A female patient aged 35 who 7 years after diagnosis still has a BCR-ABL of 0.011 . Slipped up to 0.033 but came back down again without changing anything. Her facial oedema on the 200mg bd of imatinib isn’t too bad with H1 and H2 blockers, but she had quite a marked facial burning with nilotinib (although I didn’t try H1 and H2 blockers at that stage) and small pleural and abdominal effusions with dasatinib, along with a change of taste.
Would there be an indication to have at least tissue type her siblings or am I worrying unnecessarily?

Looking at her PCR chart, her BCR-ABL values haven’t really fallen over the past 2 years. This means it is unlikely she will be a candidate for an attempt at TFR any time soon on her current therapy. That is not too unusual since she is only 7 years from diagnosis. This might be a problem if she is very keen to get off her TKI therapy soon. In that case it might be justified to retry nilotinib under H1 and H2 blockade if she is willing.
If she is not highly motivated to pursue TFR then you don’t really have a problem, unless she loses MMR. The risk of disease progression is extremely low, as long as she stays on a TKI.
Regarding the need to get prepared for an allograft just in case - I wouldn’t do that unless she lost MMR, because the chances of needing to go to an allograft are still less than 5%


ORIGINAL CASE:
A female patient aged 35 who 7 years after diagnosis still has a BCR-ABL of 0.011 . Slipped up to 0.033 but came back down again without changing anything. Her facial oedema on the 200mg bd of imatinib isn’t too bad with H1 and H2 blockers, but she had quite a marked facial burning with nilotinib (although I didn’t try H1 and H2 blockers at that stage) and small pleural and abdominal effusions with dasatinib, along with a change of taste.
Would there be an indication to have at least tissue type her siblings or am I worrying unnecessarily?

I tend to be a little put off by the topic "poor responders". Tim alludes to this and I could not agree more with him. Transplant is not in the cards for this patient. They have a good response, albeit not good enough to consider TFR, and remaining on TKI will likely keep them out of any trouble. They do have side effects from the treatment however and I am not sure that any drug switch will necessarily help here.
Although TFR is a goal we would all like to see, it will not be a reality for the majority of patients. For the majority of these individuals, survival equivalent to age matched controls while on therapy is attainable and considering this to be a failure is minimizing the efficacy of the therapy.

ORIGINAL CASE:
A female patient aged 35 who 7 years after diagnosis still has a BCR-ABL of 0.011 . Slipped up to 0.033 but came back down again without changing anything. Her facial oedema on the 200mg bd of imatinib isn’t too bad with H1 and H2 blockers, but she had quite a marked facial burning with nilotinib (although I didn’t try H1 and H2 blockers at that stage) and small pleural and abdominal effusions with dasatinib, along with a change of taste.
Would there be an indication to have at least tissue type her siblings or am I worrying unnecessarily?