Andrew Schorr has posted this request on the CLL ACOR List for questions to present to CLL experts he plans to interview at this year's ASH meeting:
Greetings Dear CLL friends:
I am getting ready to attend the big ASH meeting in New Orleans where there will be a lot of news and this year I think we'll have three or four camera crews gathering video interviews, mostly at our own expense. We're trying to interview CLL experts from around the world and in their languages. Why shouldn't we have a global conversation, right? As I prepare, please email me your questions or send them to cll@patientpower.info. We plan to pose a few every expert we interview. The ones we did with Dr. Neil Kay from the IWCLL were a big hit.
I'm sure he'll welcome questions from our community, so please send them directly to Andrew at cll@patientpower.info or if you'd like to get some community input to help formulate your question, reply here with your question. I've dropped Andrew an email to so he'll expecting our input.
Thank you,
Neil
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AussieNeil
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I would really like to have more info on causal links with CLL. The emphasis seems to always be with treatment rather than prevention. I would like to know where the hot spots for CLL occur and if there are any environmental connections.
Questions that relate to some of the day to day challenges faced by some CLL patients rather than just focusing on advances of the increasing numbers of novel CLL treatment strategies and drug development in clinical trial.
More interviews with advocates and clinical specialists who may be involved in the multidisciplinary care team of a CLL patient for example, do other specialisms attend ASH or are we limited to the Hematological elite?.
It would be helpful to see discussion with leading clinical researchers at ASH who may be involved in developing strategies that may aid/improve the activities of daily living and quality of life of CLL patients.
CLL people carry with them and live daily with the consequences of disease development and treatments and even if they gain access to experimental therapies this will be the case for some time. CLL is not treated yet at the beginning of the disease pathway.
Perhaps some news developments and thinking about the following areas?:
The psychological impact of living with CLL?
The significance of exercise/physical activity and CLL?
The effect of Diet & Supplements and living with CLL?
The effect of symptom and disease burden while living with CLL?
Understanding long term fatigue, ‘chemo brain’, and other long lasting effects of treatments
The effects on immune, endocrine and neurological systems. E.g. altered cytokines, defective T-cell regulation, diminished NK cell activity and damaged DNA. Should these be included in future monitoring of patients?
Understanding of Immune complications? CLL and treatment mediated
Improving vaccination strategies?
Developments in Immunoglobin supplementation?
Developments in study of viral activation and how to limit consequences?
Developments of prophylactic medications. E.g. New strategies & adverse effects?
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Coping With a CLL Diagnosis
