That was a late night! I have a habit of doing this, always the last to leave the party. I won’t tell you what time I crawled into bed, what happens in Prague stays in Prague. So after an omelette, espresso and eye cream the day begins. Upon entering the conference room I’m grabbed by a delegate I met last year who asks me how I am able to look younger than I did last year? Today is going to be a good day!

Jane Apperley, a leading light in haematology and transplant developments from the UK provides an interesting insight into the science of transplants and if they still have a role in treating CML. Of course the answer is yes. It’s clear that TKIs have helped and there is great work still happening, survival rates are good and improving, it’s becoming clear that an early transplant decision presents a better outlook. I look forward to sharing Jane’s slides with blog readers.

Tim Hughes took the stage again to present the latest data on STOP trials. It’s clear that his TWISTER trial is backing up the data on the French trial, 40% of patients stopping imatinib therapy under controlled conditions stay in remission. Where the CML came back treatment resumed and all patients returned to remission. Success criteria improved with combination therapies. Recent STOP 2G-TKI in France have shown that there is a success rate of around 60% with patients on dasatinib and nilotinib who stop under controlled circumstances. There are clearly many STOP trials happening, results are promising, interferon, and possibly immunotherapy, certainly help and it is well worth us keeping our eye on results. It’s important we talk about this and tell people, especially politicians, this is the cure we allude to but worry about pinning our hopes upon. Our hopes are well founded and just in the last year I’ve seen rapid developments.

“Killing the Last Leukeamic Cells” certainly got the attention of the audience and this was a genuine statement. Who’d have thought we would be having this conversation 10-15 years ago? The key, we found out, is detection and a far more sensitive method of tracking but, again, the talk was of cure and absolute belief that this can happen.

I thoroughly enjoyed giving my talk about being connected and using social media as an advocacy tool. It was a very humbling experience to be invited and I’m very grateful to the steering committee for the opportunity. Things went well, I felt like I could have gone on and on, always the same when you are enjoying yourself but I hope delegates were enthused and understood the power of being connected.

The afternoon session covered vital topics like quality of life, adherence and pregnancy. Fabio Efficace presented detailed data on quality of life and the devastating effects of fatigue on the CML patient. Understanding side-effects is key to developing new treatments and managing old ones. Quality of life is something that must go hand-in-hand with staying alive.

On the subject of staying alive we discovered that one fifth of patients surveyed in a recent poll were non-adherent (they didn’t take their tablets when they should). We know that high adherence is key to treatment success so this comes as a surprise. We need to support patients and inform that taking medication every day is important. It is easy to shirk responsibility and hope that someone else manages the message but the reality is that this is collective responsibility and we must all play a part in supporting the CML community and communicating how important adherence is.

Doctor Jane Apperley took to the stage again this time to present CML and pregnancy. There are clearly issues taking TKIs and the advice was for women to come off treatment during pregnancy. For men sperm banking is the safest method. It angers me when I read self confessed experts giving bad advice, particularly about pregnancy. This is not an issue we should be gambling with. Professor Apperley is a leading light on this subject and she is very passionate about enabling patients to become parents. Ultimately there is another life here at stake. I am thankful to my first consultant who ensured I sperm- banked on diagnosis. Without that advice I wouldn’t be a Dad now; thinking about my little boy Luca, this is a very sobering thought.

The day concluded with patient groups and advocates from around the world presenting the work their groups were doing. Bringing developments together in this way certainly gave the day a truly an international feel. It certainly bodes well for International CML Day later in the year.

The evening brings a chance to socialise and relax away from the hotel. What for breakfast tomorrow? What time will I get to bed? And how many more times will I try and crack a joke with a non-English speaker only for it to fall flat?

All these answers and more tomorrow. Same bat-time…same bat-channel.

Kris

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