So after three years and four TKIs the drugs haven’t worked for me unfortunately so I am now scheduled to have a stem cell transplant in December. I’ve read all the literature and so have an idea what to expect, but wondered if there was anyone on here who has had one? If so, what’s the one piece of advice that you would give?
EDIT: Since posting I have discovered this video which has been a helpful insight into what I might expect to go through both physically and emotionally
I do not have advice regarding that but I am sure a few of the people who have had one will chime in. I think Sandy has a link to her journey for a read. I was wondering what your BCR/ABL numbers are, did you have mutation test (I'm sure you have), and what is your lowest BCR/ABL achieved? I may have missed some of your earlier posts so I will take a look. Prayers for your upcoming journey. Keep us posted.
BCR-ABL only got below 10% (IS) once but my main challenge has been adverse effects on my liver. Have achieved stability there with the aid of steroids but BCR-ABL back up over 36% (IS). Still waiting on latest gene mutation screening result but not expecting anything different and am happy that my consultant knows her stuff as she’s a recognised authority on CML. In fact she has a number of videos on this site.
