UK CLL Forum, UKCLLFORUM

BTK Inhibitors

Topic Made On: Apr 03, 2013 10:09am
Roger

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Hi

I am being offered a trail of one these new BTK Inhibitors, like GA101.

Is there anyone already on such a trial? Any other advise thatcan be given?

Thanks




Replied On: Apr 12, 2013 08:04am
Robert Cork

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Roger

I don't know a lot about the BTK Inhibitors except that they are the next generation of treatments for CLL. Clinical trails so far seem to be placing them as a 'wonder drug' for the various genetic variations of CLL.

I have just finished Bendamustine + Rituxan, so in 18 months (approx) time when I relapse, I plan to go down this route.

Best I can help you with.



Replied On: Jun 09, 2013 09:49pm
Bern

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Robert,
What tests did you have after finishing your BR treatment,also did you have a FISH test before this treatment.



Replied On: Jun 10, 2013 07:18am
Robert Cork

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Bern

Yes, I always have the standard FISH panel completed prior to treatment, but no mutational status(as this does not change). This time around we also included NOTCH 1 and SF3B1 because I have a Trisomy 12.

After completing BR todate I have just had the standard blood panels and a CT scan to stage me. No bone marrow tests as this is not going to tells us anything that we don't know.

Currently repeating CD4 tests, awaiting for the count to rise to 250 such that I can stop the pentamadine nebulisers (last result was 180).

Robert



Replied On: Jun 22, 2013 09:23pm
Bern

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Posts: 9
Robert,
I have recently finished FCR and next on the agenda is a CT scan with contrast of neck,chest,stomach and pelvis.I am concerned about the potential risks of the ionising radiation ( 270 times that of a standard X Ray) How did you view this? I have not had any Bone Marrow checks. I recently found out that I have 22% p53 deletion that was present at start of FCR. I was diagnosed 7 years ago with Trisomy 12 and low CD38.The FCR shifted all of the lymph nodes around the ears and jawline apart from one small one either side of the lower neck. I am wondering what treatment would come next in view of the 22% p53 deletion.My bloods are ok. I would appreciate your views. Many thanks,Bern



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