CML FAQ

[Guest guest]

This is an FAQ list that is found in the files section of our group

but I thought it might be helpful if I posted it seeing as there have

been several newbies join lately.

Tracey

How does Gleevec work?

Gleevec is an abl tyrosine kinase inhibitor that also inhibits PDGF

and c-kit enzymes. The BCR/ABL oncogene in CML codes for an abnormal

protein tyrosine kinase enzyme called bcr/abl. This abnormal enzyme

uses ATP to phosphorylate downstream effector enzymes, which then

stimulate the myeloid cells to grow out of control. Gleevec works by

blocking the ATP from binding to the bcr/abl enzyme which in turn

prevents phosphorylation thus inactivating the proliferation of cells.

What is the normal dosage for Gleevec?

According to the Novartis prescribing information, the standard dose

for a newly diagnosed patient in chronic phase is 400mg. For

Accelerated and blast phase patients, the standard dose is 600mg.

New trials are exploring the benefit of having chronic phase, newly

diagnosed patients on 800mg doses.

When is the best time to take Gleevec?

The best time to take Gleevec is with your biggest meal and with a

large glass of water. Preferably ¾ of the way through the meal.

Avoid lying down for 2 hours after taking Gleevec to avoid acid

reflux.

Are there any food or drug interactions with Gleevec that I should

know about?

Patients should avoid eating grapefruit or drinking grapefruit

juice. It is also advised to avoid using Tylenol and other drugs

that compete with Gleevec for liver metabolism. There are a number

of websites available to check for contraindications including:

http://www.drugs.com/

http://health.discovery.com/encyclopedias/checker/checker.jsp?

jspLetter=A

I'd like to take some natural herbs and/or vitamins but worry about

interactions, where can I get more information on this?

Memorial Slone Kettering Cancer Center has a great website that you

can refer to. St. 's Wort is known to be contraindicated with

Gleevec and patients have also been told to avoid Echinacea.

http://www.mskcc.org/mskcc/html/11570.cfm

How will I know if Gleevec is working?

The only " fool proof " way of knowing if Gleevec is working, is to

have a cytogenetic analysis from a BMB/BMA sample to check for the

Philadelphia chromosome. Regular CBC's will give you a good picture

of what's happening but changes in your marrow could happen long

before they show up on a CBC. Also, you could have normal blood

counts but still be 100% ph+.

What are the different levels of responses?

The first level of response is a haematological response. This is

when your blood counts return to normal. The second level of

response is a cytogenetic response. This is when the number of

Philadelphia chromosomes is reduced. If the number of ph+ cells is

above 35% but below 95% it is considered a cytogenetic response. If

the number of ph+ cells is between 5% and 35% then it is considered a

major cytogenetic response (MCR). If the number of ph+ cells is 0%

it is considered a complete cytogenetic response (CCR). A molecular

response can only be determined from a PCR test.

How long will I have to take Gleevec?

Current information indicates that patients will have to remain on

Gleevec for the rest of their lives. Anecdotal evidence from those

who have voluntarily (and against their doctors recommendations)

stopped taking Gleevec, have relapsed and some even became resistant

when trying to restart Gleevec. Do not stop taking Gleevec without

consulting your doctor and understanding the risks.

What do I do if Gleevec doesn't work or stops working?

There are several drugs in clinical trials for patients who are

resistant or intolerant to Gleevec. These drugs are showing lots of

promise for these patients and research is always on going. Check

out the links site for more information on clinical trials.

If I've had a complete cytogenetic or molecular response am I cured

or in remission?

The terms " remission " and " cured " aren't really used in CML. Just

because a particular test doesn't show any evidence of the leukemia,

it doesn't mean that there aren't any leukemic cells lurking around.

Infact, there could be as many as a billion leukemic cells still

floating around just waiting for the opportunity to proliferate if

given the opportunity (the cessation of Gleevec). The CML is

considered " controlled " (not cured) if the patient has responded to

the treatment.

What does it mean to be intolerant to Gleevec?

Intolerance can mean a variety of things. It can be used to describe

someone who has had their blood counts drop too low and remain

unstable for a period of time (usually months). This could include

the WBC, RBC and/or platelets. Intolerance can also mean that liver

or kidney function is severely impaired and cannot stabilize or that

the side effects of the drug are too much for the patient to handle.

My WBC is below normal, should I stop taking Gleevec?

The WBC isn't as important as the ANC (absolute neutrophil count).

According to the prescribing information that Novartis puts out,

Gleevec should be stopped only if the patient's ANC falls below 1 for

chronic phase patients then it should be reinstated when the ANC

rebounds to 1.5. For accelerated phase patients, the dosage should

be reduced to 400mg if the ANC drops below 0.5. There are other

ways to deal with neutropenia such as adding a growth factor while

remaining on Gleevec. These options should be discussed with your

doctor.

My Platelets are below normal should I stop taking Gleevec?

According to the Novartis prescribing information, Gleevec should

only be stopped if the patient's platelets drop below 50 for chronic

phase patients and reinstated when it rebounds to 75. For

accelerated phase patients, the dosage should be reduced to 400mg if

the platelets drop below 10.

Besides a CBC are there any other tests I should have?

It is wise to have liver and kidney function tests periodically

because Gleevec can cause hepatoxicity and renal toxicity. It is

also recommended to have your electrolytes checked as Gleevec has

been known to deplete potassium and phosphorus supplies among others.

What can I do about the side effects I have from Gleevec?

There are many possible side effects and many possible treatments for

them. Here is a great resource for dealing with side effects:

http://www.cmlsupport.com/cmlgleevecsideeffectsguide.htm

Where can I get good information on CML? (Links)

General Info:

http://www.cmlsupport.com/

http://cml.tlls.org/CMLApp/Controller

http://www.cancer.ca

http://www.cancer.org

http://www.leukemia-lymphoma.org/hm_lls

http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf

(Gleevec prescribing Information)

Medical Journals and Websites:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? (PubMed)

http://www.hematology.org// (ASH)

http://www.medscape.com/px/urlinfo (Medscape)

http://www.hemonctoday.com/default.asp?article=hothome.asp (Hem/Onc

Today)

http://www.bloodjournal.org/ (Blood Journal)

Clinical Trials:

http://clinicaltrials.gov/

http://www.ctg.queensu.ca/trials/default.html (Canada)

Online Support Groups:

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http://www.newcmldrug.com/Discuss/default.asp

http://www.cmlsupport.org.uk/Templates/DiscussTemplate.aspx?

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