Not been here for a while as nothing really to report. Husband is still on the ACP-196 trial and has just come up to his 31st monthly cycle. He had a bone marrow biopsy two weeks ago and went for his 3-monthly checkup last Monday. The good news is he is in full remission. At he moment he has been told he will probably be kept on the tablets indefinitely, but we will know more after the meeting with doctors and the pharmaceutical company in the next few months. Will let you know of the outcome of that soon. In the meantime we are just happy with the outcome of this trial and can't thank Professor Devereux and his team at Kings College Hospital enough.
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babswade
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Yes it is. He has not really had any side effects from the drug at all. He had all the symptoms of CLL, e.g. tiredness, fatigue, aches and bruising, but they have gradually subsided over the 30 months of the trial. He still bruises easily but they are not worried about this as it is not a regular thing. It's been a long journey but we got there in the end.
I am in the middle of cycle 33 of a phase 1, ACP-196 drug trial. My medical consent form for the trial only takes me through to cycle 36. When I visit MD Anderson this month, I will ask about post cycle 36. My expectations are that I will be kept on ACP-196 with dreaded CT scans every 6 months. I have not had any adverse side effects.
Our contract only goes to 36 months as well but the docs seem to think the company will carry the tablets on with similar 6 month checkouts and scans. All worth it to keep the other half well. Hope you also continue to keep well.
Further to my last post about 10 months ago. Everything still OK. Husband is still on the trial drug but only has to go to King's every 6 months now. No further information as to how long this will last for, hopefully may get more information when we go back to King's in July. Will try to remember to update you all then.
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Update
CLL confused
Skin problems at the end of a clinical trial
Stopping Ibrutinib for surgery
