Kris G
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CML HORIZONS 2014 DAY 3

Kris G
Posted by
04 May 2014

Late nights and early mornings. A snatched breakfast and sat, politely and on time, for the final session. There's no rest at CML Horizons, we are straight into STOP trails. Normally spoken in hushed tones by patients, this is closest we get to a cure for CML on TKI therapy. It involves stopping therapy, only with the support of a clinician, once the disease is completely under control.

Giuseppe Saglio took us through the many forms of STOP trials which are mainly undertaken when the patient has achieved a swift (within 24 months) complete molecular response CMR (4 or 4.5 log reduction). There are other factors: women do better and swift progress to CMR is key. Some STOP trials have shown fluctuation below 0.1% of patients who have stopped, but the disease never goes beyond this point - they never lose response. It shows that continual monitoring is a key part to managing this method of treatment. The strength of the TKI the patients takes has a great bearing on the success of stopping treatment, there is a better success rate on nilotinib and dasatinib than on imatinib. Professor Saglio suggested, based on trials, that STOP was not risky and no patient accelerated their condition if the trail did not work. Even multiple stopping strategy can be used, but carful planning undertaken before each try.

Professor Saglio, "discontinuation of drugs will become common clinical practice".

I've highlighted that line, it shows how far we have come and it gives hope for CML patients everywhere.

Susan Saubele provided an overview of interferon therapy in STOP trials. More good news, in particular with people who haven't received a deep response. One interferon study found only 25% of people lost remission when combined therapy was withdrawn. It appears that major molecular remission (MMR) in interferon therapy is a good place to be; Pegasys interferon therapy achieved a better response. The EURO-SKI trial is the largest and most exciting study currently running, worth watching results as they come in later this year.

Neil Shah presented an individual case study where a woman came off imatinib due to pregnancy in 2001. She didn't start the therapy again and remains, in 2014, undetectable. She is monitored annually. An amazing circumstance. It's clear that our understanding of the disease and associated stem cells is growing year-on-year. Results from a variety of different studies look promising. The issue here, for patients, is that the topic is weighed down with scientific content and heavy discussion. I have to take an editorial decision and simply tell you the outlook is very positive. If you want the detailed analysis I would highly recommend Neil Shah's presentation on the CML Advocates website when Horizons goes live, digitally, shortly after the conference. In the meantime, the morning session brought great hope to the room and there are many people, all over the world, working hard to develop deeper responses for all patients and a TKI cure.

After a smashing book presentation by Mina and Stephene Daban from LMC France, Gail Sperling from The Leukemia & Society in the USA stepped up to present social work and managing distress. I'm a keen believer in mindfulness and I feel it is the area in advocacy where we are most lacking. Whilst clinical treatment is first class, psychological well-being isn't. Gail spoke about the 'CML Busters' - a group set up to deal with information and supporting patients. A very successful initiative. We explored self care and self assessment, ensuring that patients are happy and fulfilled and are dealing with things. The importance of being physically, emotionally, psychologically and spiritually healthy (as much as possible) is key. It's about finding a balance. I have reservations about the term 'self' care - no one should be alone and support is not a solo venture. Gail was reassuring that the focus of her group was ensuring people had people; the 'buddy' programme was particularly impressive. The secret to success? Persistence, sharing, staying connected and a sense of humour.

The final session of the conference was from Sarah Liptrott, a clinical research nurse from the European Institute of Oncology in Milan. This fascinating talk on sex, self-esteem and a chronic disease was sincere and interesting. I was particularly impressed by the analysis of side effects in relation to intimacy and sex...kissing with 'dry mouth'. Very real problems. Fatigue is a key factor and Sarah provided some excellent advice on dealing with it: fluids, setting goals, sleep, routines, eating healthily and yoga. As we heard from Gail, encouraging patients to be proactive in their care helps with self-esteem. In a similar way our treatment is becoming more and more personalised, our care is moving this way too.

I am constantly irritated by studies with tiny (less than 10 respondents) that advocate men staying on treatment whilst trying for a baby. Why take the risk? Sperm bank before treatment starts! There is not enough long-term data that gives us the right to make that decision. This area needs much further discussion, with clear guidelines, supported by stronger data. I feel like I say that every year, perhaps I do.

A wonderful conference. This is the 12th CML Horizons conference and they really go from strength-to-strength, the content will be available digitally on the CML Advocates website in the next 2 weeks and I'd recommend going through the information. Great thanks go out to everyone involved in putting together these marvellous 3 days.

I'd also like to thank Leukaemia & Lymphoma Research (LLR) in the UK for supporting my trip. Victoria Goldsmith, from LLR, accompanied me and I believe the information we bring back and the contacts we made will have a huge impact, not just on CML patients but on ALL blood cancer patients. LLR have been conspicuous by their absence at CML Horizons since I first attended. I applaud the foresight and drive they show in supporting patients via new initiatives like this. Thank you to everyone at Leukaemia & Lymphoma Research, for everything you do.

Time to fly...via Amsteram...wishing everyone a safe journey now and forever.

Comments

06.05.2014

Hi Kris,

Thanks so much for the update. Would love to have been there as sounds like it was a really interesting weekend. The news about the STOP trials is all very encouraging indeed and is further evidence of just how far we've come in the treatment of CML in recent years. I wish I'd been there, too, for the final session about sperm donation and sex and treatment and completely agree with you that this is an area which needs further discussion and clearer guidelines.

Hope you had a safe journey home and thanks again for your blogs - very informative!