Re: Re: [cml 2-, Tracey, Cheryl and Others Interested

[Guest guest]

At 07:50 PM 5/12/06 -0400, you wrote:

>Having been an adoptee I know what it's like to keep complaints to

>yourself because, after all, you have it better than a lot of people. I

>will say that a friend who's been through many different treatments for

>CML for many years is finally responding to dasatinib and feels great. He

>says from what he knows of other treatments in preparation that the word

>CURE will be a reality in not too long a time. He's not a doc but knows a

>lot so maybe there are treatments that will push CML over the edge into

>oblivion.

Hi , et al........

I just had my 6 month follow-up with Dr. Druker for BMS. I am glad to hear

that you are feeling good on this drug. I am not so totally sure about

your friend's optimism....yes, there is a lot of research going on......and

they are definitely aiming for a cure, but I am not sure that all the

basics about CML are understood yet, and that is what usually leads to a cure.

At 3 months I was still stuck at my 'forever' 30% (or there abouts) much to

our disappointment. But we had an interesting little discussion about that.

Obviously I don't have a mutation that is the source of the

resistance.....or you would expect to kill off all the non-resistant cells

and then the % of ph+ (resistant) cells would increase over time....which

has not happened. I have been at 30-35% for 3+ years.

Dr. D 'thinks' that the resistance that my 35% stubborn cells have, and the

unknown mechanism for it......could very likely be the resistance that

those who stay at 100% ph+ despite all treatment to date (and who's disease

is stable and does not progress).....and is also the same resistance that

does not allow someone else to get to PCRU (even with a low PCR). They do

not understand why some cells are resistant to the drugs yet (except for

the point mutations).

This is one of the biggest issues he is working on in the lab......so he is

glad to have my extra sample of aspiration to work with....and I am glad to

let him have it. Remember that a real cure will mean that it works for

everyone..............

and that the treatment gets rid of the last CML cell. Right now we know

that even those who are testing PCRU still have CML cells......and that

without the drug, they will relapse and the CML cells will increase. We are

lucky to have intelligent and highly motivated researchers working of all

the issues of CML treatment..........but I am not sure that a cure is in

sight yet???

Dr. D did say that he expects BMS to be approved at that next meeting (not

sure what this group is called???) in June.......and also that they will be

getting the latest data about the different treatment options with

BMS....once a day vs twice a day....what dose, etc. So all this is not too

far away.

My appointment was my 6 months BMS tests........will let you all know if

some of the stubborn CML cells fall when I get results.

C.