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
Written by
Mick491
To view profiles and participate in discussions please or .
Mick so happy to read this. In February I was told I needed to start treatment but I kept putting it off (out of fear) until the end of May when my doctor said enough-you have to start this. After the first week I wondered why I waited so long. Well I do know why “fear.”
Thanks for sharing. Very informative. I've been on ibrutinib six months now and have had a host of side effects, but it's far better than my symptoms prior to treatment. Like you, my lymph nodes and spleen reduced immediately. My appetite returned and debilitating narcolepsy-like daily fatigue attacks have stopped. I now have general fatigue but it's manageable. The worst for me is roving bone and joint pain (most often in hands and feet but also in knees, elbows and hips) and achy legs - especially at night, but I'm treating that with Tylenol, CBD oil and Ambien. Best of all, my numbers have all moved into the normal range. Good luck to you.
It is inconceivable that your endured and suffered so. I am truly moved and sickened by your treatment or lack of treatment. I’m encouraged and thankful for your current status and finding the courage to make it one day at a time. May many blessings come your way!
Mick - I am so pleased that you have been able to start treatment - FINALLY!!!! - and that things are improving. I don't know how you kept up your fight while so ill, but I'm sure it had to do with survival instincts. I'm looking forward to more positive updates!
Ah Mick, I'm so happy for you. You've had a harrowing journey but it looks as though you are now on the right road. All my good wishes for your steady return to better health.
That is such amazing news. We wanted ibrutinib but its always in the back of our minds that it wont be as good as we expected and the side effects will be intolerable. I havent started yet. Im really pleased to hear you are doing so well. Anne
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
CAR-T day 28 results 
First day on IBRUTINIB
Best day time for Ibrutinib
Bruising day 7 on Ibrutinib
