What questions do you want Andrew Schorr of Patient Power to ask CLL world experts at the International Workshop on CLL?

[AussieNeil]

Andrew Schorr recently posted this request on the ACOR CLL list, which I've repeated here for your input. I'll then summarise your responses for Andrew.

Greetings fellow CLL'ers:

As you know, I have been living in Barcelona for the past 14 months and will continue there for this next school year. But I am visiting Connecticut just now as our youngest will attend boarding school, my old school, in Avon, CT. After the trip to the US Esther and I will head to Cologne, Germany to shoot video interviews with world CLL experts at the IWCLL meeting, the International Workshop on CLL. What do you want to know from these folks? Send me very specific questions - not personal ones - but what you think the keys issues are. I'll do my best to get answers and they will show up in videos we will post on patientpower.info. By the way, that site is finally being modernized with a new design that will be much more focused on only a few cancers, with CLL as a main focus, of course.

Best Wishes, Andrew Schorr,

dx'ed 4/96, FCR in 2000, remaining in remission with with a second cancer in 2011, myelofibrosis, doing great with expensive little white pill morning and night.

Geri Macdonell has already responded with some good questions:

* Are there any studies being conducted on fatigue and CLL?

* Are there quality of life studies being conducted on per and post treatment of patients?

* What are your thoughts on the new drugs being approved by formularies for all CLL patients? Do you think further studies will need to be executed before all patients have access to the drugs? As the new drugs are being evaluated by formularies for reimbursement, are there any quality of life studies that could be used to justify the new drugs for all patients with CLL?

Neil

[vepiskop]

Questions to be asked at the CLL workshop in Cologne

The new BTK inhibitors such as ibrutinib, idelalisib and more..., seem to be well tolerated by patients with co-morbidities and they really save lives! So far they have been tried only on CLL patients that are refractory to chemo, older than 65 and with the worse prognostic markers such as 17p deletions.

Patients <60 years old, healthier without bad prognostic markers have been excluded from previous trials.

Will these inhibitors be tested as first line therapy for this lot?

These inhibitors are by far less toxic than chemo-immuno therapies such as FRC and this is a great advantage not only for old but also for young patients. There is a big market out there of young CLL patients who do not want to take toxic treatments which disrupt or risk their life.

FRC does not cure!

Why not try BTK inhibitors?

Even if inhibitors do not cure, they have good chances not to harm after prolonged use.

Lets treat CLL as any other chronic condition!

Most CLL patients know that it does not kill you, because we spent long time under watch and wait. We can afford to learn to control it and keep it at bay for as long as we live.

Thanks

vepiskop

[PaulaS Volunteer]

People with CLL are very grateful for the various life-prolonging treatments that have been developed for us over the years. However, we realise that as we live longer, we are increasingly likely to develop secondary cancers, and this risk rises dramatically after receiving CLL treatments. Has research shown any evidence yet, of which treatments are more likely or less likely to cause secondary cancers?

[PaulaS Volunteer]

Maybe this is a silly/inappropriate question, so please feel free to ignore it. But here it is...

We know that more men than women get CLL, and that CLL tends to progress more slowly in women. However, with increasing age, I believe there is less difference between the sexes (presumably as female hormone levels drop?). Would there be any advantage to women CLL patients, in taking small doses of HRT? Or even for men?

(I’m sure it’s not that simple, and HRT itself can increase certain cancers, but I still thought it was worth asking).

[AussieNeil Partner Administrator]

Thanks vepiskop and PaulaS for those thoughtful questions. Andrew has acknowledged receipt of these, responding

"I will be at IWCLL in Cologne Monday-Wednesday and will do my best."

Neil

[jangreen]

Please would it be possible to ask a question about stress as most CLL patients say stress seem to effect CLL more than the normal population. Best regards

[AussieNeil Partner Administrator]

I've passed jangreen's question on to Andrew which he has acknowledged.

I haven't seen many questions raised on the ACOR CLL list, so those that have responded above have a good chance of having a world expert answer their questions.

Patience!

Neil