What is happening

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.

Has anyone else experienced the same ?

The flyer

The trial is being done at OXFORD

[Cllcanada Top Poster CURE Hero]

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.

~chris

[Hidden in reply to Cllcanada]

Chris i will try and find out but how can they take away something that is working

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Being taken off the trial and being taken off the drug, may be two separate matters... just not enough information to really comment...

[Mijoed]

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.

[Cllcanada Top Poster CURE Hero in reply to Mijoed]

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 so perhaps this is the reason the patient is being withdrawn...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...

oncologynurseadvisor.com/we...

genome.gov/Multimedia/Slide...

I only know this stuff because I'm an RT-DLBCL type... a third subtype, for which ibrutinib is not yet tested on...