CLL update: the FLAIR trial

CLL update: the FLAIR trial September 8, 2018

South Downs Way making a detour

So those following my health story may remember that a month ago my lymphocyte count was 53 which represented a relatively fast growth (for CLL anyway) and a doubling time of around three months.

Last Tuesday I went back to UCLH and had another blood test four weeks later to the day and it is now 70 which is exactly what the exponential growth curve my count has been on for the last seven months would have predicted.

At the bottom of this post is a new Facebook Live video where I share the latest news.

The rate of growth probably explains why I’m getting worse and worse fatigue. And my nodes are also growing. It is of course not as fast as an aggressive acute cancer. But it is fast enough to sit up and take notice of.

My doctors now want me to begin treatment with chemotherapy or related medicines. So I finally decided to sign the consent form for a clinical trial, the FLAIR study.

Oddly I feel a huge sense of relief as it’s been clear for a while that treatment was coming for me.

And It seemed like the right thing to do to volunteer for a trial, partly because I have helped run so many of them on behalf of pharmaceutical companies, and to benefit future generations of CLL patients. But it also seems like the best thing for ME to do because of the clinical data I have reviewed.

All three arms of FLAIR have been shown to work well in patients with CLL (one of which has mostly been used so far in patients already treated with other medicines but it worked SO well there they believe it could be very useful earlier on).  In fact each of the medicines will help, at least to some degree, around 80-90% of people who take them.

The question mark is about which of the medicines will give the deepest and longest response.  We simply don’t know which is the best treatment. And when we don’t know a clinical trial is how we find out!

With my illness it is likely I may need more treatment later on. But many people have long periods where the disease is well controlled. And if it does relapse, other treatments are also available.

I’m at peace.

I’m hopeful.

I’m praying that my treatment will lead to me FEELING loads better.

My CLL cells don’t realize that right about now is when we start fighting back.

They have no idea what’s about to hit them! No more passively waiting whilst they do their best to destroy my health and quality of life!

I am happy to take whatever the computer randomly chooses for me.  This is because I believe that the hand of God will lie behind the machine and ensure that I get the right treatment for me.

I have a CT scan booked for this week.

On the 25th I will know if I have passed the screening for FLAIR and which treatment I am allocated to and will start treatment possibly that day or pretty soon after.

I really value your prayers and all there is left to say is to share the video I made this morning on Facebook. If it doesn’t play visit Facebook to view it.

 


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Adrian Warnock is author of Raised with Christ (Crossway, 2010) and Hope Reborn (Christian Focus, 2014). He blogs at Patheos and served on the leadership team of Jubilee Church, London. Adrian is a medical doctor and was diagnosed with chronic lymphocytic leukemia in May 2017. He is passionate about helping Christians learn to approach suffering with hope and compassion. Adrian began a series on the commandments of Jesus in January 2018.

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