devil,

girl. Other than the fact that it seemed pretty romantic to die from a

kiss it did keep me very very scared and I did get through all the long

list of awkward questions when I was being courted, and became a living

fever-radar. As scared as I was.......... it did not get me immuned to

cuteness: I did get an insane cold in that first month of Gleevec, which

lasted for 5 long weeks, the guilty guy was a little 1 year old baby who

came to visit.

I would say to Beth, like the others, wash your hands, don't kiss the

adoring little baby with the runny nose, follow your wbc to see if you

need to take some time off work, drink lots of water all day every day,

eat a consistant meal (as natural as can be, try to give your liver a

break as much as you can) when taking Gleevec, no grapefruit, and do all

other things that your body and soul tells you to do, each person makes

their own journey and finds strength in it.

To reassure you, what I would suggest is to have a notebook in which you

take notes, day by day, of any mild symptom that worries you and then go

through that list when you meet with the doctor. When I started Gleevec,

with my astronomical amount of platelets, I was counting bruises and

inventoring them.... it feels silly now, but it was the only feeling of

control I could get. I know that I sometimes reported odd things that

made my doctor look at me and laugh charmingly. Anything, in that first

period can seem strange. Why I started then to make mistakes when

spelling in French (that's my first language) was certainly linked to

the fact that I was preoccupied and not Gleevec, for example.

I have an artistic nature so I never asked for possible scenarios, I

basically just read the scientific litterature to understand what was

happening with my hematopoietic cells and, as I was doing my thesis on

artistic research in the filmmaker's work, I pursued my readings on the

advancement of research on the leukemias, for fun. My doctor described

me as a patient who was ready to improvise and he is right. It is a good

way to find peace and focussing on the fact that, after all, you are

doing pretty well.

all my best,

myriam

dxd March 2007