Introduction/Question

[Guest guest]

Hi Everyone,

I have been reading these posts for a few months now and this is my

first posting. My husband, at age 36, was diagnosed with CML in

October of 2006. He was on 400 Mg of Gleevec for just over a year and

then his numbers started going up and he had to increase his dosage to

800mg. Since that time he has yet to reach molecular remission. His

last FISH test showed 1.25.

After reading recent posts, it has come to my attention that most of

you seem to be getting follow-up BMB after the initial BMB. My question

is... Is this the norm? My husband goes back to his onc every 3 months

for CBC and FISH test and that is it. Is this enough to track his

progress? Should he be questioning his Dr. about further testing,

especially since he is coming up on his 2 year anniversary and has not

reached molecular remission yet? (By the way is molecular remission

referred to as PCRU? I am still trying to figure out all these

acronyms!!!)

I am not much of a poster, but I am imspired by all of you and would

really appreciate your input/advice.

Thank you.

Carol

[Guest guest]

Hi Carol,

Most of the CML experts will continue to do BMB's every 6 months

until a CCR is confirmed. CCR is a Complete Cytogenetic Response

which means that the cytogenetic test they do on the marrow after a

BMB, is completely zero. They usually look at 20 cells when they do

this test so if all 20 are healthy, the patient is confirmed to have

a CCR.

Once a CCR is confirmed, the schedule for BMB's is quite

controversial. Some doctors will continue to do them once a year,

other's once every 2 years and some not at all.

A molecular response is measured using a PCR test. A complete

molecular response is also known as PCRU (PCR Undetectable) meaning

that no leukemic cells were found in the PCR but this is very

misleading because PCR tests are not standardized. This means that

they all use different methods and different sensitivities. You

could be undetectable on one test at one lab and be very detectable

at another. Several patients have had this happen.

The goal in CML therapy that many doctors have is for the patient to

achieve a 3 log reduction. This is considered to be a Major

Molecular Response (MMR). Dr. Druker has recently said that he is

happy if the person maintains a solid CCR so for him a MMR isn't as

important as it is for other doctors.

Most doctors have abandoned FISH testing because of its limited

usefulness. Your husband should be getting a PCR every 3 months

instead and if he hasn't had a BMB to confirm his CCR, he should have

that as well. If he's not in CCR, he should continue to have BMB's

quite regularly (probably every 6 months).

Take care,

Tracey

>

> Hi Everyone,

> I have been reading these posts for a few months now and this is my

> first posting. My husband, at age 36, was diagnosed with CML in

> October of 2006. He was on 400 Mg of Gleevec for just over a year

and

> then his numbers started going up and he had to increase his dosage

to

> 800mg. Since that time he has yet to reach molecular remission.

His

> last FISH test showed 1.25.

> After reading recent posts, it has come to my attention that most

of

> you seem to be getting follow-up BMB after the initial BMB. My

question

> is... Is this the norm? My husband goes back to his onc every 3

months

> for CBC and FISH test and that is it. Is this enough to track his

> progress? Should he be questioning his Dr. about further testing,

> especially since he is coming up on his 2 year anniversary and has

not

> reached molecular remission yet? (By the way is molecular remission

> referred to as PCRU? I am still trying to figure out all these

> acronyms!!!)

> I am not much of a poster, but I am imspired by all of you and

would

> really appreciate your input/advice.

> Thank you.

> Carol

>