I was home from Ireland for about three days before I had to hit the road again this time to Manhattan where I've just returned from the International Workshop on CLL (iwCLL 2017). It was a great meeting and I saw many old CLL friends and most of the top researchers in CLL. On Saturday I hosted a Facebook Live meeting on the topic of genetic testing prior to treatment. Thank you for all who attended, submitted questions or cheered me on. If you didn't get a chance to view it, you can access the archive at facebook.com/CLLsociety/
Flying home across the country gives me time to think about lots of things as I endure the long flight and unexpected delays. I started to think about my journey with CLL as I just passed the 5th anniversary of the day I took my first dose of PCI-32765, now known as ibrutinib or Imbruvica. You can read about my personal story here: cllsociety.org/2017/05/pers....
I usually use the CLL Society website to post research news, but I started this journey into advocacy with my personal story on my blog and I am picking it up again.
In your 5 years of daily Ibrutinib, what have your side effects been? Any serious sides at any stage? If you are still taking it successfully after 5 years, sounds like it hasn't been too bad for you in terms of sides. (I am just starting to learn about and read up on the drugs.)
Significant muscle pains for the first several months, that are better now, but now gone. Bruising, muscle cramps and pains, and brittle nails are about all these days. All mild.
I just watched your Facebook Live video from May 13 on genetic testing. Very helpful and informative for me. Thank you for taking the time to make it and answer questions.
I saw and thoroughly enjoyed your FB instalment on that Saturday be it a few hours after your 'live on air' version. As a relatively new CLL 'person' it helped me understand mutations / deletions and all the numbers thrown in for good measure Plus a sense of being 'part of the actions' 'in touch' despite being thousands of miles away ... Technology is a great enabler Thanks Brian I will certainly be keeping an eye out for your next broadcast ! ... As well as the rest. 🙋🏻
I was inspired... The last year since diagnosis with CLL has been a rocky one for me. It has really made me aware of how important it is to be an advocate, to use unfailing loveliness, politeness and a steely determination to seek the best treatment out there. This forum and people like you are amazing and I thank you so very much....
I have managed to locate a wonderful team of haematology doctors, a lovely key worker and a supportive group of specialist nurses who happily email responses to my concerns. All these two hours away, but worth the journey!
This forum made me aware that there were options out there beyond the local 'Do as we say, don't ask questions, why do you need to know your results? Its CLL, here is a book, there is no cure..' attitude that so undermined me in the early weeks... incidentally I did not give up on local facilities, I am campaigning quietly and with unfailing loveliness to change attitudes of these doctors. Will it work? I hope so!
This is EXACTLY what my husband & I receive - we live in Cairns Australia, we have a public system so no cost for anything - how do you start to find the kind of support you have achieved. & WELL DONE! 😊
Been following you 10 years since the beginning of the great adventure. That one had a bumpy start and end.Fantastic news 5 years your a pioneer and inspiration. AS you say stay strong. WISHING the very best to you, and thank you for all your work you do for us.
I am fit, 62 years old, mutated and 13q deleted, so a good candidate for FCR, but my insurance will cover Ibrutinib, so I have a choice. Given your experience with Ibrutinib and the risk trade offs of FCR and Ibrutinib, what would your choice be if you were in this position?
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it helped me understand mutations / deletions and all the numbers thrown in for good measure 
