Sarah W
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Cycle 6

Sarah W
Posted by
26 Jan 2015

Five months into the IcIclle Trial for Ibrutinib

This is a very overdue update; today I had my routine check-up having been on the Trial for five months. For the second time since I started the trial I had a bone marrow aspirate and a CT scan as well as the regular blood tests etc. The downside of the Iciclle trial, although personally I wouldn't really call it that becuase of the benefits of Ibrutinib, is that you have to have more bone marrow tests and CT scans than other treatments.

I feel extremely fortunate to be able to say - so far so good. In fact, so far so amazing.

Since I last posted, as well as starting the trial, I have moved house, participated in the Prudential Ride 100 and the LLR London Bikeathon and continued to work as much as ever, all of which I don't think would have been possible as fully as if I'd had the treatment available when I was first diagnosed.

The Ride 100 was hard, it was the day before I began the trial and the weather was epically awful. Prof Devereux, my consultant, suggested I shouldn't be doing it, he asked me if it was important to me to do it, I think the look in my eyes answered his question (and the start of some tears) so eventually he said 'Ok, ok....' and warned me how tired I'd feel throughout. He wan't wrong but there was no way I wasn't going to finish it and thanks to the endless support of everyone around me I did it.

The next day when I went to Kings to start the treatment I was feeling pretty knackered but as the doctors did their checks it dawned on me how lucky I was to be eligible for the trial and to have that level of care. The potential of what was about to start was enormous, and definitely life changing. Everyone was so excited for me and for what it meant for reseachers and the bigger picture of blood cancer treatment.

I was nervous about first taking the capsules because I'd read what the possible side effects were and also it just felt like a bit of a leap of faith. I took them and waited half an hour in the Clinical Trial Facility before I was able to go for some lunch. After some food I went back for more checks but I hadn't had any kind of negative reaction to the drug and that has continued throughout. I had a minor rash on my legs a few weeks in but after that nothing that I could detect and the rash disappeared soon enough.

There were two major obvious positive effects of the drug, one was the visible evidence. Prof Devereux had told me that my neck would reduce within the first week, which it did, dramatically, it was noticeable within two days. I took photos on a daily basis and they just prove what amazing results Ibrutinib can bring.

The other thing was how well I felt physically. The first couple of weeks after Day One of the treatment were unbelievable. The professor had also said to me that he suspected I had just got used to how the illness was making me feel and that I may feel like a weight was being lifted from me once I started treatment. Again, he wasn't wrong. I suddenly realised how rubbish I'd been feeling, despite denying to everyone around me, the doctors and myself that I was feeling ill. Over the few days following the first dose I started to feel so much more energetic and lively.

I've continued to feel well and as promised, able to remain active, more active than I was able to be for perhaps the last six months leading up to being told I needed treatment.

At this time four years a go I was going through the process of being diagnosed with CLL. At that point, really the only option was chemotherapy and although I was put on Watch and Wait and expertly cared for it was unknown exaxtly when I would need treatment. What was known though was that the speed in which the disease was developing started to increase from the end of 2012.

I can't say too many times how lucky I feel to have been eligible for the Ibrutinib trial and how thankful I am to the researchers, the doctors, Leukaemia and Lymphoma Reaserach and to everyone else who plays a part in research and care, for giving CLL sufferers the hope that Ibrutinib gives.

People who see me on a monthly basis can't get over how well I look now (I think I looked worse than I thought I did, it transpires!) and people who have met me since the illness started to be visibly apparent can't quite work out what's going on! They just know something's changed for the better and that I'm looking healthy.

This year there's going to be a lot more cycling that's for sure. I want to help ensure LLR can continue to facilitate such vital research and care and above all else, I want to say a massive THANK YOU.

Comments

27.01.2015

Sarah thank you so much for the update!

It's absolutely wonderful to hear that you're doing so well on the Ibrutinib - you deserve it! Hard luck with the bone marrow harvests - I don't mind those - but as you say it's a small price to pay given how well you've responded so far.

I can completely relate to your not realising how ill you are until after you start the treatment. It's like a penny drops as the treatment begins to kick in and you realise just how lousy you were to begin with. 

Stay in touch and keep cycling! Are you thinking about doing any events this year?

27.01.2015

Wow Sarah - what an update. So pleased you are feeling well since being on treatment - and amazing that you undertook ride 100 the day before the trial, what an incredible feat. Good luck with everything going forward - keep us posted! Lauren (LLR)

Anonymous
27.01.2015

So happy to hear, glad to have stumbled across your post. Best wishes from across the pond in New York.

28.01.2015

Thanks Andy. One of the hardest things about starting treatment was that it meant I had to acknowledge the illness and for really the first time face it head on so to speak. It was extremely daunting but accompanied by a huge sense of relief to be taking that first step. 

Im hoping that the events this year will include the the Wales Velothon, Prudential Ride 100, the London Bikeathon (of course) and currently I'm pondering London to Paris and the London Revolution, all of which I will be doing for LLR, I want to make the most of this fantastic treatment!

Thank you again Andy for your support and encouragement.

Anonymous
02.02.2015

Your posting is going to help me a lot! My 80 year old wife has CLL and we have been in the wait and watch mode for 12 years. Over the last year, her white cell count has begun to climb and she is approaching treatment-decision time. Ibrutinib therapy is not yet approved for treatment-naïve patients in the US but it looks like it will be and soon. From my literature studies, Ibrutinib seems to be our clear choice but the reported side effects worried me until I read your posting. Now I know what I must do!!

Anonymous
02.02.2015

Your posting is going to be a great help to my wife and to me. My wife was diagnosed with CLL 12 years ago and we have been in the wait and watch mode ever since. As you know, 12 years ago treatment options were brutal and likely outcomes were terrifying. Over the last 12 years I have actively followed the emerging treatment technologies and I have been very encouraged with the progress.

My wife's white cell count began to increase a year ago. A month ago her WCC was 67 and we are approaching treatment decision time. I am convinced that Ibrutinib is the treatment of choice but the reported side effects are troubling, particularly since she is now 80 years old. Your posting alleviated my concern.

Unfortunately Ibrutinib is not yet approved by the US FDA for treatment naïve CLL patients. My hope is that the FDA will issue an approval soon or that I can find a clinical trial for which she is eligible. We will come to England if that is an option. What is the designation of the trial in which you are enrolled?

Thank you for the encouragement and please continue your postings so that others may benefit.

Anonymous
02.02.2015

Dear Sarah,
Ibrutinib has saved my life. If you want to read about my journey to clinical complete remission, please visit www.DrLaVerne.blogspot.com. Happy day!

Anonymous
03.02.2015

Sarah! Such good news - so glad the trial's working. I think of you often.

Love Elaine x

Anonymous
03.02.2015

Such a great post Sarah! So glad you are doing well.
I work with Andrew Schorr at Patient Power and we'd love to reprint your blog post on our site. We're trying to recruit different guest bloggers so our patients can hear from various viewpoints. Is us reposting this something you'd be interested in? If so, you can reach me at theresa@patientpower.info
Thanks!

15.01.2016

Dear Sarah,

Your post is so inspiring , you've acheived so much and been so strong through out your treatment. Its amazing that your doing so well.

Im a reporter from Magic radio station, and I am covering a story about clinical trials. I am really interested in speaking to some one who took part in a clinical trial, to talk about their experiences etc. I would love to do a really short interview with you. If you you'd like to get in touch from be and email at charlotte.simpson@bauermedia.co.uk

All the best, Charlotte