Re: Doctor advised me to stop taking gleevec

[Guest guest]

--- In , " cjwilliams16 " <coralee.williams@...>

wrote:

>

> My doctor phoned and told me that my WBC was too low and I would

need to hold the

> gleevec for a while. I have been off it for two weeks and was just

wondering about those of

> you who went off gleevec for a while. How long were you off before

you went back on? What

> things should I be concerned about if I am off Gleevec? Are there

any early signs of

> intolerance I can look for?

>

I was never taken off Gleevec, but had the dosage

reduced to 300 mgs for awhile. I am now back to 400

mgs per day. You might give your doctor a call

and ask him/her about about the discontinuation of

Gleevec.

[Guest guest]

Hey Group (FYI). . . each of us is an individual; I don't take my Iron with my

gold; which I take with dinner (largest meal). It is possible that some may

have a problem absorbing Iron or other supplements such as Potassium, Calcium,

Magnesium, etc., with the gold. My diagnosing Dr. told me that our gold is a

very benign drug; even so it is a Cancer~chemotherapy drug.

" K "

" I AIN'T FINISHED YET " !!!

[Guest guest]

I was diagnosed with CML in July of this year, so I am a relative " newbie " in

this. My doctor took me off gleevec after only a month. Apparently, gleevec

attaches itself only to the " bad " cells and leaves the others unharmed. Amazing

little orange pill! Anyway, upon my diagnosis, my WBC was 127,000. Once

gleevec was introduced into my system, it started " killing " the bad cells. In a

matter of four weeks, gleevec had dropped my WBC to 2,100. Three days later, my

WBC bottomed out, my temperature topped out a 104.5 and I was admitted to the

hospital for four days of intense I.V. antibiotics. DO NOT LET THIS ALARM YOU!!

I had an infection before my WBC bottomed out. That was two months ago and I am

now in remission and after first of the year we are going to do another bone

marrow biopsy and hopefully, the Philadelphia chromosome will not be present in

the marrow!

Now to your questions. My biggest concern/fear was actually coming off

gleevec. I call gleevec my " little orange warrior " and I count on it to get in

there on a daily basis and kick some major CML butt!!! So, not having my meds

scared me like crazy!!! DO NOT DESPAIR!!! One thing I learned is gleevec stays

in your marrow once you quit taking the drug. Don't know how long, but it does.

Now that your WBC is a little low, take per cautions to stay healthy. Wash your

hands often. Keep hand sanitizer at hand, use it often and insist those around

you do too. Ask your PCP do you need an antibiotic? Avoid sick people and

babies. I have always grouped babies and petri (sp?)dishes in the same

category. Just little mediums for bacteria growth!!...........LOL

After the first four weeks on gleevec, I was starting to notice some relief

from some of the side effects. After staying off gleevec for three weeks, I

noticed a recurrence of the side effects. They weren't as bad the second time

around with the exception to the fatigue and I started noticing some relief

after a couple of weeks.

I wish you luck on your journey! I hope my answer has helped in some small

way. Like I said, I am a relative newbie in this XML thing, but I am already

realizing it IS NOT the end all I thought it was when they first told me I had

leukemia! Keep your chin up, better days are coming!!!!

Take care of you!!!

Troy

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

--- In , " cjwilliams16 " <coralee.williams@...>

wrote:

>

> My doctor phoned and told me that my WBC was too low and I would

need to hold the

> gleevec for a while. I have been off it for two weeks and was just

wondering about those of

> you who went off gleevec for a while. How long were you off before

you went back on? What

> things should I be concerned about if I am off Gleevec? Are there

any early signs of

> intolerance I can look for?

>

This happened to me last year after I was first diagnosed and my

local doc took it upon himself to start messing with my dose, I

started with 400 mgs and tolerated that OK for about 6 weeks and

then things started going too low so my doc would have me go off for

a while, I think the longest I was off was 4 weeks, then he had me

take 300 mgs for a while then he had me taking 400 mgs every other

day and this just caused a huge mess. At disgnosis is August 2005

my cells were 98% leukemic. By October 2005 they were 3.4%. After

this was when he started messing with my dose because my counts kept

going too low so by the time I went back to see my Mayo doc 6 months

later things were so messed up by May 2006 my cells were back up to

68% so I went on 800 mgs of gleevec and have been on since June.

This brings my counts real low so I have to have monthly neulasta

shots. Just make sure that your doc keeps an eye on you and he

knows what he's doing unlike the doc that I had. Thank God for my

Mayo doc. I guess that's why we should really use a doc that is

specialized in CML. Take care.

Sheila

38 yrs old

dxed 8/3/05

800 mgs gleevec