Re: Re:XL228/side effects

[Guest guest]

Hi , this is the first time I have had mutation testing done. Dr. Talpaz

said I have V299L and 351, he said they are both responsible for Sprycel

failure. Also said not to worry about them. As far as what he has going for

T3151, I do not know, but will ask him if I do not see him tomorrow, I will see

what his trial nurse knows, then get back to you.

Here's another odd side effect. I didn't realize it until last night, but I

have no had peanut butter since before the first infusion! May not be strange

to most folks, but since I was about 2 I have survived on peanut butter. (that

would be 76 yr. diet!) A day never goes by that I don't eat it, on bread, on

crackers, on celery, on apples, on anything, I just love peanut butter. It got

me through 6 pregnancies, it was easier to have pb & j then smell food cooking.

And now, since last Tues. and my first infusion I have not even given it a

single thought. But to be honest, I don't even think of food, and that is the

second phenomenal

thing to happen to me, as they say, some people eat to live, and I live to

eat!!

I'll be in touch, thanks for the good wishes, love, Bobby

Cogan <ncogan@...> wrote:

Hi Bobby,

I have a couple questions for you. I assume you were tested for mutations?

do you have any that caused you to relapse? I have a friend at OHSU who is

losing her remission and has been found to have the T-351I mutation (If I

wrote it correctly)....do you know if you drug is being used for that one?

or if Dr. T has some trials going for that mutation? it is the stubborn one

which the regular drugs (Gleevec, Sprycel and Tasigna are not working on).

Her doc is Dr. Mauro, who will be advising her after her next bmb.......but

if there is something at Ann Arbor maybe she can chat with you about

getting Rx there.

Good luck to you......hope this infusion is without a hitch.

C.