Re: questions/new tests

[Guest guest]

Hi ,

Are you saying that you were on Gleevec for a whole month and they

only did a CBC now? If so, you may want to run to another doctor

and fast.

In the first weeks and even months, you should be getting blood

tests every week until your counts are stable. You should also be

getting kidney and liver function tests as well as your electrolytes

checked regularly. Gleevec can cause liver and kidney toxicity and

it can also deplete various electrolytes like potassium, phosphorus,

calcium and magnesium.

Going a whole month without a blood test as a brand newly diagnosed

patient is very irresponsible and quite frankly dangerous, in my

opinion. Some doctors just don't have any experience with Gleevec

and don't know how to manage patients who are on it. If you can, go

see someone who is more familiar with CML and more specificially,

Gleevec.

You don't mention what your ANC (absolute neutrophil count). This

is more important than your WBC and depending how low it is, you

might be required to stop Gleevec breifly so it can rebound.

There is an FAQ document in the files section of this group you may

also want to check out. It will probably answer alot of your

questions. You can find it by clicking on " files " at the left of

the main page then clicking on " CML FAQ " .

Hope this helps a bit,

Tracey

--- In , " Dr. Pat " <drpatriciamaroudas@y...>

wrote:

>

> Hello to Everyone,

> I am a newbie diagnosed Feb 05 2 months on 400mg gleevac. I am 42

year

> old female from Gilroy, Ca. I had my first blood test after a

month of

> gleevac and my wbc's went from 130,000. to 2,000. rbc's, bcb,

mchc, and

> lymphs are all low. My baso, eos, and platelets are high. I have

my

> next doctor appointment on tuesday the 14th I was wondering

besides the

> bmb done the first week of diagnosis is there any other test I

should

> suggest my doctor doctor perform or should I just wait for the

next bmb

> after three months of gleevac? Any questions that I should ask the

doc

> also? I want to Thank everyone for the good information and

support.

> My thought and prayers are with you all.

> Dr. Pat

[Guest guest]

Dear

I agree with Tracey. Monthly blood tests are not enough during the

early days of Glivec (uk spelling). Your response to Glivec needs

to be closely monitored on a weekly basis initially.

Please ask to be more closely monitored and look at the good

information to which Tracey has drawn your attention on this site.

Best wishes

Annette

Husband, , diagnosed in May 2003. No response to 1000mgd

Glivec due to P loop mutation. Just started BMS Phase 2 Trial in

Germany and having weekly blood testing.

> >

> > Hello to Everyone,

> > I am a newbie diagnosed Feb 05 2 months on 400mg gleevac. I am

42

> year

> > old female from Gilroy, Ca. I had my first blood test after a

> month of

> > gleevac and my wbc's went from 130,000. to 2,000. rbc's, bcb,

> mchc, and

> > lymphs are all low. My baso, eos, and platelets are high. I

have

> my

> > next doctor appointment on tuesday the 14th I was wondering

> besides the

> > bmb done the first week of diagnosis is there any other test I

> should

> > suggest my doctor doctor perform or should I just wait for the

> next bmb

> > after three months of gleevac? Any questions that I should ask

the

> doc

> > also? I want to Thank everyone for the good information and

> support.

> > My thought and prayers are with you all.

> > Dr. Pat

[Guest guest]

--- In , " Dr. Pat " <drpatriciamaroudas@y...>

wrote:

>

> Hello to Everyone,

> I am a newbie diagnosed Feb 05 2 months on 400mg gleevac. I am 42

year

> old female from Gilroy, Ca. I had my first blood test after a

month of

> gleevac and my wbc's went from 130,000. to 2,000. rbc's, bcb, mchc,

and

> lymphs are all low. My baso, eos, and platelets are high. I have

my

> next doctor appointment on tuesday the 14th I was wondering besides

the

> bmb done the first week of diagnosis is there any other test I

should

> suggest my doctor doctor perform or should I just wait for the next

bmb

> after three months of gleevac?

____________________

Hi Dr. Pat,

Hey, I even know where Gilroy is! isn't that the garlic capital of

the world?

I agree that typically you would be monitored more often at the

beginning....maybe weekly, then bi-weekly...to see just how you are

responding.

Gleevec does suppress the bone marrow and can cause anemia for some,

and some use Procrit for this.

Dr. Druker/OHSU (and principle investigator for the Gleevec trials in

case you are not familiar with his name) would do a cbc with

differential.......

and a chemistry, including uric acid (which is not usually part of

the panel).....

especially to monitor liver enzymes.......

Also, because you live so close to Portland, Oregon....I would ask

about getting a baseline pcr test done soon.....then you will know

when you have achieved a 3-log reduction in your leukemic load.

Many/most of us did not have this test at the time of dx because it

was not available then. OHSU can send your doctor a kit for the blood

sample and instructions...then the sample is returned to Portland for

the testing.

It is possible that Stanford is also doing pct testing now but I am

not sure. Where ever you have the initial test, you need to keep

testing there.......because the labs all test differently and you can

only compare tests from the same lab.

Are you seeing an oncologist at Stanford or UCSF? or just a local

oncologist?

You don't say how high your platelets are.....but sometimes people

are using a 2nd drug (anagrelide ?sp) to bring them down.

Do you know if your oncologist considers you to be in chronic phase

cml? High basophils and (maybe) eso's factor into this determination.

Hope this gives you some ideas.

C.

from Eugene, Oregon....treated at OHSU