to Cheryl and about Cheryl

[Guest guest]

Hi all,

Like Tracey said once before, I don't think all the second guessing on the list

is especially helpful to Cheryl? telling of your experience is fine, but not

questioning the information she has been given. Cheryl has seen the top cml

specialists in Canada....they are the Dr. Druker/Dr. Talpaz of Canada.

They are advising her according to conventional wisdom about cml once it has

reached blast crisis. You can get it to return to 2nd phase chronic, but it is

not considered to be long lasting. She is presently in a good level of

remission, which is where they want her to be before a transplant, for the best

possible outcome. At any time, her cml cells could bolt again and she could be

back in blast crisis, and her chances of a successful transplant outcome would

be seriously compromised.

During my time of having cml, I know at least 2 patients that that happened to.

Carol Hisatomi, a good friend who started a Gleevec trial with me, did

eventually go into blast crisis (she was not dx in blast crisis).....she had

high dose chemotherapy which put her back in chronic phase, they proceeded with

making plans for a transplant at Duke and by the time she got there, she was

back in blast crisis and they could not even attempt the transplant and she

passed away. And I know of a young 12 year old that had the same situation.

So that is the gamble with Cheryl. No one can say for sure IF her remission on

Gleevec will last....and if you wait to see if it doesn't, then it could be TOO

late. Her doctor's can't guarantee her what will happen if she waits.....they

are taking what they think is the safest route, according to what is known about

blast crisis cml. The doctors will not risk her situation getting worse, where

she (statistically) would not survive a transplant. For the individual patient,

it is fine to make the decision to take that chance. This is a standard medical

approach.

For Anita, if you were truely in blast crisis, then your course of being

successful longer term with a TKI, is unusual....but it is not something that

Cheryl can count on happening (because it is not typical). I do have a question

for you about your dx in blast crisis....was this made by a cml specialist, and

what was it based on? You may have been in blast crisis but I don't think your

response has been typical?

The other thing that I think (maybe) favors Cheryl opting for a transplant (her

choice of course) is that her cml has NOT been well understood, it is not

typical, not following the usual patterns...which may make it more difficult to

treat. I do remember an early cml friend who Dr. Druker was treating and he

advised her to have a transplant for exactly that reason....she was not typical

and he could not be certain what would happen in the future. He was not willing

to guess and tell her she would be fine without a transplant.

Because of my medical background (30+ years) I try to look at this from a more

scientific point of view than an emotional one. I think Cheryl needs to keep

questioning the Canadian cml specialists that she is seeing and then make her

own " best " decision.

C.