MSKCC/Cheryl

[Guest guest]

Hi Cheryl,

Thanks for your thoughts. My qpcr has been going down with every test.

There is no concern that I am not PCRU because it continues to be lower each

time so far. I hope that continues. Do you know how much your dr. relies on

the qpcr? My dr. at Sloan says she barely looks at it and never makes any

treatment decisions based on it. Her reason is that even if someone is PCRU we

know there are still cells present, we know that if they stop Gleevec the ph+

cells will return, so they are not really ever without any ph+ cells. It's

just another test. I'm sorry to hear how expensive it is for you to have it.

Will your new trial cover the cost of the qpcr for you in Canada?

in NY

400 mg.

dx. 1/04

Zero Club #756

[Guest guest]

Hello ,

Glad to know that your qPCR is going down with every test. It is more

than likely that it will continue this way. I would guess that your

doctor relies more on the cytogenetics from your BMB every three

months than the results of the qPCR. In you case it would probably

be interesting to compare your quarterly cytogenetics with the

results of your qpcr, I and I am sure others would like to know what

they were. I am not aware of many places who take such regular BMB

and PCR's. Perhaps if you feel like it and have the data we could

have a discussion. I am assuming that when you have a BMB you not

only get your cytogentics, but also qPCR on the same speciment.

Would be nice to see if there is any correlation, particularly since

you are MMR.

You are right, we cannot be complacent, once we stop IM, the disease

will continue on with its progression. IM is just a way of stopping

the clock at the moment. However, while the clock is stopped, other

drugs are being researched that just might offer us the

elusive " cure " and for that we are all very grateful.

The cost of my qpcrs are covered here under our medical system.

However, I was worried about the quality and experience much the same

that you reported so I chose to go to MSKCC as a follow up. I am an

American, and members of my family have been quite successfully

treated at MSKCC. So, it was natural for me to go there. I would

hate to think the money is not being well spent and that the

informaiton I am getting is less than optimal.

On the other hand, I am alsways still " homesick " for NYC, Cape Code

and Martha's Vineyard as these are all places that I have so many

special memories of since my childhood. So, why not take a bad

situation (such as getting CML) and turn it into a good way of re-

connecting with all the things I really love to do? Makes the

experience so much more comforting for me. I am very satisfied with

my results from MSKCC, I am concerend though to see that the

techniques or lab results might just be questionable.

I might call them myself since it costs so much. Maybe they can

explain the situation to me.

I hope to see you this summer when I go visit my friend Margaret.

Cheers,

Cheryl-Anne

> Hi Cheryl,

>

> Thanks for your thoughts. My qpcr has been going down with every

test.

> There is no concern that I am not PCRU because it continues to be

lower each

> time so far. I hope that continues. Do you know how much your

dr. relies on

> the qpcr? My dr. at Sloan says she barely looks at it and never

makes any

> treatment decisions based on it. Her reason is that even if

someone is PCRU we

> know there are still cells present, we know that if they stop

Gleevec the ph+

> cells will return, so they are not really ever without any ph+

cells. It's

> just another test. I'm sorry to hear how expensive it is for you

to have it.

> Will your new trial cover the cost of the qpcr for you in Canada?

>

> in NY

> 400 mg.

> dx. 1/04

> Zero Club #756

>

>

>