Yesterday was exactly 4 weeks since beginning Ibrutinib for my leukaemia. It’s a journey I should have started many months before I did. But previous NHS England guidelines of preventing those having been in remission following chemotherapy for more than 3 years from being treated with this drug saw me, who having been in remission for 3 years 8 months, deteriorated quiet rapidly in the 4 months or so prior to beginning the treatment. Therefore, I was probably more ill than I should have been when I started. So any CLL sufferer reading this please bear that in mind as I give you an update after just those 4 weeks.
Prior to treatment I had received a variety of oral and intravenous treatments, mainly steroids and drugs supporting its use. But approximately 4 weeks prior to treatment, when visiting clinic I was urgently admitted with BP of 76 over 52 which was put down to infection (again lol). 7 days of intravenous ABs saw the problem go. However, my main symptoms remained. Fatigue was causing me to seek my bed, and sleep for 16 to 18 hours a day. I was completely useless. Being disabled as well didn’t help matters. Along with this came sweats that occurred both during the day and the night. After a nap of just 45 minutes the pillows and bed would be wet through, so I took to sleeping on bath sheets, easier to change than the bedding. Another massive problem for me was chronic headaches. There wasn’t a day went by where my head was pounding and my eyes hurt. Other symptoms were the usual swollen glands particularly in the neck and my collar size increase by 2 inches. I also noticed my face ballooned. On top of all this I felt really unwell. Despite these symptoms my bloods were not to bad, certainly not at the stage they were in 2010 when I began FCR.
For some months my consultant said I needed treatment and in May he said there was a trial of Venentoclax and Ibrutinib to be started in August. This was an option I would have taken but it never came off and I believe is still unavailable. Before taking Ibrutinib I read the sheets of horrific possible side effects this drug ‘could’ cause, but I had to go through with signing the form to accept treatment. On 6th September I took the first tablets of the treatment. After just 3 days I noticed changes. Although I still felt tired the fatigue had all but gone, as had the headaches and sweats. I still felt ill and knew there’s a long way to go. I have seen steady improvement until a week ago. I was getting severe pain in my hands, knees and feet. I write in my diary that this is not a side effect but is because when I began treatment I had to stop taking my methotrexate injections for acute psoriatic arthritis. The swelling, heat, immobility and pain all resemble the symptoms I had before getting the arthritis under control.
As I write today, those latter pains have reduced, I don’t have fatigue although I do get very tired as I do things. The headaches and the sweats have all but gone, also the many of the lumps in the neck have gone and those that haven’t have reduced in size. Most of all I feel fairly good and very positive that as treatment continues I can only improve and hopefully with it the quality of life, which till a few weeks ago was none existent. I see my consultant on Friday and whilst I know my blood readings will be a little haywire, I shall be reporting for me, this drug is working.
So my fellow CLLers, if the time comes for treatment and Ibrutinib is on the table, grab the opportunity.
Mick Smith MBE