Hi Sharon,
This is obviously quite a complex situation and I am struggling with how to advise you about what your consultant might be thinking, but I will try.
Can you say what the problems you had with imatinib/Glivec were, that caused you to stop taking it? They must have been quite severe and I assume your consultant did not know you had stopped?
If so he might now be suggesting a transplant because he might consider that your disease has progressed and/or you do not want to take oral therapy in the longer term?
OR
It might well be that your response has been sub-optimal and you have not reached the response goals as suggested by the ELNet guidelines.
It would helpful if you could share the following information:
your previous blood count:
*white cells
*platelets
*basophils
any blast cells evident?
and
Your last cytogenetic test result and/or PCR result (before you stopped taking the therapy)
i.e the % of PH+ cells or % BCR/Abl in the marrow
Did you have a major cytogenetic response (MCR)?
If yes, what was the level of that response:
i.e the % of PH+ cell reduction from the level at diagnosis? 20%, 60% or more?
If so how long did that take- 3 mths, 6 mths, 12ths or more?
If yes, did you go on to have a complete cytogenetic response (CCyR)?
i.e. a reduction of less than 1.5% PH+ cells in your marrow?
If yes, how long did that take?
If you had a CCyR (complete cytogenetic response) did you go on to have a molecular response (MR)?
i.e a further drop of BCR/Abl to below 0.1%
If yes, how low did your PCR test result go? 0.1%.... 0.01%..... lower?
Obviously your doctor will wait until your bone marrow test is available before he advises you further. Then you will be able to make a more informed decision about the possibilities open to you.
If your disease has progressed because it has not be adequately controlled by imatinib, then you have options: but it does depend on your next cytogenetic/PCR results.
I hope this is helpful,
Sandy
