Counting the sleeps till treatment

I was diagnosed in August 2016 following an unexpected collapse at home ages 47 ( to the day!) Having tracked my bloods for 6 months I was told to go live my life and forget about CLL. As far as I was concerned W&W was going to be my constant state for 10, 15, 20 years and life would be fairly normal.

In February, just before my next planned trip to the Consultant, I had a chest infection and was advised to have my bloods taken too. The next day the dreaded call came to say that WBC and Lymphocytes were accelerating and treatment was needed sooner rather than later. My hopes of a long wait were dashed and my mortality was again at the forefront of my mind.

I saw my consultant the following week, and having said I would be interested in being part of any trials at an earlier meeting, I was told that I might be eligible for the FLAIR trial and that the process would begin with CT, bone marrow etc. Sadly my usual hospital was unable to prescribe at that time so I was to transfer to the Birmingham Queen Elizabeth hospital some 40 miles away.

I was soon with them being assessed, drained of gallons of blood, scanned, poked but I cannot praise them enough. Each and every person that I have been involved with have been so caring and kind.

On Thursday I received the news on my poison and it is to be the Ibritinin tablet. So this week I have 3 trips: Wednesday for 1st tablet, Thursday for half of the antibody and Friday for the balance. I have planned childcare, hubby is ready to be chauffeur (that will be fun driving my automatic through Birmingham whilst I sit with my head in a bucket no doubt), and have prepared my handover at work.

I am nervous, excited and eager to get this show on the road. I am a positive person and a fighter. I have a high pain threshold and really hope it will stand me in good stead for any aches and pains that may come my way.

I can and I will do this!

13 Replies

  • Wish you all the best. I am on a flair trial 2 months in but with FCR. Like you felt pretty fed up when realised I needed treatment. So far, I have felt better than I did pre treatment, so fingers crossed!

  • Yes you will. Love the positive approach.


  • In normal circumstances you won't need that bucket!

    The Rituximab infusions are very well controlled and any side effects will be dealt with whilst infusion is taking place initially.

    Whilst some side effects are possible with both medications not all of us get them hopefully that will be the same for you.

    Best of luck keep us informed


  • Thanks Geoff

  • Yes, we are warriors and will kick cancers butt! Thoughts and prayers...I had the same happen to me.

  • You are a great attitude and will surely do well on treatment!!! I too am being treated with Imbruvica and Rituximab. I had a reaction to the first infusion and was hospitalized for two days. This is a possibility but no worries if this happens. I had elevated temp., chills and headache with some nausea. It was not a bad experience just surprised me a bit. I later found out that it was a somewhat normal reaction to the first infusion and did wonderfully after subsequent infusions. Just a bit tired for a day and after that my energy level would increase back to pre cancer days. I started on Imbruvica in middle February with no side effects to speak of at this time. I am 51 and according to past blood work CLL doc thinks I've had this disease since 2014

    I agree wholeheartedly as I have presented at general doc for over 2 years with feeling very fatigued.

    Sorry for long response but wanted to encourage you to keep good spirits and yes, you can do this!!!

  • Thank you for the reply. I am planning on putting an overnight bag in the car just in case x

  • I'm also in FLAIR, on IR and probably local to you in the Midlands UK. The QEH Haematology unit has an excellent service with some of the best CLL docs in the UK and you'll be in safe hands. Sending you best wishes for a smooth 'journey' through treatment.

  • Are you being treated at QEHB?

  • No, Heartlands Hospital in Birmingham.

  • It would be good to stay in touch with you. Best of luck x

  • KAS8 - Think of your overnight bag as being like taking an umbrella. It only rains when you forget one. I first had rituxan in 2003 - three rounds f it weekly x4 during my first two years. I had no reaction at all and was at work the next day for the second and third rounds (I was very ill when diagnosed and getting the first round, but had no problems with the rituxan). The Benedryl buzz (IV pre med) was more of an issue.

    Rule one for your infusion - go in well hydrated. Pops those veins up ready for treatment. Keep hydrating during and after to flush out your system.

    Rule two - tell your nurse if ANYTHING feels even slightly different - flushing, slightly chilled, itchy ear - ANYTHING!!! Chemo nurses can stop the infusion, make adjustments in premeds, slow the infusion rate, and get you going again if they have a heads up that there might be a problem. It sounds like your first dose is split to prevent reactions, as mine was each time, and, from your wording, that hubby is not accustomed to an automatic and will have more trouble than you do.

  • So day 3 of tablets and 2 of infusion. 100 ml yesterday and absolutely no side effects. Felt cold during infusion and tired. Back today for 500ml so fingers crossed it goes as well as yesterday

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