Part Two of the Teleconference Summary---the Q&A period

[Guest guest]

I had to step out for a few minutes during the first couple of

questions but my daughter who just turned 15 this week, took the

phone and wrote notes for me while I was out. I can't attest to the

accuracy of what she wrote but I can say that it was funny to see

some of the things she spelled (like Pisatinib which I assumed was

Dasatinib, Hydroxoreyr which I'm sure was supposed to be Hydroxyurea

and bsrable which I figure probably meant bcr/abl).

She said the first question was from someone who had leg cramps, put

ice on them and wanted to know why the muscle hurt more when they

moved it again after. He said that muscle cramps are a bigger

problem with Imatinib than with Dasatinib. He suggested Tonic water

which has quinine it in (although my daughter wrote that it

had " clynide " in it…lol). She said he also mentioned that we should

ensure our electrolytes are in the normal range especially calcium,

potassium, and magnesium and if need be, supplements can be used. He

said that heat would probably work better than ice for cramping.

The next question my daughter heard was from someone asking if we can

stop taking Gleevec at any given moment. He said that it was a good

question and didn't have a simple answer. He said that the majority

of people who have been on the drug for years with deep responses and

with no evidence of disease, most who have stopped the drug, will

relapse within a year so he said it's important to continue taking

the drug if you can tolerate it and are getting a good response from

it.

He also talked about pregnancy and said that he's aware of 120

reported cases of babies being born to mothers who exposed their

babies to Imatinib. About 50% were normal babies (which leads me to

believe that 50% were not completely normal?). He mentioned that he,

himself, just had a patient deliver a perfectly healthy baby so it

is possible to have a healthy baby but since there are risks, he

can't say that Imatinib is safe during pregnancy. Patients need to

weigh the risks with the benefits when deciding to have a baby. He

also said that people can discontinue taking Imatinib during

pregnancy and take Interferon which is safe and he said that

Hydroxyurea is safe after the first trimester.

At this point, I returned to the phone so the next notes are my own

which I take full responsibility for.

Someone asked at what point would a BMT be a reasonable treatment to

consider. Dr. Shah said that in the old days, BMT's were the best

treatment for those who qualified but things have changed

dramatically with Gleevec and the second generation kinase

inhibitors. He said that today, he would only recommend a BMT to

those who were under 20 years old and had a matched sibling donor or

to those who had gone into blast crisis since remissions are

typically short lived for patients who have been in blast crisis.

For blast crisis, he suggested taking either Gleevec of one of the

2nd generation TKI's to get the patient back into chronic phase then

proceed with the BMT. He also mentioned that for those who fail

Gleevec, going to one of the 2nd generation drugs is a reasonable

option over BMT but if the patient fails the 2nd generation drug

within 6-12 months then a BMT would be a reasonable option to

consider.

The next question was how do kinase domain mutations get picked up.

He said that if there's evidence that the patient is losing their

response such as an increasing white count, an increase in a

cytogenetic test result or a " convincing " rise in PCR values, then

the patient should undergo mutation testing. It can be done with a

plain blood sample and he named Genzyme as one lab that is doing

mutations testing now in the US. The reason it's important to know

if you have a mutation is because some mutations respond better to

some drugs than others so you need to know which drug would be better

suited to your particular mutation. He also mentioned that his

personal belief is that mutations are present in some patients before

they begin therapy. Then after some time, he thinks that they

increase in number because they haven`t been controlled from the

beginning.

The next question was weather or not a person on 400mg of Gleevec can

develop cirrhosis of the liver after some time. He said that he's

never heard of it although he has seen a small number of patients

develop drug induced hepatitis which forces them to stop taking

Gleevec.

The next question was about how often we should be monitored. He

said that monitoring is very important to pick up a loss of response

early on. He said that only 5% of patients are PCRU after one year

so we shouldn't be too worried if we're not one of them. As time

goes on, people get deeper and deeper responses which emphasizes the

need to continue with therapy. He said that most doctors feel that a

5-10 fold increase in PCR values should be considered significant if

confirmed in 2 consecutive tests in which case, mutations testing

should be done and possibly a change in treatment.

He discussed the controversy about BMB monitoring. He said that it's

important to have a BMB on diagnosis and every 6 months after that

but once a patient reaches CCR, there's no consensus on what to do.

Some believe that it's a good idea to do BMB's every 12-18 months

after CCR to check for chromosomal abnormalities in Ph negative cells

since some people have been known to develop MDS (myelodysplastic

syndrome) while being in CCR but other doctors don't think it's

necessary to do BMB's after CCR.

The last question was weather or not we should consider a specific

diet to help us. He said that while many of us would like to believe

that what we eat can have an impact on our disease, the truth is that

there is no evidence to suggest that any particular diet will either

help or hurt the disease. Of course common sense is always a good

thing for cardiovascular health etc. He did mention that there are

various herbs and some foods that can interfere with the absorption

of drugs so we need to be careful of that. He mentioned St. 's

Wort and grapefruit specifically and said we should avoid both. He

also said that herbs should be thought of as medications and not

necessarily safe or without risk.

And that was it for the Q & A period. I hope that some of you found it

interesting.

Tracey