Re: Digest Number 396 - Cheryl Anne

[Guest guest]

Hi Cheryl-Anne,

Thanks for writing back. I know that everyone must feel this way when all the

little tasks we have to do to keep healthy keeps CML on the front burner of our

minds. I, too, think that when we have opportunities to talk with a doc or at a

forum, etc., that questions about a cure should be explored. Unfortunately,

though I have an excellent doc at this trial, his final question before I was

given my first dose, was whether or not I would be open to a BMT. I'm 60 years

old and even with all the improvements in the morbidity rate of BMTs, I would

never consider it although I didn't tell him that. We were standing in the BMT

area of the hospital at the time so I was politic rather than honest.

Have a wonderful time at Niagra.

Re: [ -, Tracey, Cheryl and Others Interested

>

>

> 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.