Having been called back to see my consultant for what I thought was a routine check up, was caught off guard to be told that I could not continue with the trial. There should have been a review of the genetics test before starting as it has shown I am P53.
I am in a state of shock now, not quite sure what the think or do with myself.
Written by
KAS8
To view profiles and participate in discussions please or .
Oh bless you, that must have been a shock. How on earth was such an important point overlooked? So sorry Kas, you must feel very up in the air. Were you given any idea as to what's next?
He was most apologetic but the treatment is the same less to rituximab for 6 months in which time my sister will be tested to see if she is a suitable donor (1 in 3 chance) and then I will have a bone marrow transplant.
Sorry to hear that I did wonder how you were on a trail. But be positive ibrutininis a fantastic drug and after that you will have r to fall back on which is standard treatment plus there are new trails coming out of China which look good
Thank you. P53 wasn't known till after i started which is a blunder by the medics. I have the chance, of course, of getting clear of CLL through the bone marrow transplant albeit it a long journey.
I will remain on ibruitinib but will ask about the other. Didn't have the mental capacity to think of questions at the time but I will be asking on my next visit in a couple of weeks
I'm so sorry you've had so much to deal with in a short time since diagnosis. I hope your sister is a match and everything goes well for you from now on xx
KAS8, how very unnerving for you. I wonder why they didn't know that information upfront? Did they tell you what will happen now as far as treatment is concerned for you?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.