New to your group - dh experiencing Gleevec intolerance

[Guest guest]

Hi all... I'm Sherry and my dh (age 37) was dx just 4 months ago

with CML - ph+, accelerated phase. He started the " wonder drug " and

has not done well with neutropenia and thrombocytopenia. All the

same he has dropped form 88% to 28% leukemic cells present in FISH.

His second PCR was drawn yesterday.

I'm just wondering if anyone has had the level of intolerance he is

experiencing with Gleevec and how low the docs actually dropped the

dosage? He started on 600mg, and within 2 weeks platelets were at 15

and neutros at 0.5. Once he recovered, dosage was dropped to 400mg

and the same thing happened after 18 days. During his last drug

holiday, with plans for one more shot at 300mgs, my husband asked

the direct question if 300 causes the same response, can we try 200

and the doc said NO. 200mg would not have an effect on the cancer,

so we would then have to discuss moving forward with the bmt (we

have a related doner, hooray!). This week, Lorne had to stall the

treatment again because of thrombocytopenia and doc wants him to try

200mg once his cbc has recovered. ??????? So which is it - I don't

think we are getting all of the info that is being discussed between

all of the medical players. They want to try anf build up his

tolerance to the drug.

I have been doing some research and so far have not found one

reference to a dosage of less than 300mg. Not only that, but all I

have read indicates that in the accelerated phase, this course of

action is not recommended at all. I need to know the rationale

behind this new plan and my dh is happy to just follow doctors

orders, no questions asked. I need fuel for my fire - so to speak. I

can't make him understand that he should be informed of any varying

opinions among the medical team and then WE can make an informed

decision.

Please email me if you have any info to share... thanks

Sherry