I have a friend who has been on a trial and was on the ibrutnib
He has had a partial response and it is keeping his blood levels under control he is well and it is working.
Yesterday he was told he is being taken of the trial because America have said he has not achieved a complete response.... .......hold on this is not a game this is working but because it has not achieved 100% he can't have it!!!!!!!
This is bullshit how can this be ? who the hell do these people think they are ?
I fundraise for research and then to find out drugs are working and then people are told you can't have them is just not on.
Do you have a clinical trial number? I'm not aware of a CLL trial at Oxford. It would help to know exactly what the criteria are for patients. Often there is a continuation program for patients, but not always.
The only trial with Ibrutinib I can find at Oxford is:-
LymphomaNon-Hodgkin lymphoma
Status:Open
This trial is looking at a drug called ibrutinib for a type of non Hodgkin lymphoma called diffuse large B cell lymphoma (DLBCL). It is for people who have a particular type of DLBCL and who haven’t had any other treatment for their lymphoma.
That's the only trial I could find. It is now clear that ibrutinib works OK for one type of DLBCL, ABC type, but works very poorly for GCB type... so perhaps this is the reason the patient is being withdrawn... I don't know...
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Two complete opposite opinions
Change of treatment from ibrutanib to Venetoclax. Progression of CLL?
Richter Transformation - Update
Ibrutinib Trial 
