Education is key for patients and their loved ones to be true partners in their treatment. The recent CLL Live
2015 conference provided participants an opportunity to hear from leading experts in CLL research and care
from around the world. As a result, conference attendees are better informed and equipped to ask their health
care team pertinent questions about their own treatment plan. In addition, since CLL can feel isolating and
impact emotional well-being, this conference provides an important opportunity to network with others facing
similar challenges and become part of the larger CLL community.
CLL Live 2015 brought together over
260 patients, caregivers and other
supporters, with attendees from
Canada, the United States, the United
Kingdom and Australia. This far
exceeded expectations! Participant
feedback was overwhelmingly positive.
A report on their feedback will be
released soon.
To ensure participants had a solid understanding of CLL, Dr. Graeme Fraser (CLL Live 2015 Medical Chair) and
Dr. James Johnston started the conference with comprehensive overviews of the disease. This was followed by
the keynote, Dr. Michael Hallek, who outlined the treatment guidelines used in Germany based on disease
symptoms and mutations, as well as an update on where research is focusing for his team. Dr. Michael
Keating then gave an overview of how he currently
treats his patients in the United States, as well as
providing more research information. Both doctors
expressed how encouraged they are with recent drugs
that have come to market or are in late stage clinical
trials and are close to coming to market. New therapies
are allowing doctors to further cater treatment to
individual patient needs with an increase in durable
Drs. Johnston, Keating, Hallek, Fraser & Gibson
remissions. There are still a lot of unanswered
questions about these new therapies as they have been in use for a relatively short period of time, so research
is continuing to further examine if they should be used in combination with other drugs, ideal dosage and if
daily treatment necessary indefinitely. Nevertheless, this is an exciting time in CLL. The doctors also
encouraged patients in 'watch and wait' to rethink how they consider this phase, to embrace the fact the
disease is staying at bay as many patients can stay in this phase for years. More research is being done with
new therapies to see if there is an advantage to early treatment, during what has traditionally been the 'watch
& wait' phase, though the results of these studies is a long way out. Our featured speakers were rounded out
by Dr. Spencer Gibson who gave an overview of key Canadian CLL research projects.
Most of the doctors participated in a hematology panel at the end of the day
Friday, answering questions submitted by participants. Unfortunately Dr.
Hallek had to leave early for another conference. The majority of the
questions asked by participants were about new therapies. This is of course
an important topic as we all want cures, and if we can't have cures, longer
remissions with less toxic drugs.
On Saturday, Dr. Susan
Leclair, Dr. Nicole
Lamanna and Erin Streu,
RN, discussed practical
Drs. Foley, Johnston, Leclair,
topics like the genetics
Lemanna, Keating & Gibson
behind CLL; different
Drs. Leclair, Fraser, Mittmann, Lemanna & Erin Streu
prognostic factors, their importance and limitations; why
and when other tests like CT scans are used; what triggers treatment; what symptoms cause concern for a
physician; tips for patients in treatment and out of treatment; screening for secondary cancers; selfadministered subcutaneous immunoglobulin infusions. A session was also held on the economic implications
of new therapies, which we all know are very expensive. Dr. Nicole Mittmann gave an overview of all the
considerations that go into approving a new drug in Canada.
All of the doctors presentations were recorded and videos will be made available online in the near future.
CLL Live 2015 also included breakout sessions for caregivers , untreated patients and treated patients. A panel
of patients closed out the conference speaking about their varying experiences with CLL, including a patient
who continues to be on watch and wait 10 years after diagnosis; one who needed treatment immediately
after diagnosis; patients who have needed multiple therapies with various side effects and results (including
clinical trials); one with secondary cancer. As well as speaking about their CLL disease management, they also
spoke about where they gather reliable information and the importance of being an active participant in the
CLL community, whether that is online or face-to-face locally. While we think the value of these sessions is
immeasurable, they were not recorded to protect patient privacy.
And of course, we all made the most of the opportunity to connect with
others who are facing CLL.
This conference could not have happened without the help of many
dedicated volunteers. Our thanks to all who generously gave of their time
and talents to make this come together.
Patients enjoying each others
company!
Thanks to the sponsors for allowing us to provide the conference free-ofregistration charge to participants: Platinum Sponsors - Roche & Lundbeck;
Gold Sponsor - Janssen; Silver Sponsors - Gilead & CSL Behring; Bronze
Sponsors - Novartis & Baxter.