My improvement is truly amazing. My blood tests at 10 months and 12 months on Ibrutinib showed ALL counts in normal range. As far as my CLL is concerned, I feel very well. Am I in progression free survival ?
I still have a side issue of bilateral pleural effusions which continue to make me breathless on activity, but I can live with this and at 76, I am not going to be running around like I used to. Sadly, my tennis days are probably over due to my breathlessness, but I still go down to socialise with my tennis friends and they remark how well I look.
I feel angry that the clinicians and doctors will be treating patients with one hand tied behind their backs when Ibrutinib is withdrawn from the Cancer Drugs Fund list in a few weeks. It is such a successful drug and it is sad that it will no longer be offered to some patients here in the UK. I signed Dr Schuh's petition and have written to my MP.