8th Annual National CLL Meeting Synopsis, Winnipeg, October 2012
The annual meeting brings together oncologists, hematologists, researchers and trainees across Canada to hear about CLL clinical trials in Canada, and basic research on CLL. New this year was a poster session where trainees and researchers presented their findings and selected posters were presented orally. The keynote speaker was Dr. Tait Shanafelt from Mayo Clinic. He talked about the management of the untreated CLL patient and emphasized the importance of understanding the patient’s anxiety with the diagnosis of CLL, the importance of vitamin D to delay disease progression and the use of prognostic markers to predict disease progression. This informative talk gave the starting point to discuss what approaches physicians should take in counseling newly diagnosed CLL patients.Clinical Trials: New drugs for CLL are now under clinical investigation in Canada. Two drugs, GA101, (a new rituximab-like treatment) and a CDK inhibitor show promise to treat patients resistant to standard chemotherapy. The most exciting news was from Dr. Farooqui at the NIH who discussed the results of their studies using Ibrutinib for CLL. This drug reduces lymph nodes in patients and seems to be active in patients with poor prognostic markers, including those with deletion 17p. This drug will be part of a new multicentre clinical trial in Canada in the near future, and will be used in combination with bendamustine and rituximab. In addition, a similar drug to Ibrutinib, GS-1101 (CAL-101), is being combined with ofatumumab in a second multicentre trial. Marrow stem-cell transplantation for CLL was presented by Dr. Seftel from CancerCare Manitoba, where toxicities from transplants are being minimized but graft versus host remains a problem. Finally Dr. Kochenderfer from the NIH talked about immune therapy for CLL where immune cells are engineered to target CD19+ CLL cells. Patients respond to the therapy but there are toxicities and the number of immune cells needed to provide benefit needs to be determined. Dr. Neil Kay talked about clonal evolution in CLL stating that the CLL cells at diagnosis are not the same CLL cells after relapse. Understanding these changes might help develop better targeted therapies for CLL patients.
Intellectual History: Dr. Marti of the National Institute of Health is well known for his work on monoclonal B-cell lymphocytosis and famililar CLL, but has also been collecting material for a book on the history of CLL. Dr Marti gave an overview of the history of CLL from the 1800s up until the present time. He talked about early pathologists and how they used microscopes to identify CLL cells. In addition, he showed a video clip of a conversation he had with Dr. Hamblin last year in which Dr. Hamblin discussed his discovery on the importance of mutations in the immunoglobulin genes for prognosis in CLL. Finally, he discussed the role of Canadians in the history of CLL and how Dr Israels, from Winnipeg, was a co-author on the first paper documenting the use of chlorambucil in CLL in 1955. It was a truly remarkable talk and we look forward to the update next year.
Patient Advocate: Mr. Caine gave an informative and heartfelt talk about the patient’s perspective in CLL, how physicians can better communicate with patients and the need for patients in Canada to have the most up-to-date treatments. On behalf of all the patients, he congratulated the presenters for their work on CLL.
Basic Science: Dr. Ghosh from the Mayo Clinic gave an insightful talk about the role the microenvironment (ie lymph nodes, bone marrow) plays in changing CLL biology and described a novel therapeutic target for these changes. Dr. Linda Pilarski from the University of Alberta gave another interesting talk in which she showed that in some CLL patients there are several different types of CLL cells. This suggested that there may be a common “CLL stem cell” which can give rise to different types of CLL in the same patient. A recent paper in Nature Genetics seems to support this idea. Dr. Aloyz also provided evidence that metabolism changes in CLL cells could be used for targeted therapies. Dr. Davie from the Manitoba Institute of Cell Biology showed how changes in our epigenetic profile could affect gene expression. Simply put, targeting changes in gene expression could be used to kill CLL cells. Dr Aloyz presented evidence that targeting the telomeres, which are at the ends of DNA, could lead to increased killing when combined with standard chemotherapy. Dr. Marshall presented evidence that targeting signaling in the lymph nodes could be an effective therapy against CLL cells with aggressive features. Finally, Dr. Gillian from the BC Cancer Agency gave an update on the population-based genetic profiles of CLL patients and their clinical outcomes in BC. She discussed how these genetic prognostic markers are relevant to other patients in Canada.
Overall the meeting was an opportunity for CLL researchers to share ideas and to discuss progress in CLL therapy and science. It was suggested that the proceedings of the meeting be published in a scientific journal. We will continue with this meeting to connect the CLL community across Canada in the fight against CLL
Financial Hardship of Cancer in Canada: A Call for Action!
REAL PEOPLE, REAL HARDSHIP
"Bankruptcy. Welfare. Losing the family home. These are not the outcomes we usually associate with providing compassionate care or surviving the cancer journey. But for some Canadians, the financial impact of cancer can be this devastating. It's time to rethink how cancer affects Canadians, and what we must do to enhance the quality of life for everyone touched by the disease."
Earlier today, the Canadian Cancer Action Network (CCAN) and the Canadian Cancer Society - Manitoba Division launched the report, Financial Hardship of Cancer in Canada: A Call for Action.
It is critical that the patient voice be heard, loud and clear. You can help generate dialogue across Canada by sharing the report with your network; posting on your Facebook page; commenting on Twitter or reaching out to your local media to draw further attention to the issue in your community. Let's work together in order to bring about change and real improvements over the next five-years!
To download the report or view the press release and patient videos, please visit the Canadian Cancer Action Network website
You can also download the full report here:
Report (English)
Report (French)
Someone in my family has cancer: A video for kids and parents
A diagnosis of cancer is devastating, not only for the patient, but also for his or her entire family. Lundbeck Canada has developed an animated video aimed at helping children better understand cancer in the family and help them cope with the situation. This video is meant as a conversation starter and should not replace an open conversation between a child and an adult. Watch it with your children or grandchildren.
Here are some organizations that might be useful in helping you to answer any tough questions that might come up:
Canadian Cancer Society — Telling children about a cancer diagnosis in the family
American Cancer Society — Helping children when a family member has cancer: Dealing with diagnosis
Cancer Research UK: Talking to children
NYU Langone Medical Center: Straight talk to kids
Fondation québécoise du cancer: Du soutien au quotidien pour les Québécois atteints de cancer et leurs proches
Video on YouTube:
Lundbeck Canada
Our New Partner
CLL Patient Advocacy Group is pleased to partner with Patient Power to bring you audio and video interviews about CLL to help you make informed decisions in partnership with your medical team. These are patient-centric programs focus on delivering the most credible, authoritative and up-to-date health information. Founded by patient-advocate, medical journalist, author and cancer survivor Andrew Schorr, Patient Power goes far beyond basic health information. View the entire library of audio and video interviews on cancer and chronic illness at Patient Power.
Pan-Canadian Oncology Drug Review (pCODR) Update
Pan-Canadian Oncology Drug Review (pCODR) Update We have been accepted as a Patient Advocacy Group by pCODR. CLL PAG is pleased to report that we have made a submission to pCODR in support of Lundbeck Canada’s application for Bendamustine for Patients with Chronic Lymphocytic Leukemia (first line and relapse/refractory) for whom fludarabine-based therapy is not appropriate. Thank you to those who participated in the Patient Experience Survey; your responses have been used in the submission.Contact Deborah at cllpag.canada@gmail.com if you would like more information
May 8th, 2012
A Thank You!
CLL PAG wishes to thank all who have requested membership in CLL PAG. We now have members in most provinces and many supporting members in the US. Our next advocacy issue is in Ontario, the only Canadian province/territory where Rituxan is not available for second line treatment of CLL– stay tuned.
May 8th, 2012
Canadian CLL Researcher Awarded Grant
Dr. Spencer Gibson, M.D. of the University of Manitoba has received a grant from the CLL Global Research Foundation.Dr. Gibson's research involves the tyrosine kinase inhibitor gefitinib, currently used in treating lung cancer.
His research will assess whether the drug gefitinib can selectively kill ZAP-70 expressing CLL cells by inhibiting ZAP-70 function. CLL cells that contain the ZAP-70 protein tend to be closely associated with aggressive disease, for which there is currently no targeted treatment.
The grant of $100,000 is for one year of research funding with the possibility of a second year.
Link Here for More Info
CLL ~ Invisible Cancer
Matt Galloway of the Canadian Broadcasting Corporation (CBC) spoke with Dr. Rena Buckstein, about chronic lymphocytic leukemia. She heads the Hematology Site Group at Sunnybrook Hospital's Odette Cancer Centre, Toronto Canada. This follows the untimely death of Canadian comedian Roger Abbott, who had CLL for 14 years.
Podcast (about 8 minutes): CBC Podcast ~ Invisible Cancer
FC + Rituxan
Rituxan (rituximab), utilisé conjointement avec la Fludarabine et la Cyclophosphamide (FCR) est le premier traitement à montrer une amélioration de la survie globale chez des patients atteints de leucémie lymphoïde chronique, jamais traités auparavant. LienRituxan (rituximab) when added to fludarabine and cyclophosphamide (FC) is the first treatment to show improvement overall survival in patients with chronic lymphocytic leukemia, never previously treated. Link
Rituxan Funding Situation in Canada ~ November 2009
View Here
Fludarabine and Campath Funding in Canada
Click Here to ViewGenzyme Canada Medication Assistance Program
The maker of Campath and Oral Fludarabine, Genzyme Canada, has developed a program to help people find financial assistance to pay for their medication. This program is run in partnership with Shoppers Drug Mart Specialty Health Network.
For more information and an application form to Genzyme Canada in PDF format: CLICK HERE
CLLPAG is pleased to announce that we are now an Associate Member of the Canadian Cancer Action Network (CCAN).
