CLL Support Association
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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

6 Replies

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


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


The only trial with Ibrutinib I can find at Oxford is:-

LymphomaNon-Hodgkin lymphoma


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 so perhaps this is the reason the patient is being withdrawn...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

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


Please try to be thankful for the partial response.

Many of these medications are known up-front not to be curative -- as in making the illness go away and stay away. Such is the same in many other areas of medicine. When renal dialysis was introduced in the 1960s it was very expensive, and it was offered preferentially to the mothers of small children, so that motherly parenting could be continued for at least a few more years. Now, fifty years later, the price has dropped and that treatment can be offered to many, many more patients.

The medicine you are talking about currently is very expensive, and, on an experimental basis, it is being offered to a NEW specific group of patients on a trial basis. Things are moving more rapidly now, so perhaps it will be but five or ten year before the production and delivery price have dropped, but there never has been any promise thus far that every patient who could use the medicine would get it right away and for a lifetime. Perhaps another treatment approach can help your friend with at least a further partial response after your friend comes off of the current clinical trial program. A clinical trial is just what it says: a clinical TRIAL; the focus is on research potentially to help many, not on treatment specifically to help one.

Please try to be thankful that something good has occurred so far.


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