Teleconference - Questions

[Guest guest]

Q:

If a patient responds well (CCR in 6 months and MMR at 12 months),

what is the risk of developing a mutation later on?

A:

Maintaining a CCR for a couple of years is what is important. The

risk of developing a mutation is really low.

Q:

How often should BMB's be done and how does the blood serum testing

work?

A:

He doesn't do blood level monitoring unless there's a reason to do

it, such as loss of response or severe toxicity. The frequency of

doing BMB's is diminishing more and more. He's not at the point

where he's willing to do stop doing them all together but he is

heading in that direction....perhaps after a person has been very

stable after 5 years.

Q:

Is there any research being done to investigate if Gleevec is

effecting hormones (particularly female hormones)? (this was actually

my question

A:

He doesn't know of any research being done but also says that he

isn't seeing a lot of patients complaining about hormonal issues (I

guess he doesn't read our list .

Q:

Should we worry about low white counts while on therapy?

A:

He never worries about anyone with a slightly low white count, in

fact he thinks it's a good thing.

Q:

Is there something we can do to increase really low white blood

counts.

A:

The neutrophils are more important than the white count. You want

your neutrophils ideally to be over 1000. A white cell booster is an

option to use if someone has really low neutrophils so that the

patient can remain on Gleevec.

Q:

If someone is doing really well (3 log reduction) but not PCRU, is it

necessary to consider any of the newer drugs and how many years off

do you see a cure?

A:

If someone is in CCR, the risk of relapse is so low that he doesn't

recommend any changes to therapy at all. Someone with a 3 log

reduction is in an even better position so no, there is no reason to

change therapy just to get to PCRU. A cure in 5-10 years would be

really nice.

Q:

Why is all the data measured using cytogenetic responses rather than

molecular responses?

A:

In the old days of Interferon, only 14% of patients reached CCR.

Molecular monitoring is fairly new technology but in the future he

does see molecular monitoring (PCR's) as being the focus.

Q:

What is the relationship between CML and GIST.

A:

There is no relationship between the two other than to say that

Gleevec works for both.

Q:

Is there any research to indicate that sperm is effected by Gleevec?

A:

The experience is limited to about 50-100 men who have fathered

children on Gleevec so we need to be cautious about drawing any

conclusions with such a small group but there has been no evidence to

suggest that Gleevec causes any problems for men fathering children.

Taking a woman with CML through a pregnancy is tricky but it is

possible.

Q:

A woman asked if taking Airborn could have stimulated her bone marrow

to raise her PCR because her PCR went up slightly after she took it.

A:

There is a natural variation with PCR's. One rise in a PCR isn't

really too concerning, it's the trend that matters.

Q:

Why would someone want cytogenetic testing now if they are doing well?

A:

It's important to confirm CCR and that can only be done without a

doubt with a BMB. It's also important to know where a particular

person's PCR is when it corresponds to their CCR from a BMB so he can

say without a doubt that XX result from a PCR corresponds to a CCR in

that particular patient.

Q:

Is there a connection with Gleevec and neuropathy.

A:

There have been very few reports of neuropathy on Gleevec but it has

happened.

[Guest guest]

Thank you for posting this information.

I have to be honest and tell you that I had addressed the hormone issues so

many times on the list that I often wanted to address the concerns with Dr

Druker but was worried about wasting his time.

Someone else convinced me that I should send the information to Dr Druker

regarding myself and the other women on the list hat have had issues over

the past years.

I had e-mailed Dr Druker years ago so I was confident he would respond. I

was very surprised that he didn't.

That was almost 2 months ago.

As for the airborne question.not sure if anyone ever noticed but if you read

the label it has Echinacea in it.

Echinacea stimulates the immune system and can increases our white cell

count.

A personal friend of mine almost killed herself taking Echinacea and she too

has Leukemia but failed to tell the doctor she was taking Echinacea.

ez