It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions.
Initially, my white blood counts roared up as the lymph nodes were being cleared. This coincided with my lung fluid getting a lot worse so that I was hospitalised as I was quite ill just before Christmas. They put in a permanent drain into my right lung and I had twice weekly drainages until three months later, no more fluid could be drained and the tube was removed. I had lost a stone in weight.
Regular blood tests have shown my white blood count eventually coming down and it continues to do so. From a high of 198 in December my lymphocytes have come down to 8.3. I feel so much better than I did in December and am able to get around more. I have a residue of fluid in my right lung which makes me breathless on slight exertion but the respiratory team at my Hereford hospital have signed me off. A chest x-ray shows that my lung fluid is getting less without interventions. Dr Schuh once said that she thought Ibrutinib could help to reduce my effusions. Let's hope this continues.
I have no doubts that Ibrutinib is a "wonder drug" and I know how lucky I am to be given it.
Onwards and upwards.
David - Hereford - age 76