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Decision time

To Darley

Further to my comments in February regarding dasatinib. I came of the tablets for 7 weeks and it was wonderful to feel so normal and healthy. In March I saw my doctor and was given 3 options 1. To stay on 80mg (which I declined as it hadn't worked) 2. Go down to 50mg or 3. Come off the tablets and be monitored monthly.  I could not get any help on making this decision so eventually decided to try the 50mg.  One month later the plural effusions were back along with the terrible breathlessness. I rang the hospital and was told to stop taking the tablets. Today I had an appointment at the hospital and as my blood counts were zero they made  the decision to stop dasatinib and for me now to be monitored regularly.  This is not the decision I wanted to make as I feel safer taking something for my CML. So I will just have to keep my fingers crossed.  The reason I'm writing is to know if anyone else has had the same problems with plural effusions as I have and what decision they made.

judith

 

   

Judith.... have you been offered another TKI? One that does not have PE as a side effect such as bosutinib, nilotinib or ponatinib

Sandy

 

Judith, Not sure how I missed this post.   I'm sorry if you think you were being ignored.  

That's a really difficult position to be in and I can absolutely appreciate your concern.

Sandy's question is a most valid one.